Hello!
I am pleading for your help.
My best friend is sick with a terrible disease, acute lymphoblastic leukemia
(ALL common-variant, ph-positive). She was diagnosed in mid-October 2007,
when her disease was already pretty advanced.
At first it seemed like a verdict, a death sentence! You can imagine what kind
of a hit it was for Nastia, especially considering that she did not have parents
or close relatives who could support her emotionally at that difficult time and
inspire confidence in herself and in tomorrow. The only person who was by Nastia's
side at that terrifying time was her boyfriend. Andrei found the right words,
made Nastia fight and was with her almost every day she spent at the hospital
(close to six months). He brought her expensive medications, food and clothes.
That was not the most important thing, however. Mainly he gave her the feeling
of being loved and needed, and that she simply had to live! In addition, the
doctors tried hard to explain to Nastia that her disease can be cured and
conquered. From that moment Nastia started endless procedures to administer
high-dosage and very toxic chemotherapy, during which she was on a brink of
death several times due to allergy to certain drugs. We are enormously grateful
to her doctors at Hematology Unit of Botkin hospital, Svetlana Vladimirovna and
Alexei Vadimovich, for their compassion and professionalism. Thanks to their
help Nastia survived those hard moments. After another chemotherapy round her
cancerous cells went down to a minimum, which meant she was entering remission
and her disease retreated. This was a huge victory for both Nastia and her
doctors!
Unfortunately, chemotherapy alone is not enough, as there is a high risk of
relapse. Now Nastia critically needs bone marrow transplantation. All her
blood counts are normal now and she is recommended the procedure, which cannot
be delayed for long, as no doctor will even speculate how long her remission
will last.
We are asking for help now because Nastia and Andrei are in a very difficult
situation. Andrei works as a doctor at a state facility and is unable to earn
much. However, the whole transplantation process is very expensive, because
the search for the donor takes place in Germany, then the bone marrow is
delivered to St. Petersburg where the operation will take place. Andrei also
needs to rent a place in St. Petersburg for at least six months as he is from
Moscow. Altogether, it will cost at least 20,000 euros, so any help that you
can offer will be invaluable.
Please give Nastia a chance to live! She is so young and beautiful and could
do so many good things in her life. The most cherished
dream that Nastia and Andrei have is to start a family and have many kids.
Please help them make it real.
Thank you very much in advance!
Update as of October 14, 2008.
We are sincerely grateful to Give Life fund that agreed to pay for the
donor search for Nastia. Therefore, the most urgent need now is to raise 9,700
euros to pay for the bone marrow harvesting from a donor. This amount will
be needed by the time a donor for Nastia is found.
Update as of December 16, 2008.
A donor for Nastia was found! The transplantation is scheduled for the
beginning of February. Unfortunately, we still lack the money for the
collection of bone marrow (9,700 euros) and delivery of transplant
to St. Petersburg (2,500 euros). Please help Nastia!
Update as of January 26, 2009.
My trip to St. Petersburg for transplantation is being postponed. It was moved
to February 25th due to donor’s personal reasons. This is actually not a problem for me,
as I am having a difficult time obtaining a quota for the transplantation.
I am not the only person this year who has had to deal with the bureaucratic obstacles.
As I found out, there were not quotas given out to Moscow this year, so the patients
have to solve the issues at the Ministry of Health level by submitting an application,
waiting for response for close to a month, and the results are not necessarily positive,
as this involves direct financing from the budget of the federal subjects.
In general, there is little I can do to resolve this problem. However, we are still
trying to do everything possible and impossible too.
Nastia
Update as of January 30, 2009.
Fortunately, my problem with getting a quota has been resolved! The necessary
document was obtained in a very short time period. I was very lucky! On Tuesday,
February 3rd, I will travel to St. Petersburg, and I should arrive there the next day.
Nastia
Update as of February 9, 2009.
Captain Nemo paid off Nastia's debt to Stefan-Morsch bone marrow donor registry.
We are enormously grateful to Captain Nemo for his help!
Update as of February 25, 2009.
Nastia is undergoing pre-transplantation chemotherapy. The transplantation
is scheduled for tomorrow.
Update as of March 7, 2009.
On February 25th I underwent transplantation. Today is the tenth
post-transplantation day. Chemotherapy was very harsh, and as a result,
I am now in complete cytopenia with lots of complications and health
issues, but this is supposed to be a normal situation with this type
of treatment and we try to not panic about it.
This is my news. I would really like to start recovering already.
Nastia
Update as of March 26, 2009.
Hello! I was allowed to go home, which means I can return to Moscow.
I can't believe that just a week ago I was dsicharged from the hospital,
and now I can go home! I did not expect this to happen so soon.
Of course, this is not the end yet, and I will have to visit the hospital
for many more months. I will return to St. Petersburg in 3 months for
testing, then - in six months, and so on.
The most important thing is that the difficult part is behind me and now
my goal is to recover as soon as possible so that I can forget about the
hospitals and procedures, and become really free! I cannot
wait to become a fully able person again.
This is my news. I will continue updating you and hope that my future
letters will always have only good news!
Nastia
Update as of June 3, 2009.
On June 5th it will be my 100th day post-transplantation. On that day I
will go for the control puncture for cytogenetics (molecular biology).
This is the most important test, results of which will determine
further treatment.
All is well more or less. My condition is pretty good. The last test for
chimerism showed 100% engraftment. For now, I regularly go for blood tests
for biochemistry and PROGRAF, and take pills.
I wrote to my doctor in St. Petersburg, who is currently away until the
end of June. She said that if I feel well and can be tested in Moscow,
then I do not need to travel to St. Petersburg for examinations.
Nastia
Update as of July 18, 2009.
A week ago I went to St. Petersburg and was tested. The results are good
and everything is well. I feel well too. The next checkup is going to be
in October. So I am doing well and hope that I will stay well!
Once again, I am very grateful for everything to AdVita, my doctor,
Anna Gennadievna, and personnel of the clinic!
I am wishing all patients to get well soon and stay healthy!
Nastia
Update as of November 16, 2009.
Nastia completed planned examination. Everything is well. Her next
round of tests will be in January 2010.
Update as of March 4, 2010.
In February I went to St. Petersburg and was tested.
Today I received results and they are good! The next
visit is scheduled for May.
Nastia
Update as of June 23, 2010.
I have bad news. On June 9th I had tests in
St. Petersburg and last week I got a response: 40% of blasts in bone marrow.
This is not good. Today my doctor Yulia Rudnitskaya called and said that I
will need to start chemotherapy and receive donor's lymphocyte infusions in
St. Petersburg, possibly already next week, or in any case, soon. I will be
grateful for help with renting an apartment in St. Petersburg.
Nastia
Update as of July 13, 2010.
Nastia will need to undergo high-dose chemotherapy under FLAG protocol
in combination with Dasatinib therapy. Unfortunately, she cannot get it
for free. A course of therapy costs about
185,000 rubles.
Please help Nastia!
Update as of July 23, 2010.
After three weeks at the hospital, I was allowed to rest at home until
Wednesday, which was great news for me. The 22 days at the hospital
were very difficult.
After chemotherapy I felt so unwell that the doctors did not risk
performing lymphocyte infusion. And while I was recovering, the counts
grew and it was decided to postpone the procedure.
The puncture showed that blast percentage went down to 20% from 40%.
The doctors are very hopeful that Dasatinib will work
well in the future too.
Nastia
Update as of August 5, 2010.
On Tuesday I had a puncture. Today I learned the results: 1% of blasts!!!
Only on Dasatinib therapy! I am enormously grateful to my supporters whose
help allowed me to buy Dasatinib!
Nastia
Update as of August 27, 2010.
On August 25 I came to St. Petersburg and today I already got the first
test results: 48% of blasts in myelogram. Even though I still need to see the
results of cytogenetic test and chimerism, it is already clear that I need
to be hospitalized soon for chemotherapy.
So on Monday I will most likely go for another puncture in Botkin Clinic,
wait for the rest of the results from St. Petersburg and then
start the chemo.
Nastia
Update as of September 20, 2010.
Thanks to help from Health Administration, Nastia was able to receive
Dasatinib for free. She now receives large doses of Dexamethasone and
once a week she gets mitoxantrone and dasatinib. After leukocyte counts
decreases, she is planned to undergo lymphocyte infusion.
Update as of October 26, 2010.
After a month-long therapy (From September 2 to September 28), with a
small dose of mitoxantrone and a decent quantity of dexamethasone,
I started having viral and infectious diseases due to lowered immunity.
It took a long time to fight them.
The doctors decided to discharge me so that I could rest and get well
and then start serious chemotherapy (FLAG protocol). I am now at home,
but soon will get hospitalized. Based on the recent puncture results,
I am in remission, which was achieved with the help of mitoxantrone
and dexamethasone. And of course,
dasatinib, which I continue to take.
Nastia
Update as of November 30, 2010.
The doctors are insisting that FLAG chemotherapy is contra-indicated
in my case, as there is a 90% chance that I will not survive it due
to my weak immune system. It is seen even at the light chemotherapy:
I get really serious complications.
Based on the latest results, I have at least 20% of blasts in
bone marrow, although I am continuing dasatinib. So I am now facing a choice:
either risk it and start FLAG chemo, or stay as outpatient on Dasatinib,
Mexamethasone, and possibly Vincristine or 6MP.
I am of course scared of FLAG, so today I will let me doctor know my
blood test results and we will decide on further medical treatment.
Overall, we got to a point where the doctors are scratching their heads.
They cannot offer me anything substantial to seriously change my situation.
It is not because they do not want to, or do not know how to, but a relapse
after bone marrow transplant does not have approved treatment protocols
and the doctors act according to a situation and depending on each
patient's condition. In my case, chemotherapy is extremely dangerous,
so everything will stay as is...
So this is our unhappy news. I need to pull myself together and try to
rescue myself if my body allows it. I will try hard.
Nastia
Update as of February 4, 2011.
I am now at home and taking dasatinib and mercaptopurine as maintenance
therapy. Based on the last test as of December 21, I have 29% of blasts
in bone marrow. I feel OK, although due to low immunity I get sick
often and it takes a long time to get well.
I am wishing everyone to get well soon.
Nastia
Update as of April 10, 2011.
After discussion of Anastasia's treatment at Gorbacheva Pediatric
Hematology & Transplantology Institute, it was decided that if her
condition stabilizes, she will undergo donor's lymphocyte infusion in
late April-early May. Date of lymphocyte collection from donor has
not been decided upon. It means that Nastia will need 2,500 euros
to pay for urgent delivery of cells.
Update as of May 4, 2011.
Nastia was hospitalized at Botkin's hospital on April 26th. At night
she started feeling unwell - she had bone aches, severe fatigue and bleeding.
Fortunately, the doctors told us the stomach bleeding is not serious,
but it is causing Nastia to have low blood counts.
By now the beeding stopped, but blood counts are still low, although
Nastia gets frequent plasma and platelet transfusions.
Nadezhda, Nastia's friend
