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Old Tue Feb 23, 2010, 07:21 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Lamilu, the fact that your mother has had 2 BMBs and they are talking about ATG makes me think that her marrow is probably hypoplastic (empty). Most MDS patients have hyPERplastic marrow (too full), and those patients don't generally respond to ATG. There is a much smaller category of hyPOplastic MDS patients, which is very similar to AA and often difficult to distinguish from it. The main difference seems to involve having some sort of chromosomal mutation, so that is probably what they are waiting to find out. Cytogenetics testing takes a bit longer than just looking at the cellularity.

The good news is that hypo MDS patients tend to have a better response rate to ATG, so if this is the case, it may be successful regardless of whether she is technically classed as AA or MDS. You do want to get an accurate diagnosis before rushing into anything, but it may not necessarily change the course of treatment or the prognosis. My husband's diagnosis was changed from SAA to hypo MDS after his first course of ATG, and it didn't affect his response to the second round. If anything, it helped explain why he relapsed after the cyclosporine was tapered off, so now we know not to attempt another taper.

Currently there doesn't seem to be any corresponding regimen for the hyperplastic forms of MDS (MDS is not really one disease but a group of related syndromes) that has the same sort of success rate as ATG does for AA. There are medications that can help with some of them, but as far as I know none of them is likely to bring about full remission. Somebody may correct me if I'm wrong about this.

I wouldn't say that your mother will necessarily be "fine" if her ANC drops to zero, but if she observes certain basic precautions she can get through it. I would advise wearing a surgical mask, limiting her exposure to people, particularly if they are sick, eating only foods that can be peeled, scrubbed or cooked, etc. Even if they were to start the ATG right away, her counts are likely to drop before they come up. Many patients go through a period of neutropenia following ATG, and since her white count is already pretty low, you should expect that. Also ATG tends to "eat up" platelets, so she may require even more frequent transfusions for a while than she's getting now. Eventually, though, it should start to turn around.

Best of luck,
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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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