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

Interesting! I found that wheat starches in quantity really made me feel draggy. I grew up in the generation used to having bread on the table with every meal. Sugar in any quantity also makes me tired. My glucose levels at quarterly blood checks sometimes run about 100, so doc is doing A1C check next time. Dairy is OK in yogurt or cheese form.

I eat a lot of soup in winter and salad in summer. Four small meals vs three main meals. It is hard, though, if your family doesn't like to eat that way.

Yes we had the same with bread, in fact bread and cheese my favourite food. Unfortunately I ended up with severe stomach pains and nausea. Doctor tried all sorts of tablets and nothing helped then a new doc noticed I had high platelets so I was sent for tests and scans and no one could find what was wrong. But thats when they diagnosed ET. My Kinesiologist discovered my allergy and once I went gluten free pain and sickness went away. Fortunately there is so much choice of gluten free it is not an issue. But dairy substitutes are just as bad as dairy as all fats seem to give me horrendous sinus headaches. I also agree with you re sugar so I limit that. Yes soup and salads and loads of veggies staple diet!

Hi I was just diagnosed with ET my platelets are 477 and a hematologist put me on baby aspirin and will follow up in 3 months, no symptoms so far ,

hello. I was diagnosed with ET over 25 years ago, while young and in the Service (Navy), at the age of 27-28. I'd like to share my experience living with this. Tho I am not JAK2, I have other mutations. This happened in 1998, when I was carrying my first child and they found high platelets, randomly, on all my monthly blood testing. The Navy hematologists found it and said something about 7 months in. I went on , not only to raise my beautfiul daughter, but again, having a son while on treatment!!! (just 11 years ago). Then, my E.T., just last year, after 25 or so years, mutated in Myelofibrosis. Looking back, I wished I would have tried to live an even fuller life with it, while young because the Navy wanted me to do two sea tours and i opted to get out. If it werent for the mild to mid neuropathies I suffered from throughout that whole time, i would have never known what I had. But I lived a great life anyways, and being that I couldnt run anymore (was a big youth runner), I spent alot of time riding horses and even goat herding (the last 15 years).

Do you have CALR mutation? Those of us with CALR run a somewhat higher risk of developing MF. I think researchers are still trying to figure out whether there's a predictable genetic pattern for ET patients that indicates eventual MF progression.

Wishing you good care, and I hope you continue to find happiness in your kids and contentment with your life. Having a small flock of sheep in retirement like my Gramma was once a dream of mine. No way that's going to happen, but I enjoy spending time at sheep shows.

I bet you would have a lot to offer FFA or 4H kids interested in goats! Seems like they're always looking for mentors, people who can answer questions and give the kids advice.

Gotta look for open windows when the doors close.

yes, i have the calr and axl mutations. i wish the Naval doctors had told me that 25 years ago. Tho, i probably would have lived the same life. (in 1998, im wondering if they even had the same diagnosis technology and the dipps system)?

No, they didn't have the same diagnostics then. Dad had ET for about 20 years (he died at 82 in 2010 of something else). There was no genetic testing and only anagrelide and HU, no Peg, Jakafi, or stem cell transplant.

When I was diagnosed in 2015, it was a whole different ball game. They could pinpoint onset, determine mutation (CALR meant that I could go some years on just aspirin), and there was more awareness that symptoms were real and could be addressed. My hematologist at our regional health system was plugged into the expertise of the Mayo Clinic and had access to better info.

But I think it's great you feel you still would have lived the same life! Regrets suck!

I lived so hard and meaningful, i forgot to mention that I didn't really pay attention to my diet. But being that i was (almost) pre-olympic training before highschool, in running (track and cc), and then did more running most of high-school, I was raised to have a really good diet anyways (growing up in So. Cal may have contributed).

I'm extremely grateful that they have a better diagnostic system now, and even more grateful that in the last 6 years several medications have come out just for Myelofibrosis. I do wish i would have come up to the Mayo, Rochester, many years earlier. tho. (one regret). But my disease (with symptoms) seem to be caught right-on time. I'm 51. In all the research i have been reading, this disease sneaks up on many. I do wonder if it was slowly happening in the background without me knowing.

There's some research that indicates that the driver mutation can be detected years or even decades before ET is activated. Could some people have the mutation and never develop an MPN?

The thinking seems to be that ET is not inherited like eye color, but that a predisposition to mutate may be inherited if you are exposed to certain carcinogenic factors that have not been identified. Given that Dad also had ET, I passed that info to my son and brother and told them to keep an eye on routine CBCs.

Fwiw, there is a move to get MPNs recognized by the VA. A lot of Vietnam vets exposed to napalm and Agent Orange developed MPNs. I know one right now a little older than me with MDS. Sadly, a lot of service members will have died be for the VA adds MPNs to the presumptive list. There is an MPN group working on this, MPN Advocacy and Education International, I believe.