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Hold on and hang in.....
Hi Laura,
First, take a deep breath...no, really!
I have been following your recent posts about platelets, and can FEEL your frustration and fear about the situation.
Plummeting platelets....I know what a sinking feeling that is, having been there....also, the absolute sense of betrayal by the people you entrusted your very life, to act as if now you are a bother, since they had worked their miracles with you and now have moved on...my hospital doctors("home" for 2 -1/2 months would not even return my phone calls!) For some of us, the ride is a little harder... I live the life of being platelet transfusion dependent and will agree, that it is scary to think about, especially when you see new bruising and such.
Hopefully, your NEW doctors in Boston will have some options for you--you are on your way very soon, and you will be ok until then--the timing is perfect! You will get there just in time to have experts to see what is really going on! Keep getting tested, and if you need a quick platelet transfusion, you will get the bump you need to make your trip. And think about doing something fun while you are in Boston! Yes, waiting is really hard...In the meantime, your friends here at MF are here for you! Take care....
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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