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Hello!
My name is Igor Simonov, I am 31 years old. My 31st birthday turned out to be fatal for me. I felt bad: my knees were swollen and in pain which made walking difficult, I had a sore throat and felt awfully weak. For a month I was being treated for tonsillitis, and the precious time was lost. The doctors at the policlinic failed to cope with the situation and sent me to the Botkin Hospital for Infectious Diseases No.30. Only there, having performed a blood test, did the doctors diagnose me with the disease that can turn to be the last stage of my rather short life: acute myeloblastic leukemia (M4).
With this diagnosis and in an extremely grave condition I was transferred to City Hospital 31 where I was administered first aid in intensive care since my blood counts were nearly incompatible with life at that time.
By now I have had two chemotherapy courses but the doctors say that without a bone marrow transplantation chemotherapy is just a temporary measure. We will have to search for a donor in the international registry. Unfortunately I have no funds for the donor search and transplant delivery to St. Petersburg (which is 17,500 euros). Bone marrow transplantation can lead to serious complications, and I will need more funds to cope with those because government support does not cover all necessary drugs.
Please help me raise the money for the surgery which will give me hope to recover, to see and love my dear ones, to realize all that has been planned.

Igor
Contact phone:
+7 (921) 910-78-01 (Olga Simonova, mother)


 

Update as of December 3, 2010. After the 3rd chemotherapy cycle, Igor's blood counts are not yet normal, and since Friday he has been receiving platelet transfusions. If the blood counts rise, he will be allowed to stay at home until the 4th cycle.

Update as of December 9, 2010. Lymphocytes still do not increase and Igor has high fever that is being reduced with antipyretics. The drugs help, but only for the short period. Doctors continuously take blood for testing, and no infection is present. In general, the cause of the high fever is still unknown.
Today Igor will have biopsy and more blood tests. Doctors suspect fungal infection in lungs. The fourth round of chemotherapy cannot be started until he recovers.
On December 2nd Igor's mom received a confirmation of the first transfer to the register (5000 euro), so the active donor search has already started. As of today, the money raised (including the first transfer) are: transfers to bank account (including cash that was deposited by Igor's mother): 285,000 rubles, web-money: 4100 rubles, yandex-money: 3481.25 rubles.
Yulia, Igor's sister

Update as of December 17, 2010. Gradually, body recovery processes are starting up. Igor's fever has been gone for a week now, and his leukocyte count is growing. Igor continues receiving four different antibiotics daily. He is not scheduled for any procedures for near future and the reason for his past fever remains a mystery.
There is a chance that Igor will be discharged for the hospital for the holidays, as the 4th cycle will not be started before the New Year.
Yulia, Igor's sister

Update as of January 17, 2011. A donor was found for Igor at the international registry. Tomorrow he will have a consultation with Prof. Afanasiev. Transplantation is preliminarily scheduled for March.

Update as of January 24, 2011. Igor does not feel very well. His leukocyte and platelet counts are still low. Since Friday, Igor is having high fever. It is being brought down several times a day, but it is not clear what is causing it. The likely culprits are fungal infection or catheter infection.

Update as of January 28, 2011. For two weeks, Igor had a viral attack on his body, which was accompanied by high fever (to 39.5 C) and fatigue. During that time Igor was under intensive therapy.
As of today, his doctors stabilized his temperature at 37C. His blood counts started to grow: leukocytes are 0.9, platelets are 50 and hemoglobin is 80.
Yulia, Igor's sister

Update as of February 8, 2011. A week after the viral attack, Igor developed issues with his spleen. Today he will undergo repeat MRI, results of which will help make a decision regarding further treatment.
Today Igor will also go to R. Gorbacheva Pediatric Hematology & Transplantology Institute to meet the personnel of the clinic where he will undergo bone marrow transplantation. He is recovering, his blood counts are growing gradually and he is feeling better overall.
Yulia, Igor's sister

Update as of February 18, 2011. Igor is receiving blood transfusions. Based on results of tests on removed spleen, he was diagnosed with a fungal infection, which will be treated with strong antibiotics for 7-10 days. Igor feels well and he is starting to walk gradually.
Yulia, Igor's sister

Update as of February 24, 2011. Today some of the stitches were taken off and the rest of them along with the tube will be removed tomorrow. The ultrasound did not show anything wrong post-surgery. Overall, Igor feels well and his blood counts are good.
Yulia, Igor's sister

Update as of April 5, 2011. Transplantation went as planned. Igor feels rather well.

Update as of May 7, 2011. Igor is at home, he is very weak for now. But the most important thing is that his test results are good.
Yulia, Igor's sister

Update as of June 21, 2011. Igor is being monitored at the clinic #31. He is in remission in regards to primary diagnosis. His blood counts are normal, but he has slight GVHD symptoms. Igor still needs Vfend.

Update as of August 10, 2011. Igor feels well and GVHD symptoms are under control. He is continuing Vfend therapy.

Update as of September 22, 2011. Igor's test results are normal, but he has issues with his legs due to varicose veins. He had a consultation with neurologist and was prescribed medications. Overall he feels well. He is continuing Vfend therapy.
Yulia, Igor's sister

Update as of November 14, 2011. Igor had issues with his stomach. They were taken under control with the long-term hormonal therapy. Igor is now trying to gain weight, but it is very dfficult.
Yulia, Igor's sister

Update as of February 23, 2012. Igor is at the day patient facility. He is feeling fine and is administered Entocort as prophylaxis of intestinal GVH reaction, and also Valcyte since his cytomegalovirus titer has gotten higher. Sometimes Igor has a fever, which is why he is on antibiotics. Vfend is still needed.

Update as of April 20, 2012. Igor is being monitored as a day patient. A series of tests is being planned. Igor developed toxic hepatitis and hepatomegaly (liver enlargement) and was prescribed Phosphogliv and Hepa-Merz. He still needs Entocort to prevent recurrence of GVHD, as well as Vfend.

Update as of October 19, 2012. After 3 months of hormonal therapy designed to inhibit development of liver toxicity, Igor had further increase of liver enzymes.
After a consultation at R. Gorbacheva Pediatric Hematology and Transplantation Institute, he was diagnosed with hepatic GVHD. New therapy was prescribed, which Igor is receiving at Clinical hospital No. 31 in St. Petersburg.
In the near future Igor will be in the hospital for continuing monitoring of his condition, as therapy with new medications may cause unpredictable effect.
He is now in a satisfactory condition and has no serious reaction to drugs. Igor suffers from serious back pains as he has little protein left in his body and he had lost significant amount of muscle, and with his height of 196 cm, his spine is under much stress. Igor had a consultation with neurologist and was recommended physical therapy.
Overall, the doctors are in full control of Igor's condition as of now.
Yulia, Igor's sister

Update as of November 27, 2012. Igor is now at the hospital due to severe pneumonia and high fever. He has difficulty breathing and has to use oxygen mask. Igor is receiving therapy with Biseptol and other antibiotics. GVHD was taken under control and liver enzymes normalized. Doses of hormones are being gradually reduced.

Update as of December 10, 2012. Igor is a little better. After large doses of antibiotics, inflammation is gone, but therapy is continuing. Igor is beginning to get up and tries to eat, as he could not eat for the last two weeks. We are grateful to everyone for their support!
Yulia, Igor's sister

Update as of January 2, 2013. On December 29th Igor was diascharged with fever. At home, his temperature normalized on the second day, so the cause of it was likely a catheter. He feels so-so, and can barely walk, but it is good to be home.
Yulia, Igor's sister

Update as of February 28, 2013. Igor is at the day care facility. He walks on his own but that's very hard for him: due to a big calcium loss he had a spinal compression fracture. Igor is administered calcium drugs. Once the calcium balance is restored rehabilitation will be possible. The situation with the liver and lungs is now better. Igor is taking Vfend and immunosuppressive drugs. He was also prescribed Exjade in order to lower the blood ferritin (iron) level.

Update as of April 1, 2013. Yesterday, March 31, it was 2 years since bone marrow transplant. The last three months Igor is staying home, but under close monitoring by specialists and goes for weekly blood tests. His general condition is average.
We are thankful to everyone who is staying with us and supporting Igor.
Yulia, Igor's sister

Update as of June 25, 2013. Igor is undergoing examination due to strong back and hip pain. Inflammatory process is suspected as in the evenings his body temperature is always up to 38. Today's MRI revealed early stage of necrosis of hip joint. Possibility of hospitalization is considered. Currently there are no manifestations of GVHD, and doctors are reducing Cyclosporine dosage.
Olga, Igor's mother

Update as of September 30, 2013. The examination showed that Igor's hip bone and joints are deteriorating. He will be monitored by a surgeon and will be scheduled for monthly check-ups to follow the progress of the disease. The doctors currently discuss a possibility of hip replacement.
Igor has also had full eye examination and started treatment for his retinal detachment. He is still in remission. He does monthly tests at the City Hospital #31 and his blood counts are normal.

Update as of April 29, 2014. From 1st to 11th of April Igor was examined in the 31st City Hospital. His primary disease is in remission. However, Igor's bones and joints are undergoing destruction. Deformation and flattening of the femoral heads with massive bone sclerosis, twisting of bone heads and stage 4 aseptic bone necrosis were discovered.
Endoprosthetic replacement of hip joints was recommended. Currently, the location to perform the replacement of the left hip joint is being discussed. So far it is planned to treat Igor with the medications that help prevent destruction of bone tissue (Zometa, Rezorba, or Zolerix) once every three weeks.
In addition, Igor was recommended by an ophthalmologist to undergo a cataract extraction and an intraocular lens implantation on his right eye.
Yulia, Igor's sister

Update as of June 10, 2014. Igor has consulted the experts at the Department of Orthopedic Surgery of the Military Medical Academy about hip replacement surgery. The experts recommended postponing the surgery until later because they believe that his body may not cope with the stress. They suggested continuing monitoring and revisiting the surgery option if all attending physicians (the oncologist, the surgeon etc.) give their approval.
Igor's mom 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.

Update as of November 19, 2014. In September and October Igor 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. The surgeries were successful. Previously, due to chemotherapy and steroid therapy Igor's vision went down to 0.04 and he was practically blind. At discharge, his vision improved on both eyes to 0.7. Igor is now seeing a district ophthalmologist.
Yulia, Igor's sister

Update as of November 12, 2016. Igor needs an emergency hip replacement surgery. The total cost of the replacement hip and the procedure is 251,350 roubles (around $4,000). We need your help!

Update as of January 14, 2017. The 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 bed rest.
The doctors will next consider the options for the hip replacement surgery.

Update as of March 14, 2017. At the end of February Igor was hospitalized for 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 (infiltrate? reactive bone growth?) Consultations with specialists from other hospitals are ongoing.
Igor cannot walk due to pains in his thigh and has to use a wheelchair.

Update as of May 4, 2017. Igor is still at the hospital No. 31. Unfortunately, his lower body was paralyzed, so he has to stay in bed all the time. Examination is ongoing. At the same time Igor is receiving combination therapy to improve his blood circulation. Osteomyelitis (inflammation of bone tissue) is being investigated; Igor has been receiving Vancomycin treatment for a month. Currently, Igor's C-reactive protein and white blood cell count decreased to the normal limit, however eosinophil count is still increasing.
The doctors now believe that hip joint replacement is necessary. Preliminarily, the surgery is scheduled for August or early September. Prior to that Igor has to undergo rehabilitation in order to recover his muscle support.

Update as of June 1, 2017. After spending three months at the Hospital 31, Igor 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 his osteomyelitis, Igor sustained a compression fracture of five more vertebrae. He was referred for a consult at the Mariinsky hospital.
Because of his back, Igor cannot stand up or even sit up - he has to remain on bed rest.

Update as of July 11, 2017. Yesterday Igor was hospitalized at Mechnikov Medical University. The doctors offered him the following treatment: first, surgery to decompress fractured vertebrae, planned for later this week or early next week. Then - recovery period, and in six months - corset installation to strengthen his spine. After this stage is completed, hip joint replacement can be discussed. Igor feels OK overall, and he is very much encouraged by development of a clear treatment plan.

 

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