Aleksey Skuratov from Krasnoyarsk was 36 years old. He graduated from Krasnoyarsk University and went on to the graduate school when in 2000 he was diagnosed with colon cancer. Since then he underwent 12 surgeries, multiple cycles of chemotherapy and radiation. But while fighting for his life literally every day, Aleksey continued to live a full life: he was working, traveling, and playing different types of sports.
In July 2008, after yet another surgery, doctors in Russia told Aleksey that they cannot help him anymore. But he didn’t give up. Thanks to friends’ support, he found the clinic in Germany which offered him treatment under a new protocol. He spent 10 months in a clinic in Munich, where he had three more surgeries, 12 cycles of chemo and… coma! Doctors were very pessimistic about Aleksey’s chances, but a month later, he regained consciousness and two weeks later he flew back to Russia, to his hometown to try to find money so he could continue his treatment in Germany.
He achieved his goal and upon his return, he underwent one more surgery to remove the tumor completely, but, unfortunately, it was not possible. In spring of 2011, he was told that Cetuximab was no longer working for him. Afterwards, Aleksey developed internal bleeding. On August 11, 2011 Aleksey passed away.
During his fight with cancer, Aleksey became an inspiration for many. He was not only saving himself, enduring harsh treatments and multiple surgeries while maintaining his sense of humor and happy-go-lucky attitude. He also volunteered for charities, helped patients find affordable clinics and medical opinions, and wrote a guide for people in the same situation.
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Elena Sadikova from Moscow was 22 years old. She was a student at Moscow State University, majoring in journalism. Elena discovered she had the anemia after donating blood while on student exchange program in California. In June 2008, Elena went to a doctor due to fatigue and fever, and was sent to the Botkin Hospital in Moscow where additional test revealed that unfortunately she had acute myeloblastic leukemia (AML). Elena was started on induction chemotherapy for month, and almost entire time she was in intensive care unit due to pneumonia and toxic infection. At the completion of therapy, Elena achieved remission. For the next year, she underwent 6 cycles of maintenance therapy and in July 2009 the treatment was over. In September 2009, the bone marrow analysis confirmed remission. Elena returned to her studies and had only visited doctors for scheduled examinations. Unfortunately, in March 2010 Elena relapsed. Further treatment requires bone marrow transplantation. Elena has a rare type of a chromosome, so the number of available donors for her is very limited, as is the number of clinics. Luckily, the clinic was found: Seattle Cancer Care Alliance in the U.S. has agreed to initiate the search among 17 possibly matching donors. However, the donor search followed by transplantation come at a cost: the clinic requires prepayment of $423,000.
February 5, 2011: We are excited to announce that $423,000 needed for Lena’s bone marrow transplant in the United States have been raised! The search continues for the donor in Seattle.
June 16, 2011: Unfortunately, Lena relapsed again before she was able to travel to Seattle for transplant. She traveled to Israel for anti-relapse therapy, but it was not effective. Lena passed away today.
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Maxim Novikov lived in Kiev, Ukraine. His mother has worked as a doctor, epidemiologist, for 45 years, and his father died when Maxim was just 11. Before he got ill, Maxim worked as a driver. He was promptly laid off once he was diagnosed with Hodgkin’s lymphoma in early 2009. Maxim has had health issues for a long time before and was even treated for arthritis for six months - without success. His wife eventually insisted on him seeing an oncologist and that’s when Maxim was finally diagnosed. After enduring several lines of chemotherapy, Maxim was able to undergo autologous bone marrow transplantation, which is curative in most cases. Unfortunately, he relapsed six months later. In fall 2010 Maxim was enrolled in a clinical trial with radioimmunotherapy in Italy. Although he had some response to treatment, in four months a progression resumed.
Update as of May 18, 2011: Maxim started therapy with bendamustine in Kiev and had a response to therapy. He no longer has fever and back pains. On May 24th Maxim will start a second cycle with addition of lenalidomide.
Update as of June 24, 2011: Sadly, Maxim passed away today.
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Vanya Chernozub was diagnosed with a brain tumor, medulloblastoma, before he even turned 2. This type of tumor is highly malignant and aggressive, and the doctors in his native Ukraine were unable to help. Fortunately, Vanya was admitted for treatment to Helios clinic in Berlin, where he has been treated since April 2009. He has undergone chemotherapy and radiation and his condition improved.
December 23, 2009: Argumenty i Fakty newspaper has published article about Vanya.
December 25, 2009: According to the MRI results, Vanya has a full remission! Both the metastasis and the tumor are no longer seen on the scans and are not accumulating contrast either. Now Vanya is getting maintenance therapy which is to last approximately 6 months. Vanya has also had a course of antibiotics treatment because there was an accumulation of E.coli bacteria in his tracheostoma and Vanya’s temperature was rising every now and then. The speech therapist is visiting Vanya three times a week training him to swallow so that the tracheostoma could be removed as soon as possible. Vanya is feeling well.
January 24, 2010: Vanya feels well. He now is taking an ergotherapy in addition to speech therapy, so that he can learn to crawl properly and then walk. Vanya really enjoyed the first visit to the therapist. He was so active that by the end of procedure, the therapist was even more tired than Vanya. On January 25th, Vanya will start the second cycle of maintenance therapy.
January 30, 2010: “Vanya received the first part of the second cycle of maintenance therapy. He will have an injection of Vincristine on February 2. Vanya feels well, his test results are good and his hair is growing back. The only problem is that tracheostomy has tested positive for an infection again and he continues inhalations with antibiotic. Vanya’s temperature is somewhat unstable. We were disconcerted by the news that Vanya can apparently hear much worse on his right ear than on the left. The doctors believe it could be a consequence of prior surgery to remove the tumor, which could have damaged the auditory nerve. Vanya is continuing classes with the speech pathologist and ergotherapist. It is hard to believe now that in March 2009 at Neurosurgery Institute in Kiev, Vanya was so weak that his hands were shaking, and in April 2009, the doctors in intensive care unit in Kherson were giving him no chances to live. Today he is a curious lively little boy who ties hard to catch up with kids his age and who makes his mother and doctors happy with new achievements every day. The ear, nose and throat specialist is planning to remove tracheostomy after the 4th cycle of chemotherapy, while ergotherapist is certain that Vanya will learn to walk. Vanya’s mom is asking everyone to pray for Vanya’s full recovery and is very grateful to everyone who is helping them. The treatment requires 6,000 euros more to be completed.”
Anya, volunteer
March 8, 2010: MRI scan results confirmed that Vanya was in remission. However, he was diagnosed with hearing loss and herpes infection in his eye.
March 8, 2010: “I will begin with the good news: MRI results as of March 4 confirmed remission! Now to the bad news… Today Vanya was examined by an otolaryngologist and ophthalmologist. The otolaryngologist told us that Vanya’s hearing on the left ear was 100%, but he couldn’t hear anything with his right ear… Once the main treatment is completed, the doctors will examine Vanya’s right ear and determine whether an implant would help to restore hearing in it. Vanya had to see ophthalmologist urgently, as he woke up with an inflamed eye in the morning. The doctor said he had herpes infection in his eye and prescribed eye drops. Vanya already had herpes in his other eye and he was left with a scar that interfered with his vision and which could have to be corrected surgically. Just in case, the Ophthalmology Unit head will examine Vanya on Friday as well. However, any serious therapy will be offered only after the main treatment is completed. Vanyusha is now at the clinic and he is administered the third cycle of chemotherapy. His mom had calmed down after having a few stressful days and she feels optimistic again. Vanya has been through so much already that the issue with his ears and eyes will certainly be taken care of.”
Anya, volunteer
June 20, 2010: “Vanya completed two more chemotherapy cycles - fourth and fifth. There were complications, unfortunately. Because of unexpected temperature rise, Vanya spent additional week at the hospital. But in general, Vanya is tolerating chemotherapy well. Based on MRI results as of May 12th, Vanya is still in remission! And one more great piece of news: long and hard work with speech pathologist brought results, and Vanya’s tracheostomy was taken off.
He now eats and drinks like all the healthy kids. In the past are now the feedings through a tube and Vanya’s complaints that he could not munch on bread or eat a candy. In the past is now the constant worry that infection can get inside Vanya’s body through the tube. Vanya lived with tracheostomy for 16 months and its removal was a great joy for his mom!
Physical therapy was also successful: Vanya can now walk by himself. Even though it is difficult and the steps are small and slow, Vanya is catching up with the kids his age little by little. And very soon he will turn 3 years old.
Vanya has one last chemotherapy cycle left. The issue with paying for his treatment is still pressing. In May his mom received a bill for the rest of chemotherapy for 25,000 euros. This amount does not include the final examination, surgery to remove tracheostomy and Omaya device from his brain, and rehabilitation.
Please help Vanya take one final step on his road to recovery!”
Anya, volunteer
July 17, 2010: “Vanyusha is not doing very well: early in the week he got severe pneumonia. Vanya’s urine also tested positive for infection. He is now in the hospital where he receives strong antibiotics. On July 13th he was planned to start the 6th chemotherapy cycle, but it had to be postponed for now. Please, pray for his recovery.
Financially, it is simply a catastrophe! Clinic’s account office told us that Vanya owed 5,000 euros as of beginning of July. It is scary how high his debt is now. When in April Vanya had pleural complications, just one week at the hospital “ate up” over 8,000 euros. Now his pneumonia is even more aggressive and it means that the bill will increase even more. Please help our little guy! He works so hard to overcome all challenges and get well.”
Marina, volunteer
Vanya’s new photos
August 20, 2010: Vanya completed his last cycle of the chemotherapy. The oncological part of treatment is now over and we need to pay his debt off: due to complications, it has grown to about 30,000 euros. In addition, Vanya needs an ophthalmology examination, removal of Omaya device and the final examination.
Oct 27, 2010: In September, Vanya’s catheter was removed. He now goes for physical therapy and speech therapy. After control tests in December, Vanya plans to go home to Ukraine.
May 17, 2011: In January 2011, Vanya was diagnosed with a relapse. He underwent two cycles of chemotherapy, which did not stop the tumor growth. In May he was planned to start radiation, but his condition began deteriorating rapidly. Vanya passed away today.
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Kirill Krychta was a 4 year-old boy from Ukraine. He was a very empathetic child, very loving and compassionate. He was only slightly over 2, when he was diagnosed with ALL, acute lymphoblastic leukemia. His cancer diagnosis was a shock for his family, and a painfully terrifying interruption for a boy who never took a break. Since his diagnosis, Kirill has endured more than most people will in a lifetime! Chemotherapy, bone marrow transplantation, hundreds of blood tests, countless X-Rays, MRIs, CT scans - all of that Kirill had endured stoically! Unfortunately, he relapsed in January 2011. Kirill urgently needed aggressive chemotherapy treatment at Hadassah University hospital in Israel. Although second transplantation was considered, Kirill’s condition deteriorated rapidly and he passed away on May 14, 2011.
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Sergei Didukh was 19 years old. In 2001 he received a terrifying diagnosis: Ewing’s sarcoma of the lower third in his right thigh bone. He was treated in the oncology unit of the Russian’s Clinical Hospital in Moscow. In 2002, the treatment was completed but for 8 more years Sergei was regaining function in his leg. He underwent 15 surgeries: heart surgery, plastic surgery, and installation of endoprosthesis (bone replacement) among them. It seemed that terrible disease had been forgotten. Sergei left behind suffering from chemotherapy, multiple operations, anesthesia, and therapy with Elizarov’s device. But bad fortune had a “gift” for Sergei on his 18th birthday: a metastasis in his left shoulder bone. All Sergei’s dreams collapsed: he had to postpone college plans and forget about his favorite hobby, playing a guitar. He started treatment again; this time, at Petrov’s Oncology Research Center in St. Petersburg.
Since July 2009 the doctors have been fighting for Sergei’s life, but the tumor has not retreated yet. On May 27, 2010, Sergei’s arm was amputated. And just one month later, due to the endoprosthesis installed in 2002 was rejected by his body, the doctors had to amputate Sergei’s leg too. Fortunately, Sergei already recovered after surgeries and feels well. But now, Sergei needs two prosthetic limbs and a wheelchair to be able to move and take the trip to Moscow for initial consultation with a German prosthetic company, Otto Bock. Prostheses cost from 18,000 euros to 30,000 euros each.
Sergei and his mother live in a small northern settlement and have no one to support them: Sergei’s father has been absent from his live for 14 years now. Sergei’s mother cannot keep a permanent job due to constant trips for treatment.
July 21, 2010: Thanks to the anonymous donor, the wheelchair was bought and Sergei and his mother traveled to Moscow where they are now waiting for their appointment for initial consultation with Otto Bock.
September 8, 2010: Sergei had a recurrence of Ewing’s sarcoma in his lungs. Unfortunately, due to advanced stage of the disease, no further treatment was offered to Sergei in Russia. He was moved to a hospice.
February 16, 2011: Sergei passed away.
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Eugenia Ivanova lived in Tolyatti. She was 36. Until she got sick, she had a very good life: she enjoyed her job as a dental assistant, and loved being a mother to her young son.
Unfortunately, in 2007 Eugenia was diagnosed with anaplastic large cell lymphoma. This is a rare disease, and in Eugenia’s case it turned out to be aggressive: she never achieved remission.
With our help, Eugenia was invited for a clinical trial with APO866 to a clinic in Zurich, Switzerland.
October 7, 2010: Eugenia arrived safely to Switzerland and underwent additional tests this week. She will start the trial on Monday, October 11th.
October 18, 2010: Eugenia completed the first cycle of therapy with APO866. She has fever and receives antibiotics. The plan is for Eugenia to complete three cycles of therapy and then be evaluated for response. If response is not good, she will be switched on a different therapy, most likely with Ontak. We are very grateful to all Eugenia’s supporters in Zurich who have been visiting her at the hospital and organizing fundraising for her in Switzerland. A local Russian family is housing Eugenia while she is away from the hospital. Thank you very much for your kindness!
October 25, 2010: Eugenia’s lesions continue growing after the 1st cycle of therapy.
October 28, 2010: Article about Eugenia was published in Argumenty i Fakty newspaper [Rus].
Nov 24, 2010: Eugenia returned home as she had no response to experimental therapy.
December 13. 2010: Sadly, Eugenia passed away. She will always be remembered.
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Anya Seryukova came to St. Petersburg from Siberia. She was only seven, yet already went through years of leukemia treatment. Anya’s little brother Fedor is a 100% matching donor for her, but the transplantation requires a set of equipment that costs almost $10,000.
August 23, 2009: Anya suffers from skin GVHD (graft-versus-host disease), and was prescribed hormonal therapy and Vfend (to prevent recurrence of aspergillosis during hormonal therapy). Anya needs 400 mg of Vfend daily. The infusion of NK-cells was postponed for some time.
October 3, 2009: Anya cannot be completely taken off hormones. She receives the therapy in small doses, because cancellation of it increases GVHD.
November 30, 2009: Company “Quickpay” joined fundraising campaign for Anya. As part of Kind Payments program, they already raised 182,000 rubles for Anya via payment terminals. The money was used to buy Vfend for Anya. Anya and her mom will come to St. Petersburg for planned testing next week. We are enormously grateful to all their supporters!
December 24, 2009: Anya has been discharged and is going home until the end of January when the photopheresis machine is to start working again. Anya and her mother are saying thank you to all of you for your support and wishing you all a happy new year! Anya is feeling fine.
March 14, 2010: Anya completed all tests. She is in complete remission in regards to her primary diagnosis. Anya and mom were again preparing to go home, but the night before their flight Anya had severe seizures. She is now at the clinic under the doctors’ watch.
March 23, 2010: Anya’s condition stabilized and she was transferred out of intensive care unit. The test results, unfortunately, show that she developed CNS involvement of leukemia that caused seizures. Anya is now undergoing a course of chemotherapy (injection of Cytosar in cerebrospinal fluid), and may also need an expensive medication, DepoCyt.
April 3, 2010: Anya completed anti-relapse therapy. The testing of spinal fluid did not show any blasts. Further treatment is under discussion.
May 19, 2010: Anya achieved remission. She is now stable and was allowed to go home for two months.
June 4, 2010: Anya is at home and feels well. She is supervised by a hematologist and still needs to take Vfend.
Oct. 22, 2010: Unfortunately, Anya was diagnosed with a diffuse CNS relapse during control tests.� This is the 4th relapse, and the treatment options were exhausted. Anya’s parents decided to bring her home.
Nov. 23, 2010: Anya passed away today.
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Kirill Belov was 27, he was married and had a daughter. The leukemia had struck Kirill unexpectedly: always a strong and healthy person, he suddenly lost consciousness at work. Kirill was taken to the Botkin Hospital in Moscow for further bone marrow transplant. Based on a preliminary search, Kirill had a good donor match. He was hopeful to receive his transplant soon.
February 1, 2010: Based on preliminary search results, Kirill had many potential donors. We appreciated DKMS registry for giving Kirill a discount on the donor search.
May 19, 2010: Kirill’s relatives raised the necessary amount for the donor search.
July 5, 2010: The donor search for Kirill Belov was paid in full by an anonymous supporter: our enormous thank-you!
November 3, 2010: Kirill had transplantation on October 2, 2010. He felt well and was transferred to outpatient monitoring. Kirill was taking Vfend and Entocort.
November 23, 2010: Kirill’s condition worsened. He was hospitalized with intestinal and skin GVHD.
December 8, 2010: Kirill Below passed away.
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Maria Veselova was a 24-year old single mother. She has been bringing up her son Alyosha by herself since he was year and a half. In 2009, Maria started feeling unwell and was diagnosed with myelodysplastic syndrome (MDS), which was a blood disorder that predisposed Maria to transformation into acute myelogous leukemia.
The only chance for cure for MDS could result from bone marrow transplantation. Maria needed 15,000 euros to pay for the search for the bone marrow donor at the registry in Germany and collection of bone marrow.
February 23, 2010: Maria had low blood counts (platelets and hemoglobin) so every two-three weeks she needed blood transfusions. At that time, she was at the clinic on a transfusion and usually felt better afterwards. In addition, she was given injections to increase her blood counts.
May 19, 2010: A week before, Maria was discharged from the hospital. After blood transfusions, she felt better but her blood counts started going down. Maria’s life depended on blood transfusions, and the intervals between them were shortening. Unfortunately, a donor for Maria was not found at that time.
June 10, 2010: A donor for Maria was found! We helped Maria with paying for collection of the bone marrow - it cost 10,000 euros.
August 19, 2010: Maria has developed a bacterial sepsis and was unable to overcome it. Sadly, she passed away.
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Kirill Tyutyunnik will always stay 7.
In April 2008, he was diagnosed with the stage IV neuroblastoma, a rare type of cancer that frequently recurs. Unfortunately, this was also the case with Kirill - even after bone marrow transplant procedure, the disease returned in August 2009. With the relapse, there was no further treatment available for Kirill in Russia, so his parents searched for new methods that are still undergoing clinical trials and recruit volunteers. There was a number of such studies in the U.S., and Kirill was accepted into MD Anderson hospital in Houston, Texas. Even experimental treatment, however, comes at a cost: the clinical trial was estimated at $89,000.
November 5, 2009: Kirill was shown on Russian TV this week.
November 19, 2009: Kirill’s family transferred the full amount to MD Anderson.
December 5, 2009: Kirill and his parents arrived to Houston! They are staying at Ronald McDonald’s House just steps away from MD Anderson hospital. On Monday, December 7th, Kirill will start tests and will meet his doctor.
December 10, 2009: This week, Kirill was tested and based on the results, he qualifies for the clinical trial he traveled for. He will start therapy on Monday, December 14. Since he had a very low hemoglobin, Kirill urgently needed blood transfusions, and he received one immediately on Monday, and one more the next day.
December 23, 2009: Unfortunately, based on the test results, Kirill does not respond to the therapy. Next Monday, December 28th, the boy will be switched to another protocol which is now under doctors’ discussion. Kirill needs blood transfusions almost every day.
December 30, 2009: Kirill started new treatment protocol. He will need at least 4 courses of chemotherapy. As of now, he only has money left for two courses.
January 5, 2010: Tomorrow, Kirill will also start radiation therapy on his eyes which is required urgently. The continuing treatment will cost $43,500. Kirill is receiving blood transfusions practically daily.
January 20, 2010: Kirill has been showing signs of improvement after the first cycle of chemotherapy. He is more active, plays and talks, and requires much fewer blood transfusions. It seems to indicate that his bone marrow is clearing cancer cells. After the second cycle that will start the first week of February, Kirill will undergo CT scan to evaluate effect of treatment.
February 18, 2010: Tomorrow we expect to receive a cost estimate from MD Anderson Orlando hospital where Kirill is eligible to participate in a new clinical trial. It is likely not going to be the last trial, as MIBG therapy may also be an option in the future. This week Kirill started a new chemotherapy regimen and he is feeling nauseous. But overall, he is active, seems to look better and continues playing video games.
February 18, 2010: An article about Kirill was published in North American edition of Argumenty i Fakty.
February 26, 2010: Kirill’s family received a new cost estimate for a clinical trial at MD Anderson Cancer Center in Orlando, Florida - it is for $81,000. Please help Kirill!
March 12, 2010: Kirill and his parents arrived to Orlando on March 11th. Today they met with Kirill’s treating doctor at Arnold Palmer hospital to go over details of a new clinical trial. Kirill is feeling rather well except for occasional pain in his side.
March 22, 2010: Upon arrival to Orlando, Kirill had a number of tests, including MIBG and CT scans. On March 22nd, he started chemotherapy with an experimental drug and a medication for osteoporosis. The trial would run for at least 3 cycles, and if Kirill responded well, he had to stay in Orlando for a long time. Last week Kirill had high temperature, but, fortunately, no pain.
April 5, 2010: Kirill was still feeling nauseous despite taking several anti-nausea medications. He was not eating well and lost some weight. His eye was getting better, however, and soft tissue around the eye was looking more normal.
April 26, 2010: Kirill’s disease appeared stable, that is some of his lesions have gotten smaller, and a few a little larger. It means the current clinical trial has been more effective than previous chemotherapy. Further treatment options would be discussed with his parents once all the test results were in.
May 3, 2010: Based on test results, Kirill’s disease was stable. However, due to low leukocyte count, he was not be able to start chemotherapy that week. He received Neupogen injections to stimulate leukocyte growth and was also installed a feeding tube due to constant vomiting and weight loss. Kirill’s treating doctor offered to sign him up for another Phase I clinical trial in the hope of getting a better response. There was only one spot left in the trial, and if Kirill was eligible, he was to start therapy soon.
May 26, 2010: Moskovsky Komsomolets newspaper published article about Kirill.
May 27, 2010: Last week, Kirill started radiation therapy on his abdomen where the main tumor was located. It would last ten sessions. Afterwards, Kirill was evaluated for radiation therapy on his skull as well. Kirill has now been staying in bed for several weeks due to fatigue. He also needed strong painkillers due to pain in his back and sides.
June 23, 2010: Kirill was transferred to a different chemotherapy combination, because the test results confirmed that the tumor stopped responding to the previous protocol. Kirill started therapy with Vinorelbine and Sirolimus. He was continuing radiation therapy as well, and had to receive radiation on his leg, where he had a lot of pain. His doses of painkillers were increased. However, Kirill was in good spirits. He was happy to see his little friend Yulia who came to visit him from Russia and promised her to get well soon.
July 19, 2010: Kirill was not responding to the latest chemotherapy. Unfortunately, no other treatment options were available to him anymore. The disease was progressing and new lesions were appearing. Kirill was starting to have difficulty breathing.
July 26, 2010: Kirill and his parents went to the hospital in the morning, as usual. Unfortunately, in the afternoon, Kirill had difficulty breathing that could not be helped medically. He passed away at 4 PM.
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Dasha Kuznetsova was just 2 when she got sick. She has two older brothers, mom and dad. Her 2nd birthday Dasha spent at the hospital due to a high fever. Unfortunately, the blood test results showed extremely high leukocyte count and Dasha was diagnosed with acute lymphoblastic leukemia. In September 2009, Dasha started treatment. It seemed that she tolerated it well and her test results were close to normal… But the control tests showed that Dasha did not achieve remission. She was categorized as a high-risk patient and then needed an urgent bone marrow transplantation. Unfortunately, Dasha’s brothers weren’t good matches as donors, so an unrelated donor has to be located at the bone marrow donor registries abroad. Although Russian Help Fund agreed to pay 10,000 euros for collection of bone marrow, the donor search required additional 5,000 euros and delivery of transplant to St. Petersburg costs 2,500 euros.�
December 13, 2009: We transferred $3,000 to S. Morsch registry as a partial payment for the bone marrow donor search.
December 24, 2009: Unfortunately, Dasha’s blasts began to grow very fast and it was impossible to wait until the donor was found. The doctors decided to perform an urgent haploidentical transplantation from the mother. Dasha was in cytopenia; she was diagnosed with aspergillosis and needed Vfend.
January 28, 2010: Dasha recovered after transplantation and was transferred to outpatient monitoring. She began showing first signs of skin GVHD.
February 28, 2010: Dasha was monitored as an outpatient. She felt well and was in a good mood.
March 26, 2010: Dasha was taking immunosuppressive therapy and Vfend. She felt well.
April 30, 2010: Unfortunately, Dasha relapsed. She underwent anti-relapse chemotherapy under FLAG protocol and donor’s lymphocyte infusion. The doctors were waiting for her response to treatment. Dasha still needed Vfend.
May 25, 2010: Since Dasha had no response to anti-relapse therapy, the doctors considered another transplantation along with Clofarabine injections.
June 25, 2010: Sadly, Dasha passed away.
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Masha Trukhina was 6 years old. She had alveolar rhabdomyosarcoma. The disease first appeared in June 2008 as a lump on Masha’s left temple. Subsequent treatment, including multiple chemotherapy courses, distant lithotripsy and surgeries, was not effective. In March 2010, Masha was discharged to palliative care. The tumor continued to grow with metastases to the lymph nodes in her neck. Masha’s parents could not resign to the doctors’ decision and began searching for treatment options abroad. Since Masha’s disease was a rare and aggressive type of cancer, many clinics were unable to accept her. Only the Children’s Memorial Hospital in Chicago agreed to take Masha for a clinical trial. In mid-May 2010 we received a cost estimate from the hospital.
Unfortunately, on June 17, 2010 Masha passed away, before getting a chance to undergo therapy within a clinical trial.
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Nastia Pimenova lived in an orphanage. In 2001, she was diagnosed with leukemia, and two years later she achieved remission. Unfortunately, Nastia had a relapse in 2006, but beat cancer again by September 2007. In August 2009, Nastia was diagnosed with a second recurrence. At that time she urgently needed bone marrow transplant to save her life. Thanks to Nastia supporters’ help, we were able to transfer $4,000 for the donor search for Nastia.
March 18, 2010: A donor for Nastia was found and the debt to the bone marrow donor registry was paid for in full. Transplantation is scheduled for March 27. Nastia came to St. Petersburg with a nurse who can only stay with her for a few days.
March 26, 2010: Nastia started pre-transplantation chemotherapy. The transplantation is scheduled for March 27th. Nastia feels well. We are very grateful to Russian Help Fund for paying for around-the-clock sitter for Nastia.
April 30, 2010: Nastia suffers from stage IV intestinal GVHD. She is in intensive care unit on enteral nutrition and receives painkillers around the clock. Nastia needs Intestamine, intravenous Vfend and Albumin constantly.
Nastia was transferred to intensive care and put on artificial lung ventilation. Sadly, Nastia passed away the same day, May 8, 2010.
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Yaroslav Burdun was born in Crimea, Ukraine, on May 19, 2009. When he was just two months old, he was diagnosed with acute lymphoblastic leukemia and urgently hospitalized. Yaroslav underwent therapy at a hospital in Simpheropol, Ukraine, but while there he had a relapse of leukemia.
His only chance to live was to receive a bone marrow transplant from an unrelated donor. Unfortunately, by the time his family raised enough money to arrive for treatment in Germany, it was already too late to save Yaroslav. His aggressive disease continued to progress and it claimed his life on April 17, 2010, when Yaroslav was almost 11 months old.
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Fuad Abbasov is 21-years-old student of the State University in Baku, Azerbaijan. He wa majoring in Economics, had passion for languages and dedicated the rest of his time to sports. In his last year in the university, Fuad started feeling weak and dizzy, and began losing appetite. He went through the blood tests and found he had the chronic myeloblastic leukemia (CML). Fuad was prescribed Glivec that he took for six months. During medication, his condition slightly improved and the blood counts started to normalize. Unfortunately, remission did not last long. In August 2009, Fuad stopped responding to Glivec and his condition deteriorated rapidly. Because of fever and excruciating pain in the bones, he could not move. The doctors in Azerbaijan were not able to determine the diagnosis, so his family took him to Turkey where diagnosis was identified: Fuad’s chronic myeloblastic leukemia transformed into acute lymphoblastic leukemia (AML). The Turkish doctors managed to slow down the disease, but further treatment required bone marrow transplantation.
Fuad went for treatment in the University Clinic of Leipzig in Germany. He underwent chemotherapy but his condition remained unstable: the hemoglobin was extremely low, the platelets’ count fell to 7 (with normal level of 220-250), and temperature stayed high. The transplantation remained Fuad’s only chance. The estimated cost of procedure is 250,000 euro. With the help of friends and relatives, Fuad’s family managed to collect 70,000 euro. The situation with the rest of the payment remains critical. To find a donor, the family sold their apartment - it was the only and ultimate source of funds.
January 14, 2010: Fuad underwent bone marrow transplantation today. He remains weak - however, the doctors have optimistic prognosis for him. The clinic agreed on a lower prepayment with the remaining portion to be collected shortly.
January 27, 2010: The information about Fuad was published on Moscow Echo site.
February 3, 2010: The Live Journal published extended post on Fuad (in Russian).
February 15, 2010: Unfortunately, Fuad’s condition has deteriorated as he had entered a “graft-versus-host” stage. He is weak, nauseous and has fever. Through donations and information placed in media, Fuad’s family managed to collect over 40,000 euro. With the revised cost of treatment (180,000 euro), the remaining amount to the clinic comprises 35,000 euro approximately. The copy of the bill for Fuad’s treatment can be found here.
February 26, 2010: Fuad’s mother is returning to Azerbaijan, but his father will be staying with Fuad. Unfortunately, there are no changes in Fuad’s condition. He has no appetite and spends entire time in bed. The doctors continue to lower the fever with antibiotics.
February 28, 2010: Unfortunately, Fuad has blasts in his blood and is relapsing. The doctors began an intensive course of chemotherapy. Given these complications, the amount of debt has grown back to 78,900 euro. The debt to the clinic has to be paid by the end of March, however everything depends on how Fuad would respond to the chemotherapy.
March 8, 2010: Fuad’s condition has slightly improved. The temperature fell to 37,9- 38,3. Currently, Fuad is undergoing clinical trials with Omacetaxine Mepesuccinate (OMA). Although his blood counts are still around zero (i.e. leukocytes 0,1; platelets 1-2), doctors say that the blasts reduced. Fuad is in a good mood, sometimes exchanges SMS with his relatives. Debt to the clinic still stands at around 75 thousand euro, and must be paid off by the end of March.
March 30, 2010: Fuad is again in a serious but stable condition. He lost a lot of weight and sleeps around the clock. Fuad receives chemotherapy, antibiotics, other medications and intravenous nutrition. At times, Fuad’s temperature rises. Fuad’s condition is complicated by continuous bleeding in his bladder. The doctors are doing everything they can to stop it. Fuad receives platelets and other blood components. When Fuad feels better, he talks and tries to keep a conversation.
Fuad wants to live very much and fights hard for his life. At times, he even gets up to exercise with a physical therapist. Fuad started to eat a little by himself. His father stays with him at the hospital. Fuad’s condition improved somewhat after his sister came to Leipzig and spent a week with him and dad. The bill for Fuad’s treatment is still unpaid. The remaining amount is very large.
Tragically, Fuad passed away on April 11, 2010. He will always remain in our thoughts.
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Zhenya Zotin was 7 years old. He suffered from neuroblastoma. It all seemed to start after Zhenya fell off a bike in June 2008 and had a serious trauma. However, only six months later, he was eventually diagnosed with stage IV neuroblastoma. He underwent six rounds of chemotherapy in Russia, and two more in Germany, but the tumor did not respond. At the end of December 2009, the doctors in Germany couldn’t offer a further treatment. Fortunately, a clinic in London, UK (Harley Street Clinic) agreed to accept Zhenya for treatment. The therapy is estimated to cost GBP 150,000 .
January 18, 2010: No medical news on Zhenya’s condition yet - another week of chemotherapy is coming, then recovery period.
January 26, 2010: Zhenya completed the first cycle of chemotherapy and seemed to have a response. A video about Zhenya was filmed by his support group. The video can be viewed here.
January 29, 2010: Zhenya started feeling severe abdominal and back pain. The doctors must constantly monitor Zenya’s condition.
February 9, 2010: Zhenya’s condition has worsened. The computer tomography showed an increase in tumor and doctors decided to switch to a more intense chemotherapy.
February 26, 2010: Zhenya continues to feel very strong stomach ache, his hemoglobin is falling, and he needs blood transfusions.
March 3, 2010: Zhenya’s condition deteriorated sharply. His pulse slowed down and Zhenya is breathing with oxygen mask.
The sad news came from London on March 9, 2010. Zhenya Zotin passed away.
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Alesha Levantuev was diagnosed with neuroblastoma more than 4 years ago. He was a 17-year-old boy who studied economics and loved sports, music and reading, when suddenly he fell ill. He went through chemotherapy, radiation therapy, bone marrow transplantation and several surgeries, and won! Then in May 2009, he had a relapse. Fortunately, his cancer retreated after the first chemotherapy round. But Alesha faced another difficult challenge: severe type of zygomycosis, a fungal infection in his intestines. He needed antifungal drugs, Noxafil and Ampholip - the daily dose of which cost $2,000! The therapy was going to last for at least two weeks.
November 29, 2009: Alesha was in a critical condition as his intestinal infection worsened. The doctors were going to attempt removing nectrotic tissue from his intestines. Alesha would require expensive antibiotics such as Noxafil and Amfolip after the surgery.
December 04, 2009: Alesha was recovering after his surgery. He needed more surgeries in the nearest future to remove all the necrotic tissue in his intestines. At the same time, Lesha had to take 5 vials of antibiotics Ampholip and Noxafil a day, at a total daily cost of $1,300.
December 14, 2009: Alesha underwent another surgery. He was in a stable condition but had to continue treatment with Ampholip.
Unfortunately, Alesha developed resistance to the antibiotics. He passed away on January 10, 2010, after a long struggle for his life.
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Anna Soboleva was 20 years old. She graduated from the high school with honors and enrolled into college. She had lots of dreams and plans for the future. Unfortunately, it all collapsed in a moment when Anna learned she had acute a lymphoblastic leukemia. However, she did not give up and continued studying while undergoing treatment. In March 2009, Anna had a recurrence of the disease. Her only hope for recovery was the bone marrow transplantation. The doctors believed Anna had good chances for a complete cure. She needed to raise 15,000 euros for the bone marrow donor search through the bone marrow donor registry in Germany and pay for delivery of the transplant to the clinic in St. Petersburg (2,500 euros). Anna’s friends and relatives transferred 4,000 euros to the registry, which allowed donor search to be initiated. In August 2009, a matching donor was found! The transplantaiton was scheduled for the end of September 2009.
August 25, 2009: Anya was in deep cytopenia, a condition when all the blood counts are very low. She was not feeling very well. But the news that a donor was found made her happy and hopeful! The transplantation was scheduled to the end of September.
October 24, 2009: Anya underwent the bone marrow transplantation on October 2nd. Her blood counts were growing and she felt well - except she developed a rapid engraftment syndrome and first signs of ‘graft-versus-host reaction (with her liver and intestine slightly affected). Anya continued treatment with Zenapax and Entocort, and needed a Vfend.
November 8, 2009: Anya wrote a letter: Dear friends! I’m still in the hospital fighting the complication after the bone marrow transplant: acute HVGD which affected my intestine. For the whole month, I am not able to eat anything, and every day I need to take very expensive drugs: Ademetionine - twice a day, Albumin - 1-2 times a day, Vfend - twice daily. I want to thank everyone who helped me to pay for the donor search and the delivery of the transplant. I don’t owe anything to Stefan Morsch Registry, and now I need your help only to pay for the medication. I hope that I can depend on you now and in the future, and wish all of you to stay healthy.”
- Anya Soboleva
November 13, 2009: Anya was in the Intensive Care Unit and was taking Albumin and Vfend.
Tragically, Anya passed away on December 30, 2009.
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Ilya Latiev was 19. He fought cancer since 2003. In February 2009 he had a relapse and was diagnosed with acute lymphoblastic leukemia (ALL). Due to a long-term chemotherapy, Ilya also developed problems with his liver and heart function. In August 2009, Ilya was referred for an urgent bone marrow transplantation. Since he lacked a related donor, a matching unrelated donor had to be located at the bone marrow donor registry. The search for the donor cost 15,000 euros.
In November 2009, we transferred a payment of $2,500 to the registry to initiate the search for the donor.
Sadly, Ilya did not make it until donor was found. He passed away on November 27, 2009.
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Louisa Vassilieva was diagnosed with nephroblastoma, a cancer of kidney, in October 2008. Despite surgical removal of the kidney, chemotherapy and radiation, her disease was stubbornly refusing to surrender. Due to difficult location of her lesions, Louisa had to travel to Germany with her mother to have them surgically removed.
Unfortunately, the treatment did not succeed. Louisa passed away on August 27, 2009.
