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Old Fri Jun 17, 2011, 09:18 AM
cheri cheri is offline
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Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
Question Exjade--my "findings" to date...

Hello All
After being on Exjade for the last 3 months, ferratin level went from 1885 to 1305. That approx 200 units (?) per month....That is the good news...

Recently, my white count has been 1.2, and my platelets really low, yesterday at 13K, so I'll will be transfused today...Hemoglobin seems to decline at a steady pace, so a PRBC transfusion has been needed every two weeks; platelets weekly. I have not been able to resume Vidaza this month, with counts this low. Dr wants to do another BMB on Wednesday 6/22 to see if AML has returned--hopefully not....

I wonder if the cause is Exjade, which comes with the warning of not to take if your platelets are under 50,000, but my Doc says no! It's not that! He has several patients on it....but again, I am alway the atypical one, it seems.
Also, the WBC---could this be the culprit?
(Birgitta, I seem to recall you saying that it affected your WBC..)
Question: Should I lower the dose? Will it still work effectively?

I am planning to now incorporate wheatgrass tablets, as well as black tea, and some dairy products to see if that will have any positive effects on my iron moving forward. This month will be an experiment for me and I will let you all know if making these changes works. I would expect to remain on 1500 Exjade for the next month, but pending an "MDS only" BMB result, would think of reducing the Exjade if I see promise with these other natural remedies.
It seems that I am one one vicious merry go round of "symptoms caused by treatments requiring treatments for symptoms"
Welcome to MDS! This disease makes my head hurt!
__________________
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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