My name is Gayane. I am 41 and I have two daughters. I finished school in
1984 and became a student of a medical institute where I acquired the profession
of a pharmaceutical chemist. All my life I have been making a living on my
own. I have never had to ask for money as I always tried not to let my expenses
exceed my modest salary. Of course the money I made was only enough for my
children's education. But I was happy with what I had. Everything was fine
and I was sure that I would be able to see my children well set in life.
In the spring of 2008 I felt I was growing weak and it was more and more difficult
to come back home after a hard working day and do the chores. At first I thought
it was because I had not had a vacation in a long time, but headaches and dizziness
continued. I went to a doctor who prescribed drugs to improve blood circulation
in the brain – he thought it was due to osteochondrosis. The treatment course
helped but the effect did not last.
Life was busy, and I hardly noticed the
arrival of year 2009 which brought chaos and horror into my home. On December
27 I suddenly got a fever. The fever persisted all through the holiday season,
after which I could finally see a doctor. I had a blood test and heard a diagnosis
which was later on confirmed at the Hematology Institute of the Russian Academy
of Medical Sciences: chronic myelogenous leukemia. At first the doctors' prognoses
were more or less optimistic. The recommendation was to take a certain dose
of Glivec which was to ensure that I would be able to live and work for at least
7 years (the drug was registered in Russia, as well as in the rest of the world,
in 2001 and naturally the doctors did not have lots of experience with it). I had
to put up with the situation and follow the doctors' instructions hoping for
the medical science to progress.
In June 2009 I was scheduled for an examination
in Moscow.On my way there I was absolutely sure that I would surprise the doctors
with my achievements, that I the disease had been suppressed. But the reality
was a lot worse, moreover, it was unpreventable. The test results showed that
a 6 months' course of Glivec did not result in any changes, and the disease
had not given way at all.
The doctors recommended to increase the dosage and
at the same time to begin looking for a donor for a bone marrow transplantation – an
expensive procedure but the only way to try and save my life. There was no relative
donor: my only brother was not a match, and an increased dosage of the drug
had a toxic effect on my blood so that the counts went even worse. At present I
am only taking the drug as a maintenance therapy. In the meantime the Raisa
Gorbacheva Institute of Hematology and Transplantology which I addressed for
help started a search for a compatible donor in the Morsch registry in Germany. I
now have to pay 15,000 euros for a more detailed donor search.
In spite of the fact that I am not too old yet, I have a 25 years' employment
history. Even now I still have to go to work because I am the only wage earner
in the family. Yet I have not made any savings in all the years I had been working
since everything I earned was used for everyday needs. Now I have to ask for
financial help so that I can continue with the treatment. I am asking you for
your support.
Update as of January 13, 2010.
Gayane feels rather well and takes Gleevec. One of the charities
in Moscow donated 5,000 euros for the first installment to
Stefan Morsch registry. The donor search was initiated.
Update as of April 3, 2010.
Gayane came in for another consultation. The search for a donor
in the international registry is continuing.
Update as of August 18, 2010.
Gayane is being administered maintenance therapy at home.
Unfortunately a matching donor has not been found yet.
Update as of June 25, 2011.
Gayane is administered Dasatinib and has a stable remission.
The donor has not been found yet.
Update as of July 2, 2011.
Hello, my dear supporters! I know that I have not updated you in a while.
But the fight with my disease and the daily routine is taking all the
strength I have left. Unfortunately, I still have no news in regards
to donor search, even though it has been over 1.5 years.
The doctor from the clinic said that at first they were very optimistic
about the search results, because there were many potential donors.
However, after taking a close look, none of them matched more than 65%,
and that is too low.
The search is continuing. And there is less and less time left. I don't
think I will make it. Since Gleevec was not helping me, I was moved on
Dasatinib. That also causes a lot of issues, as medication deliveries
are sporadic. The last time I received the medication at the end of
April for a month. Now the budget is depleted and I cannot get
the pills anymore.
I have to find ways - thankfully, the doctors are always ready to
help. I am very grateful to all the supporters and Advita fund
volunteers for their care. But I try to visit the site rarely.
I get very affected by others' pain and suffering, and I don't
need negative emotions at this time. I try to see things
positively, or I would fall apart completely - and then no one
would be able to help me with anything.
I come to St. Petersburg at least every other month - either
for tests or to pick up pills. After the trip, it takes a week
for me to get back to normal. All that was about me. Now, about my
disease I do not have very good news either - after 6 months on
Dasatinib I got new chromosomal abnormalities in bone marrow that
are showing up in almost 100% of cells.
The last study was on June 21. The doctors said that while I can
walk, they won't do anything, or they would only cause harm.
But I think that nothing bad will happen to me.
So I live like an ostrich.
Respectfully,
Gayane
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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