My son has cancer. Please help me save him!
I am a desperate mother of a sick boy and I am asking for your help. We live in Pyatigorsk.
My son Boris is 21. Since he was 5, I have been bringing him up by myself, after his father,
Alexei Boiko, disappeared in July 1988.
In December 2001, Boris was found to have a malignant hemangiopericytoma (sarcoma of front soft
tissues of abdomen). His disease is complicated by him having spinal amyotrophy type III
(Kugelberg-Welander disease). Since he was a child, Boris has been on the 1st group disability.
On December 16, 2001 Boris was operated in Pyatigorsk, and in January 2002 he received radiation
therapy. Unfortunately, 11 months later he had a local relapse, for which he was operated and
received more radiation therapy in December 2002. However, in July 2003 another relapse occurred.
At that time, I asked the oncologists in Pyatigorsk to refer us for treatment at Blokhin Russian
Oncological Scientific Center in Moscow. We were refused on the grounds that Moscow was not in
their region, and we were referred to the hospital in Rostov instead. In Rostov, we were directed
to receive chemotherapy and sent back to Pyatigorsk, where Boris received two chemotherapy courses
in July 2003.
In December 2003 Boris started feeling worse. His tumor reappeared and started to grow. The
situation was critical. He was in a lot of pain, as his tumor seemed to enlarge in front of
our eyes. I got in touch with a friend in Moscow and asked her to set us up for a consultation
with the oncologists at Blokhin Russian Oncological Scientific Center. We were advised to bring
Boris to Moscow for treatment and an operation.
In December 2003 we arrived to Moscow, and on December 11th Boris was admitted to the hospital.
After the review of test results, he was diagnosed with PNET (III degree primitive neuroectodermal
tumor of abdominal soft tissues) with FNCLCC grade 7.
During his stay at the Blokhin Center, Boris received four chemotherapy courses. After each course,
his blood indicators were worsening and he was getting diagnosed with leukocyturia, erythrocyturia,
mucositis, stomatitis and pancytopenia. The lengthy and costly treatment of these diseases had to
be undertaken after each chemotherapy course.
In the near future, Boris needs to start a course of radiation therapy, which would include 40
sessions and last 2 months. After the radiation therapy, a decision will be made regarding an
operation and further chemotherapy.
As Boris is bed-ridden, I have to stay with him at all times. Currently, I do not have the opportunity
to work. His disability pension is 1,310 rubles, and it does not cover the cost of treatment. Until
recently, we had savings, which we used during the last four chemotherapy courses. Unfortunately,
we have no more money.
During radiation therapy, Boris will need to take the medicines designed to improve the levels of
blood components, such as Neupogen (10 ampoules with cost of 7,000 rubles each) and Thrombocyte
concentrate (10 doses with cost of 341 rubles each). The total we would need for medicines only
is 73,410 rubles.
However, the situation is complicated by the fact that Boris cannot stay in the hospital during
radiation therapy, as he is an outpatient. We have to bring him to the hospital every day (except
weekends).
We do not own a place in Moscow, and we would need to rent an apartment near the hospital as well
as a car to transport Boris (he cannot walk due to spinal cord disease called spinal amyotrophy).
The apartment rent would cost at least 9,000 rubles a month, and a car rental would be additional
200 rubles a day. The total rental expenses would be 13,000 rubles a month, and since the radiation
therapy is scheduled for 2 months, we would need a total of 26,000 rubles. That brings the overall
costs to receive radiation therapy to 99,410 rubles. In addition, an operation and further
chemotherapy may require extra spending on our part.
All parents want their children to be alive and well, and I am pleading for your help with saving
Boris.
Please be compassionate and help us! Any support that you offer us may give us a chance
to save Boris.
Svetlana Lysenko (mom),
Updated as of September 19, 2005.
After the initial post about a year ago, the following has happened.
Boris was able to complete his last radiation treatment (he had 3
series of radiation treatments total) and had several courses of
chemotherapy (16 courses of chemotherapy total after his diagnosis!).
The tumor had partial response to the radiation and chemotherapy, and
significantly reduced in size. But in January 2005 new abdominal and
bone pain started. Boris was diagnosed with osteoporosis and
neuropathic pain in February 2005, and was treated with
calcium/vitamin D and Miacalcic medication (Calcitonin nasal spray),
and some other medications. The pain was controlled for some time,
but in May 2005 severe pain started in his lower abdomen and upper
thigh area. Boris and his mother consulted their physician in
Blokhin's Russian Oncological Research Center in Moscow. Boris did
MRI, CAT and some other diagnostic tests to find out the source of the
pain. Unfortunately, they found that the tumor started to grow again.
Another 3 courses of chemo were prescribed, but despite that, the
tumor slowly continued to grow. It meant that the tumor had developed
resistance to the previous chemotherapy regimens. The tumor sometimes
caused severe pain that was very difficult to control.
Boris is a very brave man, very optimistic and with great sense of
humor (by the way, he has a very high IQ and is a big computer
fan). He never shows that he is scared or in pain. Doctors call him
"the examplary patient". His mother is very optimistic person, too.
But even the most optimistic people have their limits. Boris has been
fighting his cancer for almost 4 years now, his family's finacial
resources are exhausted, and they are all very tired emotionally.
Chemo is very hard on the body and cannot be continued indefinetely
(big tumors eventually develop resistence to any chemotherapy drugs).
Therefore, Boris started to insist on surgery to remove the tumor,
despite the high risk of such surgery. If the surgery is successful,
Boris will have a real chance of a complete recovery, provided that he
gets several courses of advanced chemo after the surgery, to kill the
residual disease in his body. There are wonderful surgeons in
Blokhin's Russian Oncological Research Center in Moscow, who agreed to
proceed with the surgery. The surgery was scheduled for September 21.
Updated as of September 22, 2005.
Boris had major surgery on September 21, 2005 to remove the tumor in
his abdomen (it was his 3rd surgery during the last 4 years). The
surgery lasted 6 hours, started on 1 pm. It was a very risky
operation, because the tumor was wrapped around a major abdominal
artery. Before the surgery doctors were worried about the possibility
of fatal bleeding. Fortunately, everything went well. After the
surgery Boris was transferred to the intensive care unit, and on
September 22, 2005 he was moved into a regular hospital room on the
7th floor of the Blokhin's Russian Oncological Research center.
Boris doesn't feel very well now because of the pain and some nausea.
Doctors still do not allow him to eat solid food, only juices are
allowed. He had high fever after surgery that was fortunately quickly
reduced. Because of the low hemoglobin he also needed a blood
transfusion.
Updated as of October 8, 2005.
Boris is still recovering from his surgery. The doctors did an
excellent job, the tumor was completely removed, and the prosthetic artery was
not rejected (the possibility of rejection concerned Boris's doctors the most),
and that's very good news.
However, recently Boris was diagnosed with pneumonia. He is
running a fever of about 38 C (100.5 F), and is being treated with
antibiotics. His doctors insisted that Boris should stay in the
hospital for the entire next week.
Updated as of November 16, 2005.
Boris and his mom returned to Pyatigorsk on October 23.
Boris's mom was able to get all medications necessary for the his first chemo treatement using
the new protocol (Gemzar/Taxol).
Many thanks to all the people who helped to make it possible by donating money for Boris's treatment! Tanya,
Natasha, Alexei from Moscow, Lena from Canada, charity funds Nastenka_fund and AdVita, thank you! Big
thanks to Alla from Pyatigorsk for her kind help!
The first Boris's chemotherapy treatment was due in 3 weeks after the surgery, but started only on November
4th due to low hemoglobin and other complications.
On the second day after chemotherapy (Nov 6th), Boris has been in severe pain in his bones. He had to use very
strong pain killers but even that was not always enough to alleviate the pain. After the next Gemzar infusion on
November 12th Boris also had bone pains. Fortunately, they were better controlled by pain medications then.
In general, Boris doesn't feel very well. His blood tests are not very good, gemoglobin 98 and low
platelets (thrombocytes). He also has fever, leg edema and his surgical incision still didnt' heal
completely (almost 2 months after surgery!). However, despite all the complications and pain, Boris is very
hopeful for a complete recovery.
Right now Boris's mom is trying to get medications necessary for the second month of his chemo treatment. She
was able to get Gemzar medication from State medical insurance for free. But it will be necessary to buy another
chemotherapy medication, Taxol, that is very expensive. Boris's Mom was able to get only 100 mg of Taxol
from State medical insurance. It will be necessary to buy the rest of the medication. Boris needs 260 mg of
Taxol for each chemo treatment.
The cost is $1375 for 160 mg of Taxol (second chemo treatment), and $2225 for 260 mg of the
medication (third chemo treatment).
Boris and his friends are trying to find taxol cheaper, looking for other options.
Boris's doctors plan that he needs to start his second chemo treatment on December 10, 2005, and his third
treatment should start on January 15, 2006.
Please help Boris to obtain the life-saving medication!
Update as of January 19, 2006.
I completed another chemotherapy course on January 17th, and my birthday was on January 16th. With everyone's help,
we were able to collect enough money for these courses.
Now I am facing another problem. I need to go to Moscow for the examinations and I have to pay out of pocket
for many of them. For example, a PET scan we found costs $480.
The roundtrip flight to Moscow costs approximately $500. I will also need an MRT, which can be done for free if I sign
up for it (in person) a month in advance. But because it is not practical for me, I will have to pay for it. I will need to get
images of two areas, which costs 2,500 rubles for each spot. The other tests include ultrasound, computer tomography
of brain, scan and x-ray of the body.
This is a regular set of my exams (except for PET-scan, which is new). Some of them may be free, and some I may have
to pay for, depending on how many people will be in line in front of me. This money is needed only for examinations.
The treatment strategy and its cost will be known only after the test results are available.
Unfortunately, I also need money for my living expenses and for transportation to the medical center (I use the services of
my friend who drives a taxi and carries me around in his hands when necessary).
Boris
Update as of March 17, 2006.
Boris and his mom are sincerely grateful to all the wonderful people who are helping Boris to fight his terrible
illness by paying for his treatment and offering psychological and logistical support.
We are especially grateful to Happy World charitable fund that gave Boris a laptop computer.
In February, Boris went to Moscow for a control examination. We were very worried when MRT scan showed a
new formation, which to our great relief turned out to be a postoperative hematoma (blood clot).
Boris's doctor prescribed him three more chemotherapy courses under the same protocol (Taxol and Gemzar). Unfortunately,
in Pyatigorsk, where Boris now has to receive chemotherapy, even Gemzar cannot be purchased at subsidized price because the
supplier of subsidized drugs to Stavropol region does not have it in the inventory.
Boris's mom used the rest of the donated money to purchase chemotherapy drugs for the first chemotherapy course. However,
she will need to buy more drugs for the second course in a month, and a month after that – for the third course.
It seems obvious to us now that we will have to pay full price for both drugs. Boris estimates that we will need 121,460 rubles to
buy 520 mg of Taxol and 4g of Gemzar (each course requires 260 mg of Taxol and 2 g of Gemzar). This is a difficult situation
for us, because Boris cannot postpone the chemotherapy.
Please help Boris get the medications he needs on time. It is very important that we prevent re-occurrence of his tumor.
Boris's life depends on it.
Update as of December 25, 2006.
We have alarming news about Boris. Unfortunately, Boris's cancer is back. There is a new, large tumor, 11x7 centimeters. Also
lung metastasis 2 cm in diameter was found in his right lung.
Now Boris urgently needs money for another round of his sarcoma treatment. He needs to have his PET scan done very soon
(Positron Emission Tomography). It is a very expensive high-tech test that is not covered by the state insurance. The cost of it
is 17,000-29,000 roubles.
Boris and his mother are in Moscow now. Boris already started a new course of chemotherapy treatment. His oncologist prescribed
him 6 medications which Boris needs to take for 6 months (Endoxan, Vepesid, Celebrex, Roferon, Amoxiclav, Thalidomide). One of
the medications, Thalidomide, is not registered in Russia, so it needs to be ordered abroad. Boris's mom was able to buy him
5 out of 6 medications for 1 month of treatment. Those 5 are expensive, 31,000 roubles (about $1,180) per month.
Plus it's necessary to buy Thalidomide, that cost about 1500 euro for 3 months of treatment.
So we urgently need to find money for all these medications. The total cost of the prescribed medications is about 46,300
roubles ($1757) per month (including thalidomide).
Boris and his mom plan to be in Moscow for at least 1 month, so if you decide to make a donation, the best way is
to wire-transfer money to Boris bank accounts opened in Moscow.
Boris is determined to fight for his life! We all hope that his tumor will respond to the new chemotherapy treatment. Please help
Boris become cancer-free!
By the way, Boris has the livejournal blog where he writes
about himself and his cancer fight.
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