Thread: LOW White Count
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Old Sun Jul 10, 2011, 09:36 AM
cheri cheri is offline
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Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
Clinical trial info

Hi
Yesterday I met with Dr about clinical trial....
This type of drug is supposed to convert aml cells into non aml cells, and it doesn't work like chemo.

The only feedback they have is with the original 20 patients--a couple showed some improvement.....not only did he not try to sell me on it, he could offer no assurances of any kind...
When I asked why there were no others in the study , Dr replied: You were the first one who asked! Hmmm.....Then he went onto say that due to a lot of legal/paperwork mumbo jumbo, they are just being able to start to offer it, and haven't really solicited for it.......
Which once again, makes me "numero Uno" and subject to going through the process, on EVERY level, as a guniea pig....wondering how the insurance company will handle it; testing and such...

I really have no other choice, except to check out the Estybon course....but not even sure this is right. I wish I had that Wahoo! feeling, but I don't...
For the past few days, I have been battling a low grade fever and not feeling my sparkly self...reduced appetite, super tired......
Any feedback? thanks......
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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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