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Dear all, my name is Elena Adamyants, I'm 33 and I have two children. A little over a year ago I used to live like many other people do thinking that all bad things are somewhere far away and will never come my way. Everything seemed to be so fine: college diploma with honors, an excellent family, career growth...
Behind all that no one even noticed how trouble came: I did not pay attention to constant tiredness, repeating colds, depressions or even a dramatic loss of weight in the fall of 2008 and did not go to a doctor.
Only on January 19, 2009 when I simply could not rise in the morning due to an awful throbbing pain in my sacrum and fainted I realized that something was wrong... Then there were all kinds of diagnoses: from right-sided pneumonia to the trivial osteochondrosis... Until a blood count dated January 27, 2009 with a leukocyte count of 33,000 revealed serious blood problems.
So on February 2, 2009 I was admitted to the Hematology Research Center of the Russian Academy of Medical Sciences with the following diagnosis: Philadelphia chromosome-positive acute lymphoblastic leukemia. I had 5 heavy chemotherapy courses (until July 15, 2009) and was taking Glivec but my body became tolerant to it and it stopped preventing the formation of blast cells.
Clinical and hematological remission was achieved back in April 2009 (up to 5% of blast cells), but on a molecular level the transcript only disappeared twice due to the treatment with Sprycel (Dasatinib) in October and December 2009. That allowed the doctors to hope for a transplantation of my own stem cells without transplanting donor bone marrow. But unfortunately after 4 days of an exhausting procedure albumin transcript was found in the material taken, so transplantation of my own stem cells is now impossible for me since it can lead to a relapse. At present I am being administered maintenance chemotherapy every 4 weeks.
In order to stay alive and overcome the disease I need a donor bone marrow transplantation. I have no 100% compatible brothers or sisters. Searching for the donor and activating it is effected through the German registry Stefan Morsch Stiftung and entails serious expenses (15,000 euros plus 2,500 for bone marrow delivery by a special courier).
Unfortunately my family does not have such money: I am officially disabled, my husband has odd jobs since he spends most of the time taking care of the children. We actually depend on my parents for financial support. My father is on pension and my mother is a librarian.
My story may seem a little dry and too full of medical details but in any case I believe many people do realize what kind of physical and mental sufferings cancer patients have to go through.
The disease has made me more tolerant to the never ending physical and mental pain. There is only one kind of pain I cannot get used to, and that is fear for my children: it is unbearable to imagine that I can leave them without a mother, not being able to protect them when needed, not being able to witness their achievements and give them the gift of my love and care.
Please help me stay on this side of the tunnel with my family and friends, I do not want to go away.

Elena
Home address:
Shukhova d. 6, korp. 2, kv. 246,
115162 Moscow, Russian Federation
Contact phoneû:
+7 (495) 446-65-36 (home)
+7 (916) 572-42-29 (Rudolph Sergeevich, father)
+7 (903) 179-92-86 (Elena)

Invoice for the donor search in Germany
Medical report
Medical record: page 1, page 2, page 3, page 4, page 5, page 6, page 7

Update as of February 10, 2010. Based on the preliminary search results Elena has 16 potential non-relative bone marrow donors in the International Registry. Prior to BMT she must continue with the polychemotherapy program and Dasatinib treatment therapy.

Update as of March 16, 2010. We made the first payment of 5,000 euros to the Morsch registry. We are enormously grateful to everyone for their help!
Elena

Update as of May 10, 2010. I've been at the hospital since April 18th. It turned out my constant fever was caused by fluid in pleural area and viruses in it. It was drained three times, but I still have some left. We are trying to get all of it out at home with Valtrex.
I had to stop taking vitally needed Dasatinib for 1.5 weeks, because it is its main side effect - accumulation of fluid where it is not supposed to be.
Elena

Update as of July 8, 2010. I am incredibly grateful to Anna Levitova and Karina Heifets, managing partners of Evans Real Estate (evans.ru), as well as Maria Adamyan and Maxim Mokeev for initiation of fundraising, and daily search and analysis of information regarding treatment methods in different clinics. Several events to raise money for my treatment were organized, and there is an online art auction at evans.ru that is still open. I am very grateful to all the artists who donated their art for charity!
Thanks to these people, I understood in real life the meaning of the phrase "having 100 friends is better than having 100 rubles". They are not only people who were my managers in the past, but also, above all, close and supportive friends. Of course, there are many other colleagues, clients and company friends who have contributed to the fundraising and search for information. I am enormously thankful to all of them!
Every day I wake up thinking that I am grateful to God for bringing me one day to this amazing place where support and care are not just words, but every day reality. This is a true family.
I am very grateful to all my former colleagues from DTZ Debenham Zadelhoff company for active participation in the raising funds for my treatment, as well as for organizing a fun event that not only brought in money, but also gave us all a chance to have fun and see each other once again. I am particularly grateful to Elena Kolesnikova, Anna and Evgeniy Lednev, Anna and Nikolai Dinges, Yulia Kobylinskaya, John Delarghi, Elena Biletskaya, Ekaterina Horoshilova and her Asian dance troupe for organizing and performing in the event, and also to Maria Surkova, Stefano Karosi, Margarita Teploukhova, Sergei Sokolov, Marina Minasova, Lumina Reznik, Maria Khokhlova, Anton Zavarzin, Yulia Khvan, Patrick Farley, Armen Kirakosyan, Natalia Kovalevskaya, Irina Doschenko, Aleksei Prokofiev, Ilona Nikonova, Irina Maksimenkova, Alexandra Velchenko for their participation.
I am also especially grateful to very talented artist Andrei Prakhov for donating his painting as a prize for the lottery.
And I would like to also thank Yulia Kobylinskaya and Anna Dinges for their daily hard work to create and update the website: helplena.ru.
Elena

Update as of November 10, 2010. We were unable to find a matching donor through Morsch registry. When we learned that Israeli clinics (Hadassah and Ichilov) have access to an American donor base, NMDP, we decided to go for a consultation with them.
In July we came to Israel, where Dr. Shimon Slavin recommended IMAK injection for $28,000, in the hope that afterwards bcr/abl 190-210 will disappear. An alternative was transplantation from a partially matching donor with activation of his/her t-lymphocytes.
However, after receiving a second opinion about this methods, we decided to decline these options, considering also that such transplantation would cost $280,000 (plus living expenses). We knew we could not afford it.
In Hadassah transplantation costs close to $140,000 (the procedure plus three months of follow-up). Then every three months we would need to pay additional $20,000 for maintenance therapy.
We went to Washington, DC at the end of October. There we were offered a different option: a clinical trial. They offer less aggressive chemotherapy, but that would increase the relapse risk. At the clinic, they are studying mechanism of body recovery with help of GVHD. Since the clinic takes responsibility for treating their patients for the rest of their lives, without asking for money at every step, I decided to undergo transplantation there, especially since I was found to have 2 well-matched donors according to the preliminary search.
I will mostly incur living expenses (and possibly pay for some medications) in a rather expensive location near clinic (Bethesda, Maryland) for 15 months. This would cover 4 cycles of immunosuppressive chemotherapy, then main chemotherapy and monitoring for a year after transplantation of stem cells from a donor.
Then, with God's help, I will be able to go home and go for control checks locally every six months for 5 years. This is if everything goes well, and I don't even think of any other possibility. This program was earlier used during related transplant, and all their patients are still alive after 2 years! Now they are accepting patients with unrelated donors.
The only obstacle I may have is issues with my lungs: I had some test with tubes for about an hour, and something was not quite right.
And another thing: I have to be in first remission, or I will not be enrolled. There is very little time left, and now we need to stop the donor search in Israel that we already paid for.
Elena

Update as of December 2, 2010. My warmest wishes to everyone who had come to support me at ZIMA: MELTING SEASON, or Soul Warm-Up party in such a cold weather. Unfortunately, I was not able to attend myself, but I am really hopeful to see everyone after I get well.
I am particularly grateful to my tireless and enthusiastic supporters: my friends and colleagues from DTZ Moscow, and especially Yulia Kobylinskaya, and Anna and Nikolai Dinges for organizing it. We never stop amazing me!
Elena

Update as of June 27, 2011. Chemotherapy had been postponed. Elena had to go through a number of additional tests, but now her participation in the program is confirmed. On June 29 Elena is to get a catheter and then FLAG protocol chemotherapy is to start.

Update as of August 29, 2011. It is impossible to describe in words how grateful I am to everyone who has been helping me get close to my second birthday! With your support, I was finally found a great donor, and I have completed immunosuppressive chemotherapy. I am now receiving pre-transplantation chemotherapy and bone marrow transplant is scheduled for September 1st.
Afterwards, I will need to stay here for another 12 months. That period will be very important, as my body will be exposed to risk after transplant due to low immunity.
I am really hoping that I will be able to return to normal life so I can be a great mom to my kids. Without you, you would not have been possible. I am deeply grateful to everyone who took my plight to their heart. Hope you can get it paid back many times!
Elena

Update as of November 23, 2011. Elena underwent transplantation on schedule. She does not feel too well now, as she suffers from pleuritis, fatigue, damage to arteries in her hips that causes serious pain, and periodic depression. There are no signs of GVHD so far. Dasatinib was replaced by nilotinib.
Elena is periodically allowed to go home to recover. The last week she was in the hospital due to fever and received antibiotics.
On December 1, 90th day post-transplant, she is planned to undergo a puncture and complete evaluation.

Update as of January 17, 2012. Elena feels rather well, but she was discovered to have Epstein-Barr virus infection and suspected arthritis of hands. Elena receives appropriate therapy and goes for regular tests.

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