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New Medical Info
FYI - Interesting information in the recent newsletter from the AA MDS International Foundation. Specifically, check out the page 5 of the newsletter, regarding latest medical findings:
http://www.aamds.org/aplastic/files/...Spring2010.pdf Article reinforces the importance of very slow tapering of Cyclosporine, which lowers risk of relapse in ATG responders. Unfortunately, seems like fast tapers occur too often when patients are treated with Hemotologists without sufficient AA experience.
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Paul Son diagnosed 3/2006 with VSAA at age of 4 years old; No sibling match; received IST with CsA, counts reached normal level after about 6 months; Currently in remission. |
#2
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Thanks for that link, Paul. Here is the quote from the article about the cyclosporine (CsA) taper:
"Relapse occurs in up to 30% to 35% of patients when CsA is withdrawn at six months. A more prolonged course of CsA with a later slow tapering of the drug reduces the relapse risk to around 13% to 16%. About a third of patients are CsA-dependent and require a small dose long term." I'm having a bit of a hard time interpreting what they're saying, though. The first two sentences seem clear enough, but when they say that about a third of patients remain CsA-dependent long term, doesn't that mean that they would relapse no matter how long or slow the taper was? That number seems right in line with the 30-35% they cite initially as relapsing with a faster taper, so how does that get reduced to 13-16%?
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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 |
#3
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Lisa,
You raise an interesting point. It's a bit vague. Unfortunately, the abstracts are so concise that ambiguities arise. I haven't seen the full article as the medical journals charge for full access. I'm speculating that perhaps, for some patients, long term CsA dependency could be avoided with a slow taper following ATG. For example, if after ATG, the taper occurs too rapidly, the immune system is not gradually adjusted and consequently it causes a long term setback thus requiring much longer CsA maintenance? Also, it's not clear from the summary if the 30 to 35% who relapse see declines in counts contemporaneously with the quick taper or if this is long term relapse rate. I think it's probably long term rates given corroborating figures I've seen over the years. Also, without the full article we don't know how "long term CsA dependant" is defined in regard to duration. Maybe its more than 3 years, 5 years etc. Some people are on low doses for years and then go off CsA and stay in remission.
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Paul Son diagnosed 3/2006 with VSAA at age of 4 years old; No sibling match; received IST with CsA, counts reached normal level after about 6 months; Currently in remission. |
#4
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Check it out
The AA&MDSIF has published an interesting patient summary of the latest research in AA, MDS and PNH from the Scientific Symposium on Bone Marrow Failure 2010.
http://www.aamds.org/aplastic/files/...entSummary.pdf
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent |
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