There was no sign of an impending disaster.
On May 30, 2007 my leg started to hurt, and by the next day I could no longer walk.
The doctors detected a blood clot, installed a vena cava filter, and started looking
for the underlying cause of the clot. All my organs were in order, but after one more
blood test I was told that leukemia is a suspect.
I can calmly think and talk about it now, but at that moment, naturally, I was shocked.
A lot of questions arose in my mind: "Why me? What for?" I had always tried
to lead a healthy life. I had a job, a child, and a family. In 2006 I successfully
graduated from college. I was waiting for August, my first leave that would be spent
not on exams and the thesis, but with my child. We planned to take our 4-year-old son
to the seaside for the first time. But our plans fell apart. I was urgently transferred
to the hematology unit of another hospital. I was warned right away that the treatment
would be lengthy. Yes, those three months seemed endless. But I always had people around
me whom I could lean on. My girlfriends and my co-workers visited me in the hospital all
the time.
My husband didn't miss a single day. Sometimes he would just come for 10-15 minutes,
but he visited me every day. I was eager to be discharged, and then (in September)
I entered remission. Afterwards I was told that I needed transplantation. There was
a high probability that my disease would return.
In December 2007 my sister and I came to Raisa Gorbacheva Clinic in St. Petersburg.
We were so happy when we found out that my sister Lyuda fully matched me as a donor.
Unfortunately, the time was lost, and when we returned for transplantation in March
it turned out that I already relapsed. The transplantation was postponed indefinitely.
However, what is really important is that everything can be reversed and I can be cured.
All the doctors I talk to keep reminding me about it. I am certain that I will be
discharged a healthy and normal person. I will return to my usual life. We will be
bringing up our son and maybe have a daughter too. And now I have my mom and caring
doctors nearby. I hope to undergo all these trials with dignity. My young and strong
body will withstand everything!
Unfortunately, the treatment in St. Petersburg is very expensive! I am asking for your
help with overcoming my disease.
Update as of June 9, 2008.
On June 4th Olya had transplantation and she is now in cytopenia. She feels relatively well,
except for mucositis in her mouth. Despite that she tries to eat a little by herself.
Update as of June 13, 2008.
Olya needs intravenous Zovirax, 20 ampoules (4 packages).
Update as of July 19, 2008.
Olya completed treatment and will be going home.
Update as of August 3, 2008.
Olga is coming to St. Petersburg from Archangelsk on August 6th
for the control testing. Since the hospitals in Archangelsk lack medications necessary
for post-transplantation period, Olga is asking for help with purchasing them for the
next two months. She needs Mycosyst (100 mg twice a day), Ciprinol (500 mg twice a day)
and Cyclosporine (100 mg twice a day). Olya feels relatively well, although
she has some skin GVHD.
Update as of September 16, 2008.
Olga is now undergoing planned examination at Raisa Gorbacheva clinic.
Update as of September 30, 2008.
Based on the test results, Olya is doing well. She already returned home.
Update as of December 12, 2008.
Unfortunately, planned testing showed that Olya relapsed. After chemotherapy
the blasts disappeared, but Olga needs a long-term therapy with Dasatinib,
which is currently not available for free under federal quota. A package
of Dasatinib costs 204,215 rubles and lasts six weeks (with daily norm
of two capsules). Please urgently help Olga!
Update as of January 19, 2009
Olya will come for the planned testing, as doctors have to evaluate
the effectiveness of the first course of Dasatinib. Most likely, the
therapy will continue, but Olya has not been able to obtain it under free drug program.
Update as of January 29, 2009
The test results show that Olya has a positive dynamic and she feels well.
The treatment with Dasatinib should continue, but unfortunately, it is
not available under federally-funded free medication program at this time.
Update as of April 4, 2009
Olga is coming for testing.
Update as of April 15, 2009
Olya completed planned examination, and she is doing well.
Olya feels good and she continues therapy with Dasatinib.
Update as of August 23, 2009.
Olga has some vision problems. She is
undergoing treatment in Arkhangelsk. As soon as it is over, she will travel
to St. Petersburg for examination.
Update as of October 2, 2009.
Olya is undergoing treatment at BMT clinic, where she already had 9
lumbar punctures. Olya is also taking Dasatinib and receiving immunoglobulins
intravenously. The next week she will have tests and a decision will be
made regarding further treatment. For now, she has not been able to achieve
complete remission. The issue with receiving Dasatinib at her place of
residence has not yet been resolved. The treatment at Ophthalmology
clinic has been put on hold.
Update as of November 5, 2009.
Olya is continuing therapy with Dasatinib. Her bone marrow is now
cancer-free, but she still has signs of neuroleukemia. In the near
future, Olya will undergo second bone marrow transplantation.
Update as of November 9, 2009.
I am very grateful to everyone who showed their care and support and
helped me with buying Dasatinib. Thank you very much!
Olya
Update as of February 4, 2010.
On December 26th, after 12 radiaiton sessions, I was allowed
to go home to recover. On January 24th I came back for a checkup.
These are my results:
- Clinical blood test is normal.
- Lumbar puncture showed clear spinal fluid.
- Biochemistry blood test: all liver counts are heightened.
I was recommended Heptral therapy.
- Sternal puncture: no blasts, 100% chimerism, but noted bcr-abl
190 gene transcript.
After the consultation with Professor Afanasiev, it was decided
that I will get donor's lymphocyte infusions from my sister once
a month to stmulate GVHD and prevent possible relapse. The number
of injections will depend on test results.
Olya
Update as of April 4, 2010.
I came for a checkup on March 17th. The liver indicators (ALT and AST)
improved somewhat, but are still far from normal. The bone marrow
punctures showed that all is well and I am very happy about that.
I got sick with bronchitis, so infusion of the second dose of
lymphocytes was rescheduled to May 5th.
Olya
Update as of May 19, 2010.
Olya and her donor sister have come to the clinic for scheduled lymphocyte
infusion. Olya feels well.
Update as of May 24, 2010.
On May 4th I came to St. Petersburg for another checkup. I had sternal
and lumbar punctures and several blood tests. The bone marrow and CSF
are clear. Liver indicators are slowly improving too. If previously
they were 3 times higher than norm, now they are 2.5 times normal.
The doctors believe that I had skin graft versus host disease in light form.
The symptoms are gone, but most likely will return as on May 18th I received
the third dose of lymphocytes from my sister.
On May 19th we were allowed to go home. The next trip is planned for
the end of June. Next time it will only be checkup, without
lymphocyte infusion.
Olya
Update as of July 3, 2010.
Olya is coming for planned examination in St. Petersburg. She feels well.
Update as of July 20, 2010.
Olya came for an examination at State Medical University in St. Petersburg.
The puncture results are normal, but she has heightened liver counts
and needs therapy. Olya feels rather well.
Update as of August 4, 2010.
Olya underwent planned tests. The next checkup is scheduled for the end
of September. Based on test results, the fourth infusion of donor's
lymphocytes was canceled, as Olya has sustained remission and donor's
bone marrow is functioning well. She is planned to start taking
lower doses of Dasatinib. Olya also need to continue liver treatment.
She feels well. On July 30th she went back home.
Update as of October 10, 2010.
In Archangelsk, just before my departure for St. Petersburg for planned
examination, my hemoglobin count fell to 67. I had issues with my legs
and could not walk for two weeks. At the same time, I got herpes rash
and based on the test results I was diagnosed with a toxic hepatitis.
I received a blood transfusion and therapy with antivirals and phosphogliv,
and on September 29th I flew into St. Petersburg. Based on control
puncture, my bone marrow is clear of disease, it is 100% donor's
marrow and there are no blasts. The tests are ongoing.
Olga
Update as of December 6, 2010.
Olya is now in Archangelsk. She is in remission in regards to her
primary diagnosis. On December 14th she will come for control
tests in St. Petersburg.
Update as of December 18, 2010.
During examination at R. Gorbacheva Pediatric Hematology & Transplantology
Institute, Olya was diagnosed with CNS leukemia (3rd relapse). Her bone
marrow is cancer-free.
Previous chemotherapy and radiation produced a year-long remission.
It is possible that blasts grew in response to reduction of Dasatinb dose.
The dose was increased again. Olya is planned to undergo series of
lumbar punctures with chemotherapy drugs.
Update as of February 8, 2011.
Olya is now undergoing a course of lumbar punctures with chemotherapy drugs.
As soon as remission is achieved, radiation therapy and donor's
lymphocyte infusion will be discussed. Olya does not feel very well
now due to issues with her mouth and liver. She needs Heptral.
Update as of March 22, 2011.
Based on results of Olga's examination in the clinic, her CSF is
clear of cancer and myelogram is normal, but blood counts have plummeted.
Due to increase of dasatinib dose, hemoglobin count dropped. She is
considered for either donor's lymphocyte infusion or
radiation therapy.
On March 19th Olya went back home. For now she will be treated locally
where she will receive transfusions of platelets and R-mass.
She is planned to return to continue treatment at R. Gorbacheva
Pediatric Hematology & Transplantology Institute on May 10th.
Update as of May 29, 2011.
Olga was at the Raisa Gorbacheva Institute for an examination.
The spinal puncture showed that the spinal fluid is clear.
Based on the bone marrow puncture there are no blasts.
She is now being treated with Sirolimus and is feeling OK.
On July 20 she will need to come for another examination.
Update as of August 5, 2011.
Olga came for another evaluation at R. Gorbacheva Institute.
Based on puncture results, she is in complete remission, but
her blood counts are low. She has low hemoglobin and needs
periodic R-mass transfusions. In early November she will have
to come for another series of tests.
Update as of October 30, 2011.
Olya came in for planned tests at the clinic.
Based on examinations, she has 100% donor's chimerism. There are
no blasts, CSF is clear of cancer cells, and there is no cytosis.
However, cytogenetic tests in bone marrow and CSF showed minimal presence
of one of oncomarkers, and Olya received donor's lymphocyte infusion
again. She still suffers from chronic bronchitis and medical hepatitis
and receives appropriate therapy. In addition, her hemoglobin count goes
down from time to time and she receives periodic blood transfusions.
The next examination is scheduled for mid- to late December.
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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