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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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zmg | @zmg | 6 days ago
In reply to @meh123 "My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around..." + (show)
Profile picture for meh123 @meh123

My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around 12 lakhs at the time. The doctor put here on HU at 3 tablets a day for 1 month. She had been taking 2 a day before this as prescribed by local doctor for about 2 months. At the end she became very weak due to the medication. We had checkup again after the 1 month period and everything was very low including the platelet and leukocyte was at around 1.8. We were advised to stop the medication for a week and after that she got better and test result was improving with leukocyte count reaching to 3.5 again but platelet has risen to 450. After taking 1 tablet a day for a week again as instructed platelet is still rising to 650 and now leukocyte count is also dropping again to 3. Doctor said follow the same routine for a month and get checked again. But if in one week it is going up that fast and leukocyte count is dropping I'm a little worried. Just want to ask about the experience of others and if there is anything in particular to avoid regarding food or habits or whatever and if anything really helps even a bit, since we were told not to take any supplements or vitamins during this time ?

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@meh123
Hi! Is your mom’s doctor a hematologist oncologist?

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