Essential Thrombocythemia (ET): foods, diet, nutrition?

Hello, I got my official diagnosis today but I previously asked my hemotologist about fluctuating levels & she said it was normal. So far my highest was around 720 but at my last labs they were down around 615.

I also have Essential Thrombocythemia. My hospital has oncology dieticians and I have requested an appointment with one. Still waiting so I haven't had any information yet, but it may be an option at your clinic as well.

I am taking a bone marrow biopsy tomorrow morning. I am a healthy 64 yr old male and my platelets have been 531 for over a yr. My doc put me on lose dose aspirin which I have taken now for over a yr. I went to see a Hematologist and she gave me literature on ET and took a lot of blood tubes for testing. All were blood tests were normal except platelets 531. She used alot of medical jargon but I heard cancer and now I am scared. Haven't eaten or slept much for over a week.

My hematologist said it's in the MPN cancer family but it doesn't work like a cancer. In my own research I've found that some call it a blood cancer & some call it a blood disorder. My doctor calls it a disorder. She told me yesterday when she called with my biopsy results that life expectancy is normal & long but it's something that will have to be monitored for the rest of my life. I'm assuming it applies as long as a person doesn't have any other health issues. I'm considered low risk for every thing & I'm 47 with no previous issues. I only have the JAK2 mutation. The rest of my genes are normal. Right now my treatment plan is only low dose Aspirin. Hope that helps.

Thank you for replying. I wish you all the best.

Many of us have gotten the ET diagnosis with almost no explanation or guidance.

It IS very scary! And it takes some work to get a good understanding of our very rare condition.

But you are not alone.

Please understand that our ET is a chronic cancer, not an acute cancer such as lung cancer. There's no cure (yet!) but there's helpful treatment.

Your low-dose aspirin is already protecting your cardiovascular systems.

Another helpful option to explore with your hematologist is hydroxyurea (HU) capsules to lower your platelet levels.

May your biopsy go well. You've found friends here, and we're all rooting for you.

I have been right where you are. Yes, the words "cancer" and "biopsy" are frightening. Please keep in mind that ET is very manageable with the right medication. The go-to seems to be Hydroxyurea, a decades-old chemo drug (a capsule) that is extremely effective. Yes, it has side-effects but many people are able to take it without serious problems. It is extremely effective at lowering platelet levels. As my hematologist-oncologist put it, people live a very long time with ET as long as it is managed well. Do what your doctor recommends and keep all your appointments. I'm 69 and was diagnosed in November - my platelets were at 692. After a little over two months of taking HU and low-dose aspirin, my platelets are at 172. I've gone from 500 mg of HU 2x daily to the same dose but 4 days on and 3 days off. I have the JAK2 mutation and my biopsy was negative for everything, confirming ET. Hang in there - it's doable - and please keep us posted!

When I got my shingles shot, my platelets dropped dramatically a week later, when I got blood test. If you check Google Scholar there is a research paper that discusses this aspect. But my platelets have risen a little since the shot.....

Good recommendation, @evaet. Have you met with the oncology dietitian in the meantime? I'd be interested in hearing what you learn.

Hi Colleen, Not yet. The hematologist placed the request in December. I guess they are very busy. If and when I do learn anything of value, I will share it here.
Cheers.