1. < Blood Cancers & Disorders

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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nohrt4me | @nohrt4me | May 28, 2023

Researchers are studying whether a so-called anti-inflammatory (Mediterranean) diet might help with symptom burden. You might want to follow the MPN Quality of Life Study Group. https://shoutout.wix.com/so/bbNsGdWcQ?languageTag=en#/main

The benefits of reducing your overall stroke risks with a heart healthy diet and getting mild to moderate exercise is something that seems to help everybody and improves energy levels. Ditto good sleep and 64 oz of water every day.

Research with caution and ask your hematologist if any supplements you want to try will interact adversely with aspirin. Turmeric, which many natureopaths recommend, is one of them.

REPLY
1 reply
lynn22 | @lynn22 | May 29, 2023

As my body does not tolerate drugs very well, can’t even take aspirin, I have changed my diet and am following the Medical Mediums Blood Clot diet. I have been on it for 3 months and I have to say that all my symptoms have reduced significantly so no hangover headaches, no where near as tired, tingling much reduced so I am very pleased. I will see how my platelets have been affected on my next blood test in a couple of months.

REPLY
2 replies
azy | @azy | May 29, 2023
In reply to @nohrt4me "Researchers are studying whether a so-called anti-inflammatory (Mediterranean) diet might help with symptom burden. You might..." + (show)
@nohrt4me

Researchers are studying whether a so-called anti-inflammatory (Mediterranean) diet might help with symptom burden. You might want to follow the MPN Quality of Life Study Group. https://shoutout.wix.com/so/bbNsGdWcQ?languageTag=en#/main

The benefits of reducing your overall stroke risks with a heart healthy diet and getting mild to moderate exercise is something that seems to help everybody and improves energy levels. Ditto good sleep and 64 oz of water every day.

Research with caution and ask your hematologist if any supplements you want to try will interact adversely with aspirin. Turmeric, which many natureopaths recommend, is one of them.

Jump to this post

Hi
Thanks for the link which opens just fine. Unfortunately, I can't access http://www.mpnqol.com, I keep getting an error message. Could it be because I'm in Canada?

REPLY
2 replies
azy | @azy | May 29, 2023
In reply to @lynn22 "As my body does not tolerate drugs very well, can’t even take aspirin, I have changed..." + (show)
@lynn22

As my body does not tolerate drugs very well, can’t even take aspirin, I have changed my diet and am following the Medical Mediums Blood Clot diet. I have been on it for 3 months and I have to say that all my symptoms have reduced significantly so no hangover headaches, no where near as tired, tingling much reduced so I am very pleased. I will see how my platelets have been affected on my next blood test in a couple of months.

Jump to this post

Oh, thank you so much for the info! I didn't even know such a diet existed! And it's great your symptoms have reduced!!
I'm definitely going to check it out, I've been reading up on Ayurvedic and TCM also.

REPLY
1 reply
sregiani | @sregiani | May 29, 2023

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 🙂

REPLY
3 replies
nohrt4me | @nohrt4me | May 29, 2023
In reply to @azy "Hi Thanks for the link which opens just fine. Unfortunately, I can't access www.mpnqol.com, I keep..." + (show)
@azy

Hi
Thanks for the link which opens just fine. Unfortunately, I can't access http://www.mpnqol.com, I keep getting an error message. Could it be because I'm in Canada?

Jump to this post

That's a puzzle and I apologize. I get the quarterly newsletter in my email, so next time I get one. I will try to remember to post sign-up info here. Pretty sure your being in Canada isn't a problem!

REPLY
nohrt4me | @nohrt4me | May 29, 2023

Resveratrol was being studied as a treatment for ET until the JAK inhibitors like Jakafi were discovered and pushed as the next big thing. I haven't been able to find info about any new studies.

I was in touch with a fellow patient in Australia several years ago who was trying resveratrol supplements, but her platelets fluctuated a lot and started trending upward, and she went on HU.

Red wine has resveratrol, but not in therapeutic amounts, though a glass once in awhile might add to quality of life. Some ET patients are told not to drink any alcohol whatsoever, but this seems to vary a lot by hematologist.

REPLY
lynn22 | @lynn22 | May 29, 2023
In reply to @azy "Oh, thank you so much for the info! I didn't even know such a diet existed!..." + (show)
@azy

Oh, thank you so much for the info! I didn't even know such a diet existed! And it's great your symptoms have reduced!!
I'm definitely going to check it out, I've been reading up on Ayurvedic and TCM also.

Jump to this post

I am also taking Homeopathy, especially Arnica 200 twice a day, in place of the aspirin. Good luck with finding what works for you.

REPLY
azy | @azy | May 30, 2023
In reply to @sregiani "Early on, I did an online search for ways to lower platelets, and then I talked..." + (show)
@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 🙂

Jump to this post

Thanks for all the info: garlic, I'll make sure to add some more in my food after cooking.
I had no idea about the canola oil. And yes, I'll ask the doctor about supplements.

Great news for coffee (I looooove coffee LOL) and wine (cheers to that).

REPLY
eileen11108 | @eileen11108 | May 30, 2023
In reply to @sregiani "Early on, I did an online search for ways to lower platelets, and then I talked..." + (show)
@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 🙂

Jump to this post

Did you get an explanation of why no canola oil?

Thanks, Eileen

REPLY
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