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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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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)
Profile picture for diffend @diffend

Also, I am confused about whether Covid booster is contraindicated during Hydroxyurea use. One piece I read said it is.
.?

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

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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?

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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)
Profile picture for panamsandy @panamsandy

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?

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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. 😉

Sent from AT&T Yahoo Mail for iPad

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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.

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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.

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sdcgcarroll | @sdcgcarroll | Apr 20 10:44am

Boy can I relate to your post. 😞

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asindelar | @asindelar | Jul 11 4:21pm
In reply to @leene808 "Aloha @shenriq I am 67 and was diagnosed with E.T. in 1982.. so been on Hydroxyurea..." + (show)
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Aloha @shenriq
I am 67 and was diagnosed with E.T. in 1982.. so been on Hydroxyurea for over 30 years, and had a short treatment with Anagrelide for 7 of those years. The concern back then was the long term treatment with Hydroxyurea would convert me to leukemia so we tried Anagrelide for a while then by Hematologist learned that long term treatment with anagrelide would lead to Myleofibrosis. I have seen Murry Silverstein at Mayo Clinic in 1985 (now deceased) He told me I would live for another 20 years. There is new research now and other E.T. members that have proven that to be a wild guess, because I am still here and its been 30 years. I am still on Hydroxyurea 500 daily. I also take supplements that I think are working to keep my numbers down. Lately i have been having more fatigue than I ever have had, I am also having to start blood letting almost monthly because my current MD likes to have my HCT under 45. No explanation other than high HCT may put me closer to a stroke or Heart attack. My platelets are staying below 500K consistently on Hydroxyurea. No leukemia yet, no myelofibrosis yet, but may be converting to PV soon. Just waiting for the next shoe to drop. Hope that if you do need treatment, you will try the hydroxyurea in order to keep the numbers down. It has worked for me for a long time. Its better than having complications from High platelets.. that is no fun. Mine was over 1 Million when I was diagnosed and I was having horrible headaches and TIAs. Nobody knew what that was because nobody is studying this disease deep enough to have answers and other treatment options.

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@leene808
Your story came up while I was researching hydroxyurea (HU), and I wanted to reach out.
I was diagnosed with essential thrombocythemia (ET) when I was 26. My platelet count was around 900,000, and I tested positive for the JAK2 mutation. Since I didn’t have other risk factors and I was planning to have children, my hematologist kept me on low-dose (baby) aspirin for many years.
I’m now 47, and I recently had a TIA. Because of that, my doctor has recommended starting hydroxyurea in addition to the baby aspirin. My platelet count is currently in the 600,000–700,000 range.
To be honest, I’m terrified of the idea of being on hydroxyurea for decades. ET can feel like a lonely condition because it’s so uncommon, and it’s hard to find people who truly understand what it’s like.
I’m hoping to learn from others who have taken hydroxyurea long-term. How have you tolerated it? Have you experienced significant side effects? Has it affected your immune system or your quality of life over the years?
Thank you for sharing your story. It has already given me hope.

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mlmk0601 | @mlmk0601 | Jul 12 6:48am
In reply to @asindelar "@leene808 Your story came up while I was researching hydroxyurea (HU), and I wanted to reach..." + (show)
Profile picture for asindelar @asindelar

@leene808
Your story came up while I was researching hydroxyurea (HU), and I wanted to reach out.
I was diagnosed with essential thrombocythemia (ET) when I was 26. My platelet count was around 900,000, and I tested positive for the JAK2 mutation. Since I didn’t have other risk factors and I was planning to have children, my hematologist kept me on low-dose (baby) aspirin for many years.
I’m now 47, and I recently had a TIA. Because of that, my doctor has recommended starting hydroxyurea in addition to the baby aspirin. My platelet count is currently in the 600,000–700,000 range.
To be honest, I’m terrified of the idea of being on hydroxyurea for decades. ET can feel like a lonely condition because it’s so uncommon, and it’s hard to find people who truly understand what it’s like.
I’m hoping to learn from others who have taken hydroxyurea long-term. How have you tolerated it? Have you experienced significant side effects? Has it affected your immune system or your quality of life over the years?
Thank you for sharing your story. It has already given me hope.

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@asindelar
I have been on HU for the last two years. I too remember being so scared to take that first pill. This forum has helped me tremendously. There have been a few folks chime in and state that they have been on it for 10-20 years. That gives me hope I can fall in that category. So far I only had some hair loss but seems to stabilize. I’m currently on 1x every other day and tracking at 450-500K. There was a three month period were my hematologist had me on every day and my reds & whites also went a bit below level so I was a bit anemic. That’s the issue with ET, I believe there is no one medicine that just targets platelets. I think all the options just tell the bone marrow to chill and not produce so much 😞. But if anyone in this forum knows otherwise please share.

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janemc | @janemc | Jul 12 9:55am
In reply to @asindelar "@leene808 Your story came up while I was researching hydroxyurea (HU), and I wanted to reach..." + (show)
Profile picture for asindelar @asindelar

@leene808
Your story came up while I was researching hydroxyurea (HU), and I wanted to reach out.
I was diagnosed with essential thrombocythemia (ET) when I was 26. My platelet count was around 900,000, and I tested positive for the JAK2 mutation. Since I didn’t have other risk factors and I was planning to have children, my hematologist kept me on low-dose (baby) aspirin for many years.
I’m now 47, and I recently had a TIA. Because of that, my doctor has recommended starting hydroxyurea in addition to the baby aspirin. My platelet count is currently in the 600,000–700,000 range.
To be honest, I’m terrified of the idea of being on hydroxyurea for decades. ET can feel like a lonely condition because it’s so uncommon, and it’s hard to find people who truly understand what it’s like.
I’m hoping to learn from others who have taken hydroxyurea long-term. How have you tolerated it? Have you experienced significant side effects? Has it affected your immune system or your quality of life over the years?
Thank you for sharing your story. It has already given me hope.

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@asindelar

I take a whopper dose (7,500 mg/wk) of HU and my only issues are dry skin and constipation. I've been on HU for 3 years now. Others on this forum have taken it for 10, 15, 20 years!

HU has been in wide use for decades for those of us with ET (and other MPNs), and for those afflicted by sickle cell anemia, as well as throat cancers. Yes, it's "chemo," with all the associated anxiety, but it has helped hundreds of thousands over the years.

mimk0601 is right, HU's mode of action is telling our bone marrow to RELAX. This is why we get regular bloodwork done, so our platelet, white & red cell counts can all be monitored.

With only a couple of people out of every 100,000 being diagnosed with ET a year, everyone here gets the feeling of isolation. But on this forum -- you are NOT alone!!

You have handled ET for eleven years already! You've got this, asindelar!

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