Thread: AA Relapse?
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Old Wed May 5, 2010, 08:50 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
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Hi Paula. First, I want you to take a deep breath. I know that feeling of panic that he could be relapsing, but you don't know that yet. We have a saying in English: "don't borrow trouble", meaning don't assume the worst until you know all the facts.

Looking at Jorge's counts, it's only the platelets that have gone down, and they are still in a safe range. His Hgb is still good, and WBC is even improved. If they were all down I would be more concerned, but it's important to keep watching it. If the next test shows the Plts have gone down even more, or if the other counts have dropped too, then resuming the cyclosporine sounds like a good idea.

His doctor is right in saying that some people remain dependant on cyclosporine (CSA) after ATG. My husband Ken is apparently one of them. He has been on it for about 5 years now. I thought he was a unique case because of his trisomy 8, until I read this article by Dr. Judith Marsh (probably the leading AA specialist in the UK): http://asheducationbook.hematologyli...full/2006/1/78
If you scroll down to where it says "5. Immunosuppressive Therapy (IST)", in the second paragraph it says: "Risk of relapse is 30–40% but appears to be less with the more recent practice of prolonging CSA beyond 6 months. CSA dependency is observed in 26–62% of patients, necessitating long-term maintenance of the drug."

62% is a lot! How come we never hear about that? Even 26% is a lot. I think they are only recently discovering this, but it is something we all should keep in mind. Also the part about 30-40% risk of relapse. I hope the doctor didn't give you the impression that he would be cured, because ATG is not a cure. It's just a way to (hopefully) put yourself back into either full or partial remission. Remission doesn't mean the disease is gone, it's just dormant. It may or may not resurface, and you have to be aware of this.

If it does resurface, then there are several options. BMT is one of them, but if he doesn't have a sibling donor, then repeating the ATG is the usual course. My husband has had two ATGs so far, and if he ever relapses again we would go for a third one before even thinking about a transplant, even though he has a sibling match. It's just a much easier procedure, and the recovery time is so much less. Only if ATG stopped working would we start looking at a transplant. Of course I don't like the idea that he may have to keep repeating this, but all things considered, life has been good since the last one. He has to drink lots of water because of the cyclo, but that seems like a small price to pay as long as he keeps feeling well.

I don't know how many ATGs a person can have, but I've heard of several people who have repeated them successfully. Have you read Andrea Pecor's story? http://www.marrowforums.org/profiles/Andrea_Pecor.html At last count she has had 5 ATGs. Our doctor told us of another case of someone who had had 4 or 5 of them too. In each case, the procedure gave the patients several years of normal life before having to repeat it.

It makes sense to try simply resuming the cyclo first. For some people that is enough to turn things around, but for Ken it didn't work. His case was different, though. His counts never did fully recover following the first ATG, and his doctor put him on a very fast taper, which in my opinion was a mistake. Once we saw his counts starting to drop they plummeted very quickly and he was transfusion-dependent again. Resuming cyclo just wasn't enough in the face of all that, but if Jorge's counts are dropping more slowly, it might work. I say IF, since they may just be fluctuating. Better to wait and see, but in the meantime, it's good to know what your options are just in case.

Take care,
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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