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Old Sat Nov 5, 2011, 05:21 AM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
ATG has been used to treat AA for the past few decades, but its use with certain categories of MDS is still relatively new and somewhat experimental. It sounds like your husband has already been part of that experiment, Sherry. The good part of that is that his team will have undoubtedly learned things from the first treatment that will help them in understanding his particular response pattern. Under the circumstances I'm sure they will be monitoring his cardiac response very closely. You might ask if they think perhaps the serum was delivered too quickly the first time and could be slowed down a bit this time? Or do they think it was unrelated?

I agree with Neil that if your husband had a good response the first time, that bodes well for his achieving a response a second time too. Recent findings are also showing horse ATG to be more effective than rabbit, and the addition of cyclosporine to his regimen should help produce a longer lasting response. My husband has had 2 ATGs too, and has had a much better response the second time, probably because we have prolonged the cyclosporine rather than doing a quick taper like he had the first time.

I am assuming prednisone will be part of your husband's protocol too. I didn't notice any major mood swings or personality changes (apart from general energy level) before and after transfusions, but I sure did see them with the prednisone, so that is something to be aware of. Once we figured out that was what was making him so irritable, it was easier to deal with...... at least somewhat. Different people react differently to it, and fortunately it's only temporary, as it is usually tapered off within a month of treatment.

How soon he'll be able to return to work remains to be seen. My husband had a much harder time bouncing back the first time around because they had him on a higher dosage of both cyclosporine and prednisone, both of which can have unpleasant side effects at the higher levels. The cyclo was making him feel tired and muddle-headed, giving him tremors and making his voice weak and hoarse. By the second time around we had already tinkered with his meds enough to know how much he could tolerate, so he was able to step right back into his usual routine as soon as he came home (we have a farm and do physical work outdoors too). Finding the right levels makes a big difference!

Good luck to you both, and I agree it helps a lot to talk to others who have been there too.
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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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