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Ann Jones
ParticipantWhere do you live? Didn’t know Luspatercept was available ? Congratulations. I’ve understood it’s a lifesaver.
ParticipantI’m starting on Revlimid after becoming transfusion dependent in December. 2 units every 3-4 weeks.
Vidaza almost killed me, truly. I went into heart failure and pulmonary edema with resulting intubation. 2 weeks in ICU.
Was told by my physician at Mayo that it was rare and would likely resolve. It did but still on cardiac meds due to some resulting heart damage.
Fingers crossed with Revlimid though I do not have 5q deletion. I’m hopeful.
Holding on for Luspatercept!!ParticipantMy counts are typically between 8-9 with aranacep 500mg every 2 weeks. Trying to plan a trip where elevation will be about 6000.
Wondering about increased symptoms of anemia and safety.
Would appreciate any suggestions or experiences.ParticipantI’m MDS/MPN RARS and am currently being given Procrit injections every 2 weeks. My hemoglobin is 8 or lower and my platelets are 1075.
I’m fatigued much of the time and my oncologist is hoping that my H&H will be better next week but hasn’t told me plan if not. My hemoglobin has continued to drop even with procrit.
I was told that one of the marrow problems would become the primary and I was hopeful that it would be the MPN as I believe it’s easier to treat and carries fewer symptoms.
Not sure if any of this is relatable. I was diagnosed in 11/17 and was a wait and see. Not sure if that’s still the case.ParticipantThanks for replying everyone. My Center of Excellence is the University of Chicago and I have appointment August 3rd. It will be good to be with an expert who can address my concerns. I know my oncologist in my small town has little knowledge/experience with this mind boggling disease.
How often do BMB need to be done and what is criteria for doing another?
I believe Procrit is no longer effective and I’m wondering what’s next.
I’m scared about possibility of stem cell or bone marrow transplantation be suggested. They seem to be brutal from what I read. Guess nothing with this is easy and I’m just in the beginning.
Means so much to have a community of fellow travelers to ask questions of and receive support. -
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