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

OH MY GOSH! I'm going to have to get in touch with them. I finally won my 100% Service Connected...but i'm having an extremely hard time getting the VA to acknowledge my blood disorder or the family of disorders it comes in...and even my spenomegaly. And I'm super super frustrated because I believe I deserve back pay for 25 plus years!!! and their initial wrong code. Everyone in my family is wondering (or did so 25 years ago) on how I got this. There are two theories...the biggest is that I came across a chemical in the gulf (I did 70 days straight hazardous duty in UAE, on the island called Masirah), but no else doing close duty with me got sick (and i married one of them). But i would be the only person who collected the most dead things off the beaches of the gulf right there. I use to collect shells on the beaches because i found those things extraordinary (in that area of the world). I would then soak the shells in heavy bleach. for days. And i may have walked into a transmitting attenae field. The other theory was that, at the age of 15 I lived in Holland, on a dairy farm. And was possibly exposed to something used on the farm. That particular family - someone died of Leukemia, much later. About ten years or so after i left. No one in my family has any history of E.T. but then again, they have a severe history with blood clotting and heart issues and diabetes. And I asked them to get tested many years ago (and as you would know how distant family is...they refused). The experts (leading researcher Dr. Teferri) said that my PMT came about because of the drug the VA put me on called Anagrelide. I even had a son while being treated with it (until i decided i didn't want to take it anymore around the second month of pregnancy).

Thank you you made me feel more hopeful. I am 78yrs. old and was just diagnosed with essential thrombocythemia.The 3rd part of my bone marrow test is not in yet. I’m hoping nothing else is found. I am supposed to start hydroxyurea one capsule daily 500 mg. But I have been afraid to start it. I am also on Eliquis for my a fib so maybe I still need to take 81 mg of aspirin I don’t know. I guess I have no choice, but to start the hydroxyurea. I am so afraid of the side effects, I just don’t want more problems, but I don’t want a heart attack or a stroke either. i’m happy to hear you are doing well with the medication.

Hi @judyar

I am 79, have ET JAK2 mutation. I have been taking 500 mg Hydroxyurea different daily schedule for 1-1/2 years. I now take 500 mg four days a week. I had headaches in the beginning but it has leveled out.

I was already on Eliquis for AFib so my hematologist told me I did not need the low dose aspirin.

Since you are so hesitant to start Hydroxyurea maybe you could ask your doctor if you could start taking three days a week or every other day.

Remember to drink minimum 64 ounces of fluids when you take it.

Best wishes, Eileen

Hi Eileen, thank you so much for your comment. It was very helpful. I just wish there was something natural I could do to get my blood plate let down instead of taking Hydroxyurea. You haven’t had any other side effects from the medication?I hope you continue to do well. Thanks again for your comment.

@judyar

My platelets were 735 at my first visit to hematologist. They currently are 564 and my hematologist would like to get me below 400.

I was not hesitant about taking 500 Hydroxyurea. In the beginning I sometimes had a little lightheaded feeling, daily headaches, and one first ever vertigo attack. I was switched to every other day, brief stop, then Monday/Wednesday/Friday. I am currently taking 500 mg four days a week. I do not get the daily headaches now.

I do not even touch the capsule. I slide it to another small lid, swish water around my mouth, and swallow the capsule with a full glass of water. I make sure I have 64 ounces of fluids to help clear any toxic effect.

I feel like have no choice but control my platelets. If treated you can have a long life with ET.

Eileen

All good comments Eileen.

I started on 500 mg hydroxyurea on June 29th of this year when my platelets were at 897. Within one week they had dropped to 790, but around 600 they stalled (I had bloodwork done every week….which was a real drag) so my hydroxyurea was increased to 1000 mg 5 days a week and 500 on the weekend. This eventually brought my reading down to just under 400! I was so pleased that I was finally ‘normal’. So now my haematologist has switched to 500 mg 5 days and 1000 on weekends. I am anxious to see if I maintain my normal counts, but she also cut me back to every 4 weeks for blood work, so next reading will be on Dec 14. But I guess what I am trying to say, is hydroxyurea works! And I think I am one of the lucky ones with few side effects. (Maybe I tire a little more frequently) I also try to exercise 3 or 4 times a week ( btw I am 69 and had a small stroke in April of this year and surgery to remove a blood clot from my carotid artery prior to my diagnosis with ET so feel really lucky that i have no lingering effects)

Just a head's up about Hydroxyurea and long term side effects.

I was diagnosed with ET 27 years ago at 39 years of age.
Platelet count 1.5mil
Started treatment with Anagrelide and then was switched to HU after 2 years because of heart palpitations, and was told it would be safer. (at that time, there was no talk of asprin and close monitoring as there is now for asymptomatic people)
Felt fine, numbers in the 500's, a little tired but really very few side affects.

15 years in, I developed a bad case of locally advanced basel cell carcinoma on my scalp. Did you know that one of the long term affects of continued use of HU is skin cancer? Read up on that. Fortunately for me after seeing specialist after specialist with a HUGE range of treatment options, I went for starting with an immunotheraphy cream which miraculously worked.
But I immediately went off HU and started Anagrelide.
Beware of taking any of these treatments long term.
And do not worry so much about being below 400

Hi @nancyr,

When I started HU I was immediately given an information sheet from Chemocare explaining everything about HU. It did mention sun exposure and skin cancers. I have also done a lot of research on the Mayo Clinic and MPN sites. I am very prone to skin cancers and see dermatologist twice a year. I am taking 500 mg HU four days a week. I agree, I am not worried about getting it below 400.

May I ask what immunotherapy cream you use? Also, did you have palpitations again restarting Anagrelide? My hematologist has mentioned Anagrelide but I have been reluctant to take it as my AFib seems to be under control. I do take a blood thinner for AFib.

Many thanks, Eileen

When I learned how HU makes us more susceptible to skin cancer, I bought an SPF-50 sun hat with flaps to protect my neck and face. I also use a zinc oxide sunscreen (mineral-based products are the most effective). And I use pull-down shades on my car windows.

Eileen's suggestion to see a dermatologist regularly is the best advice.

Being newly diagnosed, I so appreciate the wisdom others share.

I too would like information on foods.
I researched the foods not to eat and they are all the foods I love.

I found out I have high platelets with Jak 2 and have been on 500 Hydroxyurea every other day since June. The platelets went down for a few months and then the past three months they have increased. My Hematologist dr has increased the 500 Hy to everyday now.
I did ask the dr this week, I do not know why the platelets are increasing, is it food that I am eating? She did not think so. I am still wondering.

Any suggestions?