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Old Sun Aug 14, 2011, 12:48 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 768
Hi marmab,

If I were you, I wouldn't fool around with the EPO shots at this point for two reasons:
1. While effective for some bone marrow failure patients (usually with EPO's under 100), it can cause death in people with tumors. You probably don't have a tumor, but it's a risk.
2. It is my understanding that EPO shots don't work forever, and if you do have MDS or AA, you might want to have this in your bag of tricks for when you really need it.

That said, I am also an avid runner, cyclist, x-c skiier and former mountaineer So I understand your need to keep moving! It was the only thing that kept me sane through my illness. However, anemia is hard on the heart. So you should always wear a heart rate monitor and stay out of your max zone! You will be surprised by how easily you are in it, if your HGB trends down. Also, as you probably already know, biking outside is forbidden becauses you may not survive a crash with low platelets. What worked for me while my counts were down was slow jogging or walking and stationary biking. It is much less taxing on your heart and you can stop and not be miles from home

Take care!
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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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