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#1
Sat Nov 5, 2011, 09:03 AM
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Ferratin level 6695!
Yikes!
 I just got tested after taking a break from Exjade for a month due to GI issues. My fever seemed to create the need for more blood than usual. Hopefully, that is resolved for now....I am hoping Exjade works again...fast!
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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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#2
Sat Nov 5, 2011, 02:51 PM
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Ferritin
Hi Cheri,
Too bad with the high ferritin level! Remember that infections lead to increased ferritin and you have had pneumonia. I think that if the ferritin level has increased suddenly it can decrease fast when it is treated. When my bone marrow suddenly "got tired" during late spring and I had to get txs every week my ferritin level increased to 5600 though I was treated with Desferal in connection with txs and a low dose of Exjade (due to low WBCs). Then I started to take Thalidomide and didn't need txs. After 6 months my ferritin was 1400 and now it is about 1000. Kind regards Birgitta-A
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#3
Sat Nov 5, 2011, 08:26 PM
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Hi Birgitta
Thanks for that! You are a wealth of information...nobody told me about the infection/ferratin connection.....it did come up awfully fast.... It is amazing what affects your counts....I have spent so much time worrying about things that if someone told me what cause/effects were, it would be less distressing! Like for example, that certain meds/infections can affect bone marrow biopsies. Sometimes I feel that, and I guess rightly so, that Doctors only tell you what you need to know today. But I like to know the bigger picture... Additionally I am now on 960 of Neupogen to get my white count up....for the last week. Here's hoping that the reduction of fever makes that hold a little steadier. What is the longest/largest dose recommended? I was thinking it may be time for Neulasta....they say that it affects blasts, but what is the difference?
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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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#4
Sun Nov 6, 2011, 04:49 AM
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Neupogen/Neulasta
Hi Cheri,
Thank you for the kind words  ! I have not read anything about the longest or largest dose of Neupogen recommended - I think you should take as much as you need to make your neutrophils high enough. If they are 1.5 you should be safe. Many members of this forum manage well with vey low neutrophils. The difference between Neupogen and Neulasta is that Neulasta is a long-acting version of Neupogen. This means that you don't have to take Neulasta so often but it is more difficult to monitor. As far as I understand none of these drugs increase blast cells. Kind regards Birgitta-A
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