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Is anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (86)Comment receiving replies
I don't want to play pile-on-@garyr443 because he's clearly dug in on his experiment.
So here is
A NOTE TO THE NEWLY DIAGNOSED AND FREAKED OUT WHO WANT TO AVOID THE SCARY CHEMO PILL:
I have seen fad treatments for ET come and go in my 18 years with ET. All I can find that might lead anybody to try cranberry juice are articles like this one from the NIH that link thrombocytoPENIA (low platelets) episodes to various foods including cranberry juice. https://pmc.ncbi.nlm.nih.gov/articles/PMC4357488/
I would not assume that whatever is in cranberry juice that triggers thrombocytopenia in some folks is going to have a similar effect for people with ET.
Neither can I find any info from credible sources that indicates that cranberry juice helps reduce incidence of blood clots, which is the biggest danger you face as an ET patient.
As a cancer patient, the biggest danger (or at least irritation) you face over time is "advice" from people who think they know more than your doctor. But, sadly, you'll find that out as you travel the road of life.
If you are thinking of any "natural" treatment for your ET, please share it with your doctor and explain why you think it will work (as garyr443 is doing), and discuss how it might affect your situation.
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@nohrt4me Again, no one here seems to have understood what I've written. I never said anything at all about curing my ET or the CALR Exon 9 mutation that causes it. My only complaint is that the Hydroxurea, which has only been sporadically effective in controlling my platelet count, has the unfortunate side effect of destroying some of my red blood cells, thus creating anemia. It is this side effect I am trying to end and the only way to end it is to stop using Hydroxyurea. If I can control my platelet count with food (in this case, cranberry juice) then why not do so? A natural solution is always preferable to a drug with side effects. Again, I am NOT attempting to cure my ET or the underlying CALR Exon 9 mutation that causes it. This will never go away and will always exist until I die. But, let me make this perfectly clear: the Hydroxyurea is just a drug. It is NOT a cure for anything. No one has ever been cured of ET by taking Hydroxyurea.
One more thing: I am NOT a "beginner." I have been treated with Hydroxyurea for 12 years. Some of you don't read very carefully.