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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debhammel | @debhammel | Mar 19, 2025

In reply to @gigi05 "Thank you @debhammel. May I know what dosage you are on? My initial dosage is 500..." + (show)

My platelets were at 792 initially and I took 500 mg 2x a day 7 days a week. As my platelets declined my dosage decreased. I am holding steady at 500 mg 2x a day 4 days a week.
Platelets are at 192 and have been there for 6 months

lmkmom | @lmkmom | Jun 4, 2025

Does Jak2 cause headaches?

Lori, Volunteer Mentor | @loribmt | Jun 4, 2025

In reply to @lmkmom "Does Jak2 cause headaches?" + (show)

Hello, @lmkmom I’ve been reading through a couple of your previous posts to see that you’ve been diagnosed with myelofibrosis (MF or PMF). This is one of several blood disorders brought about by changes in the DNA of important genes which control the production of blood cells. In your case, the JAK2 gene has a mutation which is causing your healthy bone marrow to be replaced by fibrous tissue, leading to a lack of adequate blood cells in the body.

While the JAK2 gene itself isn’t causing your headaches it may be possible that it’s related to the myelofibrosis. You also mentioned that you recently started treatments for the MF. Did these headaches begin after you began taking the medication?

meh123 | @meh123 | Aug 5 8:22am

My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around 12 lakhs at the time. The doctor put here on HU at 3 tablets a day for 1 month. She had been taking 2 a day before this as prescribed by local doctor for about 2 months. At the end she became very weak due to the medication. We had checkup again after the 1 month period and everything was very low including the platelet and leukocyte was at around 1.8. We were advised to stop the medication for a week and after that she got better and test result was improving with leukocyte count reaching to 3.5 again but platelet has risen to 450. After taking 1 tablet a day for a week again as instructed platelet is still rising to 650 and now leukocyte count is also dropping again to 3. Doctor said follow the same routine for a month and get checked again. But if in one week it is going up that fast and leukocyte count is dropping I'm a little worried. Just want to ask about the experience of others and if there is anything in particular to avoid regarding food or habits or whatever and if anything really helps even a bit, since we were told not to take any supplements or vitamins during this time ?

Colleen Young, Connect Director | @colleenyoung | Aug 5 10:59am

In reply to @meh123 "My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around..." + (show)

@meh123 , welcome. You may be interested in the comments in this related discussion:
- Essential Thrombocythemia (ET): foods, diet, nutrition?https://connect.mayoclinic.org/discussion/essential-thrombocythemia-et-foods-diet-nutrition/

I'm also tagging members like @nohrt4me @eloise999 @deanbears @vivoconte to offer their experiences and thoughts.

nohrt4me (Jean) | @nohrt4me | Aug 5 11:51am

In reply to @meh123 "My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around..." + (show)

@meh123 I don't know what "12 lakhs" means, and I can't speak to leukocytes.

But fast rises and falls always look scary. However, just because platelets rose to 650 in a week does not mean they'll keep rising at the same rate. Blood counts often rise fast and then level out. But that is a pretty big jump.

I would encourage you to tell the doc's office that the quick rise in platelets is alarming, and to ask if your mom should be tested before the month is up.

Some people find that their platelets go up with stress. So if your mom is very worried, that's another reason to check in with the doc, if only for reassurance. Also, if she's fighting off an infection or something, that could raise levels.

Hope you get some answers!

janemc | @janemc | Aug 6 5:31am

In reply to @meh123 "My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around..." + (show)

@meh123

You and your mom are having a tough time for sure.

In my own experience, the months after diagnosis were super stressful. It took a long, long time to find an effective HU dose.

I suggest encouraging your mom to rest when she's tired, eat healthy meals, find joy however she can. This builds a little peace and strength as the doctors figure out how best to help her.

Blood cancers are complicated! Hang in there. Your mother is so lucky to have your support.

meh123 | @meh123 | Aug 6 6:31am

In reply to @nohrt4me "@meh123 I don't know what "12 lakhs" means, and I can't speak to leukocytes. But fast..." + (show)

@nohrt4me oh sorry it means 1.2 million. But this was when we first found out. Now its currently 650. The main problem as of now is that with higher dosage of HU the platelet is going down but so is the leukocyte drastically. Now she is on 1 tablet a day but that is not doing anything to stop the platelet from climbing but it is making the leukocyte count drop a lot

meh123 | @meh123 | Aug 6 6:36am

In reply to @janemc "@meh123 You and your mom are having a tough time for sure. In my own experience,..." + (show)

@janemc Been trying to tell her to rest more but she's not really the type, if she is slightly able she will always find some work to do -_- She is feeling okay for now but our main concern is the leukocyte count cannot get to normal and its still dropping because of the HU. But yea lets wait and see,,and thank you for the support

janemc | @janemc | Aug 6 7:55am

In reply to @meh123 "@janemc Been trying to tell her to rest more but she's not really the type, if..." + (show)

@meh123

Having a weird disease is hard, having a weird disease nobody thoroughly understands is AWFUL.

I believe you're saying that while HU is lowering your mother's platelet count, it's also lowering her white blood cell count.

Unfortunately, suppressing production of all kinds of blood cells is what HU does.

Until we have a medication that targets only platelets, we're stuck with HU.

This is why in the early days, we get a lot of blood draws, and why our oncologists vary the HU dosage to find the best balance.

It's stressful and it's frustrating. Go ahead and scream!

But please remember, it won't always be this hard.

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