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Anyone have or heard of MDS with 5q-syndrome?

Blood Cancers & Disorders | Last Active: Jun 18 10:35am | Replies (18)

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@janetlen

I have mixed feelings as well. When my hemoglobin dropped to 8.7, I felt awful. My oncologist set my transfusion point at 8 since I was symptomatic. I started Revlamid at the same time and it's working. The goal is to avoid transfusion dependence but I know at some point I will be there. I would have welcomed a transfusion at 8.7.

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Replies to "I have mixed feelings as well. When my hemoglobin dropped to 8.7, I felt awful. My..."

I also have MDS del 5q Currently my haemoglobin is sitting around 90. When I need transfusions I'm told I'll be started on Revlimid. Can I ask how you feel on this drug and what the side effects have been? I'm always fatigued, but still working. I wonder whether I'll be able to continue.