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[AlanM]

I am a 60 yr old male with no other medical conditions or history. I was diagnosed with MDS (refractory type anemia) 18 months ago. Whilst my hb count has recently reduced from a consistent reading of 10.3 since being diagnosed to 9.3 over the last six weeks, this coincides with my taking Eprex (epoetin Alfa) starting @ 10000 dose for four weeks, then 20000 dose for a further three weeks and now 30000 for the last week. Does anybody else have experience of this drug (injected weekly) and is it possible that the drug may have caused the reduction in hb numbers?
As a matter of interest whist I have had very limited breathlessness, the recent reduction in hb count has not made it worse!
I really would appreciate views and comments from you.

[Mary4Mike]

Alan,
I have never heard it mentioned here that Eprex (Procrit) lowered someones HGB. That is not to say that it couldn’t. Mostly there is either a positive or negative response. Ones body will accustom to the lower HGB and you just sort of get used to living with the symptoms. Have you had fuzzy thinking, weak heavy feeling legs? Perhaps your physician will consider trying transfusion if your HGB continues to drop. Let us know how things unfold for you.
Mary

[AlanM]

Thanks Mary – really appreciate your response. Don’t feel heavy legs etc . Albeit I do feel if I could sleep a lot more. I seem to have memory lapses where I forget words and names though. Also my consultant seems to be edging towards transfusion, but not sure I want to start so early on in the condition?????
Any further responses would be greatly appreciated, are you aware of hgb levels increasing given my circumstances?
Thanks loads
Alan

[Mary4Mike]

Do you mean spontaneous rise in Hgb? If so, no I haven’t. I can understand hesitating to begin transfusions. Have they offered any line of treatment other than Eprex ie Revlimid, Vidaza, Dacogen? What about being checked for a transplant match? You will most likely, eventually, be transfused. Whether you begin a chemical treatment or just wait it out, it is probably inevitable. If you are managing right now with the way you feel, your physician or consultant may hold off until you symtomatically need it.

[AlanM]

Thanks once again for your response, as far as transplant is concerned its not even on the agenda, not sure if that’s because the risks are considered too high?… Or other reasons, not sure either if here is a difference in the drugs administered in the USA vs UK. In your experience is transfusion a long term management solution?
Regards
Alan

[Mary4Mike]

That is a good description of transfusion treatment. Unless you try a chemical treatment and it gives you a response ie stimulates your bone marrow so that you can discontinue transfusion for a time, but I haven’t read many testimonies where it has kept people off transfusion indefinitely. I am sure that you have done research and found that the only cure is transplant. You are still young enough (USA standards) to have a transplant if you are otherwise healthy. I don’t know if you read my signature, but my husband had a transplant at 64 years old and it has been a total success. He did 140 units of PRBC during the 10 years leading up to the decision to transplant. He also did all the available chemical treatments.
We had a doctor tell us years ago that he could keep Mike alive a long time with transfusions. Eventually, he didn’t get a "good quality of life" response from them and opted for transplant. Everyone’s journey with this disease and reponse is so indivdual. There is no one set protocol that works for all…how wonderful that would be. They are having more and more success with the mini stemcell transplants. The induction regimen is not as brutal (low ablative). My husband had this and also had no radiation. He sailed through it better than when he did some of the chemos for the disease. Again, everyone is different. From what I am reading here and on the Marrow Forum, it sounds like they are using transplant sooner rather than later in treating this.
There is much to consider. All the best, and keep asking questions.
Mary

[AlanM]

Hi – Mary your detailed response and the time you have given is fantastic for me. I believe my discussions with my consultant must now include reference to transplant, particularly as my health is otherwise excellent, ie. no other illnesses or issues.
Thanks Mary for giving so generously.

Best Regards
Alan

[Mary4Mike]

Alan,
You are very welcome…..any time.

God Bless,
Mary

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