ET and diet

[Monkey57]

Any experience that with the control of diet which can stabilize the platelet and progression?

[Paul123456]

Good question. Our MPNs are an inflammatory condition and hence, intuitively, one would assume that reducing inflammation via eating a healthy diet and regular exercise should be helpful

There are MPN nutritional studies underway and early results appear promising. Obviously not a cure but helpful re symptom burden.

[Monkey57 in reply to Paul123456]

Where to get that study insight?

[Boss1]

Hi there. I was diagnosed with PV and Jak 2 + at age 51 back in 2013. My sister is an experienced medical herbalist and much of her work is diet based. It's low inflammation. I take curcumin, magnesium, vit D3 and probiotics. Her herbs include ginko and hawthorn and ginger and I exercise moderately (one larger walk at about 10 miles and a few little ones of about 1/2 hour a week) and have dropped all processed foods. Loads of veg and red fruit. I try to cut out sugar but have a bottle of red wine spread over 3/4 days which seems fine. I'm on baby aspirin and have venesections a couple of times a year. Platelets hover between 535-580. I'm certain it is down to what I'm doing. No fatigue but do get the itchies which is only relieved by walking briskly.

[Osteomyelio in reply to Boss1]

Thank you, very interesting

[Hidden]

If you have a genetic mutation which is causing the cancer it is unlikely that diet will affect that genetic mutation. If you have symptoms of ET - such as fatigue - then diet may help that.

[MiltonBradley]

I have asked these same questions because believe me when I was diagnosed with ET, Jak2+ 1 year ago I was told there was no cure but to take a chemo pill to bring down the platelets I was scared! I applaud Boss1 for being able to stick to a strict regimen. But, for those of us who are at high risk due to a thrombotic event I am thankful for Hydroxyurea. Personally, I have had no side affect other than fatigue on the days I take 1000mg. I believe you must follow a healthy non inflammatory diet and exercise regularly for your well being but I personally who had a heart attach at 58 and found out I had ET, a genetic mutation, in the same quarter I cannot take the chance of treating with diet alone.

[hunter5582]

Don't know of any diet that directly impacts platelet production, but diet can help with MPN-related secondary symptoms that are due t inflammatory process. Particularly if JAK2+ - inflammatory cytokines likely play a role in your symptoms. An anti-inflammatory diet can help. I also take a turmeric/curcumin supplement. Works better than NSAIDS for osteoarthritis. All the best to you.