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

I'm 66 and just started taking Hydroxyurea as, like you, I was keen to try alternative ways to bring my platelets down. Unfortunately I haven't been able to and now my platelets have reached 900,000, I have decided to agree to take the chemo but am starting off on low dose 500mg every other day. I am due to be seen for the first time since starting the Hydroxyurea on 1st April. It will be interesting to see if my numbers have gone down much. My doctor was keen for me to take daily but, thankfully, agreed to see how I got on with the lower dose. I have had no side effects whatsoever which is good news. I'd still rather be using supplements or spices so would be very interested if you find anything that works.

Have had ET for about 17 years. Doing OK. I also have asthma. MPNs increase histamines, so I take Claratin daily. I do not have many asthma flare-ups, and the albuterol inhaler works fine.

I watch AirNow.gov for ozone and particulate pollution alerts. Hopefully that service will not be chopped with NOAA cutbacks. We were getting some bad days in summer from Canadian wildfires and the site was helpful in forecasting bad days when I might not want to be outside.

You may notice more sensitivity to odors and fragrances over time. I switched to fragrance free stuff, and this helped a lot.

This is not a death sentence, and you will be OK, especially now that you can be treated and monitored.

Hi, I am sorry about your diagnosis. I have been living with it for 4 years since I found out been on and off medication. But now I am on it for good now. When I got diagnosed first time it was a low dose of HU every other day. In between I stopped after a discussion with my Onc that after it went down to where the goes was and see how high it would go and time without it. 4month I would say it was back to a million. So I am on HU and 1 asprin a day. To get back to your question I have tried meditranian diet, I have done cleansing for 10 days and watched everything I eat and sadly didn't do anything with the platlates. I have talked to 4 differenc Onc/Hem but there isn't enough study done to say diet affects your platlates is the response. This disease is different in everyone. I have come to a conclusion that it's a fight I have to face head on going forward. I will still do my best to keep myself healthy as much as I can and be thankful for waking up everymorning for my kids for the last 4 years and many more to come. As much as it's a physical fight, you staying positive mentally takes a lot of loads of off you ( even tho its hard, trust me i know) but it makes a difference. So hung in there and best wishes.

I was recently diagnosed with ET. Even tho I know that one can live with ET, I have been anxious with my diagnosis also. I’ll meet with my oncologist hematologist tomorrow where I’ll ask more questions and find out what my dosage for Hydrea will be. This is a good place to find out information from others that have been living with ET and their experiences with treatment and medication. This has been helping me plan for possible side effects from the drug. All the best! Margy

I have recently been diagnosed with Essential Thrombocythemia as I had slightly elevated platelets on routine bloodtest, and follow up with hemotologist and subsequent test revealed JAK2 mutation.
Standard treatment of Hydroxyurea and aspiring was recommended. I have not taken these yet, as my platelets are still in 400's, I have no symptoms, and I am also taking natural blood thinners, like Omega3, etc.
I was wondering about the following:
-have you been tested for how thick your blood actually is before you take the blood thinners, like aspirin?
-what test is that ?
-What else have you used to thin your blood naturally?
-Has anyone used turmeric succesfully to thin blood? In what quantities? Have you done genetic testing to see whether you have the gene that makes you more likely to have liver damage from long term turmeric use?
-Has anyone checked their bloodlevels of vitamins and minerals before starting on Hydroxyurea and aspiring?
-Has anyone done genetic testing in relation to the diagnosis for MTHFR gene? Is there a connection between this gene and ET?

-what have your side effects been from taking hydroxyurea and how have you been able to manage them?

And finally, do you think of Essential Thrombocythemia as a blood cancer or 'just' a blood disorder? I have family members tell me that I don't have cancer, as if they are 'experts' lol and tell me 'the literature is pretty clear'. I don't know what they looked at, but to me MPN --spells it out pretty clearly, as well as the Leukemia Society Website.
Thank you so much for any reactions and comments in advance. Glad to have found this discussion thread.

I am also very interested in supporting myself using diet, targeted supplements, herbs and spices.
My concern is that once you are on the hydroxyurea, a chemotherapy drug, you can no longer take other blood thinning supplements like omega 3, or turmeric as they can or may interact in some way. And we know that these supplements have many other helpful benefits for our health.
I am glad to know that you are not having any side effects so far from the hydroxyurea. How long have you been taking it?
In your situation with very high platelets, I would be concerned about possible blood clots and the consequences of that like stroke.
Let us know how you fare at your appointment.

Dear agy and gigi05:: Thanks for sharing your status. Appreciate it for sharing frankly.
We are in the same boat but on opposite ends - - you are high in PLT but I am low. only around 50-to 70 K counts per cc of blood. Hope that there is a magic medical way for us to meet, connect, mix, spin, shake, divide and split so that we are all in the normal range of 150 to 450 K. Don't laugh and giigle. It is a serious business proposal. Please ask Mayo clinicians, hematologists, nutritionists, chemists, engineers ++ to work together for derive at a genious, safe, compatible, approach or devise for the benefits of mankind if not granted for a Noble Prize! We also read plenty of writups in various journals and even the info in google.com , wikipeadia, ++. Please share with me what are the medicines, vitamins, supplements, nutrients or their mixs which can help my body ( Bone mallow? ) to internally producedgreater amount of PLT? May I request the MAYO's HEAD of NUTRITION DEPTto be the leader of this wonderful project. ( Don't worry, it will not be cut by Trup thru. NIH or USAID. ).. After so much time and effort in searching, reading, digesting many published info., {{ much of these info are hear sayings, sorry, rather than scientific papers(?) }}, it is rather disappointing to be unable to reach a useful conclusion to find the right path or remedy of this Magic Bullet for ET friends like agy and gigi05 and/or for your friends like me facing the life-threatening internal hemorrage such as stroke or Heart Attach ++ due to low PLT incidents or unwanted situations!. Here many research proposals can be design and execute via this able Insttutions such as MAYO CLINICS by yourself alone or in cooperation with Hopkins, Cornell, Columbia, UCSF, and Duke Medicals ++. You are all professors and experts in your leading fields, lead us please, and so you will be happy and even obligated to move mountains to un-earth the golds below! Here is the tiny and weak voice and hope to create an echo for producing a thunderous outcomes! To all of you, Have a good healthy supper to bring your PLT ( Platelets ) to a comfort zone for your long healthy LIFE! KSL from Baltimore.

I'm on HU and have been for 18 months with no side effects. I take turmeric and Omega 3s every day with no problem.

Thank you @debhammel. May I know what dosage you are on? My initial dosage is 500 mg, 3 times per week. Platelets were at 475.

Hi I am 63 years old woman and have ET recently diagnosed 2 months ago with the same mutation. My platelets still in 500 s, I feel ok, just a little headache every other day. I am in chemo pills. Also in control of my ferritin levels. My honest conclusion is to have a quality life and regarding the food, always looking for advice on utube but only paying attention for doctors who are focus in Functional Medicine, those who look for a deep reason for any symptoms. Anyway I am trying to eat all the veggies and fruits who the studies claim kill the cancer cells, why? because in the long term there is a possibility of develop Leukemia so let's start doing something by our own. I love to follow al kind of good recipes with natural and good ingredients. Good luck