Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

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!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

eileen11108 | @eileen11108 | Apr 20, 2023

In reply to @christinele "Thank you! Mine are in the low 500’s and he originally prescribed 1000 a day. After..." + (show)

If your platelets are only in the 500s I personally would not want to start with 1000 mg a day. Some people take 500 mg every other day or three days a week.

Did you start on a low dose aspirin to protect you from blood clots?

Eileen

christinele | @christinele | Apr 19, 2023

In reply to @annetterzam "I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some..." + (show)

Thank you! Mine are in the low 500’s and he originally prescribed 1000 a day. After I though about it I decided not to take them until I saw him again which won’t be till the beginning of May.

annetterzam | @annetterzam | Apr 19, 2023

In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)

I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some alternative things too, but nothing helped. I reluctantly went on 500 mgs of HU 3 x a week and have been fortunate. I've had no negative side effects and my platelets are now in the normal range. If you really need the meds take them. You don't want a stoke or heart attack. Actually your numbers aren't that high, mine were in the upper 600's. My doctor tracked my platelet count for 6 months and it continued to go up. Good luck!

eileen11108 | @eileen11108 | Apr 19, 2023

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

klcc | @klcc | Apr 19, 2023

I am about to start taking Hydrea. I wonder if taking it just before bed would alleviate some symptoms.

eileen11108 | @eileen11108 | Apr 19, 2023

In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)

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

sregiani | @sregiani | Apr 19, 2023

In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)

My 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.

christinele | @christinele | Apr 18, 2023

In reply to @colleenyoung "Welcome @christinele. You can choose to follow only discussions related to ET and JAK 2. Here's..." + (show)

😊 thank you

Colleen Young, Connect Director | @colleenyoung | Apr 18, 2023

In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)

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."

hariom1961 | @hariom1961 | Apr 18, 2023

In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)

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 .

View More View Less

Please sign in or register to post a reply.