Essential Thrombocythemia: Looking for information and support

@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.

@asindelar

Remember, aspirin is "Robin" to HU's "Batman." They work best as a team!

Aspirin makes our platelet-heavy blood slippery, less prone to clotting.

HU tells our bone marrow KNOCK IT OFF with the platelet production.

@asindelar your story is familiar to mine for sure💕 i had to keep my platelet count down below 600k to keep from having TIAs thats why i went on hydroxyurea 35 years ago. I must say it really worked well. The only thing I can say it affected is my immune system. My hair loss was minimal and my skin did suffer from more squamous cell carcinomas. But living in the sun for so long also affected my me. Recently I’ve changed to the new drug (2014. Approved .) Jakafi. This has made a huge difference. It is marketed for polycythemia but your onc doctor can prescribe it for ET. You have to try hydrea first possibly and show you cannot tolerate it. After being on Jakafi for a month i have improved my energy and my hair is growing thicker and my skin feel and looks better than ever! Ask doc about that and see if it can be prescribed. Its not chemo and is more targeted. You will live a full life ! You do not want to keep having TIAs! That could turn into a stroke! Get the counts down however you can and good luck and good thoughts 💕🌺leene

@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.

@asindelar

Remember, aspirin is "Robin" to HU's "Batman." They work best as a team!

Aspirin makes our platelet-heavy blood slippery, less prone to clotting.

HU tells our bone marrow KNOCK IT OFF with the platelet production.

@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!

@janemc Thank you so much for replying! I was a bit discouraged to post because I didn’t see any recent posts. I dealt with ET for 21 years with just the aspirin and to be honest, I didn’t take the aspirin for long periods. I am happy, I feel better reading about others dealing with ET. You made my day by replying. Thanks 🙏 ❤️

@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!

@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.