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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nancyra | @nancyra | Dec 16, 2023
In reply to @eileen11108 "Hi @nancyr, When I started HU I was immediately given an information sheet from Chemocare explaining..." + (show)
@eileen11108

Hi @nancyr,

When I started HU I was immediately given an information sheet from Chemocare explaining everything about HU. It did mention sun exposure and skin cancers. I have also done a lot of research on the Mayo Clinic and MPN sites. I am very prone to skin cancers and see dermatologist twice a year. I am taking 500 mg HU four days a week. I agree, I am not worried about getting it below 400.

May I ask what immunotherapy cream you use? Also, did you have palpitations again restarting Anagrelide? My hematologist has mentioned Anagrelide but I have been reluctant to take it as my AFib seems to be under control. I do take a blood thinner for AFib.

Many thanks, Eileen

Jump to this post

For my skin cancer I used immiquod cream which allow the body to attack the cancer cells. Immiquod is generic for Aldara.

Yes I did experience palpitations but I was also prescribed diazepam which I used for the first month or two and now don’t need it

My numbers are generally about 600
My hem is fine with that and does not want to increase dosage to get my numbers into the 400’s because of its affect on the heart.

I am very active and do not have any side affects at this time. I do not have Jak 2
You are taking a pretty low dose of HU.
I was taking 500 2x a day.

REPLY
hariom1961 | @hariom1961 | Dec 17, 2023
In reply to @ldz "I too would like information on foods. I researched the foods not to eat and they..." + (show)
@ldz

I too would like information on foods.
I researched the foods not to eat and they are all the foods I love.

I found out I have high platelets with Jak 2 and have been on 500 Hydroxyurea every other day since June. The platelets went down for a few months and then the past three months they have increased. My Hematologist dr has increased the 500 Hy to everyday now.
I did ask the dr this week, I do not know why the platelets are increasing, is it food that I am eating? She did not think so. I am still wondering.

Any suggestions?

Jump to this post

Appreciate your doubts and views. Me even on HU for last one year and platelets count is 920. Dr increases and reduces the doses as per count . Now HU 500 twice a day and ecospirin 75 mg daily being taken .
In your research which food you found those should not be eaten ? Sugar , alcohol, and fried food I know should be avoided but besides those ?

REPLY
1 reply
christinele | @christinele | Dec 17, 2023
In reply to @ldz "I too would like information on foods. I researched the foods not to eat and they..." + (show)
@ldz

I too would like information on foods.
I researched the foods not to eat and they are all the foods I love.

I found out I have high platelets with Jak 2 and have been on 500 Hydroxyurea every other day since June. The platelets went down for a few months and then the past three months they have increased. My Hematologist dr has increased the 500 Hy to everyday now.
I did ask the dr this week, I do not know why the platelets are increasing, is it food that I am eating? She did not think so. I am still wondering.

Any suggestions?

Jump to this post

What are the foods you should not eat? Every time I look it up I find conflicting answers.
I read somewhere that quinine water lowers platelets.

REPLY
janemc | @janemc | Dec 17, 2023

One of the first things my oncologist said was that no change in diet, no addition of supplements, would have any effect on my ET.

This probably means no scientific studies have been done on ET and nutrition. So we ETrs must explore it on our own, and share whatever we may learn.

So far all I can contribute is: Have a starchy meal before you take your HU.

It would be so nice to get my bone marrow to stop screaming MAKE PLATELETS!!!!

REPLY
nohrt4me | @nohrt4me | Dec 17, 2023
In reply to @eileen11108 "Hi @nancyr, When I started HU I was immediately given an information sheet from Chemocare explaining..." + (show)
@eileen11108

Hi @nancyr,

When I started HU I was immediately given an information sheet from Chemocare explaining everything about HU. It did mention sun exposure and skin cancers. I have also done a lot of research on the Mayo Clinic and MPN sites. I am very prone to skin cancers and see dermatologist twice a year. I am taking 500 mg HU four days a week. I agree, I am not worried about getting it below 400.

May I ask what immunotherapy cream you use? Also, did you have palpitations again restarting Anagrelide? My hematologist has mentioned Anagrelide but I have been reluctant to take it as my AFib seems to be under control. I do take a blood thinner for AFib.

Many thanks, Eileen

Jump to this post

I am so glad some patients get info on HU at time of prescription. I didn't, and nurses were dismissive of my questions. Pharmacist and cancer hotline in another hospital system provided info.

Tidbit I learned at my hemo appt last week: HU keeps platelet production lower, which in turn slows or arrests fibrosis in bone marro that causes the bone pain folks sometimes experience.

REPLY
1 reply
nohrt4me | @nohrt4me | Dec 17, 2023
In reply to @nohrt4me "I am so glad some patients get info on HU at time of prescription. I didn't,..." + (show)
@nohrt4me

I am so glad some patients get info on HU at time of prescription. I didn't, and nurses were dismissive of my questions. Pharmacist and cancer hotline in another hospital system provided info.

Tidbit I learned at my hemo appt last week: HU keeps platelet production lower, which in turn slows or arrests fibrosis in bone marro that causes the bone pain folks sometimes experience.

Jump to this post

... I should have added that the doc told me this when I asked why I was started on HU when my platelets were only in 700-800 range. I often hear that some docs let CALRs like me go to 1,000 before they start HU. Aside from the fact that I was 65 and therefore at moderate clot risk, she said that slowing platelet proliferation slows the fibrosis in the marrow in patients who are showing an upward trend in platelet levels.

REPLY
ldz | @ldz | Dec 18, 2023
In reply to @hariom1961 "Appreciate your doubts and views. Me even on HU for last one year and platelets count..." + (show)
@hariom1961

Appreciate your doubts and views. Me even on HU for last one year and platelets count is 920. Dr increases and reduces the doses as per count . Now HU 500 twice a day and ecospirin 75 mg daily being taken .
In your research which food you found those should not be eaten ? Sugar , alcohol, and fried food I know should be avoided but besides those ?

Jump to this post

I just googled and this is the info that came up.

Canned and frozen foods and leftovers. The nutritional value of food deteriorates with time.
White flour, white rice and processed foods. ...
Hydrogenated, partially hydrogenated or trans-fats. ...
Sugar. ...
Dairy products. ...
Meat. ...
Alcoholic beverages. ...
Foods that can interfere with blood clotting.

REPLY
nohrt4me | @nohrt4me | Dec 19, 2023

I don't want to discourage people from eating better, especially in food categories that might contribute to obesity and clot risks. What I would suggest is to make changes gradually. MPNs progress in slow motion, and in my experience, dietary changes "take" better if you don't make changes all at once. Pop and fast food were never a big part of my diet, and cutting that out entirely was easy. I moved on to cut out red and cured meat, and then went to a VB6 (vegetarian before 6 pm) eating pattern. Cutting back on cookies was a little harder. The bread and potatoes will be a lifelong struggle. But you have to balance dietary goals and quality of life. Moderation, moderation, moderation.

REPLY
debhammel | @debhammel | Dec 19, 2023

I was recently diagnosed with this as well, at age 69. The chemo I'm taking is Hydroxyurea, a decades-old oral chemo drug that is extremely effective at reducing the number of platelets. I also have the JAK2 mutation. I'm not aware of spleen or liver issues with this cancer but do know that untreated it can lead to stroke, heart attack, pulmonary embolism, and DVT so it's not something to play around with. I asked my Hematologist-Oncologist about dietary restrictions and was told there really aren't any but to maintain a healthful diet (fruits, veggies, sufficient protein, good fats). I have found a website that has some really good, detailed info about this disease: https://www.patientpower.info/

I started the Hydroxyurea on 11/15/2023, when my platelets were at 654,000. As of last week's blood test on 12/12/2023, mine are down to 233,000 - nicely normal. I have been able to reduce my dose from 2 capsules daily, to 2 capsules 5 days a week and retest on 12/26/2023. So far, I have not had any side effects.

Good luck on this journey.

REPLY
debhammel | @debhammel | Dec 19, 2023
In reply to @ldz "I too would like information on foods. I researched the foods not to eat and they..." + (show)
@ldz

I too would like information on foods.
I researched the foods not to eat and they are all the foods I love.

I found out I have high platelets with Jak 2 and have been on 500 Hydroxyurea every other day since June. The platelets went down for a few months and then the past three months they have increased. My Hematologist dr has increased the 500 Hy to everyday now.
I did ask the dr this week, I do not know why the platelets are increasing, is it food that I am eating? She did not think so. I am still wondering.

Any suggestions?

Jump to this post

I was just diagnosed last month and my hematologist/oncologist explained that it is not uncommon for platelet levels to fluctuate. I was taking 500 mg twice a day every day and was just reduced to taking this 5 days a week. Regular blood tests are key to monitoring and adjusting dosing as needed - it is not unusual for platelet levels to fluctuate and I don't think anyone knows why they do. Good luck on your journey!

REPLY
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