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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@eileen11108

Did you get an explanation of why no canola oil?

Thanks, Eileen

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Canola oil is a GMO and some studies have found adverse side effects of use. I checked Healthline.com and found some good info. Just asked is canola oil healthy. Personaly have never used it.

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It’s GMO and hydrolyzed (extra hydrogen molecule). Not healthy at all! Olive oil has healthy fats, is anti-inflammatory, and is heart-protective.

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@eileen11108

Did you get an explanation of why no canola oil?

Thanks, Eileen

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Canola oil is GMO, and it’s best not to do anything synthetic, esp when one has a medical issue. 100% Italian or Portuguese olive oil is not cut with other cheaper oils.
According to Healthline and others, Olive oil is rich in monounsaturated oleic acid and is anti-inflammatory. Olive oil protects against stoke, heart diseases type-2 diabetes, and Alzheimer’s.
Canola oil is highly refined. Some studies show that a high ratio of omega-6 to omega-3 can raise your risk of certain diseases and conditions, such as Alzheimer's, obesity, and heart disease.

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@sregiani

Early on, I did an online search for ways to lower platelets, and then I talked to my doc. In my case, he said these were all good ideas and wouldn’t hurt, but not to go overboard.

1. Regular weight-bearing and stretching exercises. Not aerobic-style, but the recommendation for me was to do yoga. Now I work out formally 3-4 times weekly and try to walk outdoors or ride my bike a couple times a week. Sorry, but I can’t remember why not to raise my heart-rate, just that it was important not to – so ask your doc.
2. Reduce stress. Yea, not quite so easy, and also why yoga helps.
3. Homeopathic arnica. I take 30c/daily, which for me does not interfere with 81 mg aspirin/daily.
4. Diet: add some raw garlic a few times a week or daily. Best way I found was to smash a clove onto the side of a salad bowl, then mix in some good quality Italian olive oil and balsamic vinegar. Add greens and salt and pepper. Do NOT ever use canola oil. BTW: Cooked garlic does not have the same effect on platelets.
5. Good foods to be eaten frequently: Salmon, dark fruit (think Berries), mushrooms, cinnamon
6. Supplements: Ginseng, gingko biloba and resveratrol are supposed to help, but ask your doc about dosage.
7. Also ok in moderation is coffee (without sweetener or artificial stuff - I drink mine every morning with oat milk and sprinkle in some cinnamon) and a 5-oz glass of red wine at dinner/evening.

To this last one, I laughed! Who knew? Coffee and red wine make me smile.
My platelet count is holding in the 500's, and the hang-over headaches are now minimal.
Talk to your doc. Hope this helps 🙂

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sregiani, Was the reason your doctor your doctor told you not to get your heart rate up related to your ET or some other condition/reason? This is in direct contrast to what my MPN specialist (hematologist) has said to me. I am very active (running, tennis, hiking) and my doctor has strongly encouraged me to do these activities. And in fact I feel so much better when I am able to get a 30-minute aerobic activity in - I have more energy throughout the day when I do (which I know feels contrary to what you might expect!).

My ET has been relatively stable for the past decade.

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@laurasugargrove

sregiani, Was the reason your doctor your doctor told you not to get your heart rate up related to your ET or some other condition/reason? This is in direct contrast to what my MPN specialist (hematologist) has said to me. I am very active (running, tennis, hiking) and my doctor has strongly encouraged me to do these activities. And in fact I feel so much better when I am able to get a 30-minute aerobic activity in - I have more energy throughout the day when I do (which I know feels contrary to what you might expect!).

My ET has been relatively stable for the past decade.

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From what I remember, low-impact regular exercise helps lower cortisol levels. I’ve got a somewhat stressful job and was only diagnosed w/ET -JAK2 six months ago.

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Hi Isabelle,
My name is Rayna. I was diagnosed with ET/pre fibrotic myelofibrosis (the two docs I see aren't sure which one) in September 2021 with platelets in the 800s. I was initially started on hydroxyurea 500mg twice a day. It made me feel awful. No nausea, just really tired and weak. I was put on Pegasys in January 2022. No side effects, but insurance issues have me back on hydroxyurea as of May 5, 2023 . Before going back on it, I researched how to avoid hydroxyurea side effects and read on medline.com that folic acid supplementation helps with the side effects of hydroxyurea so I started 400mg once a day the same day I went back on hydroxyurea. Some days I feel a little less energetic, but nothing like before. I find that exercising every day, even when I don't feel like it, helps, too. Give eating healthy, folic acid and exercise a try. It helps me a lot!

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does anyone have the following rare blood cancer essential thrombocythaemia - Ive just been diagnosed

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@jola13

does anyone have the following rare blood cancer essential thrombocythaemia - Ive just been diagnosed

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Hi @jola13, there are several members living with essential thrombocythemia (ET) here like @shenriq @jbgeorge @jackt00 @bonnieshaffer @remo1110 and many others who have this blood condition.

In addition to this discussion, you can use the Search bar to find several other topics related to ET.

Jola, have been tested for genetic mutations that may help determine treatment options? What treatment plan has been recommended for you?

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Yes , me also I’m taking hydroxyurea now 1500. My platlets were in 900’s now 500’s . I have to admit it has helped brain fogginess and lethargy

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@sand103

Yes , me also I’m taking hydroxyurea now 1500. My platlets were in 900’s now 500’s . I have to admit it has helped brain fogginess and lethargy

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This is good to hear, thank you.
My platelets were over 1000, now around 940 after three weeks on Hydroxyurea. How long did it take for your brain fog and lethargy to improve to the 500’s? I still struggle a lot at the moment with these, also frequent headaches.

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