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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docoltun | @docoltun | Jan 18 10:04am

My platelets were over 1800 when first found in thorough, routine exam over 20 years ago when Agrlin (anagrelide) was fairly new. Don't know about JAK 2 tho that drug has done the trick, lowering platelets below 400 without impacting other blood results. Recently asked my hematolgist about why it isn't more widely prescribed for ET....he said pethaps habit, if it works why switch...

joannecalandra1962 | @joannecalandra1962 | Jan 31 7:14pm

In reply to @laurasugargrove "sregiani, Was the reason your doctor your doctor told you not to get your heart rate..." + (show)

Hi, I was just diagnosed with ET JAK 2 mutation waiting on my bone marrow test to come back. This is all new to me. When I was told I asked my doc if I can continue working out and she said absolutely. I have been taking notes about what supplements to take. I normally eat pretty good but now more then ever I want to take extra good care of myself. Im hoping that I can life a long healthy life. I have never been sick and I'm 61, Ive always felt so good with tons of energy.

eileen11108 | @eileen11108 | Feb 1 7:26am

In reply to @docoltun "My platelets were over 1800 when first found in thorough, routine exam over 20 years ago..." + (show)

Have you taken Anagrelide for 20 years with no side effects at all?
Thank you, Eileen

janemc | @janemc | Feb 1 8:36am

In reply to @joannecalandra1962 "Hi, I was just diagnosed with ET JAK 2 mutation waiting on my bone marrow test..." + (show)

When diagnosed, I too was told KEEP MOVING! Our ET diagnosis makes CV-strengthening exercise essential.

joannecalandra1962 | @joannecalandra1962 | Feb 1 9:08am

I have been trying to research supplements .Any suggestions once I do get my blood work back? I’m thinking about contacting juice plus

docoltun | @docoltun | Feb 1 10:32am

In reply to @eileen11108 "Have you taken Anagrelide for 20 years with no side effects at all? Thank you, Eileen" + (show)

Yes....none that I or my docs can contribute to anagrelide. I'm 73, rather following my family health pattern of encroaching osteoarthritus and other aging issues. I do what I can to stay healthy, happy and helpful.

laurasugargrove | @laurasugargrove | Feb 5 10:51am

In reply to @joannecalandra1962 "Hi, I was just diagnosed with ET JAK 2 mutation waiting on my bone marrow test..." + (show)

It's definitely a scary time when you first get diagnosed. I was diagnosed eight years ago at age 50. It took me a bit of time to get my head around the diagnosis, but once I did, I feel I have been able to live a pretty much normal life. At least so far! I get tired more than I feel I would without ET, but also a bit hard to know what is slowing me down - ET or age! Probably a combination I suppose. Listen to your body - push a little (i.e., get out there and get some exercise even when you may not want to), but give yourself some grace if things are more difficult than before. Best of luck to you.

joannecalandra1962 | @joannecalandra1962 | Feb 6 4:58am

In reply to @laurasugargrove "It's definitely a scary time when you first get diagnosed. I was diagnosed eight years ago..." + (show)

thank you so much for the advice. I’ve always been very energetic. I work out five times a week. I do find myself more tired than I usually was before I found out it is nice to speak with people that have the same diagnosis. May I ask where you are from? I am from Buffalo New York.

laurasugargrove | @laurasugargrove | Feb 6 6:52am

In reply to @joannecalandra1962 "thank you so much for the advice. I’ve always been very energetic. I work out five..." + (show)

Hi, I live about an hour west of Chicago (and enjoying some unseasonably warm weather right now!) I have found the connections through this (and other) sites has been amazingly helpful. Even compassionate doctors can't help in the same way that our fellow MPN travelers can support us.

joannecalandra1962 | @joannecalandra1962 | Feb 6 8:45am

I agree. Once I get my bone marrow test back, I’ll know more, but as of right now I have ET. The funny thing is that I had no symptoms it showed up in my blood work. did they find yours? Are you taking any certain supplements and or has your diet changed? I do eat really well. I did cut out a few things and I’m taking certain supplements.

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