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!

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lisanell | @lisanell | Dec 23, 2025

Covid vaccinations are extremely important for people with ET due to the increased risk of of blood clots with a COVID infection.

janemc | @janemc | Dec 22, 2025

May I offer a gentle reminder that taking HU weakens our immune response?

I drove four hours to get flu and Covid vaccines this fall. I'm grateful for the life-saving protection they offer. Speak with your own doctor; I've been assured it's safe for me to get these shots.

I also wear a mask to medical appointments or other busy situations.

These are my choices, because there is no one else to care for my dogs and my elderly husband.

gama1287 | @gama1287 | Dec 21, 2025

In reply to @panamsandy "I just saw your post. May I ask your age? I was diagnosted with ET JAK2..." + (show)

I just turned 77, diagnosed with ET JAK2+ about a month ago. Taking baby aspirin daily and HU 3 days/wk. Doing well so far other than the fatigue which isn’t too bad if I get close to eight hours of sleep. 😉

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panamsandy | @panamsandy | Dec 21, 2025

I just saw your post. May I ask your age? I was diagnosted with ET JAK2 7 months ago at the age of 75 (I'm 76 now). I only take baby aspirin. How are you doing?

hudson2019 | @hudson2019 | Dec 21, 2025

In reply to @diffend "Also, I am confused about whether Covid booster is contraindicated during Hydroxyurea use. One piece I..." + (show)

@diffend No Vaccines For me Not Chancing it Let my immune System Fight it Off. take Supplements Eat Foods too Help

hudson2019 | @hudson2019 | Dec 21, 2025

In reply to @shenriq "Hi Lydia, Thank you for your response and personal statement about ET. I have no gene..." + (show)

@shenriq Hi I Have Been On Hydrea For two yrs No Side Affects yet No Symptoms i’m Also taking Supplements and Low Dose Naltrexone Since taking the Supplements and LDN My platelets are Down Not Normal Range But Down and my Other Labs Better Like Hemoglobin Red White Cells.

hudson2019 | @hudson2019 | Dec 21, 2025

In reply to @huronshores "@Huronshores High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and..." + (show)

@huronshores

@huronshores
High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and took about 3 months to lower platelets. 78 yrs old, active and reasonably healthy .. Some allergies, well controlled asthma and have had two past surgeries for sinus polyp problem. Polyps are treatable but not curable. Since an infection could affect platelets, I saw a specialist re sinuses. He said I may need another surgery to help with existing polyps but did not seem to think it was cause of high platelets. (However, in doing a bit of reading I have seen some studies that say people with sinus polyps show higher platelets?). Very hard to say what is correct. Also, asked whether diet could lower platelets somewhat. Haematologist said definite no. However, again in doing some reading, there is info that says certain foods can lower platelets. I am not happy to be taking Hydroxyurea, as while it can be used for high platelets, it sounds like it affects pretty well all cells in your body. Certainly have noticed side affects and all seem to match up with the info the drug store provided with the Hydroxyurea. So far the Haematologist has pooh poohed all side affects. I have another appointment coming up soon, so another blood test re platelets. Still thinking and not sure what I am going to do about this but not happy taking Hydroxyurea forever. No one wants to have a possible stroke, thrombosis etc as a result of high platelets .. But at the same time, Hydroxyurea can lead to other problems. Sort of like taking your car to the garage to get get new tires so that you will drive safely but then the wheels fall off! I am speaking only for myself here and not saying you or anyone else should follow my thinking. Part of me is influenced by my age and that makes me wonder if my remaining quality of life is going to be affected too much by the medication. I have a neighbour that told me she has been taking Hydroxyurea for years but I don't know the exact facts involved for her. I have been pretty lucky health wise and have not needed much medical care over the years, as compared to others in my age group. Did have one problem where I exactly listened to a Doctor against my judgment and that turned out to be a disaster. So forever after, I will be questioning and trying to pick up all the information I can on medical issues. Guess I am a doctors nightmare. Don't know if anything here helps but I am just sharing my experience so far.

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@huronshores Hi i’m taking Hydro For about 2yrs Now Lowered platelets from 1million too Between 480/600The Last Few months No Symptoms So Far. taking a lot Of Supplements and Low Dose Naltrexone 6mg Seems Like With all those Other Blood Labs are Now Getting Better Hemoglobin Red White Blood Cells, Drs Will only Say Be Careful With other things they only prescribe traditional Drugs

janemc | @janemc | Dec 20, 2025

In reply to @gama1287 "Thanks, I’ve been on HU for one month now, main side effect is fatigue and perhaps..." + (show)

@gama1287

We each experience ET itself, and HU, differently.

So I can only speak for myself. One of the strengths of this forum is hearing what lots of people have to say!

For me, the fatigue comes from ET rather than from HU. When our bone marrows churn out too many cells, that's exhausting. HU has restored my energy and strength as it's lowered my platelet count.

Constipation I do blame on HU -- but I would never have made that connection without this forum!

Drink a lot of water, up your fiber intake, stay as active as you can.

gama1287 | @gama1287 | Dec 20, 2025

In reply to @janemc "@gama1287 As Colleen says, it's a STEEP learning curve. Dip into the discussion here at your..." + (show)

Thanks, I’ve been on HU for one month now, main side effect is fatigue and perhaps constipation , is this a common side effect?

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debhammel | @debhammel | Dec 20, 2025

In reply to @gama1287 "Looking for a support group for newly diagnosed Essential Thrombocythemia due JAK2 genetic mutation. This is..." + (show)

@gama1287 welcome and ask away! We all have experience with this and are happy to share what we’ve learned.

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