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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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janetbender | @janetbender | Sep 14 8:29am
In reply to @aliben68 "I saw a clinical trial that was trying out the mediterranean diet but hadn't come to..." + (show)
@aliben68

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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The nutritionist at the cancer center recommended the Mediterranean Diet, smaller frequent meals, more water and electrolytes.

I tried Gatorade zero for the electrolytes, but someone on the site noted all the chemicals and suggested the no sugar, no taste electrolyte powder on Amazon. I find a slight taste so I add it to my coffee.

REPLY
janemc | @janemc | Sep 15 8:03am
In reply to @aliben68 "I saw a clinical trial that was trying out the mediterranean diet but hadn't come to..." + (show)
@aliben68

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

Jump to this post

Unfortunately, headaches are part of ET itself.

We're all different, but for me, HU has really helped with the tough symptoms of ET (fatigue and headaches).

My oncologist gradually increased the dose to reach my effective level. So, it took several months, but I feel much better and stronger now.

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