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! 🙂

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

debhammel | @debhammel | Mar 19 1:31pm

In reply to @gigi05 "Thank you @debhammel. May I know what dosage you are on? My initial dosage is 500..." + (show)

My platelets were at 792 initially and I took 500 mg 2x a day 7 days a week. As my platelets declined my dosage decreased. I am holding steady at 500 mg 2x a day 4 days a week.
Platelets are at 192 and have been there for 6 months

lmkmom | @lmkmom | Jun 4 10:41am

Does Jak2 cause headaches?

Lori, Volunteer Mentor | @loribmt | Jun 4 6:50pm

In reply to @lmkmom "Does Jak2 cause headaches?" + (show)

Hello, @lmkmom I’ve been reading through a couple of your previous posts to see that you’ve been diagnosed with myelofibrosis (MF or PMF). This is one of several blood disorders brought about by changes in the DNA of important genes which control the production of blood cells. In your case, the JAK2 gene has a mutation which is causing your healthy bone marrow to be replaced by fibrous tissue, leading to a lack of adequate blood cells in the body.

While the JAK2 gene itself isn’t causing your headaches it may be possible that it’s related to the myelofibrosis. You also mentioned that you recently started treatments for the MF. Did these headaches begin after you began taking the medication?

View More View Less

Please sign in or register to post a reply.