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

The nutritionist at the cancer center recommended the Mediterranean Diet, smaller frequent meals, more water and electrolytes.

I tried Gatorade zero for the electrolytes, but someone on the site noted all the chemicals and suggested the no sugar, no taste electrolyte powder on Amazon. I find a slight taste so I add it to my coffee.

Unfortunately, headaches are part of ET itself.

We're all different, but for me, HU has really helped with the tough symptoms of ET (fatigue and headaches).

My oncologist gradually increased the dose to reach my effective level. So, it took several months, but I feel much better and stronger now.

Hello!I am 46 years old and was diagnosed with jk2 positive essential thrombocythemia 3 years ago.What should I eat and what supplements should I take, possibly to replace anagrelide 0.5 mg.I am waiting for an answer.Thank you!

I have ET (CALR) and POTS.
Each of us has different ailments but I take magnesium, Vit C and D3.
Small, more frequent, well-balanced lower carb meals.
Mediterranean Diet was recommended.

I also need extra hydration so I take sugar free Liquid IV - it’s a powder you add to water. There are other brands, too. You might not need this! Ask.

I’m supposed to exercise more, but my POTS causes irregular heartbeats and blood pressure, wobbly legs and short of breath so I do some chair yoga and “bed” exercises.

My local hospital has a dietitian in the cancer center and made many of these recommendations.

I first brought a long list of questions to my hemonc but now it’s a short list.

When we have ET, our blood marrow produces excessive and misshapen platelets. In most cases, this happens when a protein controlling platelet production mutates.

It would be wonderful if eating grapes could reverse that mutation. And who knows? Maybe at some point an effective alternative to medication will be found.

But right now, what works is taking the medicine prescribed by our oncologists. This keeps us alive by protecting against blood clots and strokes. It safeguards our blood marrow. It relieves the fatigue and headaches experienced when ET is uncontrolled.

Eat as well as you can, exercise as much as you can, take your pills, stay strong!

Hi @tinah07,
I had ET for 16 years was on Anagralide for that time. Had a Bone Marrow test and now on Hydrae since 2nd Jan this year. Did not have any side effects with Anagralide and so far none with Hydrae. Also Diabetes for 20 years. Eat well and exercise, not as much as I should though. Hope that helps.

Hi I've just been diagnosed with the same on Tueaday & getting bone marrow biopsy next Monday & I feel totally devastated at this diagnosis. I haven't been put on any medication as yet as they want to check with my respiratory consultant as I have asthma which is very much under control. Any advice would be much welcome.. I feel terrified & anxious since diagnosed. Maria x

I am sorry you are so distressed at your ET diagnosis - and shame on your doctor for not explaining that while this is a life-long disease, people who get diagnosed and treated can live a very long time and will likely die from something else. The bone marrow biopsy will confirm your diagnosis and will allow your doctor to prescribe appropriate medication. I was scared, too, at the initial diagnosis and the prospect of a BMB. The procedure wasn't bad and it helped me tremendously that when I told the nurse practitioner how anxious I was, she ordered a mild sedative to be added to the IV during the procedure.

Thanks this is very helpful x

Who even knew you could have too many platelets??

This is such a weird diagnosis. I was shocked and scared at first too.

But I've found so many answers and such caring support on this forum -- you will too!

All good wishes!