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! 🙂

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

jola13 | @jola13 | Jun 11, 2023

In reply to @colleenyoung "Hi @jola13, there are several members living with essential thrombocythemia (ET) here like @shenriq @jbgeorge @jackt00..." + (show)

Am on Aspirin - Chemo hydroxyurea I’m suffering from fatigue and bad headaches seeing consultant - in ten days to discuss treatment -I have been tested for everything two bone biopsies there are mutations. Have had to cancel shoulder op as was told I could have a thrombotic event

sand103 | @sand103 | Jun 11, 2023

In reply to @jacquelineh "This is good to hear, thank you. My platelets were over 1000, now around 940 after..." + (show)

A couple months.. I been on since March

dwlowrance | @dwlowrance | Jun 12, 2023

Hi-
I started taking 9 capsules of Hydroxyurea per week about 2 years ago. My platelet count shows up in the 600s and my Oncologist is happy with that level. I am very active at 75 years old and able to work and travel. I hope my experience helps you. All the best, Dave L.

ontheverge | @ontheverge | Jun 12, 2023

In reply to @jola13 "does anyone have the following rare blood cancer essential thrombocythaemia - Ive just been diagnosed" + (show)

I was diagnosed with Essential Thrombocythemia, JAK2 mutation, earlier this year. My hematologist (who was also my oncologist after breast cancer) is adamant that ET is not cancer. She says it is a blood disorder, and the widely used cancer label is a misnomer.

jola13 | @jola13 | Jun 13, 2023

OK but it is registered by the W.H.O. as a cancer of the blood since 2016/17 approx

sregiani | @sregiani | Jun 13, 2023

In reply to @ontheverge "I was diagnosed with Essential Thrombocythemia, JAK2 mutation, earlier this year. My hematologist (who was also..." + (show)

My Heme doc said there are basically 4 types of ET, and only one = cancer. I also have Jak2, but not cancer.

bevjg | @bevjg | Jun 13, 2023

In reply to @ontheverge "I was diagnosed with Essential Thrombocythemia, JAK2 mutation, earlier this year. My hematologist (who was also..." + (show)

THANK YOU! My hemotologist/oncologist says exactly the same thing!! She said it is a blood disorder. Calling it a cancer is unnecessarily causing patients extra anxiety. Not to down play the seriousness of ET, it does need to be treated to avoid some serious medical events.

nohrt4me | @nohrt4me | Jun 13, 2023

Most doctors follow the WHO classification. I get that there is some debate. But it is fairly simple to explain the difference between chronic and acute cancers.

Classification does not change the nature or severity of the disease.

However, the classification does change the seriousness with which the medical industry treats ET. A disease classified as a "cancer" gets far more research $$ and attention than some vague, rare "disorder." There are also some downsides to the classification.

I wrote about this on my blog a few years ago if anybody is interested: https://ethrombo.blogspot.com/2018/04/yes-et-is-cancer-why-is-that

jroyer | @jroyer | Jun 21, 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)

I get error dialog that domain has flown away. I'm in Hawaii.

sregiani | @sregiani | Jun 22, 2023

In reply to @jroyer "I get error dialog that domain has flown away. I'm in Hawaii." + (show)

Click “view web version”, a new page opens. Many helpful links on the right side.

View More View Less

Please sign in or register to post a reply.