[Jimmy Greenhut]

Ann,still doing Procrit once a week now 40k units. I’m sorry Luspatercept isn’t yet :(. The FDA has fast tracked it. My Hemo says maybe early 2020. I’m in Fl. My hemoglobin is 9 for the last month. Was bi-weekly now every week. It was to late for me to enroll for the study, as I was already on Procrit. I apologize that I didn’t make that more clear.

[Jimmy Greenhut]

Haydee, I also have MDS/MPN RS T. I posted several months ago and no one replied. It’s a rare branch of MDS. My Hemo/Onc said the same. I’m 60, with iron overload too. I told him quality of life. My wife can’t understand why I have to rest for an hr or 2 a day. My hemoglobin was @ 10.8 last Dec 2018. And has been going down since. When it got to 9.6 the hemo started me out on 40k units of Procrit. I go every 2wks for blood work. If I’m 10 no shot. I’ve been on it for 3 months now. Took awhile for the levels to get to 10. Nothing above. 4 weeks ago I was 9.7 and need a shot. 2 weeks ago I slipped to 9. It might no be working for me?? This Tue I see him with current blood work in hand. the lowest was 8.9 for me and that was 4 weeks after I started Procrit. No side effects. My Hemo said the FDA was fast tracking a drug named Luspatercept which he said maybe early 2020 it will come to market? Aranesp might be the next option if my level doesn’t rise.Fingers crossed. You have to be your spokesman. Your living with this not the Dr’s… I was given 8yr survival As you know its only 30% odds to transform to leukemia. Please feel free to call me. 239-247-2982. I’m in Florida. And stay positive.:) Best Jimmy

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