Essential Thrombocythemia (ET): foods, diet, nutrition?

Posted by azy @azy, May 27, 2023

Hello,
My name is Isabelle, I’m 55 and I was diagnosed a month ago with Essential Thrombocythemia, JAK2 mutation. I’m waiting on my bone marrow aspiration and biopsy. My platelets are between 600-750. Currently, I’m considered intermediate risk and I'm on 1 low dose aspirin a day, my hemo is talking about 2 aspirins in 3 months. Also, we’ve started talking about chemo.

I’ve been reading up on ET, how it roughly « works » (I’m no doctor LOL) and what I can do to mitigate the tiredness and help my body, especially if I decide to go ahead with the chemo. Which brings me to my questions.

I’m a strong believer in the power of foods and spices, so from what I understand, the spleen and liver are the two organs that are the most affected by a high level of platelets. Am I understanding ET correctly? Has anyone adjusted their diet since their diagnosis? Also, do you know of trustworthy websites where I could find serious nutritional information on the topic?

Thanks a lot! 🙂

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janetbender | @janetbender | Feb 7 11:57am

In reply to @laurasugargrove "Hi, I live about an hour west of Chicago (and enjoying some unseasonably warm weather right..." + (show)

Philadelphia
This site is wonderful!
It’s comforting knowing you’re not the only person with ET.

markdi | @markdi | Feb 7 3:49pm

In reply to @mrkevinl "Did you try the HU?" + (show)

I started with Hydrox and now on a combination with Pegasus that seems to be working . Low doses of both ,.

hariom1961 | @hariom1961 | Feb 9 4:55am

In reply to @mrkevinl "500mg once a day. She didn’t say when I should take it. So I figured after..." + (show)

After dinner it’s better but friends from patient to patient

hariom1961 | @hariom1961 | Feb 9 4:56am

In reply to @hariom1961 "After dinner it’s better but friends from patient to patient" + (show)

Read depends instead of friends

janemc | @janemc | Feb 10 11:50am

In reply to @mrkevinl "500mg once a day. She didn’t say when I should take it. So I figured after..." + (show)

Just checking in to see how you're doing!

aliben68 | @aliben68 | Sep 12 3:09am

In reply to @markdi "I was diagnosed at 50 and I am 68 right now. After my discovery Mayo doctors..." + (show)

I was diagnosed with ET JAK 2 about 15 years ago - no symptoms but found through a blood test. I have been on baby aspirin all that time. When I reached 60 (6 years ago) they wanted to start me on more treatment but I have not done that. My levels fluctuate up and down but recently have been more up than down. I would really be interested to know more about diet and supplements to help and also any clinical trials. Does anyone have any helpful advice please?

1995victoria | @1995victoria | Sep 13 7:22am

Curious why would you be interest in clinical trial, when HU seems to reduce platelets and baby aspirin reduce stickiness? I guess I'm overly cautious and the thought of having a stroke or heart attack are too scary, I'd rather take my chances with HU.......especially if platelets are too high. All the best

goodcheers | @goodcheers | Sep 13 8:55am

In reply to @aliben68 "I was diagnosed with ET JAK 2 about 15 years ago - no symptoms but found..." + (show)

I was also recently diagnosed (JAK2 ET) after having a routine blood test. I am in my late 60's, and my levels are currently ranging between 530k and 590k. My JAK2 level is 30%. I feel healthy, and have no symptoms at this point. Right now I am taking a daily 81mg aspirin, along with daily supliments. 1280mg Omega 3s fish oil supplement, 2000mg odorless raw garlic, 120mg Ginkgo Biloba, concentrated Pomegranate powder, concentrated beet juice, regular exercise, and doing the best I can to eat healthy. At this point I am scheduled to have my blood checked every two months, with doctor visit every six months. If my levels rise at any point, then I may decide to take the HU. For those who have no side effects, people seem to experience good results.

I have not found any specific supliment or diet information for the JAK2 ET, but chose these based on reputable articles I have read. I'd be interested to know how others are managing their disorder.

aliben68 | @aliben68 | Sep 13 9:32am

In reply to @goodcheers "I was also recently diagnosed (JAK2 ET) after having a routine blood test. I am in..." + (show)

Thanks for sharing your supplement list. I take D3 and K2, 3 g Vit C, 81 mg aspirin and zinc (sometimes) but, like you, have found nothing to give me any information on whether diet and supplementation help. Do let me know if you find any other info. Many thanks again.

aliben68 | @aliben68 | Sep 13 9:35am

In reply to @1995victoria "Curious why would you be interest in clinical trial, when HU seems to reduce platelets and..." + (show)

I saw a clinical trial that was trying out the mediterranean diet but hadn't come to much of a conclusion, although there might have been slight improvment, so I just wanted to see if there were any others out there that would be doing a similar sort of thing as I would be happy to be involved in something like that. I am concerned about the HU as a number of folk have mentioned headaches and other symptoms and I have migraines for many years and do not want to exacerbate them. best wishes

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