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Old Sun Aug 26, 2012, 12:28 AM
amandana amandana is offline
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Join Date: Nov 2011
Location: Brooklyn, New York, Ontario Canada
Posts: 7
I can't and no one can advice you of which treatment you should take that is a personal decision that you have to make, because everyone is different and no one AA patient is the same.

I was diagnosed with SAA in February of 2011 after 2 year battle with Iron Deficiency. Before diagnosis I became transfusion dependent on iron, platlate and white count were low for about three months they fluctuated and dropped I kept going in for transfusions.

Before diagnosis I got very sick, I was weak, and also fighting the flu at the same time I eventually went in to my doctor for a checkup I got send for complete blood work as well as a marrow biopsy to check my cellulite and to rule out leukemia or other blood disorders which my symptoms pointed too. The next day my doctor called and he said I had to go in and start treatment as soon as possible and was diagnosed with AA.

I received ATG treatment, the hematologist that I had which was in New York at the time of diagnosis. He gave us the options of both ATG and Cytoxan being a new promising treatment he explained that I should look into both which my husband and I looked into getting a consult with Dr Brodsky which I was very lucky to have had the chance to see him and he explained the protocol and giving my history of iron anemia and some previous health history with heart problems and my dependency on transfusions he felt that I would be a good candidate for the treatment and because of my age.

With Cytoxan treatment it’s similar to a BMT without the actual transplant he explained that the possibility of a cure is because the body is confused and attacks your bone marrow so they say with the cytoxan treatment it’s like a computer and it jump starts the system and reboots it like a computer to re build the new marrow and grow cells so it eradicates the lymphocytes data I guess you can say to attack our cells it erases that memory so it stops attacking the marrow. Dr Brodsky is very knowledgeable and being his the lead of the treatment he would be your best information source.

As for the GVHD issues, Cytoxan comes with its own complications because it is a very high dose its virtually toxic to our system but at the same time does the job that could potentially lead to a “cure” and full remission rather than continued ATG treatments with no possibility of a remission. I read some studies on it and in the initial trials they have showed that Cytoxan treatment that the prognosis within I think 1 year after treatment is much higher then continued ATG treatment with a full remission within I think 5 years after treatment where ATG was very low. Keeping in mind that prognosis is also based on age and time of treatment of a patient with AA from time of diagnosis. Dr Brodsky had explained that someone younger would have a much higher chance of remission from Cytoxan treatment then someone who’s older because they can recover faster.

My decision to take cytoxan treatment was personally best for my situation and prior health issues, as well as my age being a big factor as I was 25 at the time of diagnosis. But as I said the Cytoxan comes with it’s own complications, It made me very sick which is expected since they eradicate all of your marrow and cells, so you build new, I received growth factors and transfusions to start rebuilding cells but did not see any growth until about a month after treatment.

I also developed severe pneumonia infection which they had to eventually put me into a coma because I couldn’t breathe on my own and developed sepsis which turned to acute respiratory distress syndrome. I was in the hospital for six months total and four of those in an induced coma. I had neutorpenia for 9 months after treatment was diagnosed with severe neutropenia my ANC was below 500 at the time that I developed pneumonia. My cellulity was less than 25% at diagnosis which now last I checked was at 75% which it has now been 17 months since treatment. Among those complications I got diagnosed with Type 1 diabetes in July of 2011 which is my current new lifetime battle along with my recovery from AA.

I really hope this helps you in your decision remember that either treatment is your best bet for a recovery in the long run just keep positive and think about what is best for you. I am here anytime if you need be.
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