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Re: long term success

From: Mechelle 36 SAA

Date: 12/2/2003

Time: 10:08:01 AM

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Hi Sue,
I waited for a response for a year before having my second round of ATG. I believe a year was too long, but I held out hoping that it would work and I wouldn’t have to go through ATG again. While I waited I was transfusion dependant on platelets every 7 days and Hgb every 21, it was almost like clockwork! My counts sat very low that year, platelets were transfused everytime I dipped below 20, and Hgb everytime I went below 80. My ACN count sat at about 0.5 – 0.9 for 14 months. Here in Canada Neupogen is not part of the therapy, so I did not receive it. I tried to limit my exposure to people who were ill, public places, watched the food I ate, etc. It was really hard as I had 2 little boys (ages 3 & 6) who were in school and bringing home everything from the flu to the chickenpox.
The drugs (Cyclo, ATG) dont keep you from getting sick while your immune system is low, the only drug that will help is Neupogen, it will increase your WBC and ANC, it is an injection and very expensive. ATG and Cyclo supress you T-Cells which are the ones responsible for the attack on the stem cells in the marrow. Most people are just very careful of exposure, germs and the public until they see a rise in their ANC. I have never heard of Neutrophen, what is it used for?
It is very hard watching and waiting for the bloodcounts to come up. I remember the anxiety everytime I went for a blood test. It was extremely depressing when the dropped, I always told myself they would be better next time. After my second ATG, my counts took 2 months to stabilize and sat just above transfusion level for about 3 months. Then they slowly (very slowly) started to inch up. Bloodcounts fluctuate alot so you, cant get to excited if your up or down a couple of points (easier said than done!). It has now been 5 years since my last ATG, my counts are low normal and still continue to inch up. Sometimes it seems like the whole ATG/transfusion/hospital/bloodcounts thing was a dream, that it happened to someone else and I was watching on the sidelines. My life is very active, yes I still take Cyclo. but it’s a small price for me to pay.

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