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DiscussionIs Essential Thrombocythemia a blood disease or cancer?
Blood Cancers & Disorders | Last Active: May 6 8:01am | Replies (179)Comment receiving replies
Replies to "@nohrt4me Hi! I hope you had a great Christmas. I was wondering if you take supplements..."
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@dragonflylynda I keep masks in my purse in case I encounter a crowd. I avoid theaters and restaurants at peak times. I have trouble with fatigue, so avoidance is not really putting a crimp in my social life.
I take a daily vitamin formulated for senior women. I get flu and covid shots. I have had the shingles shot.
I am 71 and was diagnosed 11 years ago and have seen supplement claims come and go--turmeric, CBD oil, etc.
I did try CBD oil for sleep with my doc's input after people were talking it up. Doc said that she doubted anything 5% or less THC content would help. I found a reputable processing company with her help that required quality control testing. All I got after a month was heartburn. I was out $40. None of that brought restful sleep.
I started exercise/rosary routine which helped more. (I am a lapsed Catholic, fwiw. I don't push religion, but the repetive prayers have a calming and focusing effect.)
When I reported my findings abt CBD to another support group, holistic practitioners chimed in and said I didn't get the right product, didn't take it properly, was probably on the wrong diet, hadn't taken it long enough, etc etc. Their fallback always seems to be to blame the patient when treatment doesn't work. They were all willing to get me straightened out. For a fee. That insurance does not cover.
So long story short: My faith in the alternative medicine racket is even less than my faith in Big Pharma. At least the FDA collects data on approved drugs, and you can file adverse reaction reports if you have problems.
If you are nervous about hydroxyurea, you could ask your doc about anagrelide or besremi. Neither of those are "chemo" drugs, and they do have a proven track record lowering platelets.
These are only my experiences and opinions, of course. I know it's all confusing at first. ET is not my major complaint in the host of ailments I have. It just complicates all of them.
Best to you!