Thread: Aranesp
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Old Tue Jul 10, 2007, 02:30 AM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Zoe, I have seen all the recent reports of the dangers of EPO use, and even though the results they cited were for patients with head and neck tumors and not for MDS or AA, I have been concerned enough about it that we've been cutting the dose back to see how little he can get by with. We've discussed this with his doctor and he doesn't think it's any cause for concern unless you try to push the Hgb to higher than normal levels, which we certainly have no intention of doing. I'm not sure I agree with him 100%, and so have adjusted our target downward just a bit, but I don't want it to get too low if we can help it because our work is very physically demanding.

Actually, we just got his latest reading and it's back up to 12.6 even after skipping a week, so he may not need the EPO as much as he used to. If he can maintain between 11.5 and 12.5 we'll just keep decreasing it until we see a difference. I don't know if it's rare to reach those levels with MDS, but his illness is really closer to AA. The only thing that makes it MDS is that he has a trisomy 8 mutation. He has responded enough to ATG/cyclo that his Plts and WBCs have been maintaining at a liveable level (last count 59 and 2.7, respectively), so that is probably helping his RBCs too.

His doctor also said he had a patient who had been on EPO for 10 years with no problems, and I know iron-deficiency anemia patients that have been on it a long time 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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