Is anyone involved in clinical trials for ET, specifically for CALR?

@janemc Sure, leukemia may be in my future, as well. But, again, there is certainly more than one way to suppress platelet over-production and it's been found that daily use of unsweetened cranberry juice is effective in doing so. I will know for sure on July 3rd. If it turns out to do the same thing Hydroxyurea does (except for destroying my red blood cells) that will be what I prefer. You can do whatever you want to, and good luck with that, sincerely. But, if the cranberry juice does do the same thing, i.e, suppress platelet count, then it can be used to stave off leukemia, also. In fact, another of cranberry's other many benefits is protecting against cancer.

@drbart86 I see. Yep, I have no UTI problems. Well, when you say "cytoreductive products" are you talking about other drugs, or are you including cranberry products? Again, my only intent is to reduce platelet count without the use of drugs. I'm not expecting the cranberry juice to prevent progression of ET to leukemia, although that would be great if it can. For now, I'll settle for normal platelet count and normal red cell count, as well.

@garyr443 nope just meds. Fro 15 years and lots of cranberry, overlapping with ET for 8. Regardless platelets kept going up. Started wit 500 mg HU 3X/week eventually up 2000 mg/d then had reaction after about 3 years, then on Jakafi at increasing dosage - constantly elevated plt. But seen where some are on HU low dose for many years with no side effects (plus cost is really low). So each of us have a different journey. Best wishes on yours

@drbart86 My hematologist has told me I'm one of his more unusual patients. I've been on HU 500mg once daily for two days, followed by one day at two doses, then back to one. So, 1, 1, 2, 1, 1, 2, etc. seems to work for me most of the time, unless I make a dietary change or change my supplements. I added CoQ10 and that drove my platelets up. Same happened when I ate pink salmon, tuna and cheddar cheese for a month or two. As soon as I went back to what I was eating before, my platelets came back down. Sticking with my paleo diet, though, there are no surprises. I won't know for sure until I'm tested on July 3rd, but I expect my platelets to stay normal with nothing but my paleo diet and the cranberry juice. We'll see. So, yes, everyone seems to have a different experience.

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.

@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.

@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.

@drbart86 Got home from 2nd dose. Was higher and my body really reacted as well. I kept wondering how nobody else saw the trucks coming through 🥹. But other than the fatigue nothing else to bad. Final titration dose next week, then hopefully go on to maintenance doses on a 3 weeks schedule - without the hospital stay.
From my perspective, the antibody treatments to CALR look to be a huge step forward. Of the two I am aware of (different modes of action) these may be game changers for us.
I remain really thankful to the medical professionals, drug companies, and all the caregivers that support patients and to improve our quality of life. And I hope the best to all those on this journey.

Ì have been taking hydroxurea and ĥave had severe reactions: severe vomiting and what my hematologist calls "not common" side effects. Have tried Anagrelude but the side effects were worse. Has anyone tried the Besremi or Jakifi previously mentioned?

@drbart86 We live near an interstate that is under construction right now. There are continual lines of Mack Trucks…which had me thinking about your remark yesterday! Haha only I can see them coming and they have no impact on me. You, you’re right in the on-coming fast-lane! 😅
But you’re standing there, donned in your superhero cape in defiance as you tackle the pits and perils of this Clinical Trial.
Joking aside, thank you again for your participation in this important trial. It’s people like you, along with the medical professionals and drug companies, who are shaping the future of cancer care and survival!

Your updates are always so appreciated! Keep dodging those ‘trucks’. LOL. Have a great holiday weekend ahead! Hugs.