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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 Iā€™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 ā€œCā€ word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but Iā€™m feeling betrayed by my blood. Iā€™m looking for all information about ET, the chemo and support.
Thanks!

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garyr443 | @garyr443 | Jul 12 10:12am
In reply to @hudson2019 "@diffend No Vaccines For me Not Chancing it Let my immune System Fight it Off. take..." + (show)
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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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@hudson2019 Same here. I was never "vaccinated" during the pandemic. I conquered Type 2 Diabetes in 2007 and since then by eating a paleo diet, and I recently tried an experiment with cranberry juice to see if it could control my platelet count. It didn't, but it did keep my bloodpressure normal. So, I've returned to Hydroxyurea after a month without it. I still believe food should be our medicine, but I think ET is probably too complex for that. No matter, even with ET and Hydroxyurea, my life expectancy is still 86 years (I'll be 74 in October) and that's what the actuarial data say, too.

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asindelar | @asindelar | Jul 12 1:23pm
In reply to @mlmk0601 "@asindelar I have been on HU for the last two years. I too remember being so..." + (show)
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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. Iā€™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. Thatā€™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 šŸ˜ž. But if anyone in this forum knows otherwise please share.

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@mlmk0601 Thank you for your reply! I am happy to hear from others. I was unsure if anyone would reply because I didnā€™t see any recent posts. You made my day by replying ā¤ļø

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asindelar | @asindelar | Jul 12 1:30pm
In reply to @janemc "@asindelar I take a whopper dose (7,500 mg/wk) of HU and my only issues are dry..." + (show)
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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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@janemc Thank you so much for replying! I was a bit discouraged to post because I didnā€™t see any recent posts. I dealt with ET for 21 years with just the aspirin and to be honest, I didnā€™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 šŸ™ ā¤ļø

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1 reply
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janemc | @janemc | Jul 12 2:12pm
In reply to @asindelar "@janemc Thank you so much for replying! I was a bit discouraged to post because I..." + (show)
Profile picture for asindelar @asindelar

@janemc Thank you so much for replying! I was a bit discouraged to post because I didnā€™t see any recent posts. I dealt with ET for 21 years with just the aspirin and to be honest, I didnā€™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 šŸ™ ā¤ļø

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@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.

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3 replies
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garyr443 | @garyr443 | Jul 12 3:03pm
In reply to @janemc "@asindelar I take a whopper dose (7,500 mg/wk) of HU and my only issues are dry..." + (show)
Profile picture for janemc @janemc

@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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@janemc 7500mg per week with only dry skin and constipation?! Wow! And my hematologist thinks I'm unusual!

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garyr443 | @garyr443 | Jul 12 3:05pm
In reply to @janemc "@asindelar Remember, aspirin is "Robin" to HU's "Batman." They work best as a team! Aspirin makes..." + (show)
Profile picture for janemc @janemc

@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.

Jump to this post

@janemc That explains the recomendation for 1 baby aspirin per day.

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leene808 | @leene808 | Jul 12 3:25pm
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 didnā€™t have other risk factors and I was planning to have children, my hematologist kept me on low-dose (baby) aspirin for many years.
Iā€™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 600,000ā€“700,000 range.
To be honest, Iā€™m terrified of the idea of being on hydroxyurea for decades. ET can feel like a lonely condition because itā€™s so uncommon, and itā€™s hard to find people who truly understand what itā€™s like.
Iā€™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 your story is familiar to mine for surešŸ’• 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 Iā€™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 šŸ’•šŸŒŗleene

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1 reply
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lynnebgraham | @lynnebgraham | Jul 12 8:06pm

I have had ET tripple negative for about 18 years. Was on Anagrelide for many years. Only mild tiredness. New Dr and put on Hydroxycarbamide for one year. Changed medical practice to Holman Clinic at hospital and asked to go back on Anagrelide as I was so exhausted and skin very dry and hair thinned considerably during the year on Hydroxycarbamide. So far so good. Ask about alternative tablets, always good to have a lot of information before making decisions. I found Dr could not prescribed Anagrelide so that was why I was put on Hydroxycarbamide. Good luck with whatever you do.

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asindelar | @asindelar | Jul 12 9:06pm
In reply to @leene808 "@asindelar your story is familiar to mine for surešŸ’• i had to keep my platelet count..." + (show)
Profile picture for leene808 @leene808

@asindelar your story is familiar to mine for surešŸ’• 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 Iā€™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 šŸ’•šŸŒŗleene

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@leene808 Thank you so much, Leene. Your message honestly brought me a lot of comfort. Iā€™ve been so scared about being on hydroxyurea for decades, and hearing from someone whoā€™s been on it for 35 years and is doing well gives me hope.
I have two young kids, and my biggest fear since my TIA/stroke has been not being here to watch them grow up. Reading your words, especially ā€œYou will live a full life,ā€ meant more to me than you know.
I really appreciate you taking the time to share your experience and tell me about your transition to Jakafi. If you donā€™t mind, Iā€™d love to hear how youā€™re doing in a few months. I hope it continues to work well for you.
Wishing you continued good health, and thank you again for your kindness. ā¤ļø

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asindelar | @asindelar | Jul 12 9:10pm
In reply to @janemc "@asindelar Remember, aspirin is "Robin" to HU's "Batman." They work best as a team! Aspirin makes..." + (show)
Profile picture for janemc @janemc

@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.

Jump to this post

@janemc šŸ˜‚ Best ET analogy ever! Iā€™ll never think about aspirin and HU the same way again. Thanks for making me smile šŸ˜Š

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