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11.08.2017 Serezha Katyshev
will come to St. Petersburg on August 19th.
A decision regarding bone marrow transplantation will be made. During
cyclosporine therapy his blood counts improved somewhat.
06.08.2017 After starting therapy with Jakavi,
Vadim Antipov's skin
improved, but he still suffers from GVHD of lungs. Vadim has severe
shortness of breath and it makes it difficult for him to walk. Other
than that Vadim feels relatively well and has been able to avoid
01.08.2017 Arina Baboshina's
stable condition allowed her doctors let her
go home in Arkhangelsk region for a month. In mid-August, Arina and
her mom will return to St. Petersburg for evaluation. At home Arisha
feels rather well and she loves to pick mushrooms in the woods and
play with her little brother.
28.07.2017 Misha Nikitin
is now at home in Tikhvin and he feels rather
well. His skin's condition is stable and he continues taking Jakavi
and Rapamune. However, recent tests showed increased sugar in his
blood. For now the doctors hope to keep him off insulin, and he was
prescribed medications for support of pancreatic function.
18.07.2017 At the end of April
Maxim Indik was allowed to go home to
Blagoveschensk. Based on evaluation results prior to his departure,
he has no disease progression. Maxim also had CT scan and MRI once he
got home, and the results are good.
17.07.2017 In May CT scan showed that
Maxim Matytsin had no progression.
Maxim is scheduled for the next control CT in September, and he
will not have chemotherapy till then.
Igor Simonov was hospitalized at Mechnikov Medical
University. The doctors offered him the following treatment: first,
surgery to decompress fractured vertebrae. Then in six months -
corset installation to strengthen his spine. After this stage is
completed, hip joint replacement can be discussed.
07.07.2017 Veronika Nikulina
remains moderately affected by myasthenic
syndrome, but it does not worsen. As the antibodies caused by
myasthenia are above norm, she continues receiving photopheresis
therapy and Mabthera injections. CT scan results showed improvement,
and Vfend was replaced by Noxafil. Veronika feels relatively well.
01.07.2017 Vadim Antipov
feels rather well although he has some
shortness of breath. He spends time mostly indoors to avoid catching
infections. He will be added Jakavi to his lung GVHD therapy with
inhalators. Based on test results done at Mycology Institute, he was
taken off antifungal drugs.
23.06.2017 Misha Nikitin
is now in Tikhvin. He feels well and awaits
the results of Russian language exams. Next week he plans to come to
St. Petersburg and apply for university.
Misha continues taking all prescribed medications. His skin GVHD is
very mild at this time.
21.06.2017 Arina Baboshina
is still in St. Petersburg. She is now
undergoing examination at Gorbacheva Institute. If all is well, she
will be allowed to go home for a month. Arina is still taking
immunosuppressive drugs in order to prevent the risk of transplant
rejection. Arina catches colds periodically, but other than that, she
17.06.2017 Misha Berezyuk
is currently at home in Gatchina, he is feeling well,
playing, walking, and getting ready to school. He continues to exhibit
mild chronic skin GVHD and GVHD of the eyes.
16.06.2017 In May Sergei Katyshev
came to Gorbacheva Institute for a
regular checkup and was immediately admitted due to very low blood
counts. He was treated with Atgam and Cyclosporine. Sergei is feeling
better now and was discharged to go home for a month and a half.
02.06.2017 Vadim Antipov
is undergoing evaluation at Institute of
Mycology. The doctors will consider whether to prescribe Jakavi after
all tests are back. At the moment Vadim is being treated for lung
GVHD with inhaled hormones. He feels rather well, although he still
runs out of breath easily.
01.06.2017 Igor Simonov
has been transferred to the City Hospital #2.
He needs a hip replacement surgery but the doctors must first attend
to his back. Because of compression fracture of his vertebrae, Igor
cannot stand up or sit up - he has to remain on bed rest.
23.05.2017 In mid-May
Misha Nikitin came to St. Petersburg for an
examination that confirmed remission from leukemia. The next puncture
is planned in 6 months' time. Misha still has moderate symptoms of
chronic skin GVHD, so the therapy with immunosuppressive agents
continues. Misha has returned home to Tikhvin and is currently
Sasha Novokreschenov came to St. Petersburg for a
check-up, which confirmed that he is in complete remission from
leukemia. He still has manifestations of chronic pulmonary GVHD.
However, thanks to therapy with inhalants (as well as swimming
sessions and playing the saxophone), the condition of his lungs has
improved significantly. Sasha is now at home in Karelia.
19.05.2017 The tests showed that
Movlid Tutuev remains in complete remission,
but has mild GVHD of lungs and eyes. Movlid is receiving local therapy
as inhalations and drops. Movlid and his mom will be going back
to Dagestan in a few days and will be expected back in 3 months.
18.05.2017 Veronika Nikulina
is monitored as a day patient at the
Gorbacheva Institute. She once again had elevated antibodies due to
myasthenia but MabThera treatment lead to a small improvement.
18.05.2017 Maxim Matytsin
had his fourth chemo. This time he felt very
sick and it took him a long time to recover. His blood counts started
going up only a couple of weeks ago. His appetite also came back
lately. Overall, Maxim is feeling rather well. He is finishing his first year
at the university and is now studying for the finals.
Vadim Antipov had his second immunoglobulin
injection. Since the beginning of this treatment in April he has not
had a single cold. He did not even catch the strep throat his child
had. Vadim is continuing treatment for his lung GVHD. The doctors
will consider Jakavi therapy after Vadim has a CT scan and sees a
04.05.2017 Igor Simonov
is still at the hospital No. 31. Unfortunately,
his lower body was paralyzed, so he has to stay in bed. Examination is
ongoing. Igor is receiving combination therapy to improve his blood
circulation. Suspected osteomyelitis (inflammation of bone tissue) is
17.04.2017 Vadim Antipov
is still at home. Thanks to immunosuppressive
drugs he feels better than previously. He has less cough, but the
shortness of breath persists. Vadim continues to breathe in oxygen,
do inhalations and take immunosuppressive and antifungal drugs.
13.04.2017 Veronika Nikulina
is continuing photopheresis. She already
finished 12 sessions. Veronika's myasthenic syndrome had subsided in
regards to mobility, but her facial expression remains somewhat
02.04.2017 German Efimov's
therapy continues according to the same
treatment regimen: immunosuppressant Rapamune and platelet-booster
Nplate. German feels rather well. Recent Nplate injection improved his
blood count. Gera spends his time mostly at home, studying under the school
curriculum, reading and playing.
31.03.2017 Between the cycles of chemotherapy,
Maxim Matycin was able
to recover and he feels better. His blood counts went up and the
stomatitis got resolved. Based on control tests, there were no new
metastases. Maxim is starting another chemotherapy cycle as an
27.03.2017 Misha Nikitin
is currently at home in Tikhvin. He feels
well and has no GVHD symptoms. He will be graduating from high school
this year and he is studying for the exams. In summer he plans to
apply for college in St. Petersburg. He is not yet sure about his
specialty, but it will likely be something in science.
26.03.2017 Maxim Indik
finished the last session of radiation therapy
on March 16th. His blood counts had dropped and have not started to
regrow yet, but he does not need blood transfusions. His liver
enzymes increased as well. Maxim feels rather well.
20.03.2017 Misha Berezyuk
had 180th day post-transplant biopsy that
confirmed remission. Recent inactivation of skin GVHD was quickly
taken under control. Misha is still at home in Gatchina and feels
well and energetic.
17.03.2017 Vadim Antipov
is currently living at home. Recently he
caught a virus which makes him run out of breath very fast. He can
barely walk. The doctors suspect lung GVHD, and for now Vadim is on
oxygen and is doing regular inhalations. He is also scheduled for
17.03.2017 Andrei Sharoglazov's
control puncture showed complete remission and 90-97% bone marrow engraftment.
The doctors are planning to let him and his mom go home to Krasnoyarsk region until
September. Andrei is feeling well.
16.03.2017 Veronika Nikulina
is being seen as a day patient and she
continues photopheresis therapy once every 2 weeks. Myasthenic
syndrome has subsided thanks to therapy. Veronika feels rather well.
14.03.2017 Maxim Matytsin
has been in complete remission for five years,
but two years ago the doctors diagnosed a relapse. The young man
underwent several operations for removal of pulmonary and bronchi
metastases, as well as radiation therapy. At present Maxim is under
the care of doctors from the day patient facility of Gorbacheva
14.03.2017 Igor Simonov
is undergoing evaluation at 31st Municipal
hospital. He had suspected chronic GVHD of his eyes and nose. In
addition, CT scan showed a lesion in thoracic spine, the nature of
which is being investigated. Igor cannot walk due to pains in his
thigh and has to use a wheelchair.
04.03.2017 German Efimov
is continuing therapy with immunosuppressive drug
Rapamune and injections of Nplate every 2-3 weeks. He is provided
with Nplate by Dmitry Malikov Foundation.
The testing at Gorbacheva Institute was moved to March. Gera is
currently undergoing specialist evaluation for his disability
27.02.2017 Misha Nikitin
came to St. Petersburg for planned evaluation.
The breathing tests showed significant improvement with pulmonary
function. It was decided to increase Jakavi dose. Misha feels very
well. Once he graduates from high school next summer, he plans to
move to St. Petersburg with his mom.
27.02.2017 Anya Lomonosova
has been undergoing evaluation in St.
Petersburg. She is doing well, except for mild GVHD of eyes. Her
skin and mouth are unaffected. CT scan showed spots in her lungs.
Additional tests are being done to determine their nature.
27.02.2017 Misha Berezyuk
remains at home in Gatchina, and he comes for
tests in St. Petersburg once a week. The tests continue to show
residual GVHD, and Misha stays on immunosuppressive drugs. Misha plays
with clay, draws, plays with his sister and goes out for sledding - a
very active lifestyle, overall.
11.02.2017 Due to another recent viral infection,
Vadim Antipov's last
round of Roncoleukin treatment had to be postponed. He received
immunoglobulin treatments to improve his immune system. He’s feeling
better now. His skin is in a stable condition. GVHD only manifests
through dry skin.
11.02.2017 Veronika Nikulina
was recently catheterized and is receiving
photopheresis treatments and Mabthera injections. Her myasthenic
syndrome is less pronounced. The cold is gone. Veronika is feeling
rather well and is studying.
11.02.2017 Maxim Indik
has been undergoing radiation treatments in St.
Petersburg since early February; he has a total of 30 rounds
scheduled. His blood counts are slightly low but generally within the
normal range. Maxim feels well.
30.01.2017 Misha Nikitin
is still at home in Tikhvin. He studies and
feels well. Misha continues having skin GVHD symptoms and stays on
Rapamune and Jakavi therapy. He will need to travel to St. Petersburg
for an evaluation in February.
28.01.2017 Arina Baboshina
is still seen at the day hospital; once a
week she goes for blood tests - the results are stable. She feels
well and doesn't get sick. Arina is now with her dad, and they go for
walks and study with a tutor to get ready for school.
27.01.2017 German Efimov
continues to receive the Nplate therapy (injection
every two to three weeks) and Rapamune. He feels rather well. German
enjoys his studies under the school curriculum. In the near future,
Gera will go for an evaluation at Gorbacheva Institute.
27.01.2017 Misha Berezyuk
is still at home in Gatchina. Twice a week
he travels with his mom to St. Petersburg for tests. The main blood
counts are now normal, and GVHD has been dormant. However, the tests
show high eosinophil count, which indicates presence of GVHD. Misha
feels rather well, he plays with clay and enjoys his younger sister's
25.01.2017 Anya Lomonosova
feels well and she will soon travel to St. Petersburg for evaluation and medications.
Her skin condition is stable, and she has no symptoms of mouth GVHD.
18.01.2017 Maxim Indik
completed two cycles of chemotherapy and he is
monitored as a day patient. His leukocyte count is increasing. Liver
enzymes are somewhat elevated. Starting next week, once blood counts
recover, the doctors plan to start radiation therapy.
14.01.2017 Veronika Nikulina
is monitored as a day patient. She still shows
signs of myasthenic syndrome. Overall, she is feeling better and
started walking more independently.
14.01.2017 Igor Simonov's
bursal abscesses are now gone but because of
the osteoporosis the doctors had to remove the metal vertebra
implanted last summer at the Vreden institute. Igor was discharged on
December 30. He is still at home and is feeling better. He remains on
10.01.2017 Prior to the New Year,
Vadim Antipov had flu, but he feels much better now.
The last course of Roncoleukin for GVHD treatment was postponed due to his illness,
and the treatment will be resumed shortly. Vadim does not have a noticeable
improvement in his skin condition yet. The doctors believe it will take several
months for effect to become pronounced.
27.12.2016 A repeat puncture proved that
Misha Berezyuk was in
remission and that donor bone marrow was engrafting well. His blood
counts were a bit lower and unstable, but they did not drop
considerably. GVHD did not manifest itself any more. At present Misha
is at home in Gatchina. He is looking forward to the upcoming
holidays, because he loves them very much.
27.12.2016 Misha Nikitin
is at home in Tikhvin. He is monitored by the
doctors from the local hospital. His blood counts are within normal
limits. Misha feels rather well, although skin GVHD persists. He will
celebrate the New Year with his family - his mother, grandmother,
grandfather, uncle and aunt.
23.12.2016 Anna Lomonosova
is at home in Saratov city. She doesn't have
any GVHD of the skin. The GVHD of her mouth has improved. The
condition of her eyes is gradually returning to normal. In late
January - early February Anna will go to St. Petersburg for the
21.12.2016 Arina Baboshina
is seen at day hospital and she feels well.
The doctors were ready to let her go home for the holidays, but
Arina's mother and Arina decided to stay in St. Petersburg for control
of immunosuppressive drug dose in the blood. Arina is preparing for
the New Year's eve - she is going to decorate the Christmas tree and
tries to decide what would she like as a Christmas present.
Ekaterina Polyubina has not been able to
achieve remission. She is now on pause from chemotherapy so that she
has a chance to recover. Her blood counts are low, except hemoglobin
that's at lower normal limit.
09.12.2016 Maxim Indik
finished the first chemotherapy cycle. His blood
counts have dropped. He will have the second cycle followed by
evaluation, results of which will help determine further treatment.
Maxim feels rather well and goes out for walks.
06.12.2016 Vadim Antipov
is undergoing therapy with Roncoleukin in his
local outpatient facility. This is the fifth week of the treatment,
which is planned to be finished by the end of December. There are no
visible changes of skin condition as yet. Vadim feels fine.
Misha Berezyuk's blood counts had dropped. His
doctors did not rule out the possibility that blood count drop was
caused by hormones that Misha took to control GVHD. His skin GVHD
manifests itself only slightly currently, so hormones were canceled.
Misha feels quite well. He is in remission.
04.12.2016 Sonia Egorycheva
remains at home, in Pskov, and is feeling
well. She's very excited to do school coursework with a teacher and
loves singing and dancing. Every ten days, the girl and her mother
travel to St. Petersburg, where Sonia undergoes tests - the results
are within norm. Sonia's Certican medication was covered by her local
01.12.2016 Andrei Sharoglazov
arrived to St. Petersburg for a check-up.
The puncture showed that he remains in remission, but the level of
bone marrow engraftment remains somewhat low. As a result, the
treating team decided to do another infusion of donor lymphocytes. If
everything goes well, Andrei and his mom will be allowed to go home,
to Krasnoyarsk Region, next week.
29.11.2016 In November
Misha Nikitin came to St. Petersburg for
another checkup. The results were good: he is still in remission and
his lungs are functioning well. He still shows signs of skin GVHD.
Ekaterina Polyubina did not reach remission.
She recently had another chemotherapy cycle and does not feel very
well. Once Ekaterina is in remission, she will have a bone marrow
transplant from her sister.
28.11.2016 About two weeks ago
Veronika Nikulina was hospitalized at Gorbacheva
Institute due to acute myasthenic syndrome that obstructed her breathing.
She is receiving necessary treatment.
26.11.2016 Arina Baboshina
is seen as a day patient. She recently had a viral infection, but she feels
OK now except for a bit of a runny nose. Arina studies with a tutor,
goes for walks with her mom, and watches cartoons
on her tablet with her mom's permission.
She continues taking anti-fungal medication.
25.11.2016 Anya Lomonosova
is at home. She is continuing to take Jakavi, Tacrolimus and Glivec.
Her eyes are gradually improving. She does not have skin GVHD.
The next evaluation is scheduled for January - February.
23.11.2016 On October 29th
Maxim Indik came to St. Petersburg for evaluation: it
has been 3 years since bone marrow transplant. Based on biopsy results,
he remains in complete remission. Unfortunately, Maxim was found to have a
lesion on his right leg. Based on histology testing, he was diagnosed with sarcoma.
22.11.2016 Based on
Gera Efimov's puncture results, donor's bone marrow
engraftment is normal, but cell count has gone down.
Nplate injections every 3 weeks allow maintaining platelet count at acceptable level.
Gera feels rather well and continues studuing under 2nd grade curriculum.
13.11.2016 Misha Berezyuk
is currently living at home, in Gatchina. His
parents bring him 2-3 times a week to the Gorbacheva institute in
St.-Petersburg for tests.
His blood counts are good. Next week he will have a control puncture.
Misha is feeling fine, although sometimes he gets a mild fever. His
skin GVHD is getting worse; the doctors have prescribed hormonal therapy.
12.11.2016 Igor Simonov
needs an emergency left hip replacement
surgery. The total cost of the replacement hip and the procedure is
251,350 roubles. We need your help!
12.11.2016 Movlid Tutuev
is undergoing his second cycle of
Vidaza-based preventive treatment. He is tolerating it well. The
doctors promised to let Movlid and his mom go home for a couple of
month after the completion of the therapy. After they return in
January Movlid will have a control puncture and the doctors will then
decide whether he needs further treatment.
07.11.2016 Veronika Nikulina
is seen as an outpatient of Gorbacheva
Institute. The girl feels better, myasthenic syndrome had subsided.
Cold has passed. Veronika is receiving appropriate treatment.
04.11.2016 Sonia Egorycheva
travels to St. Petersburg for testing twice
a month, and the last test included ultrasound and x-ray as well - the
results were normal. Possibility of a trip to Moscow will be decided
after the November holidays. Sonia is now at her home in Pskov. She
feels well and is an eager learner.
04.11.2016 Vadim Antipov
is at home and feels rather well. He is in
remission. Cutaneous GVHD is manifested moderately and there are no
flair ups, however, it has not improved much. It was decided that
several courses of treatment by Ronkoleukin should be offered. Therapy
is planned to start next week.
31.10.2016 It has been six months since
Arina Baboshina underwent
related bone marrow transplantation. Last week she had a control
biopsy that showed no signs of disease. Donor's bone marrow engrafted
and functions well. Recently Arina had a viral infection, but she is feeling OK now.
27.10.2016 Olga Shmygleva
had an examination in St. Petersburg in
October. The primary disease remains in remission. However, the
transplantation affected her kidneys and comprehensive treatment is required.
26.10.2016 Anya Lomonosova's
skin GVHD has almost disappeared, while
mucosa GVHD persists. Anya feels well. The next examination in St.
Petersburg is scheduled for November.
26.10.2016 Misha Nikitin
is at home in Tikhvin. He feels rather well
and continues to study. Misha plans to come for an examination in St.
Petersburg on November 15th. Misha will likely continue to take
Rapamune and Jakavi for treatment of GVHD.
21.10.2016 Control biopsy showed that
Movlid Tutuev is in complete
remission. However, due to a high risk of relapse, the medical team
decided to administer two rounds of maintenance chemotherapy with
Vidaza. The boy has already completed the first round. Movlid is now
seen as a day patient and he feels rather well.
20.10.2016 Misha Berezyuk
has recovered after the bone marrow
transplant and was discharged to the outpatient clinic today. The
blast levels are within norm, though the signs of the disease are
still at detectable levels. The bone marrow engraftment is proceeding
well, and Misha's blood counts are within norm. He is feeling fairly
well and is active.
18.10.2016 German Efimov
is still taking Nplate as necessary, and he
does not need platelet transfusions. His further treatment will be
discussed at a consult with Moscow experts. He is feeling fine and
enjoys his classes with his tutor.
18.10.2016 About a month ago
Veronika Nikulina developed muscle
weakness; she struggled to eat and to walk. After examination, the
doctors diagnosed her with myasthenic syndrome and prescribed
appropriate treatment. She is feeling somewhat better.
13.10.2016 Albina Ibragimova
is doing well: September's evaluation
showed that she remains in remission and donor's bone marrow functions
well. She feels rather well, but gets colds easily. Albina already
returned home to Kumertau. The next trip to St. Petersburg for a
checkup is scheduled for early March.
06.10.2016 Arisha Baboshina
is seen as a day patient. She receives
antibiotic therapy due to an intestinal infection, which has been
mostly taken under control. Her blood counts are good, and a control
biopsy was scheduled for the second half of October. Arina feels
rather well and studies with a tutor to get ready for school.
30.09.2016 Misha Berezyuk
is recovering after bone marrow
transplantation that took place on September 16. His blood counts are
low. The last few days he had persistent fever. Overall, Misha is
tolerating recovery well, but his appetite is affected by mucositis
and he was recently prescribed special nutrition.
28.09.2016 Ekaterina Polyubina's
checkup at the Gorbacheva Institute has
been re-scheduled to October 10. On October 8 Katya will fly to St.
Petersburg. Her blood counts continue dropping. As a result she got a
nasty cold with cough, sore throat and runny nose. She also has liver
pains, although her liver function tests are normal. The doctors have
suspended her Mercaptopurine treatment until she recovers from her cold.
28.09.2016 Sergei Nevzorov
had a checkup in St. Petersburg. The puncture
confirmed that he is in remission. He still has GVHD of skin and
mucosa, but it is improving with Jakavi.
27.09.2016 Misha Nikitin's
blood counts are normal, and skin GVHD is
moderate. Misha was recommended to continue the same medications
(Jakavi and Rapamune). Misha turned 18 on September 21st, and he will
transfer to Adult unit at the hospital.
26.09.2016 It has been 6 years since
Milana Kuzhenova's bone marrow
transplant. She came to St.Petersburg for a checkup which confirmed
remission. She still has scleroderma as well as joint stiffness
because of her skin GVHD.
26.09.2016 Movlid Tutuev
with his mom and his brother, who will be his
donor, have come to St. Petersburg. Donor's lymphocyte infusion will
be done after biopsy results are ready. At home Movlid developed cough
again. He sees a pulmonologist and receives necessary therapy. Eye
GVHD is practically gone.
19.09.2016 Anya Lomonosova
came to St. Petersburg for evaluation a week
ago. She is in remission in regards to primary diagnosis. GVHD of
her skin and mouth is receding, but about 6 weeks ago she developed GVHD of her eyes.
16.09.2016 Ira Grushevskaya
receives the same treatment as before along
with hormonal therapy. Throat hoarseness remains, with respiratory
function indicators unchanging. The visit to ENT doctor has been
postponed and Ira is currently under the observation of a pulmonologist.
15.09.2016 Veronika Nikulina
remains under observation at a day
hospital. Biopsy results show that all is fine. Veronika's lymph nodes
have swelled up and doctors are investigating the cause. Hepatic
enzymes are at previous levels. Skin GVHD persists. Lung CT scans
reveal insignificant changes which do not warrant a revision of the
treatment plan. Veronika feels rather well.
13.09.2016 The test results showed that
Katya Polyubina is in
remission. She received donor's lymphocytes and went home to
Cherepanovo on August 26. Recently, Katya's blood counts fell; she
will undergo a biopsy at her local hospital tomorrow. She plans to
come to Gorbacheva Institute on September 19.
12.09.2016 Sonia Egorycheva
is still at home, in Pskov, but she travels
twice a week to St. Petersburg for blood tests. She will also travel
to Moscow in the near future for control tests and a consult with a
transplantologist. Sonia is feeling well, is active and spends a lot of time playing.
This year she started first grade at school.
12.09.2016 Misha Berezyuk
is scheduled for a bone marrow transplant on
September 16. Russian Aid Fund paid for the donor search in the
international donor registry. Misha is already in the hospital,
receiving pre-transplant chemotherapy; he is tolerating it reasonably
well, though his appetite is low because of nausea.
08.09.2016 Sergei Nevzorov
will arrive to St. Petersburg on September 12
for evaluation. His GVHD of skin and mouth has improved. However, he
continues suffering from severe joint pain. He may need a joint
replacement surgery soon.
07.09.2016 German Efimov
spent almost entire time he was in Tyumen in the
hospital: he developed several viral and bacterial infections at the
same time. German overcame his infections by now, and he recently
returned with his mom to St. Petersburg. Gera feels rather well, but
he is upset to have missed the first day of school celebration.
03.09.2016 Arina Baboshina's
donor bone marrow engraftment fluctuates
between 90% and 97%, and she cannot go home yet. The doctors decided
to monitor the dynamics. Her blood counts are within normal limits.
She feels well, but she has not yet recovered fully after tonsillitis.
02.09.2016 Misha Nikitin's
therapy with Jakavi and Rapamune produces
good results; his skin GVHD is much less apparent. Next week he has to
go to Gorbacheva Institute for an evaluation. At present he is at home
in Tikhvin. Misha feels well and is very active. He spends a lot of
time outdoors and makes plans for the future.
02.09.2016 The doctors let
Movlid Tutuev go home to Dagestan for a
month. On September 18 he will return to St. Petersburg with his
brother, as doctors plan to harvest donor's lymphocytes. At home
Movlid caught a flu; now he feels better, but coughing is still rather
strong. However, this does not keep Movlid from playing with his friends.
31.08.2016 The results of
Maria Shashkova's puncture from 100th day
post-transplant are not yet ready, but judging from stable blood
counts, bone marrow engrafted successfully and functions well. She is
now at home in Ivangorod, and she feels well. She is able to work
around the house and spend time with her kids.
28.08.2016 Misha Berezyuk
received a new diagnosis of myelodysplastic
syndrome (Misha remains in remission from leukemia). He received two
cycles of therapy with Vidaza, but he also needs another bone marrow
transplant for full recovery. It is being planned for the nearest future.
25.08.2016 Veronika Nikulina
is seen as a day patient at Gorbacheva
Institute. Her liver enzymes are still elevated, but are no longer
increasing. She still has skin GVHD, especially on her feet, and it
causes a lot of pain for Veronika. She may be referred for photopheresis.
17.08.2016 Katya Polyubina
is receiving anti-relapse chemotherapy and
will soon have donor's lymphocyte infusion. Katya does not feel very
well due to fatigue, headaches and nausea.
12.08.2016 Sergei Nevzorov
came to St. Petersburg, and on July 28 he
returned home, to the Vologda region. His blood counts are normal, and
GVHD of mucosas is almost gone. Sergei feels well, but his legs still hurt.
11.08.2016 Anna Lomonosova
is at home, in Saratov. The GVHD of mucosas
is getting better with the treatment. Anna takes Jakafi and
Tacrolimus, as well as anti-viral medications. She feels well.
11.08.2016 Ira Grushevskaya
continues to receive the same treatment.
However, her voice recently turned hoarse, and the doctor increased
the dosage of hormonal medication and prescribed more frequent
inhalation with Pulmicort. Ira's kidneys continue to hurt. Otherwise
Ira feels rather well.
09.08.2016 Movlid Tutuev
finally had a control puncture that confirmed
remission and complete engraftment of the donor's bone marrow. No
evidence of minimal residual disease was found. However, there is a
high risk of CNS leukemia, so this week he was scheduled for a sternal
puncture with simultaneous introduction of the chemotherapeutic agents.
09.08.2016 In July
Arina Baboshina was hospitalized at Gorbacheva
Institute with a sore throat, accompanied by high fever. She spent two
weeks in the hospital, and now she is back to the treatment at the day
clinic. She did not have a biopsy on day 100 after bone marrow
transplantation, but judging by the results of the previous one,
donor's bone marrow engrafted and works well.
05.08.2016 German Efimov
feels rather well and his skin GVHD symptoms have subsided, while his blood
counts are pretty good thanks to Nplate therapy. His doctors decided to
postpone Mabthera therapy and return to considering it in fall, after bone
marrow biopsy. For now, Gera and his mom traveled home to Tyumen for
monitoring by local hematologists.
04.08.2016 Sonia Egorycheva
will undergo control testing in
Saint-Petersburg and travel to Moscow only for ultrasound scans and
transplant specialist consultations. All seems well for now with Sonia
as she continues her course of treatment. Sonia is now at home in
Pskov, is recovering quickly and feels alright. The young girl has
boundless energy and wants all that is interesting. Her mother has not
seen her like this for a long time.
04.08.2016 Misha Nikitin
has is at home in Tikhvin under the observation
of local specialists and is continuing his GVHD treatment with Jakafi
and Rapamune. His skin has improved - it has softened. He is due to be
hospitalised for his checkup at the Gorbacheva Institute on 8
September. Misha feels well. He is very active, and cycles and takes
04.08.2016 Maria Shashkova's
leukemia has remained in complete remission
and the donated bone marrow has taken and is working successfully. As
before, Maria remains under the observation of Leningrad Oblast
Clinical Hospital. She is steadily regaining her strength with each
passing day. She spends most of her time at the dacha taking walks and
taking in the fresh air.
03.08.2016 Veronika Nikulina
continues her treatment. Her blood counts
are good, but her liver function tests remain elevated. She also has
pain in her stomach and her legs. Veronika gets tired very fast, with
some days better than others.
03.08.2016 Oksana Nosik
is at home. Her next appointment with the
cardiologist in Moscow is scheduled for late August. After that she
may have another appointment in St. Petersburg that will determine her
further treatment. In general Oksana is feeling fine, although her knees bother her.
27.07.2016 Andrei Sharoglazov
remains in complete remission from
leukemia, although after the first infusion of donor's lymphocytes the
percentage of bone marrow engraftment stayed the same. On July 18th
be received another infusion of a larger dose of lymphocytes. The plan
is for Andrei to be released to follow up by hematologists in
Krasnoyarsk until November. Andrei feels well.
12.07.2016 Sergei Nevzorov
will arrive to St. Petersburg on July 19
for examination. His blood counts and liver enzymes are normal,
however, GVHD of mucous tissues still manifests itself. Sergei suffers
from joint pain, caused by necrosis of the femoral heads. In general,
he feels fairly well.
11.07.2016 Arina Baboshina's
blood counts are normal, only platelets
still run low. In late July, on 100th day after bone marrow
transplantation, she will do control spinal tap. She has no signs of GVHD.
06.07.2016 Movlid Tutuev
is still waiting for control puncture, as it
took longer than expected to apply for a quota. He is seen at
Gorbacheva Institute. His blood counts are good and he feels well.
Movlid does not have skin GVHD symptoms at the moment, but 2-3 weeks
ago he had a flare up of eye GVHD, which is being treated.
04.07.2016 Recently Anya Lomonosova
traveled to St. Petersburg for evaluation. She is in complete remission in
regards to her primary diagnosis, and her blood counts are normal.
During an unintended interruption in Jakavi intake, her GVHD of mouth worsened,
but as soon as she restarted therapy, her condition improved.
30.06.2016 Unfortunately, in April
Ekaterina Polyubina's leukemia
relapsed. At the end of April Ekaterina came to R. Gorbacheva
Institute for a course of chemotherapy and infusion of donor's
lymphocytes. She had since been allowed to go home to Novosibirsk
region. As soon as Ekaterina's blood counts are back to the normal
limits, she will return to St. Petersburg for another injection of
30.06.2016 Last week
Sonia Egorycheva was discharged from the hospital
and she is now at home in Pskov. Once a month she has to come to
Moscow for a transplant specialist examination. Sonia feels well and
she is much more active then before.
29.06.2016 Misha Nikitin
continues GVHD treatment. His skin condition
improved, while his joints, after scleroderma, do not function
properly yet, but Misha continues to work on them and already can walk
(even run!) unassisted. Misha is now at home in Tikhvin. In the
middle of July he will have an appointment with a specialist of R.
29.06.2016 Maria Shashkova
is seen by doctors from the day patient
facility of Leningrad Regional Clinical Hospital. She has her blood
samples taken twice a week - her blood counts are growing slowly. She
is in remission. The donor bone marrow engrafted and functions
properly. Overall Maria feels well, although she still experiences
weakness and has a febrile fever from time to time.
23.06.2016 Arina Baboshina
has been under observation on an outpatient
basis for the last two weeks. Her blood counts are not yet within the
norm, but keep growing slowly and steadily. She doesn't have any
symptoms of GVHD or infections. Arina takes walks, draws, and is
feeling OK overall - about the same as before the transplant.
22.06.2016 June's lumbar puncture confirmed
Anton Gasnikov's remission;
the next evaluation is scheduled for August. Until then Anton will
continue maintenance treatments with Sprycel and lumbar punctures to
prevent CNS leukemia. The boy is feeling fine.
22.06.2016 Veronika Nikulina's
intestinal and skin GVHD stabilized, as have her
liver enzymes. Her hemoglobin has gone down, while her leucocyte count
is increasing, though is has not yet reached the norm.
21.06.2016 The doctors decided to administer
German Efimov another round of
Mabthera. For now, the boy continues the therapy according to the
same schedule: Nplate injections every three weeks. German reads
voraciously, studies multiplication tables, and continues English
lessons with a volunteer. Overall, German's mood is good, though he
often feels sluggish because of his low hemoglobin levels.
14.06.2016 On June 17th
Sergei Nevzorov will be discharged from the
hospital for a month. He is in remission, the bone marrow transplant
was successful and is working. Blood counts are normal; liver enzymes
are approaching normal levels.
14.06.2016 Oksana Nosik
spent two months in Ukraine to take care of
personal matters; she is now back home in Moscow region. She is
scheduled to undergo evaluation as well as see a hematologist and a
cardiologist in Moscow at the end of June. Oksana is feeling well.
14.06.2016 Ira Grushevskaya
suffers from kidney pains and sinus infection.
She is receiving appropriate therapy. Her blood counts are normal,
except for elevated leukocytes.
10.06.2016 The five year post-transplant exam confirmed that
Elena Plis remains in remission.
10.06.2016 Movlid Tutuev
is still monitored at the Gorbacheva institute. He is feeling well and
remains active and cheerful. His blood counts are normal and he currently
shows no signs of GVHD. The control puncture is scheduled for late June.
08.06.2016 Sonia Egorycheva
has recovered after the kidney transplant.
Her catheter has been taken out. Her creatinine levels are lower and
she is now feeling better. Sonia has much more energy now: she wants
to stay active and run around. She really wants to go home and if all
goes well the doctors promise to discharge her soon.
01.06.2016 Veronika Nikulina
continues to be seen as a day patient.
Unfortunately, her skin GVHD worsened and she was prescribed
appropriate therapy. Veronika's blood counts are normal, except for
elevated leukocytes and liver enzymes. Intestinal GVHD had mostly
subsided thanks to Jakavi therapy. Overall, Veronika feels rather well.
18.05.2016 Two years ago
Misha Nikitin had a skin GVHD flare-up. In
just a month, it transitioned to a severe type, and Misha lost a lot
of weight, could no longer walk and had to start using wheelchair.
Since then he has been treated with photopheresis and
immunosuppressant Jakavi. His condition is gradually improving.
17.05.2016 Anya Lomonosova
is now at home in Saratov. She was
prescribed Jakavi as a treatment for severe GVHD of mucosa. She is
already showing improvement after the first cycle. Anya is feeling
fine. She is in remission (she had a control puncture in March) and
her blood counts are normal.
17.05.2016 April puncture showed that
Movlid Tutuev has no minimal
residual disease. He has no signs of skin GVHD and his bacterial
infection is getting better. Movlid is feeling fine but still has no
appetite. He continues his lessons with his tutor and sometimes goes
outside with his mom.
16.05.2016 Finally, a decision was made to proceed with
Sonia Egorycheva's kidney transplant.
Tomorrow Sonia and her mom will go to Shumakov Center in Moscow.
It should take about a week to prepare for transplantation.
Sonia feels rather well, but she is a bit apprehensive
about impending transplantation.
12.05.2016 Today is
Arina Baboshina's 23rd post-transplant day. Her
blood counts started to increase, but she still needs platelet
transfusions. During recovery, Arina lost a bit of weight, but overall
she feels OK, and today she was allowed to go outside for the first time.
10.05.2016 Veronika Nikulina
continues taking Jakavi and Montelar, with
the latter medication dose being reduced due to improvement in her
lung condition. Although skin and intestinal GVHD symptoms remain,
they are much less pronounced.
Nikita Grischenko's leukemia is advancing. The
boy has returned home to Krasnodar Region for palliative care. At the
moment Nikita is at home; he receives supportive therapy in pills and
is feeling satisfactorily.
29.04.2016 Sonia Egorycheva
is at Children's Hospital #1. She's waiting
for an isolation room to free up at the Shumakov Federal
Transplantation Center in Moscow, to receive a kidney transplant from
her mother. This is likely to happen in mid-May. Sonia is feeling
29.04.2016 German Efimov
is still seen as a day patient and about every
two weeks he receives Nplate to raise his platelets. Lately, his skin
GVHD worsened, and change of therapy is planned. Gera continues
following school curriculum. When the weather is good, Gera and his
mom go out for walks.
28.04.2016 A donor for
Maria Shashkova was found. She is now seen at
Leningrad Regional Oncology hospital. She remains in remission, and
her counts stay normal with help of colony-stimulating factors. After
the May holidays she is scheduled to be hospitalized at Gorbacheva
Institute. The preliminary date for transplantation was set for May 25th.
28.04.2016 Sergei Nevzorov
is in remission, and donor's bone marrow
works well. The blood test is fine, except hemoglobin is a little bit
low. Sergei still has a problem with GVHD of the skin, mucosa and
liver. Despite complications, Sergei is in a good mood. Thanks to
treatment he began to feel better.
28.04.2016 Irina Grushevskaya
with his mother returned to St.
Petersburg in April. Lung examination showed the improvement, and
hormonal threatment is gradually being phased out. However, Pulmicort
inhalations should be continued until the end of summer. Ira feels
well, she continues her studies according to the school program.
25.04.2016 Glasha Kirillova
is doing OK and she feels well. She is in
complete remission. Glafira is already 4 years 3 months old. She grew
up and changed quite a bit: she became active, talkative and curious.
Most of the time she is at home with her mom, but she loves to go for
walks and ride a bike in the park.
22.04.2016 Galina Kazakovtseva
had a medical exam which showed that she
was partially responding to the chemo. For the next two months she
will be taking Revlimid and low doses of hormones. Galina is now at
home. She has a bad cold and is not feeling that great, although she
started getting a bit better lately.
21.04.2016 On April 19
Arina Baboshina had a bone marrow transplant
from her brother. Yesterday Artem was discharged, while Arina is
facing a long recovery period. After the chemo Arina lost her
appetite. She is fussy and very picky, but otherwise feels rather
19.04.2016 Movlid Tutuev
is now in St. Petersburg. He is in remission,
and a test result for minimal residual disease is not yet ready.
Movlid is seen as a day patient and he feels satisfactorily. He still
has skin GVHD and recently he lost appetite and was also diagnosed
with a bacterial infection. He is receiving appropriate therapy.
18.04.2016 Galina Gavrilova
tore a ligament on my leg, then she had a
blood clot removed, which led to her stay in intensive care with
pneumonia. After a discharge, Galina again pulled a hand ligament.
She suffers from unavailability of free medications, even under a
federal program, and needs help.
15.04.2016 Arthur Matveev
remains in remission. His blood counts are
normal, with the exception of unstable hemoglobin levels - a reaction
to hormone therapy. He is now at home and feels great.
15.04.2016 Veronika Nikulina's
condition is improving with Jakafi
treatments; she has fewer signs of scleroderma. She continues to have
minor gastrointestinal and skin GVHD. Veronika is feeling rather well.
01.04.2016 Arina Baboshina
and her brother Artem are being evaluated
before related bone marrow transplant. Most likely, Arina will be
hospitalized at Gorbacheva Institute already next week for
pretransplant chemotherapy. Both Arina and Artem feel well.
31.03.2016 Gera Efimov
is undergoing control tests in Gorbacheva
Institute. The puncture showed a good functioning of bone marrow. All
the lineages are present and functioning. Gera's platelets, however,
are still unstable and they have to be maintained with Nplate
injections. Gera is seen at the day hospital; he feels quite well.
30.03.2016 Ira Grushevskaya
is in Khabarovsk region. At the end of the
week she will fly back to St. Petersburg. The genetic test results
will be in by then; they will help the doctors to verify the diagnosis
and to determine the treatment strategy. Ira feels rather well overall.
28.03.2016 Maria Shashkova
is in remission. She receives weekly
maintenance chemotherapy at the regional hospital. Maria feels rather well.
27.03.2016 Galina Zhikhareva
continues receiving maintenance therapy.
She is in remission and her blood counts are good. Although Galina
complains of dizziness, nausea and fatigue during therapy, she feels
OK overall. Also, she had an addition in her family: on March 6th her
son had a daughter!
25.03.2016 Today is Movlid Tutuev's
birthday. He is turning 8. To his
great joy he celebrates it with his family in Dagestan. His doctors
let him go home for two weeks. In the beginning of April he will have
to return to St. Petersburg. Movlid is in complete remission of the
disease. Skin GVHD still appears, but it is possible to keep it under control.
24.03.2016 Veronika Nikulina
continues taking Jakavi. She still has residual intestinal GVHD.
Unfortunately, she developed scleroderma, a complication that makes
it difficult to move her arms. Veronika is receiving appropriate therapy.
In March she will have control tests.
24.03.2016 March examination confirmed
Andrei Sharoglazov's complete
remission; however, donor's bone marrow engraftment rate decreased to
90-95%, and it was decided to perform donor's lymphocyte infusion.
Tomorrow Andrei with his mother will go back to the Krasnoyarsk
Territory. Andrei feels great; he is active, runs and plays.
22.03.2016 Galina Kazakovtseva
recovered from complications. Tomorrow she plans to
see her treating doctor regarding the need to continue chemotherapy.
Galina is now at home and she feels OK, except for bone aches.
She is not taking antifungal medications at this time.
22.03.2016 AdVita Foundation initiated fund-raising
for the treatment of Maria Shashkova.
Nikita Grischenko had another relapse of CNS
leukemia. Nikita is receiving triplets of intensive chemotherapy 2-3
times a week. Once his cerebrospinal fluid clears of cancer cells, he
is planned to receive an injection of donor's lymphocytes. He feels OK
overall, except for lost appetite due to therapy and periodic mood swings.
14.03.2016 It was decided to switch
Sonia Egorycheva to hemodialysis
and raise the kidney transplantation question again. Sonia and her
mother came for treatment to the Childrens City Hospital #1 in St.
Petersburg, since this treatment is not available in Pskov. They need
to rent an accommodation next to the hospital. The Shumakov Center in
Moscow is prepared to do the kidney transplantation from Sonia's
mother. They are working on scheduling the date for the transplantation.
14.03.2016 Anton Gasnikov
is continuing the same treatment regiment as
before: elevated doses of Sprycel and a lumbar puncture with
chemotherapy injections once every 2 weeks. Recently he is not taking
the treatments well due to the toxicity of the drugs. A control
puncture is planned for tomorrow - it may help understanding whether
the chromosomal damage has been corrected.
10.03.2016 Due to viral infection,
Arina Baboshina's bone marrow
transplant from her little brother was postponed. She recently
recovered and had a pre-transplant evaluation, but then came down with
another virus. Once the virus is cleared, she will be ready for the
transplant. Arina feels fine.
Natalia Alexakhina once again suffered
extramedullary relapse of leukemia. She has been admitted to the
Leningrad Clinical Regional Hospital and will be starting chemo next
week. She feels unwell and stays in bed.
09.03.2016 Oksana Nosik
is still residing in Moscow suburbs. She feels quite well and sees the
specialists in Moscow (a hematologist and a cardiologist), and continues
to take Volibris for pulmonary hypertension. She is looking for a job in
her home town, but has not had much luck yet.
03.03.2016 Gera Efimov
is still seen as an outpatient and once a week he
receives Nplate injections. He will soon have complete evaluation.
Skin GVHD still manifests itself, becoming more acute when German's
blood counts drop. He feels rather well, but lately it has been
difficult to talk him into visiting the hospital for procedures.
29.02.2016 Due to Influenza quarantine at Gorbacheva Institute,
Irina Grushevskaya's lungs have not been examined
for a long time, however, judging by how she feels there is no indication
of any health decline. She feels well and continues studies with tutors
who come to her home.
29.02.2016 Following the resumption of therapy with Jakavi,
manifestations of intestinal GVHD have decreased and
Veronika Nikulina's temperature also has went down.
She is observed as an outpatient of the hospital and feels
rather well overall. However, she does not have much energy and gets
very tired after visits to the hospital.
24.02.2016 Movlid Tutuev
is in remission; donor's bone marrow has
engrafted and is functioning well. Signs of the skin graft-versus-host
disease had recently intensified and hormones have again been
prescribed. Recently Movlid was hospitalized in the clinic with a
severe nausea caused by an intoxication. He feels much better now and
will be discharged to the day hospital today.
24.02.2016 Galina Zhikhareva
continues to receive maintenance therapy
in tablets (she is now on the 4th cycle), and she feels better. Based
on the results of January's puncture, Galina's remission for leukemia
persists, her blood counts are good, and only the level of white blood
cells is reduced due to therapy.
20.02.2016 The doctors postponed
Galina Kazakovtseva's 10th round of
chemotherapy due to flu quarantine. The round finally started on
February 17, but had to be interrupted because Galina contracted a
viral respiratory infection. At the moment Galina is at home; she is
receiving anti-viral treatments and is not feeling very well.
20.02.2016 A week ago,
Mikhail Fufaev was admitted to a local hospital
due to a worsening liver GVHD. His leg pains also bother him. Mikhail
is receiving supporting therapy, but is not feeling well overall.
19.02.2016 Unfortunately, the tests in December discovered that
Nikita Grischenko had a relapse of CNS leukemia.
In January he received a cycle of high-dose chemotherapy.
He is now undergoing therapy with medications injected via lumbar puncture.
He feels rather well.
10.02.2016 Masha Kutsenkova
is at home in Abakan. She is not feeling
very well at the moment. Unfortunately, her disease has progressed and
her scleroderma symptoms persist. Masha is planning to travel to St.
Petersburg at the end of the week for an examination and possible
Anton Gasnikov was diagnosed with CNS
leukemia in December. The chromosomal abnormality (Philadelphia
chromosome) has been detected once again. He is receiving chemotherapy
through a lumbar puncture, as well as an increased dose of Sprycel.
Anton is not feeling very well at the moment, but is continuing his
studies with the help of his teachers.
05.02.2016 In March 2014
Arina Baboshina's brother Artem was born. He is
a complete match for her as a donor. Artem is now almost 2, and the
doctors from Gorbacheva Institute believe that his stem cells can now
be harvested. Arina's bone marrow transplant from her brother is
scheduled for February, and she is now being prepared for it.
30.01.2016 Oksana Nosik
is still living near Moscow and sees the
specialists in Moscow. She will visit a hematologist in the near
future. She feels rather well overall and tries to stay positive.
Oksana is looking for a part-time job.
29.01.2016 Arthur Matveev
is seen at Gorbacheva Institute and he feels
much better. The polyneuropathy is bothering him less and the pain in
his legs has subsided. His appetite is better, as stomach graft versus
host disease is under control and the doctors are gradually reducing
the hormone medication dosage. Arthur is in remission. Donor's bone
marrow had fully engrafted and works well.
28.01.2016 After Gera Efimov
received three injections of Nplate, the
platelet count began to grow and his nosebleeds have stopped. The
doctors decided to stop this drug temporarily and watch the blood
count. Gera feels rather well and studies the first grade curriculum.
25.01.2016 Movlid Tutuev
is seen at a day patient facility; he feels
well and is active and energetic. The leukemia is still in remission,
and the donor's bone marrow is completely engrafted and working. Test
results for minimal residual disease are not ready yet. Recently,
Movlid had symptoms of acute cutaneous GVHD, but thanks to the
hormonal therapy it was taken under control.
25.01.2016 A week ago,
Galina Zhikhareva started the fourth cycle of
maintenance chemotherapy in pills. She doesn’t take treatment very
well and complains of severe nausea and weakness. Today, she spent the
day in bed. Results of the last puncture are not ready yet, but
judging from the previous one, remission persists, and blood counts
are within the normal range.
21.01.2016 Artem Vostrikov
feels rather well. His blood counts are normal and he is in remission.
In late January - early February he is planned to have an evaluation,
the results of which will help determine whether he will need
further maintenance therapy.
11.01.2016 In December,
Irina Prikhodko came to St. Petersburg for the
scheduled tests. She is in remission for leukemia. The condition of
her joints is stable, and surgery is not in the plans for now. Irina
is currently at home in Murmansk region, where she spent holidays with
25.12.2015 Oksana Nosik
still lives near Moscow and visits a breast
specialist and a cardiologist. Therapy with Volibris for pulmonary
hypertension has had effect: Oksana feels better although she still
has shortness of breath after exertion. She is saying hi and thanks to
all her favorite doctors in St. Petersburg and everyone who follows
her story and helps her with the words and deeds.
24.12.2015 Movlid Tutuev
recovered after bone marrow transplant and
was discharged for outpatient follow-up. His blood counts are normal,
and as usual, Movlid is active, he jumps and runs around. Control
puncture showed remission and complete engraftment of donor's bone
marrow; however, there are minimal residual disease symptoms. CNS
leukemia and a viral infection are also suspected. The decision
regarding further treatment will be made after additional tests.
22.12.2015 Ira Grushevskaya's
lung condition remains the same. Her
doctors suppose that it is not due to GVHD but to a late onset of a
rare congenital disorder - pulmonary diskeratosis. Clinical tests that
allow to prove or disprove this are unavailable in Russia, therefore
an examination abroad is planned. Ira continues photopheresis therapy for now.
22.12.2015 Veronika Nikulina
is being seen as a day patient. She does
not feel too well, as skin GVHD has flared up again, followed by
systemic scleroderma involving arm joints. Veronika receives
immunosuppressive therapy. She is in a good mood despite the
complications. When she is not in pain, she is happy. She takes
pleasure in studying and goes for walks sometimes.
22.12.2015 Galina Zhikhareva
is in remission from leukemia. She
currently receives maintenance chemotherapy in tablets and also needs
to continue taking antifungal agents. Galina is at home now and feels
rather well on the whole.
22.12.2015 Albina Ibragimova's
examination testified to a remission and
good donor bone marrow engraftment. Based on this, her doctors allowed
her to go home to Bashkortostan. In mid-January, she is due to return
to St. Petersburg for a check-up. Albina feels rather well.
24.11.2015 The doctors were able to get
Arthur Matveev's GVHD under
control. The last two weeks Arthur has been seen as a day patient.
Lately he had lost 25 kg, and was prescribed special nutrition and
pills to stimulate appetite. In addition, due to side effects of the
medications he had hemorrhage in both eyes. His vision is improving gradually.
23.11.2015 Gera Efimov
is continuing Nplate therapy. An injection is
currently effective for about 3 weeks. He had recently had
exacerbation of skin GVHD and immunosuppressive therapy dose was
German feels rather well and continues his studies at the 1st grade.
23.11.2015 Unfortunately, despite maintenance therapy with Vidaza,
Movlid Tutuev had leukemia relapse.
On November 16th he received bone marrow transplant from his partially matching brother.
19.11.2015 Veronika Nikulina
remains in complete remission and donor's
bone marrow engrafted well. The last three weeks she has been seen as
a day patient and treated for catheter infection and mild intestinal
GVHD. She feels relatively well and continues studying with a tutor.
19.11.2015 Galina Zhikhareva's
blood counts have not yet recovered
after the chemotherapy cycle that was completed a month ago. She
feels OK overall, but still has weakness and shortness of breath.
Further treatment is being discussed. Noxafil therapy has been paused.
17.11.2015 Oksana Nosik
is under care of a cardiologist and
hematologist in an outpatient clinic. She lives with her relatives in
the Moscow region; she is feeling better now and not only moves
without help inside her flat but also goes around the city. Oral
maintenance chemotherapy has not been restarted yet: it is necessary
to restore the heart function first. The treatment for pulmonary
17.11.2015 Mikhail Fufaev
is being examined at Leningrad Regional
Clinical Hospital. Last few days he had fever and symptoms of
reactivation of liver GvHD. In addition, ultrasound and CT scans have
revealed a tumor in the left part of his abdomen. His next treatment
depends on the biopsy results.
17.11.2015 Ira Grushevskaya
is under care at the Gorbacheva Institute
and is waiting for the next photophoresis treatment, which has been
scheduled for the beginning of December. The girl receives oxygen and
hormones, without getting any improvement in her lung activity.
16.11.2015 Albina Ibragimova's
blood counts are good, though platelet
count is slightly lower. Today she had control puncture and, if
remission is confirmed, doctors promise to let her go home for a
month, until the next evaluation. Albina feels well.
12.11.2015 Tema Vostrikov
remains in remission from leukemia, but due
to being in high risk group, from July 2014 to March 2015 he received
maintenance therapy with Dacogen. Currently, this therapy is being
considered again. Artem feels rather well, takes singing classes and
enjoys going to the theater.
08.11.2015 The last few months
Misha Stepanov was receiving supporting
therapy at Children's hospital No.1. During this time he was moved to
ICU several times, but the doctors were able to stabilize him.
Unfortunately, yesterday Misha's heart stopped and he was put on a
ventilator. Today Misha passed away.
27.10.2015 Fortunately, Valera Afanasiev's
suspected secondary lymphoma, was not confirmed. However, he was diagnosed with kyphosis
and severe scoliosis during examination. He needs to wear a special
back brace. At present Valera is at home in Krasnodar with his mother.
He feels rather well and gets good and excellent grades in school.
26.10.2015 Masha Kutsenkova
is now ay home in Abakan. Puncture
results confirm remission, and a lesion in her brest has gotten
somewhat smaller. She continues maintenance therapy recommended by
Gorbacheva Institute specialists. Masha does not feel too well, as
she still has fatigue, shortness of breath and skin GVHD.
26.10.2015 In the beginning of October
Arthur Matveev was hospitalized
at Gorbacheva Institute with acute stomach HVGD. Hormonal therapy
helped to improve his condition. He started eating a bit, regained an appetite, and the
nausea improved. Leukemia is in remission. The donor's bone marrow
engrafted completely and functions properly.
26.10.2015 In the beginning of October
condition worsened again and she was diagnosed with a stroke. Now
Nadia has to recover from the stroke and afterwards further treatment
plan will be finalized. Nadia’s family is very grateful to all caring
people, who feel concern for their child and who helped them in time of need.
20.10.2015 German Efimov
is continuing maintenance therapy with Nplate. He receives injections
every two weeks, depending on his platelet count. At this time,
the medication is paid for by a corporate sponsor, Lenenergo.
Gera feels well and goes to school.
19.10.2015 In May
Galina Kazakovtseva's disease began progressing again,
and she resumed chemotherapy with Velcade and Revlimid.
To prevent a recurrence of fungal infection, she was prescribed Vfend.
Galina has already finished six cycles of chemotherapy and control tests,
and she is awaiting the results.
14.10.2015 Oksana Nosik
is for now at the hospital in Moscow, but her condition had improved.
Most likely, she will be discharged soon for outpatient follow-up.
She is continuing to take medications for pulmonary hypertension.
12.10.2015 Unfortunately, following radiation therapy,
Levon Karagezyan developed severe pulmonitis,
and now must remain on
constant oxygen therapy. To be discharged from the hospital, Levon
urgently needs a stationary oxygen concentrator with an oxygen tank
filling station. The set recommended by doctors costs around 300,000
rubles. Please help!
12.10.2015 Mikhail Fufaev
felt fine until August: was leading an
active lifestyle, and even started a new job. But two months ago his
condition worsened. He is now undergoing photopheresis for liver GVHD
at Gorbacheva Institute, and receiving treatment for neuropathy and
trombophlebitis. His liver condition has improved, but Mikhail is not
feeling so well at the moment and he has a hard time walking.
08.10.2015 Sasha Tkach
is being seen as an outpatient at Children's
hospital No.1. His blood counts are improving: hemoglobin count is
already up to 143. The tests in September confirmed full engraftment
and good functioning of donor's bone marrow. Sasha feels rather well,
except for periodic fatigue. He has no GVHD or infection symptoms.
Sasha goes for walks and studies at home.
05.10.2015 Natalia Alexakhina
underwent three rounds of radiation
therapy at Therapy & Diagnostics center. She is now at home where she
is resting and recovering. She is feeling much better already: she
can sit down and got her appetite back. Recent evaluation showed that
the tumor in her cerebellum shrank to one third of previous size.
Control tests (MRI and CT scan) are planned in two months.
30.09.2015 Tomorrow will be
Albina Ibragimova's 100th day since bone
marrow transplant, and control tests are planned. Albina is followed
as an outpatient and she continues treatment for complications.
Overall, she feels rather well, aside from residual weakness, but she
tries to strengthen her muscles by exercises and walking.
22.09.2015 Arthur Matveev
had recovered after bone marrow transplant
and is now monitored at a day hospital. He feels much better.
Control puncture showed remission and good bone marrow engraftment,
while blood count is normal. Mild manifestations of skin GVHD are
Natalia Alexakhina was diagnosed with
extramedullary relapse of leukemia. Recently, she underwent radiation
therapy at Diagnostic Treatment Center. Next she requires brain MRI
and CT scan to evaluate response and continue with a second cycle of
treatment. Natasha is now at home. She is still weak because of low
blood pressure, but overall she feels better.
17.09.2015 In May
Nikita Grischenko had a relapse of CNS leukemia.
Thanks to a cycle of chemotherapy at Gorbacheva Institute, in June
Nikita was able to reach remission. In July and August Nikita
underwent radiation treatment in his hometown and now he is back in
St. Petersburg for maintenance chemotherapy. Four treatment cycles are
planned monthly. Nikita feels rather well.
17.09.2015 Galina Zhikhareva
is in remission now. She recovered after
the fourth cycle of chemotherapy, and feels well and vigorous; her
blood count is good. At present Galina is undergoing maintenance
chemotherapy with Cytosar at the day patient facility in Leningrad
Regional Clinic Hospital. Most likely, this cycle will be the last.
17.09.2015 Veronika Nikulina
is still in the hospital. Recently, she
withstood another exacerbation of ulcerative colitis, but she feels
better now. Intestinal GVHD symptoms are still present. In addition,
drug toxicity has resulted in renal complications. Veronika feels
relatively well; she plays, sometimes goes for a walk with her mother
and cannot wait to start studying with a tutor.
15.09.2015 Gera Efimov
recovered after the infection, and his blood
counts returned to normal. He does not need blood transfusions and
receives Nplate injections every 2 weeks. German feels rather well.
He is active and happy. This year he started 1st grade,
and he loves his new status.
12.09.2015 Oksana Nosik
is hospitalized at Cardiac ICU of Hospital No.
51 in Moscow due to dramatic worsening. Currently, she remains in a
serious condition: her blood pressure is very low, she suffers from
pulmonary hypertension, shortness of breath and swelling. Oxana is
receiving symptomatic therapy while treatment of her primary disease
is on hold.
07.09.2015 Sasha Tkach
is seen as an outpatient. Twice a week he goes
for blood tests, and they are currently normal. Donor's bone marrow
engrafted and works well. Sasha feels rather well, goes out with
friends and plays video games. Tomorrow he starts school.
17.08.2015 Anton Gasnikov
remains in remission for leukemia and CNS
leukemia, and he continues maintenance therapy with Sprycel. Anton is
feeling great; he is an avid reader of Astrid Lindgren and Mark Twain.
This summer Anton traveled to Moscow for the World Children's Winners
Games, where he took second place in chess and third in soccer as part
of the Russian team.
14.08.2015 Arthur Matveev
underwent bone marrow transplantation, as
planned, on August 12. So far Arthur is feeling rather well, without
fever or infectious complications.
10.08.2015 Everything is well with
Arseny Kochukov. He continues to be
under observation at Gorbacheva Institute, where his blood counts are
being watched. He is feeling fine and is very active. In September the
boy start grade 2 (the teacher visits him at home). He also plans to
start attending performing arts studio.
10.08.2015 Omari Arkania's
MRI from July showed contrast uptake in the
lymph node underneath the jaw, and small lesions in the lungs. The
biopsy results showed no presence of cancer cells in the lymph node,
and the doctors allowed Omari to visit his native Georgia and rest.
The young man feels better. The next MRI is scheduled for mid-October.
06.08.2015 Olga Shmygleva
recently went for PET-CT scan that showed a
small node in her left lung that accumulates contrast. Everything
else is fine. Olga is now at home in Chelyabinsk; she is feeling well
and tries to stay active. In September-October she is planned to have
comprehensive evaluation in St. Petersburg.
06.08.2015 Veronika Nikulina
continues therapy at the hospital. She is
still bothered by intestinal GVHD and colitis and every now and then
she spikes fever. Her blood counts are low and sometimes she needs
When she feels better, Veronika reads, draws and sometimes goes for a
walk with her mom.
04.08.2015 Ira Grushevskaya
continues lung GVHD treatment in St.
Petersburg. Her condition improved, but not significantly yet: she
still needs oxygen and the shortness of breath makes her move around
mainly in a wheelchair.
04.08.2015 Until recently,
Natalia Alexakhina felt rather well, but her
condition changed for the worse in the last few weeks. Brain MRI
revealed brain edema and a mass near cerebellum. Natalia is in
remission in regards to leukemia and multiple sclerosis. Currently
Natalia is in Leningrad Regional Clinic Hospital and she is planned to
have additional tests.
03.08.2015 Galina Zhikhareva
remains in remission. Last week she
received the 4th cycle of chemotherapy followed by donor's cell
infusion at Gorbacheva Institute. Once Galina's blood counts recover,
she will be allowed to go home for about a month. Afterwards, she is
planned to continue chemotherapy at Leningrad Regional Clinical
02.08.2015 For now,
Masha Kutsenkova cannot continue aggressive
high-dose chemotherapy because of her general condition: she takes a
long time to recover, does not feel well, and her blood counts are
low. She was discharged home to her hometown Abakan to receive
maintenance therapy. Control puncture has been planned in a month.
02.08.2015 Oksana Nosik
is being treated at Almazov Center: she had
cardiac catheterization and medical therapy is being selected. She
still has shortness of breath, but feels better than previously.
31.07.2015 Lisa Evdokimova
feels great. She is in remission, and once a
year she undergoes tests. This year, Lisa went to the fifth grade, she
loves to learn. Lisa's mom is very grateful to everyone who helped
Lisa during her treatment.
30.07.2015 Two weeks ago
Gera Efimov was hospitalized at Gorbacheva
Institute with bilateral otitis, accompanied by high fever. Gera's
blood counts are a little low, and he receives injections of Nplate as
needed. He feels better now, and the doctors have promised to discharge him
from the hospital in a week, if everything goes well.
30.07.2015 Nastia Sluchaeva
is undergoing a difficult recovery process
after bone marrow transplant from her mother. Since July 12 she has
been in intensive care: she suffers from nausea and severe mucositis.
Nastia gets painkillers, intravenous nutrition and drugs to prevent
infection. Her blood counts are not yet improving.
27.07.2015 A donor has been identified for
Artur Matveev, and the bone marrow transplantation
is scheduled for August 12. The young man is currently finishing a round
of testing. Tomorrow he has a consultation at the Gorbacheva Institute,
where he will be scheduled for hospitalization. Artur is feeling well.
27.07.2015 Albina Ibragimova
has recovered from a bone marrow transplantation and was discharged to
outpatient care on July 20th. The biopsy results show complete remission
and full engraftment of the donor's bone marrow. Her blood counts continue
to improve. Albina's symptoms of intestinal GvHD were taken under control.
Overall, she is feeling relatively well.
19.07.2015 The results of several tests in various
labs have led to a change in Oksana Nosik's diagnosis:
this is not breast cancer, but rather extramedullary relapse of leukemia.
It was decided to restart therapy with Sprycel. Further therapy is being
discussed. Oksana has severe shortness of breath and she is scheduled
to see a cardiologist.
16.07.2015 On July 13th AdVita fund transferred 3,000 euros to
Dmitry Karpov's account at S. Morsch registry.
Advita Fund USA transferred additional 2,000 euros. The donor search will
be initiated within a few days.
15.07.2015 Sasha Tkach recovered
after bone marrow transplant and his blood
counts began to grow. If today's puncture results are good, he will
be discharged for outpatient follow-up. Until recently, Sasha has
been suffering from severe nausea and lack of appetite, but he now
feels better, began eating and regaining his strength.
11.07.2015 Today is
Albina Ibragimova's 19th post-transplant day
(her father was the bone marrow donor). Her blood counts stay low.
The fever went down, but the girl is nauseous and eats very little.
Despite that, Albina does physical therapy daily under a doctor's
supervision to speed up her recovery.
08.07.2015 Nastia Sluchaeva's
bone marrow transplant from her mom is scheduled for July 13th. She is
undergoing pre-transplant chemotherapy at the Gorbacheva Clinic.
She is not taking it well and has been getting fevers and nausea;
her blood pressure and blood sugar also went up following
the hormone therapy.
07.07.2015 In May
Vadim Antipov had exacerbation of skin and mouth GVHD,
and in addition to immunosuppressive drugs he was also prescribed hormones.
Photopheresis therapy is under discussion. Vadim feels well overall.
He is in remission and transplanted bone marrow functions well.
30.06.2015 Ira Grushevskaya
continues her photopheresis therapy for
pulmonary GVHD. Her lung condition has not improved noticeably yet.
The girl still suffers from severe shortness of breath, needs oxygen
and moves around predominantly in a wheelchair. Nevertheless Ira tries
to pursue an active lifestyle: recently her mother took her to the
zoo, while yesterday they visited Krestovsky Island.
30.06.2015 Masha Kutsenkova
finished the second chemotherapy cycle and
is now recovering. The girl does not feel well because of the nausea,
weakness and unstable blood pressure. Her skin, mucous and pulmonary
GVHD symptoms became worse. Scleroderma is of particular concern;
Masha cannot bend the joints of her back, hands and legs, and she can
only move around in a wheelchair.
29.06.2015 On June 23
Albina Ibragimova underwent a haploidentical
bone marrow transplantation from her father.
The girl is now recovering and feeling ok.
25.06.2015 Artur Matveev
is now at home feeling fine. Next week he is going to have the next
maintenance chemotherapy course administered at Hospital 15.
The bone marrow donor has not been found yet.
25.06.2015 Galina Zhikhareva
is now staying at her country house recovering from the second chemotherapy
course followed by the T-cells transplantation from her son.
The second course went better than the first one, and Galina
is now feeling better. Her only complaint is the general weakness.
On July 10 Galina is seeing her doctor who will consider the date
of her hospitalization.
Misha Stepanov had no response to the chemotherapy round.
He now has close to 90% of blasts in his bone marrow.
Misha was discharged home for palliation. He feels relatively
well for now and will receive blood transfusions as necessary.
22.06.2015 Omari Arkania
will go for CT scan in late June - early July
instead of an x-ray. He is now being observed at a day hospital; his
blood counts are fine, and only his creatinine is heightened. Omari
feels well, his appetite is good, but he is still unable to regain the
22.06.2015 Doctors have decided to postpone
German Efimov's active
treatment and to continue his maintenance therapy. Skin GVHD is not
apparent now and the doctors are lowering his hormone drugs very
slowly. Gera's pressure is normal, and his thrombocyte counts stays
within 50 000 without transfusions and therapy with Nplate. He feels
Oksana Nosik has been diagnosed with stage two
of breast cancer. The young woman needs help with the payment for
MRI and other additional testing she is currently undergoing at
the Petrov Oncology Institute. Oksana only has sufficient funds
to pay for her living expenses, food and supporting drugs.
We would appreciate any help!
17.06.2015 Gayane Vardanyan
recently came to St Petersburg for control testing. The clinical results
came back normal, while puncture results will be ready in two weeks.
Recently Gayane had a cold with a complication in her lungs, but overall
she feels relatively well.
17.06.2015 Sasha Tkach
had a bone marrow transplantation on June 12, as planned. He did not
tolerate pre-transplantation chemotherapy very well and had several
days of high fever. He is feeling better now.
16.06.2015 Albina Ibragimova
stays in remission and she is feeling rather well. Today she started
pre-transplantation chemotherapy at the Gorbacheva Institute.
Bone marrow transplantation from her father is scheduled for June 23.
13.06.2015 May 2015 marked four years since
Elena Plis's bone marrow
transplant. Fortunately, evaluation confirmed complete remission. The
doctors allowed Elena to go to the seaside. She already bought the
tickets and is looking forward to her trip. She also plans to visit
Germany, as she stays in touch with her bone marrow donor and hopes to
meet him in person.
10.06.2015 In May - June
Roma Ignatovich underwent his control tests in
St. Petersburg. The boy remains in remission, but has a mild skin
GVHD. Roma received his schedule of immunizations, and the doctors
also allowed him to start school next year. He feels well.
09.06.2015 Irina Maximova has died.
Unfortunately, Ira had a fourth recurrence of
leukemia. Because the doctors exhausted all treatment options, they
could only offer palliative therapy. The illness progressed rapidly.
On June 9th Ira passed away. The relatives and loved ones of the young
woman would like to thank from the bottom of their hearts all the
people who provided support and helped fight Ira's illness all these
08.06.2015 Irina Prikhodko
is still at home in the Murmansk region. She feels rather well.
08.06.2015 It was decided to make another attempt to bring
in remission. The boy completed high-dose chemotherapy FLAG with
Idarubicin at Children's hospital No. 1 on 6th of June. He is not
feeling well yet due to fever, diarrhea, and low blood counts.
02.06.2015 Sasha Tkach's
bone marrow transplant is scheduled for June 12.
Sasha has already completed the pre-transplant evaluation and is now
doing the last tests at the Gorbacheva institute. He is scheduled to
be admitted on June 4. He is feeling fine: the hemoglobin is a bit low
as usual, but other blood counts are normal.
01.06.2015 Veronika Nikulina's
photopheresis therapy was paused due to
continuously elevated temperature. She does not feel very well. The
doctors are now trying to pick the most effective antibiotics.
Veronika is in remission.
29.05.2015 Masha Kutsenkova
completed a round of anti-relapse
chemotherapy in St. Petersburg and is now recovering. She does not
feel very well so far. Further treatment is under discussion. It may
include radiation therapy or another round of chemotherapy. A fungal
infection reactivated again, and Masha receives appropriate therapy.
26.05.2015 The puncture confirmed
Movlid Tutuev's complete remission,
but it was decided to continue preventative therapy with Vidaza for
the time being. In addition, nk-cell infusion from the boy’s father is
scheduled for June 1. Movlid feels well. He is energetic and active, as usual.
26.05.2015 Ira Grushevskaya's
condition became noticeably better.
Currently she is an outpatient. The girl feels rather well. Her mother
takes her for walks; however it is not easy for her to walk due to
severe shortness of breath, and Ira mostly moves around in a
wheelchair. Her lung GVHD is being treated with inhalations and
hormonal therapy, and photopheresis therapy is planned as well.
23.05.2015 At Gorbacheva Institute's medical board
it was decided to refer
Albina Ibragimova for bone marrow transplantation from her
father. The transplantation is planned for mid-June. Albina is now
in St. Petersburg where she is undergoing evaluation. She is feeling
23.05.2015 Thanks to
Arthur Matveev's supporters, he was able to raise
5,085 euros as the initial deposit for the donor search. On May 22nd
the money was transferred to Arthur's account with S. Morsch
international registry. The search for the donor will begin shortly.
23.05.2015 Galina Zhikhareva
was recommended to undergo three cycles of
anti-relapse chemotherapy followed by t-cell infusion from her son.
She completed the first cycle in early April, and is due to start the
second one next week. Galina feels rather well and she is in
remission. She is continuing to take Noxafil.
19.05.2015 Irina Maximova
remains in remission, but her platelet count
stays low. She is currently at home and is feeling fine. The next
donor's lymphocyte infusion will be scheduled after her liver function
tests are back to normal.
19.05.2015 Omari Arkania
is monitored as a day patient. He is feeling
fine, his blood counts are normal and the sedimentation rate remains
stable. He will have another X-ray soon to evaluate the overall progress.
19.05.2015 As no hospital beds are currently
available at the Gorbacheva institute,
Misha Stepanov will receive his induction chemotherapy at
the Children City Hospital # 1. He will then be transferred to the
Institute for the bone marrow transplant. It will be once again
transplanted from his mom. Misha has already completed his
pre-transplant evaluation. He is scheduled to be admitted to the
hospital on May 21.
19.05.2015 Gera Efimov
continues therapy with NPlate and hormonal
therapy as an outpatient. The boy is feeling fine. He tries to be
outside as much as possible and has recently learned to bike without
08.05.2015 A decision on
Nastia Sluchaeva's further treatment has not
been made yet. Nastia still receives blood transfusion and platelets
in the clinic. Low levels of blood make her feel constantly weak; due
to the worsening of memory it is hard for her to learn at school.
Yesterday Nastia had a fever, and she was prescribed antibiotics.
08.05.2015 Arthur Matveev
is in remission, he receives maintenance
chemotherapy in the 15th City hospital and recently finished the
fourth cycle of chemotherapy. Now the young man is home, and he feels
fine. The fundraising for a down payment to the international bone
marrow donor registry continues.
08.05.2014 AdVita Foundation initiated fund-raising
for the treatment of Arthur Matveev.
Sasha Tkach's disease is progressing, and it
was decided to proceed to bone marrow transplant from a partially
matched donor. The transplantation was preliminarily scheduled for
the end of June. Before then, Sasha will need to undergo complete evaluation.
30.04.2015 Veronika Nikulina
is continuing treatment of GVHD; hormonal
therapy and six rounds of photopheresis led to a significant
improvement. However, Veronika does not feel very well. She is very
weak, has swellings and sometimes her temperature rises. She is
receiving appropriate therapy.
27.04.2015 On April 13th
Fatima Tardy-Akhunova received autologous bone
marrow transplant at Gorbacheva Instiute, but on April 23rd she was
moved to ICU due to renal complications and was put on renal
replacement therapy and a ventilator. Since then her kidney condition
was stabilized, she feels better, and today Fatima will be moved back
to the floor.
23.04.2015 It was decided to move
Anya Lomonosova's hip joint replacement surgery to May.
For now Anya returned home, to Saratov. She follows the doctors' advice
and tries to walk without crutches, although it is difficult for her.
Anya feels well and she studies the 8th grade curriculum with her teachers.
21.04.2015 Movlid Tutuev
is in remission; he is receiving maintenance
chemotherapy with Vidaza as an outpatient. He has bronchitis now,
and after he completes therapy, he will have one more donor's
lymphocyte infusion, followed by infusion of nk-cells from his father
to prevent relapse in May. Movlid feels rather well.
21.04.2015 Galina Gavrilova
is asking for help with buying vitally important antidepressants.
She has no money, even for food.
20.04.2015 Elena Vozhova
is in remission for leukemia and CNS leukemia.
There is no treatment scheduled currently, and Elena will have one
more control puncture in late April. She is at home currently and has
been feeling relatively well. Elena receives physical therapy and is
learning to walk again.
20.04.2015 In early April,
Ira Grushevskaya's condition sharply
deteriorated: she started having severe shortness of breath and her
oxygen saturation decreased (the percentage of oxygen in the blood
hemoglobin). Ira is now hospitalized at Gorbacheva Institute and she
receives oxygen. The exacerbation of cytomegalovirus infection was
discovered, while GVHD of lungs and a number of other complications
cannot be ruled out. Ira is now stable, but significant improvement
hasn't been achieved yet.
Misha Stepanov's disease does not respond to
chemotherapy. Blasts in bone marrow and peripheral blood continue to
grow in number. At medical board at Gorbacheva Institute it was
decided to proceed with bone marrow transplant from Misha's father.
Transplantation will take place as soon as there are available beds at
13.04.2015 Irina Maximova
remains in remission. Donor's bone marrow
engrafted and functions well, although platelet count is somewhat low.
After the first lymphocyte infusion, Irina's liver enzyme count
increased, which raised the question of liver GVHD. Repeat lymphocyte
infusion has been postponed. Irina is now at home and feels rather
well, aside from fatigue.
10.04.2015 The biopsy showed that
German Efimov's bone marrow produces
platelets in a sufficient amount, but for some reason, these cells do
not reach the periphery. A week ago, his skin GVHD aggravated, but
after initiation of hormone therapy, his platelet count increased.
Treatment with mesenchymal cells is being considered.
10.04.2015 Histology showed that
Omari Arkania has insignificant amount
of malignant cells and relapse is in question. For now, the decision
is to observe the situation and repeat examination after some time.
Omari is now at home. He feels well.
09.04.2015 Masha Kutsenkova
continue therapy in St. Petersburg. If her
lung condition improves soon, the doctors promised to allow her to
travel home to Khakassia. She still has skin GVHD symptoms, and
receives therapy with Roncoleukin. Overall Masha does not feel very
well due to limitation in movement from skin GVHD. She goes for
08.04.2015 Nastia Sluchaeva
is still seen at the day hospital, and twice
a week she has tests - her blood counts remain low with neutrophil
count near zero. Once a week she gets a transfusion of platelets and
biweekly she gets whole blood. A consultation with Professor
B.V.Afanasiev has been planned to discuss further treatment.
03.04.2015 Yulia Vodopianova
is still receiving maintenance therapy as a
day patient. Twice a week she receives blood transfusions. She does
not feel well and suffers from cough, extreme fatigue and shortness of
02.04.2015 In March
Anya Lomonosova was allowed to home to Saratov for
two weeks. She has already returned to St. Petersburg to continue
therapy with photopheresis and undergo surgery to replace her hip joint.
Hospitalization at Turner Institute is scheduled for April 9th, and
the surgery for hip joint replacement is scheduled for April 14. Anya
31.03.2015 Based on PET-CT scan results,
Olga Shmygleva is in
remission. She has mild eyes and skin GVHD symptoms, but in general
Olya feels well. The next examination is planned for July or August.
31.03.2015 At the end of February
Nadya Chibireva's tumor triggered a
new hemorrhage. She was urgently hospitalized at Polenov Neurosurgery
Research Institute and operated to remove the tumor. Nadya is now
recovering at home, but she does not feel very well due to pain,
nausea, and elevated temperature.
30.03.2015 Sasha Tkach
had a biopsy in March and the results of the
analysis are not yet ready. He is now a day patient and continues
receiving the drug Soliris. Sasha's hemoglobin level is lowered, but
there is no need for a blood transfusion yet.
30.03.2015 Nikita Burenkov
was transferred a week ago from the ICU to a
bed ward. His condition has stabilized, but he still has problems with
his lungs. A recent biopsy showed that Erwinaze therapy helped bring
the blast percentage in his bone marrow down to 40%. Treatments
Albina Ibragimova was diagnosed with a
relapse. She is currently treated in a hospital in Ufa where she was
started on high-dose chemotherapy. Albina does not feel well.
25.03.2015 GVHD of
Uliana Veselovskaya's lungs is still presenting
symptoms, but it was taken under control. Doctors have discharged her
from the hospital for observation of Yaroslavl hematologists on March
8th. Uliana will have to come back for a checkup in St. Petersburg in
summer. She will receive all necessary drugs at her place of
residence. The girl is at home now and feels overall rather well.
25.03.2015 After three cycles of chemotherapy most of
Fatima Turdy-Akhanova's lesions have decreased in size,
but the lesions in bones have stayed the same. Consultation has been planned at
Gorbacheva Institute and it will address the possibility of autologous
bone marrow transplant. Fatima is at home now and feels well.
24.03.2015 Last week
Georgy Tarakanov completed a final cycle of
preventative chemotherapy with Vidaza. From now on he will be seen at
Leningrad Regional Oncology Hospital where he will have tests and a
control puncture 2-3 times a month. Gerogy feels well and he goes to work.
24.03.2015 Misha Stepanov
recovered after a cycle of chemotherapy he
had at Gorbacheva Institute. Unfortunately, he has not achieved
remission. At the same time, brain MRI showed lack of disease
progression. Further treatment options are being reviewed. For now,
Misha is at home and he feels fine.
21.03.2015 Movlid Tutuev
is receiving treatment on an outpatient basis;
he is feeling well and is active as usual. Movlid is in remission; the
donor's bone marrow engrafted and is functioning well. Yet, the risk
of recurrence remains high, and Movlid received a cycle of
preventative chemotherapy with Vidaza as well as infusion of donor's
lymphocytes, to promote the graft vs. leukemia reaction.
19.03.2015 Fortunately, the lumbar puncture confirmed
CNS leukemia remission. Elena is currently at home. She is feeling OK
overall, and takes the medications prescribed by the neurologist and
goes for physical therapy.
19.03.2015 Artem Karnishin's
GVHD is under control, and the doctors
allowed him to return to Krasnodar; he will remain in the care of
local hematologists until mid-May. Artem recently caught a viral
infection and is receiving appropriate treatment. The young man still
has to use a wheelchair to move around; in April he is due to go to a
rehabilitation sanatorium near Labinsk.
16.03.2015 Alexandra Yusupova's
family decided to give 6 unused Adcetris vials to another Advita Fund's patient,
Marina Kamyshanova. The money remaining in Sasha's account (592,160 rubles)
will be used for Maria Morozova's treatment needs.
14.03.2015 In February
Irina Maximova had bilateral pneumonia, which
was treated with antibiotics. Since the end of February she has been
seen as an outpatient. She feels rather well, despite recent
substantial weight loss. Her blood counts are at the lower normal
range. She has no GVHD symptoms. Next week she is planned to
have a control biopsy.
10.03.2015 Gosha Makarenko
had fully recovered from pneumonia and was
discharged home to Omsk region. The boy is feeling fairly well, and he
is starting to walk by himself but shakily for now. The planned
testing in Omsk was scheduled for March 19th and control tests are
planned for May in St. Petersburg.
10.03.2015 Unfortunately, in February
Omari Arkania's CT scan showed
disease progression, as enlargement of some of his lymph nodes was
observed. Ultrasound study is scheduled for this week, and the doctors
are awaiting results of pathology to determine the treatment protocol.
Omari is now at home and he feels OK.
10.03.2015 Gera Efimov
received treatment with high doses of the
immunoglobulin, but it didn't, unfortunately, increase the levels of
platelets. One more cycle of Atgam is being considered. Gera
continues to receive regular injections of Nplate. He is feeling well
and very active and cannot wait for his birthday and, of course,
05.03.2015 Nastia Sluchaeva's
transplanted engrafted fully, but it has
not started functioning very well. Her blood counts are low. Nastia
is seen as a day patient and she feels relatively well. She receives
immunosuppressive and hormonal therapy.
25.02.2015 Recently, Georgy Tarakanov
was examined and had a control puncture at Leningrad Regional hospital.
The results are not ready yet. Timing of the last Vidaza cycle will be
discussed after evaluation results are in. Georgy feels rather
well and continues to work.
24.02.2015 Sasha Tkach
is recovering after a cycle of therapy with
Atgam. After cancellation of hormones, his blood pressure normalized,
but blood counts dropped again, and sometimes Sasha gets nosebleeds.
Sasha was allowed to go home on the weekend, and now he is back at
Children's hospital No.1 again where he is getting ready for
evaluation, results of which will determine further treatment.
Fatima Turdy-Akhunova had a relapse. Now she
is at Petrov Oncology clinic where she receives anti-relapse
chemotherapy. After two cycles, she will be transferred to Gorbacheva
Institute for autologous bone marrow transplantation. Fatima's family
needs financial help with apartment rent.
Misha Stepanov had a relapse. He is finishing
a cycle of chemotherapy at Gorbacheva Institute. Afterwards, he will
have brain MRI and control puncture. Misha feels relatively well.
19.02.2015 Movlid Tutuev
recovered after transplantation of the bone
marrow from his dad, and yesterday he was discharged for outpatient
monitoring. Fortunately, the control puncture showed remission, while
donor bone marrow engrafted and is functional, but Movlid's blood
counts are unstable for now. The boy feels well, and he is very happy
that he had been discharged from the hospital.
18.02.2015 Uliana Veselovskaya
continues treatment of complications. CT scan showed
the negative trend in January, so the treatment regimen was changed.
Uliana had a sore throat last week, but now she feels better. Most of
the time Uliana spends at home to avoid catching new infections.
16.02.2015 Veronika Nikulina
is still seen at outpatient hospital, but
she is not feeling very well: from time to time she gets fever,
weakness and gets tired quickly, complaining of increased pain in the
legs. She receives appropriate therapy. Veronika still likes to learn.
16.02.2015 Unfortunately, spinal tap revealed a relapse of
Elena Vozhova's CNS leukemia, and it was treated with
Cytosar. Most of her neurological complications were taken under control,
but she still has problems with her feet. Elena is now at home and feels relatively
well. Control tests are planned for next week.
Alexandra Yusupova's disease progressed during
therapy with Adcetris. Sasha's blood counts fell and her condition
worsened. Sasha is planned to continue treatment with Revlimid
(paperwork is being done), and meanwhile she receives hormones. After
the start of hormone therapy edema resolved, and cough became easier
to tolerate. Further treatment is being discussed.
13.02.2015 Artem Karnishin
came to St. Petersburg to treat exacerbation
of skin GVHD: he developed severe sclerodermatitis and can now move
around only in a wheelchair. He receives treatment with low doses of
hormones, immunosuppressants, and photopheresis. The doctors are also
considering infusions of mesenchymal cells.
13.02.2015 Nadia Chibireva
started having headaches and was referred to
Polenov Scientific and Research Institute, where the doctors located a
mass in her head, presumably, a hemorrhaged cavernous angioma. Urgent
hospitalization for surgery is planned for next week.
Nikita Burenkov has been unable to achieve
remission. He has been in ICU since February 6th with complications
(GVHD of mucous membranes, intoxication, cardiomyopathy, and lung
issues). So far, Nikita's condition has been very serious, but he has
a strong will for life and is fighting as hard as he can.
07.02.2015 Dmitry Manturov
underwent lung examination that confirmed
remission from fungal infection. Preventative antifungal therapy was
canceled, but inhalation therapy is continuing. Repeat examination is
scheduled for May. Dima feels well, although he still has shortness
of breath and cough.
04.02.2015 Dima Yablochkov's
situation with lungs is now stable,
although he retains shortness of breath. He feels rather well
overall. He follows his osteoporosis at Vreden Institute and his last
x-ray did not show any changes in spine. In April he will do a blood
test to check his calcium.
Omari Arkania overcame bacterial infection, but he
is still coughing. He is not currently receiving chemotherapy. The
next evaluation for his primary diagnosis (CT scan) was postponed to
25-26 of February. Omari is feeling rather well.
31.01.2015 Mikhail Fufaev's
battle with pneumonia was successful, and he
was discharged from the hospital at the end of December. He is
currently under observation on the outpatient basis, and continues to
have blood work done once every two weeks. The main blood counts in
the normal range.
Yulia Vodopianova has not been able to
achieve remission. She continues to receive Interferon therapy,
antibacterial and anti-fungal medications, and she is receiving blood
transfusions on as needed basis. Yulia is feeling up and down, but she
does feel better after blood transfusions.
30.01.2015 Masha Kutsenkova
is administered photopheresis for her skin GVH reaction. Her body
temperature is slightly elevated and her backache has gotten worse.
The doctors are trying to find out the reason. Chest CT results
testify to positive dynamics but the function of external treatment
has deteriorated. The doctors are considering further therapy.
30.01.2015 Irina Prikhodko
is now at home in the Murmansk region. She is feeling ok although she
is suffering from changes in blood pressure. In spring Irina graduated
from the university and got her diploma of a psychologist. Work is out
of the question now but Irina is hoping she can start her
career in the near future.
29.01.2015 In January
Nastia Sluchaeva had a puncture which showed
that the donor bone marrow had taken root but had not yet started
to work as it should, so the girl needs blood components transfusions.
Nastia has been getting treatment at the day patient facility since
January 24. On the whole she is feeling ok but sometimes she is very weak.
29.01.2015 In December
Gosha Makarenko came to St. Petersburg for a
medical examination which confirmed a full remission. Maintenance
chemotherapy the boy had been administered for the past two years
has been canceled. However Gosha had to stay in St. Petersburg longer
than planned due to a bad pneumonia and had to spend almost a month
in intensive care. At present the boy is feeling much better.
27.01.2015 In November
Nino Utiashvili underwent a complete examination
in Schwabing clinic (Munich, Germany). The results confirmed the
diagnosis made in St. Petersburg. While Nino and her mother waited
for the biopsy results, the girl received maintenance chemotherapy.
Within days, the doctors plan to come up with an experimental
27.01.2015 Gera Efimov
is still under the care of doctors in the day
patient facility. Nplate is injected on regular basis. Although the
medicine does not work as well as previously, blood transfusions are
not needed. As further treatment, a course of Atgam and the third
bone marrow transplantation, are being considered, but the final
decision has not been made yet.
19.01.2015 On January 14 and 15
Alexandra Yusupova underwent another
chemotherapy cycle with Adcetris and Bendamustine. Her blood counts
are low as of now. Sasha has a fever, but on the whole she feels
better and is regaining her strength and energy.
19.01.2015 Georgy Tarakanov
feels rather well. He is still followed at
Leningrad Regional Clinical Hospital and continues to work. The
medication for the 8th cycle with Vidaza has been bought, therefore
the infusion can be performed presently.
19.01.2015 Galina Gavrilova
needs medications for planned therapy, test
strips for the glucometer and financial help with paying for home
nurse. She also still needs to buy an electronic blood pressure
monitor. Please help!
Nikita Burenkov had a relapse: the lesion in
his leg is growing, the chromosomal break is back and there are blasts
in his blood. Yesterday Nikita and his mom arrived in St.Petersburg
for anti-relapse chemotherapy.
15.01.2015 Several days ago
Misha Stepanov completed another cycle of
maintenance chemo with Cytosar. His blood counts have gone down a bit
since then. He is scheduled for puncture on January 27. Misha is
currently at home. He is feeling fine.
13.01.2015 Veronika Nikulina
spent most of December in the hospital
with bacterial and viral respiratory infection and an exacerbation of
intestinal GVHD. The girl is again being observed at a day hospital
since December 30. The GVHD is now under control, the condition of her
lungs has improved, and she has no fever. Pains in her feet are no
longer a problem, but Veronika still has to move around in a wheelchair.
13.01.2015 Ulyana Veselovskaya's
leukemia remains in remission and the donor's bone marrow is working well.
However, in December she had a viral infection, during which her pulmonary
GVHD worsened. Ulyana is receiving appropriate therapy. A control CT scan
and bronchoscopy have been planned for the near future.
13.01.2015 December's lumbar puncture confirmed
remission, however, her blood counts fell sharply in early January.
Unfortunately, the lumbar puncture done yesterday revealed a relapse:
30% of blasts in her bone marrow. Further treatment is being discussed.
12.01.2015 In December
Elena Vozhova received two donor's lymphocyte
infusions and a cycle of therapy with Roncoleukin. She is now
undergoing the second cycle. The doctors weren't able to induce
transplant versus leukemia reaction yet. Further treatment is under
discussion. Elena is now at home. At times she has fatigue and
dizziness, but she feels well overall.
05.01.2015 Evgeniy Senkin
is in remission. He continues
taking Tasigna, which has been provided to him all this time by Altai
29.12.2014 In December
Omari Arkania underwent the fourth course of
Adcetris. A decision about the subsequent treatment has not been made
yet. Control PET and CT revealed foci in cervical lymph nodes. The
doctors are not sure yet that this is a sign of lymphoma. They have
planned additional tests. Omari feels rather well. He is preparing
for the mid-term exams in the Russian Academy of Justice, where he is
a fourth-year student.
29.12.2014 Yulia Vodopianova
has not achieved remission yet. She
continues to receive Interferon injections and undergo blood component
transfusion. She is treated as a day patient, and she feels OK.
27.12.2014 In December
Dmitry Manturov experienced worsening of
shortness of breath, however, lung function testing didn't show any
negative dynamic. Dmitry continues inhalation therapy and takes
antifungal drugs. He feels well despite shortness of breath and cough.
Additional testing at Mycology Institute is planned for the mid-January.
26.12.2014 The puncture showed that
Movlid Tutuev has high risk of
relapse, and the doctors decided to schedule bone marrow transplant
from Movlid's father for January 14th. The inpatient admittance to
the Gorbachev center is scheduled for January 5th. Currently Movlid is
finishing necessary testing and getting ready for celebrating the New
Year and getting presents.
25.12.2014 Since May
Alesha Laptev has been under observation and care
of hematologists from Nizhny Novgorod. His thrombocyte levels continue
to be somewhat low, while the other counts are in normal range. Alesha
will continue therapy with Rapamune: the doctors are not canceling
immunosuppressants due to risk of blood counts drop. The medication is
paid for by Advita Fund.
24.12.2014 Elena Plis's
PET-CT scan showed accumulation of contrast in
her lymph nodes, however, a biopsy results showed that it is not a
malignancy. Elena was recommended to go for monthly ultrasounds and
CT scans for control purposes. She is also followed at Endocrinology
Center in Moscow due to her trophic ulcer issue. Lena feels rather
well and wishes Happy New Year to everybody!
24.12.2014 Nikita Burenkov
was admitted to Chelyabinsk Hospital with
strong pains in his leg. Yesterday he had a control puncture and the
lesion biopsy. The tests were sent to St. Petersburg and
Ekaterinburg, but the results are not ready yet. Nikita's blood
counts are fine. He remains on all prescribed medications.
24.12.2014 Nastia Sluchaeva's
second bone marrow transplant took place
as scheduled on December 13. Nastia is now recovering. She does not
feel very well due to unstable blood pressure, weakness and has body
aches. Despite complications, she is trying to get into the holiday
spirit: put up a Christmas tree, decorated her room, and attended a
celebration in the hospital.
16.12.2014 Gera Efimov
continues to undergo therapy at an outpatient
clinic. He feels fine, and the doctors manage to take care of
occurrences of GVHD with the help of Ciclosporine. His immune system
has recently started to respond less to Nplate: his thrombocyte levels
haven't been rising above 70. Further treatment is being discussed.
16.12.2014 Mikhail Fufaev
had a control puncture done that showed complete
remission in early December. The donor's bone marrow is working well,
and his blood counts are normal. However, a week ago he was urgently
hospitalized in the ICU of the Boksitogorsk Hospital with severe
pneumonia. Now Misha's condition has stabilized and yesterday he was
transferred to a ward.
13.12.2014 During the last 6 months
Alexandra Yusupova received 8
injections of Adcetris. Clinically she has improved significantly,
and PET shows disease regression as well. Sasha's mom is sincerely
grateful to everyone who has helped them with raising money for the
drug. Currently, fundraising has been paused until further treatment
strategy is decided upon.
12.12.2014 Masha Kutsenkova
is continuing therapy for GVHD as a day
patient. She does not feel very well. Masha received two cycles of
photopheresis, and she will undergo the third on January 15-16. Her
skin condition improved, but her lungs' condition worsened. The
therapy is ongoing. In addition, Masha began therapy for osteoporosis.
11.12.2014 Alexander Khomushku
came to St. Petersburg for a checkup
that confirmed remission from leukemia. The condition of his hip
joints is unchanged, and he is now undergoing lung tests. On October
29th Sasha had a surgery for right eye cataract. He will have a
surgery on his left eye after the New Year.
Shedi Buneb's evaluation in November
discovered cancer progression. Currently Shedi in inpatient treatment
at Oncology Institute in Pesochny. He just finished chemotherapy block
on December 6. For recovery he will be moved to hospice. Shedi is
feeling well and maintaining positive attitude. He entertains the
whole hospital staff with his jokes.
08.12.2014 Irina Maximova
continues to be seen on outpatient basis. She
is feeling OK, but gets tired easily. She is in remission, donor's
bone marrow transplant engrafted and is working well. Her blood
counts improved. The cytogenetic test results are not ready yet.
Irina's bacterial infection was curbed quickly. Recently,
cytomegalovirus infection was diagnosed and Irina will be taking
Valcyte for treatment.
Yulia Vodopianova had a relapse. Treatment
with low-dose cytarabine has not had effect, so Yulia received donor's
lymphocyte infusion on December 1st. In general, Yulia feels
05.12.2014 Omari Arkania
had three administrations of Adcetris and a
control CT scan to assess the results of therapy. Next week, a
consultation is planned, which will decide on the future treatment.
Omari now is at home and feels rather well.
01.12.2014 Georgy Tarakanov
had to postpone the 8th round of Vidaza
treatment due to the unavailability of the drug in the country. A
recent lumbar puncture confirmed remission, though the full results
are not available yet. Georgy feels well, continues working.
01.12.2014 A bone marrow donor for
Sasha Tkach; the transplant procedure
is tentatively scheduled for January 29th. The boy is feeling well,
and will undergo scheduled testing at Children's Hospital #1. If his
hemoglobin is low, Sasha will stay in the hospital for blood
transfusions. Soliris therapy continues.
28.11.2014 Repeat bone marrow transplantation for
Nastia Sluchaeva is
scheduled for December 13th. Next week Nas tia is planned to be
hospitalized for pre-transplantation chemotherapy. She does not feel
well, experiencing fatigue and continuously low blood counts. However,
Nastia is ready for the challenge. She is looking forward to the bone
26.11.2014 Ulyana Veselovskaya
continues treatment for lung GVHD in St. Petersburg.
In general, she feels rather well, although she still
complains of shortness of breath. A puncture in October confirmed
remission. Donor transplant functions well. Blood counts are within
the normal limits. On December 12th Ulyana will mark two years since
her bone marrow transplantation. One more control puncture is planned.
23.11.2014 In October
Diana Ibragimova and her mom went to Moscow for a
consultation and examination, which testified to a certain
deterioration. Diana's course of therapy has been changed, and now she
needs to undergo a second examination to evaluate the effect. Please
help us with paying for it. Diana still has leg ache.
21.11.2014 Nikita Burenkov
is now at home in Chelyabinsk. On the whole
he feels rather well, although his leg sometimes aches. Nikita still
has low-grade eye GVHD, due to which he occasionally has to take
hormonal drops. Nikita continues to take all the prescribed
medications, which are currently bought for him by the AdVita fund.
19.11.2014 In September and October
Igor Simonov was treated at Eye
Microsurgery Unit of Municipal hospital No. 2 where he had surgeries
to replace lens in both of his eyes with a four-week interval. Prior
to surgery, Igor was practically blind (his vision dropped due to
chemotherapy and steroid therapy). The surgeries were successful.
Igor's vision was restored. He is now seeing a district ophthalmologist.
19.11.2014 Galina Gavrilova
is asking for help with buying an electronic blood pressure monitor.
She needs to measure her blood pressure, but she cannot use a mechanical
monitor due to issues with her tremor.
11.11.2014 Svetlana Osufieva
came to St. Petersburg for examination.
Her blood counts are somewhat low; control puncture has been scheduled
for tomorrow. Chronic GVHD of the mucous membranes persists; in
addition, there were signs of GVHD of the intestine. She was
prescribed steroids. Svetlana feels rather well, and she is in a good mood.
11.11.2014 Gera Efimov
has been treated as an outpatient. He receives
injections of Nplate weekly and currently his platelet count is good.
The boy feels well, although recently there were some issues with
unstable blood pressure. Gera currently has a minor cough, and he is
seeing a pulmonologist.
10.11.2014 At the end of October
Arseny Kochukov had another episode
of intestinal GVHD. A week ago the boy received his fifth infusion of
mesenchymal cells. Arseny is feeling better now. His doctors finally
gave the green light to Arseny's getting a kitten, and recently he got
a new friend - Barcelona, a British shorthair cat.
10.11.2014 Mikhail Fufaev's
condition has improved recently: his blood
counts are good, and control puncture will be postponed. Mikhail has
no signs of GVHD. His leg pains persist at exertion, and he goes for
physical therapy sessions.
07.11.2014 The October puncture confirmed
Ira Maximova's remission. The
transplant has engrafted and Irina's blood counts are rising. Irina
is feeling fine. She is now allowed to walk outside, but she has to
remain at the hospital because of low-grade fever and a lesion found
in her spleen. The doctors are running tests. She is receiving
07.11.2014 The doctors decided to refer
Nastia Sluchaeva for the second
bone marrow transplant from the same donor using a different type of
pre-transplant chemo. The transplant is provisionally scheduled for
December. At the moment Nastia is under evaluation. She is feeling fine.
07.11.2014 Last December
Omari Arkania's lymphoma once again began
progressing. Several cycles of chemo stabilized it. In June Omari had
an autologous bone marrow transplant that helped achieve remission.
To maintain remission Omari is being treated with Adcetris, which is
purchased by Grant Life charity. He feels rather well.
03.11.2014 Masha Kutsenkova
is in remission and her bone marrow
functions well. The therapy for skin GVHD is continuing. Masha was
diagnosed with bacterial and fungal infections again and she was
prescribed appropriate therapy. She also has some worsening in her
02.11.2014 Yulia Vodopianova
is being observed as an outpatient and she
is feeling well overall. There's no significant change in her lung
GVHD; the shortness of breath remains. She continues therapy with
steroids. Due to a high risk of relapse, Yulia was prescribed
maintenance therapy with Sprycel. The next puncture is planned for
30.10.2014 Shedi Buneb
is continuing to recover gradually after
chemotherapy in August. Hemoglobin count is under 75 for now.
Radiation therapy is also planned. The final decision will be made
after control CT scan. Shedi is now at home and he feels OK.
24.10.2014 Movlid Tutuev
remains in remission; the minimal residual
disease test is not ready yet. The doctors agreed that his state of
health allows to delay bone marrow transplant at least until the New
Year. Until then he will be receiving maintenance therapy with
Dacogen. For now Movlid is under observation on an outpatient basis.
He recently recovered from the infection, and is feeling rather well now.
24.10.2014 Galina Gavrilova
is asking her supporters for help with buying medications, paying
for tests and supplies and nurse services.
23.10.2014 Veronika Nikulina
continues treatment for intestinal GVHD.
Her temperature is elevated due to the immune reasons, and the dose of
hormones was increased. Veronika received two mesenchymal cell
infusions, and photopheresis therapy is planned as well. Due to
continuing hormonal treatment her mood is changeable, but she is ready
to study with a teacher no matter what condition she is in.
22.10.2014 Georgy Tarakanov
is being followed at Leningrad Regional
Clinical Hospital and goes for blood tests regularly. All his blood
counts are within the norm. Georgy feels well and continues to work.
Vidaza has been ordered and is due to be supplied presently. The last
cycle of maintenance chemotherapy will most likely be administered by
the end of the month.
21.10.2014 Anya Burilova
has spent the last month at the sanatorium in
Solnechny where she underwent very familiar procedures: massages,
paraffin baths and physical therapy. Anya's arm and leg joints are
functioning much better now. Anya moves around a lot without a
wheelchair and is even able to come downstairs on her own.
21.10.2014 Ulyana Veselovskaya
is continuing treatment of lung GVHD.
She still has a cough, but she has less difficulty breathing. Ulyana
continues inhalations with hormonal agents and takes
immunosuppressors. It has been decided against photopheresis for now.
Control puncture was taken yesterday, there are no results yet.
20.10.2014 Misha Stepanov
continues maintenance therapy and goes for
regular blood tests. Misha's blood counts are good; he feels well. The
doctors are discussing further treatment for him.
Misha is in good spirits; he plays a lot, draws, watches cartoons and
is already looking forward to the New Year, gifts and Father Frost.
17.10.2014 The latest PET scan showed
Alexandra Yusupova's continuing
improvement, although it has somewhat slowed down compared to
beginning of the treatment. The doctors have decided to supplement
Adcetris with Ribomustin. Yesterday Sasha completed her first cycle
of the new combination and she tolerated it rather well.
16.10.2014 Unfortunately, an attempt to bring
Irina Maximova in
remission has failed. The doctors offered her a bone marrow transplant
from her sister, who is only partially compatible.
Transplantation was successfully done on October 3rd. Now Irina is
recovering. She does not feel quite well, as she suffers from nausea
and mucositis; she also has a high temperatur of immune nature.
16.10.2014 The doctors managed to control
Nikita Burenkov's GVHD of
mucous membranes with hormonal therapy. The puncture showed clinical
and hematological remission and no chromosomal abnormalities. The
doctors plan for him to be discharged for monitoring by local
hematologists. Nikita is feeling well and is very happy to go home.
15.10.2014 Egor Moskalenko
completed the final stage of treatment in
Korea: a tube was removed from his throat and he can now breathe by
himself. Egor is feeling well. Next Monday he will have the last
evaluation and then he will be able to go home. Egor's mom is very
grateful to everyone who has been helping Egor.
13.10.2014 In the last two years
Ilya Ipkeev developed an increased
need for transfusions of blood and platelets. Gorbacheva Institute
doctors decided to recommend him second bone marrow transplant. Ilya
had second transplant from his older brother Vyacheslav on October 9th.
Ipkeev family is very grateful to all supporters and volunteers for their help.
Galina Gavrilova was not able to visit the
dentist. She also lacks money for medications that she needs to
receive every six months. Please help!
10.10.2014 At the end of September
Olga Shmygleva developed stomatitis
and fever, and her leukocyte and kidney enzyme counts have increased.
On September 23rd she had PET-CT that did not show any lesions with
active lymphoma. She will come for evaluation at Gorbacheva Institute
on October 20th.
03.10.2014 Nastia Sluchaeva
continues to be seen at an outpatient
hospital and regularly receives blood transfusions. The search for a
bone marrow donor continues. Nastia feels well and is looking forward
to celebrating her birthday and presents. Nastia's mom thanks all the
parents of her classmates and her homeroom teacher Oxana Gennadievna
from the bottom of her heart for their help in raising funds and for
finding blood donors for her daughter.
02.10.2014 Masha Kutsenkova
came to St. Petersburg for evaluation. She had most of the tests done,
but the results are not ready yet. She does not feel too well and complains
of fever, swelling and painful to touch skin. However, while at home,
Masha was able to gain back 7 kg!
25.09.2014 Sasha Tkach
is under the care of doctors in Children's City
Hospital No.1. Once every two weeks the boy takes Soliris and
undergoes blood transfusions, as needed. Sasha feels well. He follows
the 7th grade curriculum and studies at home with visiting teachers.
Bone marrow donor has not been found yet.
25.09.2014 Elena Vozhova
is in remission, but genetic dislocation
persists, what can trigger a relapse. Repeat transplantation is not
considered so far; it was decided to proceed with maintenance
chemotherapy with Asadin on outpatient basis. Elena feels rather well
and it is easier for her to walk.
25.09.2014 Milana Kuzhenova
arrived in St. Petersburg for a control
examination. Condition of her skin and joints improved a bit.
Photopheresis was postponed for now, while Mabthera therapy will be
administered instead. The treatment started at R. Gorbacheva
Institute, and the remaining three cycles will be given at Milana's
place of residence. She will return to St. Petersburg in January for
her next examination.
25.09.2014 On September 23rd
Alexandra Yusupova had her fifth injection
of Adcetris. Her blood counts between the injections remained
reasonably good. She did not need any blood transfusions. Alexandra
feels better. She cheered up and is regaining her sense of humor.
Alexandra eats well, but it is not easy for her to regain the weight.
23.09.2014 On September 1
Irina Maximova's high-dose chemotherapy course
was over, but the doctors have not been able to evaluate the results
of the treatment yet: the girl's blood counts are still low.
The follow-up puncture is planned for next week. Irina is feeling ok but
she's very tired of the treatment.
23.09.2014 Verokina Nikulina
has an acute condition related to her chronic intestinal GVH reaction.
She is also in for photopheresis. Because of the hormones the girl has
polyneuropathy, and she has to move around in a wheelchair due to the
pain in her legs. As for leukemia, Veronika is still in remission.
Her donor bone marrow is functioning well, and all her blood counts are normal.
23.09.2014 On September 19
Nikita Burenkov and his mother came to St. Petersburg
for the medical examination and treatment. The boy is feeling ok
(as soon as the Sprycel therapy began he has had no pain in his leg),
but he cannot walk on his own so far and only moves around in a wheelchair.
Nikita has an acute condition related to his eye mucosa GVH reactionà again
and has been prescribed eye drops with hormones.
22.09.2014 Nino Utiashvili
has had four RIST chemotherapy courses. The Schwabing hospital in Munich,
Germany, is ready to accept the girl for further treatment. Nino and her
mother are waiting for an invitation from the clinic. The girl's mother
says thank you to all the people who are helping and supporting them.
22.09.2014 Georgy Tarakanov
is still in remission. bone marrow is functioning well, but the doctors
still decided to go ahead with the eighth course of Vidaza as planned.
The timing depends on when the funds needed to buy this medicine will be
found. Georgy is feeling fine, and his blood counts are normal.
20.09.2014 Galina Gavrilova
is asking for help with dental expenses. Any inflammation can provoke an
attack of mutiple sclerosis, and diabetes does not help with healing.
Therefore, it is vitally important for Galina to take care
of her dental issues.
19.09.2014 Ulyana Veselovskaya
is in remission, and the donor bone marrow is functioning well.
However, she is still in St. Petersburg, where she continues treatment
of lung GVHD complicated by bacterial and fungal infection.
Ulyana still has shortness of breath, but her general condition has improved.
She does not have intestinal problems or fever at the moment.
19.09.2014 Andrei Sharoglazov
is now at home in Krasnoyarsk Region.
He is currently undergoing a check-up at a local hospital. Andrei
feels rather well, he is in great spirits and cannot wait to return to
St. Petersburg, where he is due to undergo a control examination in
19.09.2014 Misha Stepanov
is being seen at R. Gorbacheva Institute of Hematology and Transplantation.
His blood counts are stable. Presently Misha is planned to undergo
another cycle of maintenance chemotherapy with Cytosar.
Misha is at home now. He feels rather well, but is very tired of the
treatment and hospitals.
09.09.2014 Anya Burilova
is currently at home, she is feeling rather well.
Unlike in previous years, this summer she did not have any seasonal
GVHD attacks. In fact, her skin looks a bit better and the wounds on
her head and hand are starting to heal. In the nearest future she
will have her 4th mesenchymal cell infusion and on September 15th she
and her mom will go to health resort in Solnechny for rehabilitation.
09.09.2014 Yulia Vodopianova
has been quickly transferred from ICU to the
general ward. She is in remission. The donor's bone marrow has
engrafted and is functioning well. However, Yulia still experiences
problems with her lungs. A bacterial lung infection was discovered and
cytomegalovirus is once again active. Yulia is takingappropriate
therapy. Lung biopsy is planned to check for possible issues with GVHD.
09.09.2014 Anya Andreeva
is currently at home in Krasnodarsky krai. She
feels well and goes to school - she is already in 4th grade. This
December will mark 5 years since her bone marrow transplant. Prior to
that Anya will have evaluation in St. Petersburg. If everything is
fine, she will no longer need to be followed.
05.09.2014 Mikhail Fufaev
is still monitored at the Leningradksy Regional
Clinical Hospital and by his local oncologist. His blood counts are
much better. He is gradually taken off the drugs he has been taking
this year. Control CT scan is scheduled for September 8th. Depending
on the results he may be taken off steroids. Mikhail is rather well,
but his blood pressure remains unstable and his legs feel weak.
05.09.2014 Over the last six weeks
German Efimov was once again
administered Nplate: first weekly and then biweekly. His platelet
count now stays near 200. Immunosuppressive drugs are being
continued, as their cancellation causes skin GVHD attacks. Otherwise
he feels fine and is happy to play Lego, read or go for walks all day along.
04.09.2014 Dmitry Manturov
had a lung function test that showed no
improvement, and inhalation therapy was changed. He is still taking
anti-fungal drugs. Dmitry still has cough and dyspnea, but feels well
03.09.2014 Anya Krasnoshtanova
has completed a course of VePesid and had
an MRI which showed a small increase in the size of the tumor. On
September 30 she will have control PET scan which will determine the
next treatment. At the moment Anya is at home.
She is feeling well and her tests are looking good.
03.09.2014 The doctors let
Movlid Tutuev and his mom go home to Dagestan
for a couple of weeks. Yesterday they came back to St. Petersburg. The
boy is now scheduled for evaluation which will determine the date of
the bone marrow transplant from his dad. Movlid is feeling well. He
really enjoyed going back to his home village and spending time with
03.09.2014 Alexandra Yusupova's
CT scan as of August 29th confirmed improvement.
Her lymph nodes are getting smaller. On September 2 she had her
fourth injection of Adcetris. Sasha is now at home and feels better:
her swelling is gone and her appetite is back.
30.08.2014 June examination confirmed that
Dasha Nekozyreva is in
sustained remission. Donor bone marrow functions well. Her skin
condition improved a bit. Therapy for chronic skin GVHD continues. At
present Dasha is getting ready for school, as she is starting the 9th
grade this year. It is not yet certain whether she will attend school
with other children or will be home schooled.
Ira Maximova had a relapse. This week Ira was
hospitalized to Gorbacheva Institute, and high-dose chemotherapy has
already been started. Bone marrow transplantation from partially
matched sister is being discussed (there is no time to activate a
donor from the registry). Ira feels relatively well. She is upset, but
she is not giving up.
27.08.2014 In June
Diana Ibragimova was planned to have knee
replacement surgery in a clinic in Tubingen, but it had to be
postponed. Diana was found to have problems with bone tissue. She
will now undergo therapy to restore it. Diana's mom is trying to find
money for surgery and subsequent recovery, but she is unable to do it
on her own. Please help!
26.08.2014 Shedi Buneb
receives second cycle of chemotherapy as an
outpatient at Gorbacheva Institute. His blood counts are low, and he
gets blood transfusions. Shedi feels relatively well, he is cheerful
and joyful, and is only unhappy about his bedrest.
26.08.2014 After one more cycle of chemotherapy,
level of blasts in Elena Vozhova's bone marrow
has decreased, but the genetic mutations is still present.
Elena is now at home and feels better, but still
complains about pain in her legs. In early September, Elena is
planned to be hospitalized at Gorbacheva Institute to begin a new
cycle of chemotherapy with Asadin.
Nikita Burenkov was diagnosed again with
extramedullary relapse in his feet bones, and the lesion has grown. He
was prescribed Sprycel. Nikita is still at home, in Chelyabinsk. He
does not feel very well, complains of leg pains, mostly lies down and
does not want to go out.
18.08.2014 In July
Georgy Tarakanov received the seventh cycle of
therapy with Vidaza. It has been planned that he will have a control
puncture on August 21st and the results of this puncture will show if
the 8th cycle will be necessary. The antifungal drugs were canceled.
Georgy feels well and continues to work.
18.08.2014 For some time
Yulia Vodopianova was transferred back to the
hospital room, but now she is again at the intensive care unit: she is
still suffering from the problems with her lungs and has difficulty
breathing. A recent puncture revealed that the number of blasts in
the bone marrow have dropped to 0.2%, but the cellularity is now very
low. Cytogenetic analysis is not ready yet.
18.08.2014 AdVita Foundation initiated fund-raising
for the treatment of Sasha Tkach.
15.08.2014 After two cycles of Adcetris,
Alexandra Yusupova had control
CT scan that showed slight improvement. Her overall condition has
gotten better as well: she walks by herself and does not use a
wheelchair. On August 11th Alexandra had the 3rd infusion of Adcetris.
She is now at dacha where she is recovering and playing with her daughter.
13.08.2014 Misha Stepanov
underwent the third chemotherapy course; he
was treated with Cytosar. At the moment the boy is recovering at home.
Misha's blood counts are low; he recently received a blood
transfusion. However, overall he's feeling OK and has been active. The
doctors are planning to convene in September to discuss the need for
and the timing of the bone marrow transplant.
13.08.2014 Nino Utiashvili
underwent the third chemotherapy course under
the RIST protocol and is feeling much better. Her blood counts are
mostly OK, she no longer suffers pains and has been taking walks. The
treatment will continue. At the same time, a search continues for
foreign clinics with potentially promising experimental treatments for Nino.
13.08.2014 Galina Gavrilova's
test results point to suspected diabetes. She also has worsening
anemia and issues with kidneys. Galina needs
to have additional tests, which she has to pay for out of pocket. She
also needs to buy glucometer and begin therapy. Galina is asking for support.
11.08.2014 Two weeks ago,
Arsen Kochukov's ulcerative colitis
exacerbated, but he now feels much better and no longer has pain.
Arsen regained his appetite and energy, he became more active and
wants to go out for walks. Arsen still takes anti-fungal drugs; they
are provided by a municipal health committee.
08.08.2014 Masha Kutsenkova
is back home in Abakan after control
examination and several courses of photopheresis. Masha is in
remission for leukemia. Donor's bone marrow engrafted and functions
well. Overall, she feels well, but complains of headaches. Masha has
not been able to regain weight so far.
07.08.2014 The recent puncture confirmed that
Mikhail Fufaev's bone
marrow is clear of cancer, and donor transplant functions well.
Mikhail is under the care of doctors from St. Petersburg Regional
Clinical Hospital. He feels well, but tires very soon. Computer
tomography is planned; the results of it will be reviewed to see
whether anti-fungal drugs can be canceled.
07.08.2014 Anya Burilova
underwent the third infusion of mesenchymal
cells in July. The doctors observed response to therapy: Anna's skin
condition is improving, and pigmentation is already not as noticeable.
Her parents decided to take her on a trip to Amsterdam as a present
for her 16th birthday. Anya's family is sincerely grateful to
FlyStation entertainment complex which helped to pay for the tour.
05.08.2014 Fortunately, after a cycle of anti-relapse chemo
Movlid Tutuev achieved remission.
Yesterday, the boy and the mother were discharged
to outpatient treatment. The doctors will now decide if he will
require additional round of chemotherapy before bone marrow transplant
from his father.
04.08.2014 In July
Dmitry Manturov had CT scan that showed reduction in
lung foci and development of fibrosis. Bronchoscopy was also performed
and showed progression of aspergillosis. Currently, replacement of
anti-fungal therapy is being discussed. Dmitry is feeling OK overall,
but continues having breathing issues and slight cough.
02.08.2014 Nastia Sluchaeva
is on outpatient treatment. She continues to
receive transfusions of platelets and whole blood. The girl is feeling
rather well and she is optimistic about recovery.
CT scan revealed changes in her lungs, and antibacterial therapy was
modified. The search for bone marrow donor continues.
02.08.2014 Irina Maximova
continues to be in remission, and transplant
had engrafted at 80-90%. Next week, another control puncture is
planned. As further treatment, repeat transplant of bone marrow from
the same donor or activation of a new bone marrow donor from the
international registry are being considered.
01.08.2014 Yulia Vodopianova
currently has 8% of blasts in bone marrow.
GVHD is not appearing yet, and a second donor lymphocyte infusion is
planned. Yulia has persistent issues with her lungs, so her therapy
was modified and she was moved to ICU for the weekend.
01.08.2014 Control PET-CT scan showed that
Olga Shmygleva still has a few
active lesions. Bone marrow biopsy results are not available yet. The
future treatment plan was not yet decided, but most likely it will be
infusion of donor's lymphocytes to activate graft versus host disease.
Currently, Olga is at home in Chelyabinsk and she feels rather well.
25.07.2014 Mila Kuzhenova
spent the last month on treatment for her
chronic GVHD of skin, mucous membranes and joints in St. Petersburg.
The therapy worked, and Mila's skin is looking much better, although
she is still struggling to walk because of severe scleroderma. Milana
is going home tomorrow, but will come back to St. Petersburg in
mid-September to continue treatment.
25.07.2014 Anton Gasnikov
is in remission. He is monitored at Gorbacheva
Institute. He goes for testing every two weeks and receives
maintenance chemotherapy on a monthly basis. His next injection is
scheduled for August 11. Anton is feeling fine, he is as bright-eyed
and happy as ever.
25.07.2014 A sudden attack of skin GVHD forced
Svetlana Osufieva to
come to St. Petersburg a month earlier. Since the beginning of the
treatment Sveta has been feeling better, her temperature is back to
normal but her skin remains very sensitive. She is in remission from
leukemia; transplanted bone marrow has engrafted and is functioning well.
19.07.2014 Amir Shataev
is at home. He is fine. The doctors believe
that no additional procedures are required. The next control
examination will be done in six months. Amir was recommended to
protect the eyes from the sun and to do special eye exercises.
19.07.2014 Shedi Buneb's
lung surgery was successful. Lower third of
the right lung with the parts of three ribs adjoined to the tumor were
removed. Prosthetic implant was installed instead of the ribs.
Recent examination showed that mediastinum was clear; however, there
were still four foci in the liver. It is planned to start chemotherapy
at Gorbacheva Institute very soon.
14.07.2014 Georgy Tarakanov
is under observation at a regional oncology
hospital. He is feeling well and getting ready for the 7th round of
Vidaza, which is planned to start in the near future.
Testing at Mycology Institute has been moved to August, and for now
Georgy continues taking antifungal drugs. The Leningrad regional
Health administration provided him with Vfend for another month.
14.07.2014 Gera Efimov's
donor's bone marrow transplant had engrafted at 100%, but
unfortunately, it is not working sufficiently yet. Every possibility
of transplant stimulation has been exhausted. The only effective
approach was with Nplate, if it is continuously administered. In the
near future German will restart therapy with it. Russian Help fund
promised to help with purchasing of the drug.
11.07.2014 The puncture, which was taken on
the 100th day after the bone marrow transplantation has confirmed
Danya Vlasov's complete
remission. Transplant had engrafted and functions well.
Immuno-suppressive drugs were canceled. The boy had a cold last week,
but he now feels well, reads a lot and walks outside, and spends
weekends at a dacha.
11.07.2014 Arseny Kochukov
has received the third infusion of
mesenchymal cells and began therapy with Roncoleukin to fight GVHD.
Now his body temperature is normal, but he suffers pain in his tummy
(presumably due to dysbiosis). Arseny is monitored as an outpatient,
and he feels rather well, but he lost weight because of abdominal pain
and loss of appetite.
11.07.2014 An evaluation after the two rounds of
RIST chemotherapy showed that Nino Utiashvili's
tumor growth had stopped. Nino does not
have pain any longer, her condition has slightly improved.
Treatment will be continued.
10.07.2014 Nikita Burenkov
is still at home in Chelyabinsk. He feels
well and tries to be active as much as possible: walks a dog,
excersises. The last lung CT scan showed a negative trend: it had
revealed fibrosis - extensive scarring of the lungs. The findings of
the study were sent to his St. Petersburg's doctor, who should decide
on an treatment.
10.07.2014 Bone marrow transplantation for
Misha Stepanov has been
postponed until fall. While he is still receiving maintenance
chemotherapy, he visits the clinic twice a week for tests. Following
the recent injection of cytosar, Misha's blood counts fell slightly.
He is now at a dacha, and he feels rather well.
03.07.2014 On June 30th
Alexandra Yusupova underwent the first round of
treatment with Adcetris. The doctors recommend 13 such rounds in
total, followed by a bone marrow transplant from an unrelated donor.
Although it's only been a few days since the first round, Alexandra is
feeling better already and has an easier time breathing and talking.
Alexandra's mom would like to thank all those who help raise funds to
save Alexandra's life!
03.07.2014 Mikhail Fufaev's
bone marrow is clear of cancer cells, and the
donor transplant engrafted and functions normally. The doctors have
not yet determined whether he should continue the Vidaza therapy.
Mikhail does not exhibit any signs of GVHD at the moment, but he is
continuing immunosuppressants for now. Cytomegalovirus is under
control. Mikhail is being seen on an outpatient basis and is feeling
rather well overall.
Yulya Vodopianova relapsed. Last week the young
woman underwent a course of antirelapse chemotherapy; she is scheduled
to receive an infusion of donor lymphocytes to promote the
"graft-versus-leukemia" reaction on July 7th. With the low blood
counts, Yulya developed bilateral pneumonia and was prescribed
appropriate therapy. Yulya is in fighting spirits and intends to fully
conquer the disease.
01.07.2014 Irina Maximova
had a third round of Vidaza in June. She is at
home now and feels well, but her blood counts, like at previously, are
recovering very slowly. Irina had a control puncture last week, but
the results are still not available. There are the plans for another
donor's lymphocyte infusion in the near future. The need for the
fourth cycle of Vidaza is under discussion.
01.07.2014 Only a partially compatible
bone marrow donor was found for
Nastia Sluchaeva, so it was decided not
to use him because of high risk. The search in the international
registry is continuing. Nastia is still followed at the day hospital,
she receives transfusions of blood and platelets regularly. Nastia
was diagnosed with a bacterial infection recently, for which
antibiotics were prescribed.
29.06.2014 Masha Kutsenkova
came to St. Petersburg for control tests and
photopheresis. She feels satisfactory, but complains of persistent
elevated temperature and headaches. GVHD is under control thanks to
immunosuppressants. Control puncture is scheduled for July 2.
26.06.2014 Dima Karpov
is on maintenance therapy with Ribomustine. He
feels well and lives an active life. PET results showed that doctors
managed to stabilize the disease. Bone marrow transplantation from his
mother was decided to be postponed, because of the high risk of the
procedure. There are still no matching bone marrow donors in the
international registry. Full examination is planned for July.
25.06.2014 Artem Karnishin
was examined in St. Petersburg. The examination confirmed complete remission
of leukemia. However, skin GVHD became worse giving rise to scleroderma.
A course of hormones improved the situation. Artem's lung condition is
unstable; he needs to take anti-fungal medication continuously.
At present, AdVita fund is buying it for him. Doctors plan to allow
Artem go home to Krasnodar Krai in the near future.
23.06.2014 A new examination has confirmed
Maxim Indik's complete
remission and doctors soon plan to allow Maxim to go back home to the
Far East. He is happy: during his recovery he really missed his family
and friends. Maxim will have to return to Petersburg for examination
in September, a year after his bone marrow transplant.
23.06.2014 Olga Shmygleva
is still in Chelyabinsk, going weekly for the
tests, and sending the results to her doctors in St. Petersburg by
e-mail. Control PET scan was not done yet: the machine is still under
repair. Olga's kidneys are stable, although creatinine is elevated.
Olga now walks everywhere herself, but can only cover short distances.
23.06.2014 On June 19th
Dmitry Manturov underwent a PET-CT, by the
results of which don't show any metabolic activity of a tumor. On June
20th he was given a third injection of Adcetris. Dima has been feeling well.
23.06.2014 In May it was three years since
Elena Plis's bone marrow
transplant. A control puncture confirmed remission. Donor's transplant
is functioning well. Elena is giving her heartfelt thanks to everyone
who helped her get better: her doctors, nurses, family, friends,
AdVita fund employees and volunteers, and people close to her and
23.06.2014 In June
Amir Shataev and his mom went to Essen for a control
examination and a planned prosthetic eye replacement. An
ophthalmologist and oncologist have confirmed that there are no
recurrences and so far no interference is required. Amir's mom is
asking for help with living expenses, clinic bills, and a new
prosthetic (the total will be about 1000 euros).
13.06.2014 Dmitry Manturov
continues to receive therapy with Adcetris;
it was administered again on 5th and 26th of May, and donor
lymphocytes were infused on 10th of June. PET/CT scanning is planned
to evaluate treatment effect. There is an improvement in his lungs.
He is continuing therapy.
11.06.2014 Andryusha Sharoglazov
underwent tests in St. Petersburg that
confirmed him to be in complete remission for leukemia. CT scan
revealed lesions in his lungs of apparent bacterial origin, and
appropriate treatment was prescribed. Andrei feels great, he had a
wonderful time in St. Petersburg and is looking forward to going back home.
11.06.2014 Vadim Antipov's
chronic skin GVHD persists and aggravates
once steroids are canceled. Recently there was another onset of GVHD
accompanied with high fever. After the therapy, Vadim's skin condition
has improved, and he no longer has fever. He is in complete remission
of primary disease, donor’s bone marrow is functioning well.
11.06.2014 Ulyana Veselovskaya
is still in St. Petersburg, she continues
to receive treatment for GVHD. In April she was diagnosed with
aspergillosis complicated by bacterial infection and pulmonary GVHD.
Now her pulmonary condition has stabilized, but intestinal GNHD is
suspected. Today Ulyana underwent control puncture. The results are
not available yet.
Dmitry Soshko was diagnosed with a relapse in
bone marrow. For three weeks Dmitry was receiving chemotherapy with
Cytosar at Leningrad Regional Hospital, and today he received donor
lymphocytes infusion at Gorbacheva Institute to trigger "transplant
vs. leukemia" reaction. Dmitry is recovering, and he feels rather
Anya Burilova developed skin sores on her left
hand. Fortunately, therapy she was administered in late May have
helped: her skin now looks better and the lesions are healing.
Anya is spending her time reading, drawing and gardening with her mom
at their holiday cabin. She is planning to travel to Moscow for the
10.06.2014 The doctors once again tried to take
Gera Efimov off NPlate.
Initially his blood counts were normal, but then the platelet count
started going down. Tomorrow he will have another NPlate injection.
The doctors are still deciding on further treatment. The boy is
feeling well. He is still active and cheerful.
10.06.2014 The control tests confirmed
Georgy Tarakanov's complete
remission. In May Georgy completed his 6th cycle of Vidasa-based
preventive treatment. He will soon have another evaluation at the
Institute of Mycology. He is still on VFend. Georgy feels well and
continues to work.
10.06.2014 The experts at Military
Medical Academy advised
against hip replacement surgery in the near future. They believe that
his body may not cope with the stress. Igor's mother is asking those
who were also diagnosed with myeloid leukemia and had a hip
replacement to get in touch with her to share their experience.
09.06.2014 Arseny Kochukov
is monitored as a day patient. He feels
rather well. If he takes the hormones every other day, he spikes
fever, and if he takes them daily his blood pressure goes up. He will
soon have his third mesenchymal stem cell infusion. The growth
hormone therapy is working and he is already 1 cm taller.
09.06.2014 Misha Stepanov's
bone marrow transplant from his father has
not been scheduled yet. Misha is currently with his family at their
dacha. He feels well, spends a lot of time outdoors, runs around,
jumps, picks lilac and dandelions and gives them to girls from the
09.06.2014 The lung exam showed that
Sasha Khomushku has fungal
infection and cytomegalovirus. Sasha was prescribed appropriate
treatment. He is now feeling better and his cough is going away.
Tomorrow he will be discharged to go home to Tyva. His next check-up
is scheduled for late August.
06.06.2014 Lenura Lukkonen
is in remission of leukemia, donor's bone
marrow is working well, but due to reduced immunity Lenura is still
vulnerable to infections. A week ago pneumonia was diagnosed once
again. Lenura's condition improved after beginning of therapy, her
temperature went down, and her cough subsided.
06.06.2014 Unfortunately, the tests from April
showed that Nino Utiashvili's sarcoma continues
progressing and new lesions had appeared. Nino is receiving
chemotherapy under RIST protocol at Gorbacheva Institute since May 28.
Nino tolerates treatment OK, but walks with difficulty:
she cannot control one of her legs.
05.06.2014 Danya Vlasov
is in remission. He is seen as an outpatient and
he feels well. Sometimes he has fever due to immunity-related causes.
Mild intestinal GVHD was controlled quickly, Danya still has to follow
a diet, but despite that he has good appetite.
02.06.2014 Sasha Khmoushku
had come to St. Petersburg for a control
check, which showed a remission of leukemia. The donor's bone marrow
is working well, and Alexander's blood counts are normal. A pulmonary
examination discovered a respiratory disorder; lung GVHD is under
question. Due to lengthy hormonal therapy, pains in Sasha's leg joints
and muscles bother him and it's hard for him to walk. But despite all
issues, his mood is fine.
02.06.2014 Arseny Provorov
is in the ICU still, his condition is stable,
but serious. The boy maintains problems breathing due to a lesion that
grew in his mediastinum. A week ago a cycle of maintenance
chemotherapy was started. Arseny's pneumonia is treated with
02.06.2014 Yulia Vodopianova
was recently hospitalized again with a
fever and heavy breathing. Her temperature was brought down with the
help of antibiotics and the causes of her lung problems are being
investigated. A lumber puncture showed that the girl is in remission and her donor's
bone marrow has engrafted, but isn't working well enough. Yulia
remains weak and due to her breathing it's hard for her to walk. Her
mom takes her for walks in a wheelchair.
02.06.2014 Doctors have come to the conclusion
that the cause of Nikita Burenkov's lung
problems was GVHD in combination with a bacterial
infection. Currently, the state of the boy's lungs has notably
improved. Signs of skin GVHD and schlerodermia are still maintained. Overall,
Nikita feels fine and his blood counts are normal. Doctors have
allowed him go back home to Chelyabinsk and stay until November.
29.05.2014 On May 12
Vova Gusev underwent bone marrow transplantation
from his mother. His blood counts are very low for the time being.
Fortunately, there are no infectious complications. Vova feels OK
overall. This Saturday he plans to take a state examination in math,
which is a requirement to graduate from the 9th school year; an
examination in Russian language is scheduled on June 6.
29.05.2014 Movlid Tutuev
is in remission. However, his minimal residual
disease count grew. If it comes down based on next puncture results,
the boy will be transferred to maintenance chemotherapy and he will be
able to go home to Dagestan. Otherwise, doctors will consider bone
marrow transplantation from one of Movlid’s parents or siblings.
26.05.2014 We are sincerely grateful to Russian Help Fund
that agreed to cover expenses for repeat donor search for
Nastia Sluchaeva. The
search is already underway. Unfortunately, Nastia's blood counts are
unstable and she needs platelet transfusions twice weekly and whole
blood transfusion weekly. Nastia does not feel well: she has little
energy and gets tired easily.
21.05.2014 Olga Shmygleva
was allowed to go home, to Chelyabinsk, under the control of local specialists.
Supposedly, Olga will undergo an inspection in June there, and if everything's
alright, she'll come to Petersburg in August. Olga's transplant had engrafted,
her blood counts are still relatively low, she doesn't feel very well,
and there are serious problems with her kidneys' function.
16.05.2014 Oleg Silkin
is still at the hospital: the puncture showed
remission, the transplant is engrafting, but his blood counts are
still low. Last week Oleg was diagnosed with upper respiratory tract
infection which had to be treated with antibiotics. Oleg is feeling
unwell due to severe fatigue.
16.05.2014 Masha Kutsenkova
is seen as a day patient. She feels better
now, although she is still underweight. She remains in remission.
The cytomegaloviral infection is under control. CT scan results showed
improvement. GVHD is under control.
16.05.2014 Olga Lapshina's
health worsened: she has increased shortness
of breath and fatigue. The tests from the late April showed disease
progression. Olya was prescribed a new chemotherapy regimen. Control
tests are planned in two months.
16.05.2014 The control puncture showed 2.5% blasts in
bone marrow, but the doctors believe that in his case it is too early
to talk about remission. They are now considering a bone marrow
transplant from Dima's mother. Dima feels better. His blood counts
recovered after chemotherapy and the doctors allowed him to take walks.
Arseny Provorov's condition has gotten
abruptly worse. On May 5 the boy was brought to the ICU. Since May 11
Senya's been in an artificial coma. Thanks to therapy, the condition
of his lungs has managed to see improvement, however, the progression
of the main illness has yet to be stopped.
13.05.2014 In April
Arseny Kochukov had cytomegaloviral infection
which was taken under control. Last week Arseny had the third
infusion of mesenchymal cells. Intestinal GVHD symptoms persist for
now, and Arseny continues to receive steroids in small doses. If
tomorrow he has no fever and blood counts are good, Arseny and his mom
plan to go to the Hermitage Theater.
09.05.2014 Irina Prikhodko
is at home in Murmansk Region. She feels
rather well. On June 2 she is scheduled to come to R. Gorbacheva
Institute of Hematology and Transplantation for a control examination.
Irina and her family hope that its results will not be worse than last time.
08.05.2014 The CT scan performed on April 18 showed that
Shedi Buneb's tumor has decreased in size, and
his blood counts are at last within the norm. However, last week Shedi's
condition worsened again: he developed chest pains, fatigue, stomatitis
and fever. Shedi is due to be hospitalized at Petrov Oncology Institute
after the holidays.
08.05.2014 The CT scan performed in April showed that
Elena Plis has improvements in the condition of her
lungs and liver. In May she is planning to come to St. Petersburg for an
examination - it's been three years since her bone marrow transplantation.
07.05.2014 After the second chemotherapy cycle
the blast count in Misha Stepanov's bone marrow
remained the same. It is now 14%. The doctors have decided to perform
haploidentical bone marrow transplantation from his father. Misha
was allowed to go home for the holidays. He feels rather well,
is active, runs about a lot and takes pleasure in drawing.
07.05.2014 Roma Ignatovich
has undergone an examination in St. Petersburg, which confirmed that he
is in complete remission from leukemia. Roma is now at home in Kursk Region.
He feels rather well and is eagerly preparing to start school: he is
learning to read and write letters and numbers. This year he will start
the first grade. The doctors have recommended home schooling for now.
07.05.2014 Vanya Rusakov
has undergone an examination in Italy. His blood counts are improving,
and one of the agents that he used to take has been cancelled. Vanya will
continue to receive immunoglobulins until December.
05.05.2014 Olga Shmygleva
recovered after bone marrow transplant and at
the end of April she transitioned to an outpatient clinic. The control
lumbar puncture showed that the donor's bone marrow engrafted, but its
function is not yet satisfactory. Olga complains of infections in her
mouth and fever, the reasons for which are being verified.
05.05.2014 After three cycles of treatment with Adcetris,
Evgeny Khromov is feeling better, his appetite
returned as did his energy; his mood is good. At the moment Zhenya is
being treated according to a different protocol; his next checkup is in a month.
05.05.2014 When his doctors attempted to lower
Gera Efimov's dosage of
immunosuppressive drugs, his skin GVHD flared up and his platelet
counts started falling. He has returned to the prior levels of
immunosuppressant therapy. The doctors will be discussing his further
treatment in a board review. German has a cold at this time, but
nevertheless is feeling rather well.
05.05.2014 Control CT scan revealed that
Dmitry Soshko is not yet in
remission; the doctors are discussing a repeat round of chemotherapy.
Dmitry is now at home and feeling OK, but is bothered by GVHD of his
eyes and severe cough. After the May holidays he will return to the
Leningrad Regional Clinical Hospital to continue treatment.
05.05.2014 Georgy Tarakanov
is feeling well; his blood counts are within
norm. Tomorrow he will undergo a control lumbar puncture at the
Leningrad Regional Clinical Hospital; after that the doctors intend to
start the next prophylaxis treatment with Vidaza. Based on the April
CT, Georgy's lungs are improving.
05.05.2014 Vladimir Dmitrievsky
is in remission, the donor's bone marrow
engrafted and is functioning well, but signs of minimal residual
disease remain. He was recommended monthly prophylaxis treatment with
Mabthera. Vladimir will be treated at Central Clinical Hospital of
Federal Security Forces in Moscow.
29.04.2014 Danya Vlasov
has recovered quickly after the bone marrow
transplantation. Two weeks ago he was discharged to a day patient
facility. Control puncture has confirmed the remission, donor bone
marrow has fully engrafted and is working properly. Last week fever
and early signs of the intestinal GVHD were observed. He was
prescribed appropriate therapy.
29.04.2014 Igor Simonov
is in remission in regards to leukemia. However,
Igor's bones and joints are undergoing destruction. Endoprosthetic
replacement of hip joints was recommended. Currently, the location to
perform the replacement of the left hip joint is being discussed. In
addition, Igor was recommended by an ophthalmologist to undergo a
cataract extraction and an intraocular lens implantation on his right eye.
23.04.2014 Diana Ibragimova
is planned to have a surgery to replace two
knee joints in Tubingen, Germany. Prof. Volker who operated Diana
earlier agreed to perform the surgery. Diana was billed 22,000 euros,
and she will need 6,760 euros more for recovery post-surgery. Please help!
Vova Gusev's transplant has not engrafted.
The functions of Vova's own bone marrow could not be restored so far
and he has to have daily blood and platelet transfusions.
He is planned to have another bone marrow transplant - from his
mother. Vova is feeling rather well. He has good appetite and resumed
his lessons over Skype.
Dima Orekhov was diagnosed with a relapse -
with 19% of blasts in his bone marrow. Dima had a cycle of antirelapse
chemotherapy at the Gorbacheva Institute and he is now recovering.
The family is really struggling financially. If someone would like to
help Dima and his family, please contact them directly.
23.04.2014 Galina Gavrilova
is asking for help with paying for plasmapheresis that costs 20,000 rubles.
22.04.2014 Nikita Burenkov
has multiple lesions in his lungs. Their
nature is being clarified; the test for fungal infection is negative.
In addition, Nikita's venous thrombosis has reactivated, due to which
he cannot walk again. He continues treatment for skin and mucosa GVHD
with immunosuppressive agents. An infusion of mesenchymal cells is planned.
22.04.2014 In early April
Anya Burilova's skin GVHD flared up again,
and she is planned to undergo the third infusion of mesenchymal cells
presently. Individual sessions of physical therapy are doing Anya
good: her arms, legs and back have straightened out considerably. Anya
devotes a lot of time to drawing and continues her studies according
to the school curriculum, which includes two foreign languages
(English and German).
22.04.2014 Danya Lutokhin
has been hospitalized at the hematology
unit of the Republican Scientific Center for Emergency Care in Astana.
His blood counts are very low and he has a high fever. Based on the
puncture, Danya has a relapse of lymphoma, complicated by infection.
Therapy with ribomustine is being considered.
22.04.2014 Katya Polyubina
came to St. Petersburg for a control
examination, which confirmed that she is in remission. The donor bone
marrow has engrafted and is functioning well; however, minimal residue
disease is present again. Katya is planned to continue treatment with
Vidaza to prevent a relapse. She will undergo a chemotherapy cycle presently.
22.04.2014 After doses of hormones had been reduced,
developed acute GVHD of the mouth. The doctors decided to reintroduce
the hormones and prescribed Masha Gleevec and photopheresis. In
addition, she has had another bout of CMV infection and has been
prescribed appropriate therapy. The fever is gone now. Masha feels
better and is able to eat.
21.04.2014 Yulia Vodopianova
recovered after the bone marrow transplant.
Last week, she was discharged for outpatient observation. The control
puncture showed that she is in remission and that bone marrow
transplant is working normally. Few days ago Yulia started to
experience intestinal graft vs. host disease symptoms and she was
prescribed appropriate therapy. Yulia is complaining about fatigue
and shortness of breath, but overall she is feeling relatively well.
21.04.2014 Dmitry Manturov
had a cycle of Ch1VPP chemotherapy. He
tolerated chemotherapy without serious complications, even though he
is having low thrombocyte and neutrophil counts.
On the April 8th, Dmitry had donor's lymphocyte infusion. He still
continues to experience chronic GVHD, but is feeling rather well
20.04.2014 Sasha Novokreschenov
arrived in St. Petersburg for control
examination which confirmed complete remission for leukemia. Sasha’s
lungs condition is getting better little by little. Eyesight is not
changing any more. He feels well. This week Sasha and his mom are
planning to go back home to Karelia.
20.04.2014 Timur Rudyko
has completed a cycle of anti-relapse
chemotherapy at Gorbacheva Institute. Unfortunately, he developed
bacterial pneumonia associated with low blood count, and was
transferred to the intensive care. Timur receives several antibiotics.
12.04.2014 Fortunately, a round of high dose chemotherapy helped
Irina Maximova enter remission.
To strengthen response, it was decided to continue with a few more
rounds of chemotherapy with Vidaza. Currently
Irina is finishing the first round and she is tolerating it OK. No
GVHD symptoms have been observed so far. The plan next week is to
administer the third infusion of lymphocytes from the donor.
12.04.2014 After medical board discussion regarding
Nastia Sluchaeva at
Gorbacheva Institute it was decided to recommend a second bone morrow
transplant from a different donor. The bill from the donor registry
will be prepared shortly. Unfortunately, Nastia's blood counts stay
very low; she is not feeling well and complaining of lack of energy
12.04.2014 Movlid Tutuev's
cytogenetic test results showed that his
minimal residual disease is practically absent. On the April 23rd
Movlid will undergo repeated lumbar puncture, for treating doctors to
confirm that he is in remission and can be discharged home to
Dagestan. Movlid feels well and is very active.
12.04.2014 Evgeny Konovalov
had control tests that confirmed remission.
The transplant is functioning well. Zhenya is home but recently had a
viral infection. He is feeling OK now, although sometimes he
complains about shortness of breath and low energy.
10.04.2014 Maxim Indik remains in
complete remission, but in doctors' opinion the risk of relapse is still high.
It is planned to administer another donor lymphocyte infusion.
Maxim is seen as an outpatient. His blood count is normal. Recently
Maxim had a viral infection, but now he feels rather
well and he continues his school studies.
09.04.2014 Anya Lomonosova's
remission is sustained. Donor bone marrow
engrafted and functions well. However, skin and mucosa GVHD flared up
again, and Anya receives appropriate therapy. Lately Anya began
feeling worse; she suffers from fatigue, weakness and nausea. The
doctors are trying to determine the reason for it.
09.04.2014 Oleg Silkin's
bone marrow transplantation was successfully
performed on April 3rd. His blood counts are now falling. His appetite
is poor because of the nausea, but in general his condition is
satisfactory. There are no infectious complications.
03.04.2014 Sveta Osufieva
is still at home in Karelia. She is feeling fine and her blood counts are normal.
She is still showing mild signs of skin GVHD. In late April she will be coming to
St.-Petersburg for a check-up and next week she will travel to Petrozavodsk
to apply for treatment quota.
02.04.2014 Olga Shmygleva's
transplanted bone marrow has engrafted and is functioning well.
Unfortunately, kidney problems led to fluid retention and hydrothorax.
Olga had to be admitted to the ICU. She spent
several days on the ventilator and started dialysis. Currently her
condition is stable. She can breathe by herself.
02.04.2014 Arseny Kochukov
had two mesenchymal stem cell infusions, and
his GI function is more or less back to normal. The doctors continue
lowering the doses of hormones, but it consistently triggers fever.
Arseny is receiving appropriate therapy.
02.04.2014 Fortunately, the biopsy confirmed
remission: there were no active tumour cells in a lymph node. Adcetris
therapy is not planned to continue at this point. Volodya is
currently at home. He regularly goes for blood testing and is feeling well.
02.04.2014 Gera Efimov's
blood counts are finally growing, and the second course of MabThera was
cancelled. He is seen as an outpatient, and is feeling much better.
Gera has been very active lately and is really enjoying long walks.
Tomorrow is Gera's birthday: he is turning 6!
Anton Gasnikov had a relapse (CNS leukemia),
but the chemo worked and the MRI as of March10th showed no lesions.
Anton is feeling better and is being administered chemo and high doses
of Sprycel. Radiation therapy to prevent another relapse is planned.
02.04.2014 While recovering after the chemo,
Shedi Buneb's blood counts
rose, and he was moved to outpatient follow-up. Control tests are
scheduled for near term, followed by surgery to remove residual tumor.
Shedi is feeling well, but he is too weak to walk and has to use the wheelchair.
28.03.2014 Movlid Tutuev had a follow-up
puncture which confirmed the remission. His blood counts are now normal.
The doctors are waiting for the results of the cytogenetic test to decide on
further treatment tactics. The anti-fungal Noxafil has been canceled.
Movlid's condition is monitored at the day patient facility. He is feeling fine.
The boy is feeling quite happy.
28.03.2014 Danya Vlasov had a bone
marrow transplantation performed successfully on March 26. The boy is feeling fine,
although his body temperature is a little high due to immune system reactions.
The boy's blood counts are going down, and he has no complications caused by infections.
27.03.2014 Nastia Fedorova had a
follow-up examination in January which revealed a relapse. Nastia did not respond
to the therapy. Despite an elevated temperature the girl is feeling ok. Tomorrow
she is going home to Michurinsk where she will be administered maintenance therapy.
27.03.2014 Oleg Silkin had been
administered the therapy for hepatitis in Saratov and came to St. Petersburg for
the bone marrow transplantation. Pre-transplantation chemotherapy has started today.
The transplantation is scheduled for April 3. Oleg is feeling ok.
27.03.2014 Misha Stepanov has been
hospitalized to the Raisa Gorbacheva Institute of Children's Hematology and
Transplantology again for the second course of high-dose chemotherapy.
Further treatment will depend on the results of the puncture which will be
performed once the course is over. Misha is feeling ok but he is very
unhappy to be back to hospital.
27.03.2014 Vova Gusev is having a hard
time recovering after the bone marrow transplantation performed on March 6. Complications
include pulmonary edema, heart problems, hemorrhagic cystitis, and intestinal problems.
The doctors are now suspecting a fungal infection in the lungs, so the boy was prescribed
the necessary treatment. The follow-up puncture is scheduled for the beginning of April.
26.03.2014 Dima Orekhov
is being followed as a day patient. He feels rather well, and all his test results are normal.
Control examination is planned shortly. After Dima's doctors had tried to cancel hormonal
agents, his skin GVHD flared up again. It is planned to strengthen
26.03.2014 Ludmila Krasikova
is in remission. The donor bone marrow
has engrafted and is functioning properly. Intestinal GVHD could be
controlled, and in early March Ludmila was released to be followed as
a day patient. Due to a bout of CMV infection, her blood counts have
dropped, and she feels very fatigued. She is due to be hospitalized at
City Hospital No. 15 presently.
26.03.2014 Georgy Tarakanov
is in sustained remission. He feels well
and continues to receive chemotherapy with Vidaza to prevent a
relapse. Last week he underwent the fifth treatment cycle, which he
tolerated rather well. Control examination is planned presently.
Georgy also continues to take antifungal agents. He has finally
managed to get them under a state quota.
26.03.2014 Dmitry Soshko
underwent a chemotherapy cycle at Leningrad
Regional Clinical Hospital. He had a hard time tolerating it and has
developed a fever and severe mucositis. Dmitry receives antibiotics
and painkillers. His hemoglobin levels are quite good, but his other
blood counts are low as of now.
26.03.2014 Thanks to massages, paraffin baths
and physical therapy, as well as infusions of mesenchymal cells, the condition of
Anya Burilova's skin and joints has improved considerably.
She is planned to continue individual sessions of physical therapy at home with the
instructor. Anechka feels well and studies for her entrance exams at
the art school. If she passes them well, she will be accepted into the second year.
26.03.2014 Unfortunately, the puncture showed that
Timur Rudyko has
relapsed: he has 70% of blasts in his bone marrow. He is scheduled to
be hospitalized at R. Gorbacheva Institute of Hematology and
Transplantation for chemotherapy and subsequent bone marrow
transplantation from one of his parents. Timur's legs ache, but apart
from that he feels rather well. His blood counts are within the norm.
25.03.2014 Elena Vozhova
is at home now, fighting a viral infection.
Her temperature has gone down, but she is still fatigued. Once Elena
has recovered, she is planned to undergo radiation therapy to prevent
a relapse of CNS leukemia. Based on the puncture, Elena is in
remission, the donor bone marrow has engrafted and is functioning well.
25.03.2014 Vladimir Dmitrievsky
is in remission. However, an infusion
of donor lymphocytes is planned in April to prevent a relapse. During
the examination Vladimir was diagnosed with fungal infection of the
lungs and prescribed appropriate therapy. Vladimir is now being
treated at a hospital in Moscow. His temperature has gone down, but he
still has a strong cough.
22.03.2014 Maria Kutsenkova's
intestinal GVHD could be controlled. She is on a less stricter diet,
and the doses of hormones are being
reduced gradually. Now Masha is being treated for suspected bronchitis
and bilateral sinus infection. In addition, she has developed joint
pain and receives calcium supplements to prevent osteoporosis.
22.03.2014 The condition of
Nikita Burenkov's skin, joints and mucosa
has started to improve. He can now get up, tries to walk around and
has at last been able to remove his sunglasses that he had to wear
even at home, as his eyes were very sensitive to sunlight. There have
been no examinations regarding Nikita's basic disease. Nikita feels
rather well and is in good spirits, as his dad has come to visit.
Arseny Provorov's therapy so far failed to
stop the disease progression. This week he started the second round of
chemotherapy. Afterwards, another infusion of lymphocytes is planned.
Senya feels well overall, although he started to complain of fatigue recently.
19.03.2014 Unfortunately, control tests
revealed progression of Svetlana Luchinskaya's
glioma. Doctors advised her to undergo two cycles of
chemotherapy with Temodal and then to have the tumor removed on
CyberKnife radiosurgery at Burdenko Institute of Neurosurgery.
Svetlana is at home in Murmansk now, where she receives chemotherapy
and feels unwell.
17.03.2014 Dmitry Manturov's
antifungal therapy was successful, but a
biopsy discovered Hodgkin's lymphoma in his lungs. He is now
undergoing chemotherapy under ChlVPP regimen, which will be followed
by donor's lymphocyte infusion. Lately, Dmitry had an exacerbation of
GVHD and increased thrombocytopenia, but he still feels rather well.
17.03.2014 Puncture results showed that
Yulia Vodopianova's genetic
dislocation remains, and it was decided to proceed to haploidentical
bone marrow transplantation from her father. Transplantation is
scheduled on March 18. The girl completed a course of preconditioning
chemotherapy. She feels well and determined.
17.03.2014 Unfortunately, Mabthera therapy failed to start
Nastia Sluchaeva's transplanted bone marrow function.
Nastia's blood count is still unstable. She continuously gets blood and platelets
transfusions. White blood cells count growth is stimulated with
medications. Nastia is seen as a day patient and she feels rather
well. Her further treatment is under discussion.
Irina Maximova was diagnosed with a relapse.
This week, she finished a cycle of high-dose chemotherapy at
Gorbacheva Institute. She tolerated it well. She also had donor's
lymphocyte infusion to stimulate "transplant versus leukemia"
reaction. Ira is now recovering. She has severe weakness.
15.03.2014 Misha Berezyuk
is at home, in Gatchina. He is receiving maintenance chemotherapy and
antifungal medications. Lung CT scan is planned in the nearest future.
Misha was recently ill with a bacterial infection, but it quickly
responded to treatment and now the boy is feeling relatively well.
Misha stays in an excellent mood.
15.03.2014 Lena Gavrilyuk
is feeling relatively well and can walk without support. The operated left
leg doesn't bother her, but the right one aches periodically.
Lena continues to take medications for bone regeneration.
In April, which will mark one year after the hip replacement surgery,
Lena plans to undergo testing at the Vreden Research Institute.
15.03.2014 Ivan Novoselov
came to Saint Petersburg for control tests,
which confirmed complete remission. Vanya feels well and enjoys life.
He plays sports, had a great time skiing in winter, and now took up
photography in hopes of making it his career.
15.03.2014 Alexei Krasnolutsky
decided to seek a second opinion on further treatment from the clinic in
Dusseldorf. Test results confirmed sustained complete remission of leukemia.
According to German specialists, there is no need for a bone
marrow transplant at this time.
15.03.2014 Galina Gavrilova
is asking for help with paying for services of home hurse to
provide her with treatment.
14.03.2014 Maxim Indik's
blood counts are within norm, although liver
enzymes remain slightly elevated. The control biopsy has been
rescheduled for mid-April. Mild skin GVHD is controlled with topical
steroids. Maxim feels rather well. He is home schooled by visiting
teachers; he interacts with his friends via the Internet.
14.03.2014 Alesha Laptev's
biopsy showed partial remission of aplastic
anemia. His hemoglobin and white blood cells are within normal
limits, while the platelet count remains slightly decreased.
Two weeks ago Alesha developed a fever that went away after a course
of treatment with antibiotics. Now he is feeling better but, due to
low immune function, is still cautious about going outdoors.
14.03.2014 Veronika Nikulina
is being monitored as an outpatient, her
blood counts remain within normal limits. The tests confirmed
Veronika's intestinal problems were caused by chronic GVHD and not by
the macrobial imbalance. Due to steroid therapy, she occasionally
experiences weakness in the legs, but she feels rather well overall.
14.03.2014 Unfortunately, the tests prior to
autologious bone marrow transplantation revealed that
Nino Utiashvili's disease had spread.
Next week Nino is expected to return to Oncology Institute in
Pesochnoe, where a different chemotherapy protocol is planned for her.
In the meantime, Nino remains in Olgino and feels rather well.
12.03.2014 In February Anya Lomonosova
started experiencing strong headaches, as well as nausea, high blood pressure and fever. An
examination in Saratov did not reveal any abnormalities. All symptoms
disappeared as suddenly as they had appeared. She is now at home and
feels rather well. After 20th March Anya and her mother are planning
to come to Saint-Petersburg for examination.
12.03.2014 Evgeny Tolstikov
has some changes in his lungs, but there is
no need for medication. He is now at home in Volgograd region. His
blood counts are normal, and he feels stronger every day.
At the end of April Zhenya will come to Saint-Petersburg for another examination.
11.03.2014 Mikhail Fufaev's liver GVHD
is controlled now. The steroids dosage is gradually being decreased.
However, he was diagnosed with cytomegalovirus infection and is now receiving appropriate therapy.
Misha feels relatively well and this week he will have the second
cycle of therapy with Vidaza.
11.03.2014 Alla Korotich is still at
home in Poltava and she feels rather well. All her medications except heart drugs (due to
persistent tachycardia) were canceled. She has almost no issues with
breathing and can walk slowly for about 20 minutes. The still has
cough, but it had subsided significantly.
06.03.2014 Danya Vlasov's
bone marrow transplant was moved to March 28th. On March 20th he will
be hospitalized for pre-transplant chemotherapy. He is now undergoing tests and is
05.03.2014 Unfortunately, the attempts to bring
Misha Stepanov into
remission were unsuccessful so far. After a high-dose chemotherapy
cycle, he has 14% of blasts remaining in his blood. He was discharged
to the outpatient treatment. Further treatment plan and options will
be discussed in the beginning of next week. The options are either do
bone marrow transplant with Misha's father being a donor, or
administer another chemotherapy cycle prior to it.
04.03.2014 Alexei Nadyaikin
is still at home in Mordovia. He is not
feeling too well, as he started to have trouble breathing, and
wheezing in the chest was observed. He continues to have weakness in
his legs, and occasionally he experience blood pressure rise. In
February, Alexei traveled to Saransk for the lumbar puncture and it
shows that no blasts were observed. In mid-March Alexei is planning to
travel to St. Petesburg for additional testing and evaluation.
03.03.2014 Control puncture confirmed
Svetlana Osufieva's remission,
donor's bone marrow has engrafted and is functioning well. She needs
to continue treatment with all prescribed medications, including
antifungals. Sveta is now at home in Sortavala. She feels rather
well, but is very sensitive to weather changes.
03.03.2014 Dima Yablochkov's
condition is stable: cough and difficulty
breathing persist, but he has no fatigue. He continues steroid
inhalations to treat GVHD. Intake of antifungal drug was cancelled.
Dima does not have any back pain. He tries to be active: he regularly
goes for a walk and swims in a pool once a week. Examination for
osteoporosis is scheduled for April.
03.03.2014 Thanks to Vidaza therapy,
Vova Gusev's genetic mutation is
not detectable. However, the doctors concluded that in order to
consolidate the results he requires another bone marrow
transplantation. Transplantation is scheduled for March 6th. Vova is
now undergoing a pre-transplantation chemotherapy. He is tolerating
it rather well, and his only complaint is a loss of appetite.
01.03.2014 Olga Shmygleva's
transplantation took place on February 26 went as planned.
She had an allergic reaction during the stem cell infusion, but the doctors
were able to reverse it. The next day Olga spiked fever and was diagnosed
with pneumonia in lower lobe of right lung. After therapy with
antibiotics, her temperature went down to 37.6. Olga feels better now.
01.03.2014 In February
Elena Plis had a scheduled check-up in
St.-Petersburg. The results of all bone marrow tests are normal, and
she is in remission. Last week she had a sudden attack of skin GVHD,
but the doctors were able to get it under control. However, control CT
scan discovered focal pneumonia. Elena was prescribed antifungal drugs.
01.03.2014 Egor Moskalenko
had surgery to restore his vocal cords. The
larynx and trachea are clear now. The doctors only had to remove a
tiny little papilloma. Speaking is now strictly prohibited. Egor
feels well and is healing quickly. Next week the doctors will once
again treat Egor's vocal cords and will then insert a special tube,
which will need to be removed in September at another visit.
Shedi Buneb's bone marrow exam showed no
abnormalities. His blood counts were back to normal and he could
complete the second cycle of chemo at the Cancer Research Institute.
Now his blood counts are down again and he needs help from blood donors.
Blood donations for Shedi can be done at the following address: 68,
Leningradskaya ul., Pesochny. The blood center is open on Tuesday and
Thursday, 10 am - 1 pm. His blood type is 0(+).
28.02.2014 Pre-transplant screening showed that
Oleg Silkin has acute
hepatitis C. The transplant has been postponed. Oleg went back to
Saratov for treatment.
Once his hepatitis is controlled, he will come back to St.-Petersburg
for bone marrow transplant. He is feeling fine.
28.02.2014 The doctors were able to establish why
health was deteriorating: he had dysbacteriosis and intestinal GVHD.
Because of this his body wouldn't digest food.
Arseny was nauseous, had spasms and was in pain and
couldn't eat. Now he is feeling better thanks to therapy. Since early
February Arseny is monitored as a day patient. He is feeling rather
well, is very active and runs a lot around the apartment.
28.02.2014 Movlid Tutuev
is in remission, but the bone marrow is not
functioning fully. When his blood counts are back to normal, he will
have another puncture which will help
determine the subsequent treatment. Currently Movlid is monitored as
a day patient. He is feeling well and is very active.
28.02.2014 The second bone marrow transplant from
mother is still postponed: the little girl spiked fever and is now
receiving antibiotics. She is not getting any more platelet transfusions,
but she needs biweekly blood transfusions. Katya is feeling fine. She
sometimes feels down, but remains active.
28.02.2014 Uliana Veselovskaya
is undergoing GVHD treatment as a day
patient. Her skin condition is a bit better, but lately she had
trouble breathing and had fever for a few days. The tests
showed bacterial infection and she was prescribed antibiotics.
Pulmonary GVHD is still suspected.
27.02.2014 Alexander Zverev
is back in Tver. He recently completed another cycle of chemotherapy
under ABVD protocol. He will soon have
another cycle and will then need to come to St.-Petersburg for control
tests. His back pains are back and sometimes his hands and legs go
numb. He is monitored by a neurologist and once a month receives
medications to strengthen bone tissue.
27.02.2014 After he had been taken off immunosuppressants,
skin GVHD got worse and he was put back on Cyclosporine and hormones.
Currently his GVHD is controlled, but his platelet counts are down.
Next week he is scheduled for puncture, after which further treatment
will be discussed. Gera is feeling fine. He has a very good appetite
due to steroid therapy but his mood changes with a lightning speed.
27.02.2014 The February exam has showed that
Anya Krasnoshtanova had
improved. Anya was recommended three more cycles of VePesid.
Afterwards, the doctors will once again consider the possibility of
Gamma Knife radiosurgery. Anya has a cold right now, but overall she
is feeling well. She often goes to Repino to visit her grandma and to
get a bit of fresh air.
25.02.2014 Vanya Rusakov
is officially allowed to attend kindergarten
and go to a swimming pool - both our and Italian doctors agreed on
this. We are planning to start kindergarten in September, and sign up
for a swimming pool in March. Vanya will be receiving monthly
immunoglobulins up until May.
25.02.2014 The checkup showed changes in
Dima Orekhov's test values had
been caused by cytomegalovirus, which was successfully treated. Dima
is now seen at the outpatient day clinic. There is some lingering
cough but overall Dima is feeling well. As far as his primary
diagnosis, Dima is in sustained remission: the donor's marrow has
fully engrafted and is functioning well.
25.02.2014 Fortunately, the repeat biopsy showed remission and
Timur Rudyko was discharged to a day clinic.
With blood counts having recovered, Timur is feeling fine. During Olympics,
he has actively rooted for our team. Now Timur is studying hard to catch
up in school.
Dmitry Soshko has been diagnosed with
isolated relapsed disease limited to the gum tissue. Today he was
admitted to LOKB; a cycle of chemotherapy with Cytosar followed by
possible radiation therapy is planned. Dmitry is feeling relatively
well; he continues to receive treatment with Vfend for fungal
24.02.2014 On February 17,
Ludmila Krasikova was discharged from
hospital, but yesterday she was taken back to hospital with severe
intestinal GVHD. Currently Ludmila is in intensive care. Hormonal
therapy made her feel a little bit better.
24.02.2014 Vladimir Dmitrievsky
is in remission. The donor's bone marrow
has fully grafted and is working well. Vladimir will be seeing a
doctor in Moscow, and plans to visit St. Petersburg only for control
examinations. Currently Vladimir is in Moscow, and he doesn't feel
very well: the diagnosis is bilateral pneumonia, and he receives
24.02.2014 Georgy Tarakanov
is seen at Leningrad Regional Clinical
Hospital. His blood counts are normal, he feels fine and goes to work.
Control puncture and a cycle of Vidaza are planned for the next few days.
Due to chemotherapy, slight signs of skin GVHD have returned. Georgy
continues taking antifungal drugs.
24.02.2014 After lymphocyte infusion a month ago,
Elena Vozhova still
has not had any GVHD symptoms. A control examination is scheduled for
this week, and based on its results the doctors will make a decision
concerning further treatment. Elena has fully recovered after
chemotherapy, her blood counts are back to normal. She is at home now
and feels well.
Nikita Burenkov suffered from acute GVHD of mouth.
He was prescribed photopheresis and hormones. Lungs examination showed
improvement, but coughing is still there. Nikita is moody, but he
studies with undiminished enthusiasm. The boy is a straight A student.
His teacher speaks highly of him.
20.02.2014 The date of
Danya Vlasov's bone marrow transplantation was
scheduled for March 26. Danya is at home and he feels well, although
he is a bit worried because of the upcoming transplantation. Donor
search for Danya has been paid for in full, but his family still needs
2,500 euros for transplant delivery to St. Petersburg.
18.02.2014 Denis Tsupriyan
continues treatment on an outpatient basis.
Yesterday he stopped taking hormones, though for now he will continue
on the immunosuppressants. Denis remains in remission. However, he is
weak and tires easily. For now, he tries to study at home and does not
attend the lectures and seminars at his college.
Arseny Provorov relapsed with an isolated
mediastinal tumor. Yesterday he was admitted to the clinic; today he
started chemotherapy with Atriance. In the future the doctors also
plan to do a transfusion of donor's lymphocytes. Arseny feels
18.02.2014 Maria Kutsenkova
is continuing treatment at Gorbacheva
Institute. She feels better, and her mood and appetite improved. The
doctors started reducing her hormonal intake, but she is still
receiving intravenous nutrition. Colonoscopy results will be in next
week. The doctors took off the stitches that Maria got after her
accident. To Masha's joy, the scar is barely noticeable.
Konstantin Korytov is still on a ventilator in intensive care,
as he is unable to breathe due to issue with his lungs. Konstantin's mother is
sincerely grateful to all their supporters for their help with paying for Konstantin's
treatment. She sends her good wishes to everyone.
15.02.2014 Misha Berezyuk
had fever in January, and antibiotics did not
help. Lesions in his lungs were discovered, tentatively of fungal
origin, and Misha had been prescribed appropriate therapy. By now his
fever went down, the he feels better, and was discharged for
outpatient follow-up a week ago.
15.02.2014 Ludmila Krasikova
recovered after bone marrow transplantation
and there are the plans to move her to outpatient monitoring in the
near future. Control puncture showed remission, donor bone marrow
engrafted and is working, but blood counts are still slightly below
normal. Ludmila has a cold and receives antibiotics. Manifestations of
GVHD have not been observed.
15.02.2014 With the help of hormonal therapy
and MabThera it was possible to raise
Nastia Sluchaeva's hemoglobin level, but during
hormonal therapy her blood sugar rose. Insulin injections helped bring
sugar level to normal. On February 12th Nastia was discharged for day
hospital. Hemoglobin has been staying at the same level, but
platelets have to be regularly transfused.
14.02.2014 In January
Adelya Faritova took control tests that confirmed
remission. Transplanted bone marrow engrafted and works well. Adelya
feels well. She is now at Sheredar camp in Vladimir region. She plans
to return to St. Petersburg on February 17th.
14.02.2014 Based on repeat puncture,
Yulia Vodopianova is in
remission, but there is still a genetic translocation that makes
disease recurrence possible. Haploidentical bone marrow transplant
from Yulia's father is being discussed. Yulia is monitored on an
outpatient basis, she feels well and full of energy. Her blood counts
are within normal limits.
14.02.2014 Misha Nikitin
is at home in Tikhvin. Control tests in St.
Petersburg are scheduled for the first half of March. Manifestations
of GVHD are not present, but he still takes small doses of
immunosuppressive drugs. Misha was very happy to come back home, he
feels much better, and walks outside a lot. He no longer has
12.02.2014 Lesha Laptev's
puncture results were normal, the bone marrow
is functioning well, although platelet counts are sometimes low. Two
weeks ago he was taken off antifungals and today he was taken off
immunosuppressive drugs. Lesha was recently diagnosed with bronchitis
and is being treated with antibiotics. He feels relatively well.
12.02.2014 Nino Utiashvili
has recovered after chemotherapy and is
currently getting ready for autologous bone marrow transplant: she is
having dental work done and undergoing in-depth physical examination.
Nino's physical condition is not bad, but she is struggling
emotionally. She gets a lot of support from people around her and her
sister Maria, who chats with Nino over Skype.
Veronika Nikulina had fever and was prescribed
antibiotics. In general she is feeling fine, but her intestines bother
her. The tests showed disbacteriosis rather than intestinal GVHD. She
is receiving appropriate therapy. First graders are now on holidays,
so Veronika is now on a school break.
12.02.2014 Natalia Kharatishvili's
condition has worsened somewhat: she
has problems breathing and her legs are swollen. Natalia is taking
Albumin and is monitored by a pulmonologist. She is scheduled for the
complete pulmonary function test. Because of possible lung GVHD and
recurrent skin GVHD Natalia is back on immunosuppressants.
12.02.2014 Dmitry Soshko
is in remission. To prevent the relapse, Dima
continues Vidaza-based chemotherapy. He will soon start his fourth
cycle. He is still taking antifungal drugs (provided by the Committee
for Public Health). Dima is feeling well, and is currently looking for a new job.
Roman Pekov still has problems with his
tendons. He is unable to straighten his legs despite exercises. Roman
cannot use manual wheelchair due to pain in his hands. He needs an
electric-powered wheelchair that costs 50,000 roubles. Please help!
11.02.2014 Zhenya Tolstikov
has come to St. Petersburg for lung function
test because in December CT scan has shown a lesion of uncertain
origin. He is scheduled for bronchoscopy and another CT scan. Zhenya
is feeling rather well.
11.02.2014 Arseny Provorov
is monitored as a day patient. He is feeling fine. The MRI on February
7 showed that he is stable. He will soon be scheduled for donor
lymphocyte infusions. The boy still shows
no signs of GVHD. It is not yet clear whether he will have
chemotherapy because he does not tolerate it well.
11.02.2014 Katya Polyubina's
control tests confirmed remission. Her blood counts are normal.
To prevent a relapse, she has completed another cycle of Vidaza-based chemotherapy.
She still has problems with her lungs and may have GVHD. In general
Katya is feeling rather well and tries to go outside as much as she can.
11.02.2014 Maxim Indyik
is still monitored as a day patient. He is
feeling rather well. His liver function tests are slightly elevated
and he is given liver support drugs. He is scheduled for another
puncture within the next few days.
Maxim is home-schooled. He goes for walks, watches TV and plays
on-line games with his classmates.
11.02.2014 Maria Kutsenkova's
intestinal GVHD has gotten worse, and she
has strong stomach pains. In addition, she recently fell and bruised
her face. Yesterday she was admitted to the hospital.
Maria is in remission from leukemia. The transplanted bone marrow has
engrafted and is functioning well.
10.02.2014 On January 24,
Anya Burilova had an injection of mesenchymal
cells to treat her for GVHD. It is now obvious that her skin condition
has improved, and repeated mesenchymal cell infusion is under discussion.
Since late January, Anya has been recovering in a sanatorium in
Solnechny: she goes for physical therapy, gets massage, mud wraps and
10.02.2014 Mikhail Fufaev
continues his treatment for GVHD of liver in
Leningrad Regional Clinical Hospital. On hormonal therapy his blood
sugar level rose significantly, and he is receiving insulin. In
addition, large doses of steroids cause Mikhail's legs hurt often and
he gets cramps. To treat his primary disease, Mikhail had a cycle of
chemotherapy with Vidaza and he tolerated it rather well.
07.02.2014 Galina Gavrilova
is again requesting help with buying food and medications.
Konstantin Korytov's condition worsened. On
February 1 he was transferred to the intensive care unit and connected
to a ventilator.
04.02.2014 Unfortunately, the control puncture revealed that
Misha Stepanov has progression. Tomorrow he will
be hospitalized at R. Gorbacheva Institute. High-dose chemotherapy
followed by bone marrow transplantation is planned. This time Misha's
father will likely be the donor.
04.02.2014 Anya Lomonosova
is in remission. After hormonal therapy withdrawal, she again had a
flare-up of skin GVHD, but it is under control now.
Anya feels rather well. There were severe frosts at
Saratov, so Anya spent her time mostly at home: did her homework (she
is trying now to finish studies for 7-8th grades), and wove beads.
04.02.2014 In January
Dmitry Manturov began the therapy with Bendamustine.
The donor lymphocytes infusion has been postponed because of endobronchitis.
The doctors plan to perform a lung biopsy to arrive at a precise diagnosis.
Dima has a cough and is feeling a little short of breath, but
otherwise he is feeling ok.
03.02.2014 Volodya Maslennikov
has a very good response to Adcetris: only
one small lesion with contrast uptake remains. A surgical removal of
this lesion is currently planned at the Medical Academy. The doctors
hope that complete remission can be achieved without bone marrow
transplantation from unrelated donor.
03.02.2014 After the chemotherapy course in December
Shedi Buneb's blood counts never got normal.
The doctors are suspecting myelodysplastic syndrome but the results of
the tests are not ready yet. The boy is at the day patient facility
since January 22. He is feeling better. Shedi is still weak but he
can walk on his own and he has appetite too.
03.02.2014 Alexander Khomushku
came to St. Petersburg for a follow-up examination where his remission was
confirmed. The donor bone marrow is functioning well. Alexander has a mild
form of a skin and intestinal GVH reaction. CT showed that the lungs are
clear. The results of the cytomegalovirus test though were positive,
so the young man was prescribed therapy. He is feeling ok.
03.02.2014 Vova Gusev
is now having his medical examination in St. Petersburg. His myelogram
is not bad. There are no blasts, but just like before, the erythrocytic
lineage is not functioning well enough. The results of the trepanobiopsy
are not ready yet. Vova is getting blood transfusions. He is feeling ok
and doing his school classes from home.
Nastia Sluchaeva's transplanted bone marrow has
not started functioning yet. Immune-suppressing treatment has been
discontinued. Nastia was yesterday with a very low hemoglobin level. Hormonal
therapy is planned. Apart from the weakness, the girl is feeling reasonably well.
01.02.2014 Tests in St. Petersburg showed that
Svetlana Osufieva's lungs
and skin condition is improving, but all proscribed medications should
be continued. Control puncture results are not ready yet. Her next
checkup is scheduled in St. Petersburg at the end of March - until
then Sveta will continue to see hematologists in Petrozavodsk.
01.02.2014 Based on chest CT scan,
Maria Kutsenkova was found to have no
pathology. However, due to resumption of steroids, she was prescribed
antifungals again.Control puncture is scheduled for February 3rd.
Movlid Tutuev's body rejected donor's bone
marrow transplant. However, leukemia remains in remission. The doctors
are contemplating the boy's further treatment. So far, Movlid is
staying in the hospital; he is feeling better and more upbeat after
transfusion of blood components and growth stimulation of white blood cells.
30.01.2014 Tatiana Strelnikova
had control tests after seven rounds of
Dacogen treatment, and she was shown to be in complete remission.
Tatiana has been taken off all medication. She is feeling well and
will now undergo weekly testing and a lumbar puncture every three
months in her home town. She will return to St. Petersburg for
another series of tests in six months.
30.01.2014 Anya Smirnova's
leukemia remains in remission, her blood
counts are normal but her lung issues occasionally flare up. At the
moment Anya is suffering from capillary bronchitis; she receives low
doses of hormones. Overall the young woman feels OK; she tries to go
out and socialize often: she goes to theater, sees her friends, and
takes driving lessons.
29.01.2014 Unfortunately, the search for a
compatible donor revealed that
Alexei Krasnolutsky has no compatible matches.
The search at the international registry has been canceled.
The young man was advised to have regular screenings for minimal
residual disease. If the numbers start climbing up, Alexei will
have to come to Saint Petersburg to decide on further treatment.
29.01.2014 Georgy Tarakanov
remains in remission, with all blood counts
being normal. Last week he had the fourth round of treatment with
Vidaza and tolerated it well. Four more treatment courses are planned.
Georgy is feeling well; he continues to work.
29.01.2014 Alexei Nadyaikin
is seen locally in Saransk and is feeling
well, although there is some weakness, fatigue and swelling. In
February, the control biopsy is planned in Saransk. All necessary
medications are provided for Alexei locally. Control tests in
Petersburg have been moved to March.
27.01.2014 Lenura Lukkonen
is being seen at Leningrad Regional Clinical
Hospital. She feels rather well, and her blood counts are stable.
Intestinal and skin GVHD is under control. Lenura is now at home
sick: she has weakness, drowsiness and slightly elevated temperature,
but overall she feels rather well. Lenura is planning to resume her
work on Friday.
27.01.2014 At home Ulyana Veselovskaya's
skin GVHD aggravated again. In mid-December, when she came to St. Petersburg
for examination, she was prescribed new steroid therapy and Vfend to prevent
fungal infections. In addition, Ulyana is suffering from severe cough,
and pulmonary GVHD is suspected. She is in remission for leukemia,
donor's bone marrow if functioning well.
27.01.2014 Bone marrow transplant for
Katya Yastrebova was deferred
again: it is now planned for February. Right before the New Year,
Katya had elevated temperature, and she received antibiotics and
antiviral medications. Now the little girl feels well. Katyusha mainly
stays at home: she plays and reads with her mom.
27.01.2014 After the New Year holidays
Arseny Kochukov was admitred to
Gorbacheva Institute with high fever and abdominal pains. In addition,
his hemoglobin count dropped and he received blood transfusions. The
last two days the boy fells better, his fever subsided, C-reactive
protein level decreased, hemoglobin count is normal.
27.01.2014 Anechka Ushakova
is still at home, she feels rather well, and
her blood counts are normal. Target enzyme test result is normal.
There were no more manifestations of GVHD. Antifungal drug was
cancelled. Anya is gradually adjusting to her newborn sister and is
starting to accept her but is still a bit jealous.
Grisha Bakhvalov's bone marrow transplant
from his father was not successful: blast count is increasing and
Grisha's condition is getting worse. Two days ago the boy was
transferred to Children's Hospital No. 1 emergency room. Grisha is
connected to a lung ventilator and receives symptomatic therapy.
25.01.2014 Dima Orekhov's
skin GVHD was taken under control, but recently he developed GI
issues and lost his appetite. The tests showed low levels of electrolytes
and elevated creatinine. The doctors suspect it is due to adrenal gland
malfunction. Currently, Dima is in the hospital and he is getting
potassium and sodium. Further treatment is under discussion.
25.01.2014 Up to this time
Timur Rudyko was monitored on outpatient basis
and was feeling well, but due to hormone therapy cancellation, he
experienced acute manifestation of intestinal GVHD. On January
23rd he was admitted to the hospital and restarted on steroids.
He now has 8% of blasts. The second bone marrow transplant is in
discussions, but this time from his mother.
25.01.2014 In December
Alexander Zverev traveled to Gorbacheva Institute
for donor lymphocyte infusion. Currently Alexander is at home, in
Tver, he is feeling rather well. Recently he experienced mild skin
GVHD. Alexander is planning to go for follow-up tests at Mycology
Institute. Control PET scan for primary diagnosis is scheduled for March.
25.01.2014 Gera Efimov
was very happy to celebrate New Year at home in Tyumen. On January 8th,
the boy and his mother returned to St. Petersburg. After two-week break
from taking Nplate, the level of platelets went down, but hemoglobin and
leukocytes are stable. The boy restarted Nplate therapy. Gera is feeling
rather well, and loves to spend time outdoors. He is very happy to play
in the snow and loves to slide down the hill.
25.01.2014 Oleg Silkin's
bone marrow transplant is scheduled for February 28, 2014. Oleg plans
to arrive with his father to St Petersburg around February 8-10th
for evaluation prior to the transplant and conditioning.
25.01.2014 Albina Ibragimova
is at home in Kumertau. She feels rather well and is in remission.
She passed her mid-terms for the 4th year of college just before the New
Year, and is now taking a break.
25.01.2014 Maria Kutsenkova's
GVHD of skin, eyes and mouth worsened. On January 22nd, she arrived
in St. Petersburg for evaluation and treatment. She already had
baseline tests and was seen by pulmonologist and ophthalmologist.
Breathing tests are also planned. She was prescribed immunosuppressive
drugs, eye drops and gel for GVHD.
Elena Vozhova had been diagnosed with a CNS
leukemia relapse and she was treated with Cytosar. After treatment
she had fever for about a week, which the doctors believe was due to
the reaction to Cytosar. Elena will soon receive donor lymphocyte
infusions to induce graft-versus-leukemia effect.
23.01.2014 Sergei Sannikov
is in remission but he has been fighting GVHD
of mucosa, skin and lungs. He also once again shows signs of
aspergillosis associated with lower blood counts.
The Chelyabinsk Committee for Public Health refused to cover the cost
of medications. Sergei is filing a lawsuit and hopes he will be able
to obtain the medicines this way.
23.01.2014 Dima Yablochkov
is monitored by an endocrinologist and a
pulmonologist and regularly goes for testing. His blood counts are normal.
His lungs are stable. In general Dima is feeling rather well. He has
no back pains, but he is still not allowed to do any heavy lifting and
has to wear a back brace.
Levon Karagezyan's November check-up showed
disease progression. His treatment was changed and tumor growth was stopped.
Levon is currently at home. He is feeling OK. He has recently passed
his finals and is now working on his diploma.
21.01.2014 Galina Gavrilova
is asking for help with paying for a visit to a dentist to avoid having
inflammation, as well as massage to help with paralysis of her extremities.
17.01.2014 Olga Shmygleva
had PET/CT test at the end of December that showed a very good response
to treatment: there are almost no active lesions left. Bone marrow
transplantation is scheduled for February 26th. In early February
Olga will come to St. Petersburg for an examination and hospitalization.
17.01.2014 Denis Tsupriyan
is being observed at the day patient facility. He feels well over all,
and the blood count is within normal ranges. He is still on hormones
and immunosuppressors, as an attempt to cancel them causes intestinal
GVHD. Nevertheless, Denis didn't give up his studies, and he is
currently taking his mid-terms.
17.01.2014 Danya Vlasov's
parents have agreed to bone marrow transplantation from an unrelated donor.
The transplantation is preliminarily scheduled for March.
Danya is in a stable remission. He receives medications according to
the maintenance regimen, and he feels well.
16.01.2014 Serezha Maltsev
is currently at home, in Kirov region. He is followed by local doctors
and goes for blood tests. His blood count is normal. The examination
in St. Petersburg in September confirmed remission; donor's
bone marrow is functioning well. Serezha feels rather well,
he takes anticonvulsants and continues his education online.
16.01.2014 Yulia Ermolenko
is currently at home, in Krasnodar region. On January 19thshe is coming to
St. Petersburg for an examination and to resume photopheresis therapy.
Yulia feels well: her shortness of breath stopped, and she coughs rarely.
She spends most of her time indoors so far: plays the keyboard, sings,
stitches embroidery, weaves beads.
14.01.2014 As planned,
Lyudmila Krasikova received a bone marrow
transplant on January 9. She is recovering now and feels well,
much better than after her first transplantation.
Lyudmila Georgievna exercises and tries to walk up and down
the hall as much as she can to stretch her muscles.
Anya Burilova's skin manifestations of GVHD
have worsened. She is scheduled for another visit to a heath resort
in Solnechny next week. In Anya's case, rehabilitation there gives
very good results. She continues to take hormones and
14.01.2014 Alesha Laptev
is feeling quite well and goes to the hospital once a week for laboratory
tests. Finally, his blood counts reached the normal levels. He spent
New Year's at home with his mother and grandmother. Alesha still
spends most of the time reading and playing Lego, sometimes
going out for a walk.
14.01.2014 December CT scan showed that
Mikhail Fufaev is in partial remission.
He was about to start planned chemotherapy cycle, but liver GVHD
diagnosis caused delay. Today Mikhail was hospitalized to
the Leningrad Regional Clinical Hospital. He was scheduled for
a course of hormones and immunosuppressants. Misha's pulmonary
condition has some improvements, and he needs to continue taking Vfend.
14.01.2014 Adelya Faritova
is monitored in an outpatient clinic, feeling quite well.
Mild skin rashes are controlled with Advantan cream.
During winter break, she went to a children's New Year's
show, read a lot (Santa Claus brought her a large selection
of detective stories for kids), and did a lot of bead weaving,
which is her favorite art activity.
14.01.2014 It turned out that a drop in
Andrei Sharoglazov's blood counts was
caused by cytomegalovirus. A cycle of Cymevene helped to control
it, and blood counts returned to normal. Control biopsy has
confirmed that he is remission. The donor's bone marrow
has engrafted and is functioning well. Andrei is doing quite well,
but misses his friends and cannot wait for the
doctors to allow him to come back home.
14.01.2014 Unfortunately, in October
Nino Utiashvili was diagnosed with recurrent sarcoma.
Now she is undergoing chemotherapy in Petrov Oncology Research Institute
and has recently started the third cycle. After it will be over,
she is scheduled for autologous bone marrow transplantation
at Gorbacheva Institute.
13.01.2014 Arseny Provorov's
PET scan from December did not show any active lesions, but single
cells retain metabolic activity. The strategy of further treatment
has not been determined yet. On December 17, Arseny had a surgery
to remove the affected lower lobe of his left lung.
He has quickly recovered after it, and feels rather well.
Shortly before the New Year's, Arseny was discharged for
13.01.2014 Fortunately, December biopsy showed that
Maxim Indik is in complete remission and there
are no signs of minimal residual disease. Recently, he presented with
first signs of skin GVHD. The boy is monitored in an outpatient clinic
and is feeling quite well. He enjoys going for a walk, but does not
want to go to school at all: he says he's had enough of it.
13.01.2014 Katya Polyubina
is now at home in Cherepanovo; the doctors discharged her for New Year's
and winter break. On January 18, she has to go back to St. Petersburg
for her fourth cycle of Vidaza and control tests.
Katya is doing quite well, only her blood pressure is slightly down.
Antifungal drug Vfend was canceled at the end of December.
13.01.2014 Misha Nikitin
spent New Year's at home in Tikhvin with his beloved grandparents and
has recently returned to St. Petersburg. He still has back pains, but
overall, he is feeling quite well and has been in a great mood after
spending time with his family. Hormones were discontinued, but
Misha cannot stop taking immunosuppressants yet, because dose
reduction causes aggravation of intestinal GVHD.
13.01.2014 Dmitry Soshko
is monitored at an outpatient clinic and feeling well. There has been
no significant changes in his pulmonary condition; the improvements
are minimal. He will continue to take antifungals for another three
months. To prevent relapse, Dmitry continues with Vidaza chemotherapy
and is scheduled for the third cycle in the near future.
13.01.2014 Veronika Nikulina
is seen as outpatient and is doing quite well. Last week Veronika
had a fever, and was prescribed antibiotics. In December, Veronika
presented with intestinal GVHD again, but it was controlled with
steroids and diet. Veronika spent the New Year's with her family,
went to several children's New Year's shows and got lots of gifts.
13.01.2014 At the end of December
Diana Ibragimova underwent examination and a
consultation at Central Institute of Traumatology and Orthopedics
(CITO). As a result, her medication dosage was increased.
The next consultation is scheduled in May, during which knee joint
replacement will be considered again. Diana takes her end-of-semester
The tests are challenging, because her memory has deteriorated a lot.
Dima Chukreev has not achieved remission,
the number of blasts went down significantly. Several days ago, he and
his mother went home to Omsk for a couple of weeks. Dima receives
maintenance treatment, and he feels rather well. Upon his return
to St.Petersburg it is planned to perform bone marrow transplantation,
with his mother being his donor.
09.01.2014 In December
Irina Prikhodko underwent examination in St.Petersburg.
She is remission. A cardiologist consultation and heart examination revealed
some cardiac malfunctions, but they are not critical. There are no
improvementsin joints' condition, but urgent surgery is not required.
09.01.2014 Unfortunately, CT scan after 4 cycles of chemotherapy
did not show any improvement in
Ivan Kolesnikov's condition. His lymphomatreatment
was changed: now Vanya recieves chemotherapy in pills under another
regimen. In addition, he was prescribed antibiotics to treat pneumonia.
09.01.2014 Alla Korotich
is still at homein Poltava,recovering from recent viral infection.
She is still coughing, but starting tofeel better. Alla continues daily
breathing excercises. She plans to ungergo lung CT scan soon.
01.01.2014 Egor Moskalenko
is feeling well! His family was able to finally paid off the last of
their debt for treatment to the clinic in Korea. Based on examination
results, he is healing well, although the swelling remained for a
long time - almost 2 months. The next trip to Korea is scheduled
for the end of February. Egor's family received a bill for $9500
for this treatment stage. We will be very grateful for any help.
The doctors plan to work on the other
half of the scar tissue.
Egor is getting ready for school at rehabilitation center
for children with disabilities.