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My father had Mylodysplastic Syndrome (MDS). Is this considered a MPN?He died from leukemia in the end. He was diagnosed 10 months prior.
I and several other people on here have MDS and MPN and JAK2 mutation as well as other mutations. Leukemia is what we’ve been trying to avoid with treatment. Some have less or more of a propensity to… read more
I have been treated for 10 years with mixed results but tolerate as best as I can. Time for different meds?
Only you know best
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more
Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more
Thank you!
The official information is that there is no cure. I could read about the odd case that went into remission, but that seems to be more the exception than the rule. Several of those cases needed bone… read more
Here's another source to consider. It's a 2017 scholarly article that discusses familial cases of MPNs (genetic predisposition. The authors say this: “In our experience, about 7% to 8% of patients… read more
Newly diagnosed with PV.
Most specialists that I've encountered want that initial BM biopsy. I've had 2 over the years. The second was about 10 years after the first. This was probably because I was with a new specialist and… read more
I have continuous ringinging in ear and my doc says it's nothing to do with MPN. But I think it is because of low blood flow in head and neck
What could be the possible reasons of this ringing in… read more
well i found out it is from the my
chemo medication i am taking named Hydroxyurea 500mg. one time daily . my hair started to fall out got most of it cut off. when she was done my hair is now a… read more
Hi Edna,
Tinnitus in ET and PV is considered to be due to too many blood cells (platelets in ET and red blood cells in PV) in the blood vessels
"ET may also cause hearing problems, such as tinnitus… read more
