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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
@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.
Replies to "@nohrt4me Again, no one here seems to have understood what I've written. I never said anything..."
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@garyr443 Ahem, if you read carefully, you'll see that my comment was directed at newly diagnosed folks, not you.
Believe me, I am sorry as I can be that the HU is causing a drop in your red cells. My tests are trending in that direction as well. Anagrelide, Besremi, and Jakafi are proven alternatives to HU, and I would be inclined to try one of those before cranberry juice.
You have said and are correct that HU is not a cure, has side effects some cannot tolerate, and that it loses its effectiveness for some people. I also understand that you are experimenting with your doctor's knowledge, that you are not claiming cranberry juice will be a cure, or that it will work at all.
You also say that you have achieved benefits from your paleo diet, which leads you to theorize that diet could help your platelets.
I think you are getting pushback, not because some of us aren't careful readers, but because most people don't come to a support group sponsored by a bastion of conventional medical treatment (i.e., the Mayo Clinic) to read about unproven alternative treatments. In addition, I think alternative treatments confuse people recently diagnosed who ARE "beginners."
And that's enough from me on this.