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Hi Flyguy (Do you like to fish?) -
I think "how you feel" is a very relative thing, since most people with bone marrow failure always feel tired. For me, I would wait until my HGB was below 7.5, and I felt really shakey. For platelets, my center looks for signs of bleeding. So, I would hold out until under 12. Once you get on the transfusion bandwagon, things can go downhill fast. So try to avoid it as long as you can!
It seems like us "older" people with AA (i.e. those of us older than 40), require longer immune suppressant therapy to achieve a response and sustain it. Possibly because cell division slows down as you age???
I kind of look at IST as analogous to Bush's war on terror: ATG is the "shock and awe" phase, while continued Cyclosporine/Prograf is keeping down the insurgents while the marrow tries to heal itself. If you stop this phase too quickly, the insurgents take over again and you are right back where you started. The question is...when do you remove the troops?
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55 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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