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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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My hematologist told me to take half hour before or after eating with full glass of water, Told you should strive for minimum of 64 ounces of fluid daily to help with toxic effects of drug,
I took my med after breakfast but have had headache issues. I am on a short stoppage of taking HU and expect to be back on it soon. I plan on trying after dinner this time.
Best wishes, Eileen
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2 ReactionsI am about to start taking Hydrea. I wonder if taking it just before bed would alleviate some symptoms.
Christinele,
There are also a lot of ET JAK2 discussions on healthunlocked.com. It originates in the United Kingdom but people around the world participate. You can also type in your interest and it will come up with older posts.
Best wishes, Eileen
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1 ReactionMy functional medicine doc has me taking 10,000 IU Vit D daily to keep my levels between 55-90. I live in Michigan, and while I try and get outside daily, I am fair skinned of Northern European descent, and otherwise my vitamin D tanks very low. Talk to your doc and get tested. Vit D us related to so many processes, but as someone else said, it is not necessarily related to ET w/JAK2.
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2 Reactions😊 thank you
Welcome @christinele. You can choose to follow only discussions related to ET and JAK 2. Here's how:
1. Select a discussion of interest to you. For example https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
2. Click the bell icon in the bottom right of the first message.
3. Select "Send me an email and on-site notifications".
4. Click "Save Setting".
If you are receiving notifications for discussions you are not interested in, Select "Mute this discussion. Do not notify me."
See what your report comes next week then take a call. Regarding vitamin D, try this too , coming out in sun during first hour of sunrise and hour before sunset when sun colour is orange and easily one can see it , preferably in white cotton clothes for sun rays to enter your skin. But in first hour as it may harm too, if sun very bright. Sun rays too has miracle benefits . , at right time .
Thanks for your reply . It was helpful
As far as I know, it is forever. People with sickle cell take forever. The best thing is to do a search on the internet to see what reliable sources say. Like Mayo, Cleveland Clinic, and others
I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.