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

Here's a link to the About Page for the Got Essential Thrombocytosis? website:
http://ethrombo.blogspot.com/2015/10/about-et.html.
Like a few others have mentioned there are a few of the links on the page that don't work due to the page link going away (domain expired, not renewed or just something was changed on the site where the link used to be). Interesting that the Mayo Clinic link on the page is also broken - If you click on Mayo Clinic (Opens to ET page) it opens to page not found. Looks like it was reorganized and made part of this page:

Thrombocytosis: https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315

Thank you for your share. I just started hydroxyurea a month ago and my mouth is metallic, and burning. I'm very interested to learn about this diet as also about any Chinese or Ayurvedic support therapies. Best.

Hi there
I'm Jola 67 I have just been diagnosed with ET JAK2 have just started on 75mg Aspirin and 500mg. HU daily, started yesterday with th HU. Have had chronic Thromobocytosis for 5 years. Platelets 853. Had 2 Biopsies in May hated them! I love the sun have been told to avoid between 11 - 3pm, then use factor 50. I forget to drink water but have set alarms. I wish you all the best

I've taken HU 500mg daily for three months. No one mentioned avoiding sun. I don't use sunscreens (not opposed just allergic to every one I've tried) and am in the sun regularly, hiking and gardening for hours. I have not notice any symptoms of sun sensitivity.

Well that’s weird, apparently it can cause skin cancer and can change the colour of your skin. I’m on day two and feeling slightly disoriented. Feel as if I’m drunk. Did you have any reactions when you started taking HU? Would love hear

Yes - JAK2 platelet count 893 - 75mg Aspirin and 500mg HU for the next 6weeks- blood check at 2weeks and then at 6weeks.

The first day I took it I had the second migraine I'd ever had in my life. I switched to taking it in the evening and and woke up every morning with milder headaches which usually resolved with coffee. I also had two more relatively brief migraines. Prior to taking HU even mild headaches were a rare occurrence.

I also had pronounced brain fog and lethargy that I supposed were a result of age (71) or occasional nights of poor sleep until reading in comments on ET threads on this site that others were having the same symptoms. My platelets were in the mid 600s when I started HU and decreased to the upper 400s at last bloodwork earlier this month.

After discussing my risk factors (JAK-3 and age) and positives (very active lifestyle for my age, currently no other health problems, no history of thrombi), I decided to stop the HU for a trial period and continue low dose aspirin twice daily. Shortly after stopping the headaches tapered off as did the brain fog and lethargy. Even on days after less sleep than ideal, I've been outdoors for hours in hot, humid weather tackling garden chores I've neglected for months.

I have seen many others report taking HU for years with few or no side effects. I hope you are one of these.

If my experience is typical, patients get very little info on HU. My hemo told me to call the chemo nurse for instructions, and she basically told me not to waste her time and to read the pkg insert. I got better info from the Rite Aid pharmacist. Here's what I gathered:

Yes, try to stay in the shade. I love the beach and have one of those pop-up shade shelters. Love it! My dermatologist said anything over 30 SPF is overkill for my skin type. (I am a dark caucasian). I don't think a higher SPF would be at all harmful, though.

Don't handle HU caps. I pour from bottle into one of those little paper pill cups, throw the pill cup away. Cheap on Amazon. I take HU before bed, so I brush my teeth right after. Some people rinse their mouth after taking.

Don't put HU in with your other pills if you use a pill pack.

Ask your hemo if you should use a condom to avoid exposing your partner to chemo excreted in bodily fluids.

Close the toilet lid when you flush. Sometimes patients are told to flush twice. My doc said that was not necessary.

If you are taking HU and want to get pregnant, talk about fetal effects with your doc.

Drink 64 oz of water to circulate the HU properly and to flush what the body doesn't use.

My skin, hair, and nails are more sensitive and dry out very easily. HU or age? Don't know. I tried biotin. Some find it helpful, but I saw no difference. Hypoallergenic and fragrance free OTC skin and hair products work fine. My hair stylist was quite knowledgeable and helpful with hair care stuff.

Hope some of this is helpful.

Hi, sorry to hear about your side affects, we try and take what is advised but unfortunately it does not always agree with us. I have been following Anthony William (Medical Medium) blood clot diet for the last couple of months and have to say all my ET symptoms are not as bad as they were. I had become allergic to wheat and gluten some years ago and dairy was causing very bad headaches and having read Anthonys book it now makes sense having a blood disorder. I have my 3 monthly blood test next month and I will be very interested to see if all this has had an affect on my platelets. I am allergic to aspirin so I am also taking homeopathy, arnica 200 twice a day. I have also read a study that found that purple grape juice reduced platelets which again fits in with what Anthony says and as I am eating black grapes hopefully that will help. Hope you find something that works for you.

Thank you for your reply. Since I wrote last night, i started chewing some sugar less gum and actually feeling mildly better. I am sorry about the allergies affecting you too. My diet doesn't have much gluten, but i do use milk for coffee and tea. I've also introduced natural sources of probiotics, in several forms, adding a spoon here, a spoon there. Yogurt, buttermilk, miso. If you are up to try, perhaps you can introduce cashew yogurt & miso paste, both of which can be gluten & lactose free. Take care.