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Getting nowhere with current Hematologist

Blood Cancers & Disorders | Last Active: Jun 18 4:34pm | Replies (57)

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Profile picture for nohrt4me (Jean) @nohrt4me

Resveratrol, a substance manufactured from grapes, showed some effectiveness at reducing platelets, but research seems to have fizzled as interferon-based meds and JAK inhibitors like Jakafi were developed.

However, doctors don't prescribe HU alternatives often in the US because they are beyond the means of many patients. In 20 years, when the patents run out, they will be more affordable.

If you have ET and your platelets start showing a tendency to drop on their own (and especially if other counts are off) over the course of several months, that may be a sign of disease progression. Disease progression can make you feel crappy. So it's important to continue monitoring if you've decided to go off HU.

I sure wish that dark chocolate, red wine, watching "Fargo," knitting mittens, and reading PG Wodehouse would cure my ET! Sadly, there are no lifestyle "solutions" to a disease caused by a genetic mutation, though some of those things improve quality of life.

A heart-healthy diet and moderate exercise may reduce overall stroke risk. Avoiding food associated with inflammation may also help with symptoms. Still in the study phase last I heard.

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Replies to "Resveratrol, a substance manufactured from grapes, showed some effectiveness at reducing platelets, but research seems to..."

Such nice comment about progression, you don't know my labs. I am under the care of a very good oncologist and he knows what I went through with HU and I think he knows what HE is talking about when he said he is researching a med not in the chemo class for possibly down the way. I am on a baby aspirin and the dietary changes I made and I am happy for now with my platelets staying stable and will continue to do as I am as long as it lasts. You seem very angry with your comments or by what is going on with your treatment and had to try and rain on me. I am constantly on line checking on ET and know what I am reading. I was in the medical field working in the lab for years. I know this could end or not with my platelets staying stable but for now I am happy and enjoying it.