How did you make the final decision to begin HU protocol for ET?

Posted by eansgardengirl @eansgardengirl, Nov 28, 2022

Hi, I continue to research and learn from others with ET. I am 57, and diagnosed this past year. Jak2 positive, ET. I may have suffered a thrombotic event post-knee surgery in 2021, therefore my MNP specialist ( Hematologist) is recommending I being Hydroxyurea ( HU). I am so hesitant to take it, for many reasons, and trying to connect with others' decision-making process. My doctor did a fellowship with Mayo Clinic, however, I am still considering going to the Mayo clinic for a second opinion. Mainly for a timeline of when I truly HAVE to being HU protocol to reduce risks of stroke, heart attack, and clots. My counts are between 570-680 platelets. I do suffer from headaches, very cold hands, and feet, and tingling in my calves ( I am told this is not related, but I can feel my calf muscles twitching almost all the time. I get fatigued, but I remain very determined to keep healthy movement. I cycle 5 days a week and hike when the weather allows. Mostly, I would like to hear others' experiences from diagnosis to when they started on HU, and what ultimately helped YOU cross the line to treatment. Thank you,

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

Hi @eansgardengirl, Welcome to Mayo Connect. You’ve come to the right place to connect with others who have also been diagnosed with ET. There are a number of current discussions with members with this blood condition who also take Hydroxyurea or other medications. Hopefully they’ll be able to help you come to a decision on your treatment.

Please feel free to join the conversations with @nohrt4me @eileen11108 @claire39 @anno @garyinmo in this discussion group. When you click on the link, under the introduction paragraph you’ll see a little box that says Oldest to Newest. Just open that and you can reverse the order to the most current replies.
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
Another discussion you might find helpful:
How do you manage the side effect of Hydroxyurea?https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

If you’d like to request a second opinion at Mayo Clinic, here’s a link which will take you to Mayo’s home page. http://mayocl.in/1mtmR63
Choose your preference for Campus and give them a call!

Did your doctor suggest that starting the meds now might slow down the progression of the disease? Or is it ok to wait?

REPLY

@eansgardengirl
Hello, and welcome! I too have a new diagnosis of ET, and trying to navigate these strange waters. I’m 69 years old, JAK 2 positive and have counts that have been in the 450-530 range. When I first went to the hematologist, they recommended starting HU right away-this was the same day I was told of the diagnosis. No mention of a low-dose aspirin was made, just the HU.
Needless to say I was in shock, but went home to do my own research. On my own, I started taking a low-dose aspirin every day, but continued to think that the HU therapy was a bit aggressive for me. At my next appointment, I asked for a second opinion and was given a list of prospects by a very helpful PA. I was able to choose one myself (and I feel that’s very important!) and the hematologist set up the appointment.
The second appointment was the following week, and happily, the hematologist-and MPN specialist- agreed with me. So presently, I’m taking 2 low-dose aspirin, only.
Again, I’m new to this, so not certain, but my magic number seems to be 600. If/when my platelets hit that number, I will need to start the HU. I’d like to put that off as long as possible, but the numbers don’t lie… it’s frustrating, because I feel I have so little control over this. My only symptoms are muscle weakness and a bit of fatigue. But I’ll be 70 next month, so maybe my symptoms are due to old age! Lol! I still try to be as active as ever, walking 4 mi. a day, and going to senior aerobics, but have noticed, mostly, the muscle weakness.
I’m grateful for resources like this one, and other online groups. By listening to others at least you can arm yourself with questions and concerns with your dr.
Best of luck to you! Discuss this with as many patients as you can and don’t be afraid to get a second opinion.
Best…

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My decision to take HU…..

I am 78, My platelets were slowly rising, In June 2022 they hit 621 and I was sent to a hematologist….they went quickly to 735. Extensive labs and bone marrow biopsy diagnosed ET JAK2. As much as I hated the thought of a chemo pill it is better than a thrombotic event. I did not hesitate and went on HU.

Since you are extremely hesitant maybe you could discuss with your hematologist the possibility of starting a low dose of HU. A very few people say they take HU three days a week while being monitored by labs. They are usually taking a low dose aspirin. When I first started HU I had weekly labs. The dose of HU is adjusted by lab results.

Good luck with your decision,
Eileen

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Well this is my gang, here. I was just diagnosed (age 64, now one day away from Medicare) with ET/JAK2 after having high platelets since my 30s, with no decisive side effects. (Aside from Visual Migraines which they say COULD be symptoms.) I was always in the 400s to 600s platelet count until a year ago when the numbers climbed and set off other blood counts. So after just monitoring for decades, I was sent to hema/oncology for BMB, etc. (Quite a different attitude these days, as I see people alarmed at a 500 number!) I'm near the 1 million number now, and am guessing I am having symptoms. It's hard to tell if head aches, tiredness and rare dizziness are due to extreme insomnia, though, and that will likely only resolve when I make up my mind about treatment. I am back to oncology next week. If the numbers have climbed again, I don't see much hope for avoiding HU, as flawed an approach to healing as it is. "Dealing," not healing, is what it seems to do. Well, I may be ready to deal. I'm talking to my acupuncturist tomorrow, and in late December with a Mayo doctor. In the meantime, I'm just trying to learn about the disease and ways of coping emotionally and physically. Seems a shame to let all my good habits and confidence crumble in the face of this stupid mutation. My Best to all ET-ers here.

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Probably doesn't matter how I made my decision. Everyone has different ideas, fears, and circumstances.

If you are afraid of HU, it is helpful to tell your hemo EXACTLY why you don't want to take it. If you give some vague answer like, "I just don't like taking pills," or "I want to treat myself as naturally as possible," you will get set down as uncooperative and that won't help your doc-patient relationship. Not fair, but that's health care in America. My husband, who had a heart attack, has been balky with his cardiologists about taking pills, and they now think he's a nutbar.

Side effects of HU include gastric upsets, increased risk for skin cancers, leg ulcers (if you're on it for more than 20 years), mouth sores, hair thinning, skin and nail changes.

The fact is that your ET is not going to get better with diet and exercise (though doctors need to wake up and realize that these things really help!) and that platelet count really doesn't affect your clot risks. Patients can get massive clotting events even if their counts are in the 500s. Once platelets approach 1,000, you run the risk of Acquired Von Willebrands. Your clot risk is more dependent on type of mutation (JAK2 patients have the highest risk), age (if you're over 60), and whether you've had a previous clotting event. (You can look up something called the IPSET score, which is what docs use when they make the determination to recommend HU treatment. https://thehematologist.org/ipset-thrombosis/ )

Second opinions are always good!

So is asking your doctor if you are a good candidate for Pegasys (interferon), an alternate to HU that actually may retard progress of the ET, but is frightfully expensive, which might be why docs don't recommend it more.

It might be a better strategy to take a low-dose of HU now than to let them go sky high and have to take mega doses to reduce your platelets. My dad also had ET, didn't know it, and was hit with big doses of HU when his platelets went way over 1,000. He had bleeding episodes with that, and it was not fun.

I've been on HU for four years, 500 mg every day maintenance dose. I am doing OK.

I know this is all scary at first. After a few years, it gradually becomes more annoying than anything else. Most people live a normal lifespan and die of something else if they are treated properly.

REPLY

I am 65 JAK2 positive ET. My hematologist has me on low dose aspirin (1 per diem) and 500 mg Hydrea per diem. We monitor my labs and when my platelet counts go down we hold off on the Hydrea. When the platelets get back up to 600, back on the Hydrea. I have no side effects and we are not stessing my health by waiting for extremes. I've only been diagnosed for a year, but my hemo has another patient that has been on the same course of meds as I without any major side effects. All of our journeys will be different but I prefer not having the wild swings in my platelet levels. I agree with @nohrtforme…mostly annoying, but we can live a normal lifespan and I intend to do so. 😘

REPLY
@rjgregory440

I am 65 JAK2 positive ET. My hematologist has me on low dose aspirin (1 per diem) and 500 mg Hydrea per diem. We monitor my labs and when my platelet counts go down we hold off on the Hydrea. When the platelets get back up to 600, back on the Hydrea. I have no side effects and we are not stessing my health by waiting for extremes. I've only been diagnosed for a year, but my hemo has another patient that has been on the same course of meds as I without any major side effects. All of our journeys will be different but I prefer not having the wild swings in my platelet levels. I agree with @nohrtforme…mostly annoying, but we can live a normal lifespan and I intend to do so. 😘

Jump to this post

Your hemo's dosing strategy is interesting, and I might ask mine about that. How often do you have to get labs? Mine are every three months. I am CALR+ and somewhat less likely to clot up than JAK2+ patients.

When I was first diagnosed, it seemed like docs were giving patients huge doses of HU and reducing only if they had terrible side effects. Now doctors try to start off with small doses in hopes of finding the lowest effective dose. I wonder if the incidence of leg ulcers might diminish as doctors lower HU dosing?

REPLY
@arti4

@eansgardengirl
Hello, and welcome! I too have a new diagnosis of ET, and trying to navigate these strange waters. I’m 69 years old, JAK 2 positive and have counts that have been in the 450-530 range. When I first went to the hematologist, they recommended starting HU right away-this was the same day I was told of the diagnosis. No mention of a low-dose aspirin was made, just the HU.
Needless to say I was in shock, but went home to do my own research. On my own, I started taking a low-dose aspirin every day, but continued to think that the HU therapy was a bit aggressive for me. At my next appointment, I asked for a second opinion and was given a list of prospects by a very helpful PA. I was able to choose one myself (and I feel that’s very important!) and the hematologist set up the appointment.
The second appointment was the following week, and happily, the hematologist-and MPN specialist- agreed with me. So presently, I’m taking 2 low-dose aspirin, only.
Again, I’m new to this, so not certain, but my magic number seems to be 600. If/when my platelets hit that number, I will need to start the HU. I’d like to put that off as long as possible, but the numbers don’t lie… it’s frustrating, because I feel I have so little control over this. My only symptoms are muscle weakness and a bit of fatigue. But I’ll be 70 next month, so maybe my symptoms are due to old age! Lol! I still try to be as active as ever, walking 4 mi. a day, and going to senior aerobics, but have noticed, mostly, the muscle weakness.
I’m grateful for resources like this one, and other online groups. By listening to others at least you can arm yourself with questions and concerns with your dr.
Best of luck to you! Discuss this with as many patients as you can and don’t be afraid to get a second opinion.
Best…

Jump to this post

Thank you so much for sharing your experience. It is so important that we share with one another, as this seems to be a rather rare disease, and connecting like this makes one feel less alone in the process. I am holding off on taking HU for now. My most recent numbers are in the 570-650 range, however, being under 60 hopefully reduces my risks. I take aspirin each day and would like to know more information on how this may put me ( us) at risk in case we have an accident etc. The bleeding seems to be the issue with blood thinners, but we need them to manage ET. Thank you again for your response. Helpful.

REPLY
@rjgregory440

I am 65 JAK2 positive ET. My hematologist has me on low dose aspirin (1 per diem) and 500 mg Hydrea per diem. We monitor my labs and when my platelet counts go down we hold off on the Hydrea. When the platelets get back up to 600, back on the Hydrea. I have no side effects and we are not stessing my health by waiting for extremes. I've only been diagnosed for a year, but my hemo has another patient that has been on the same course of meds as I without any major side effects. All of our journeys will be different but I prefer not having the wild swings in my platelet levels. I agree with @nohrtforme…mostly annoying, but we can live a normal lifespan and I intend to do so. 😘

Jump to this post

This is so helpful to read….. seems like going on and off HU is an option. I like that! I will talk with my MPN specialist about this and see what he says. I have for now held off on HU, just for a bit as I am still trying to feel better after they had pulled me off of all HRT therapy and my body is still coming into the new normal ( or so to speak). My counts remain at 570-630 , but I am under 60 so seems a bit less risk for major issues at this point. The headaches are what get me down the most…some fatigue, but way more headaches. I am keeping active as that helps me the most.

REPLY
@nohrt4me

Probably doesn't matter how I made my decision. Everyone has different ideas, fears, and circumstances.

If you are afraid of HU, it is helpful to tell your hemo EXACTLY why you don't want to take it. If you give some vague answer like, "I just don't like taking pills," or "I want to treat myself as naturally as possible," you will get set down as uncooperative and that won't help your doc-patient relationship. Not fair, but that's health care in America. My husband, who had a heart attack, has been balky with his cardiologists about taking pills, and they now think he's a nutbar.

Side effects of HU include gastric upsets, increased risk for skin cancers, leg ulcers (if you're on it for more than 20 years), mouth sores, hair thinning, skin and nail changes.

The fact is that your ET is not going to get better with diet and exercise (though doctors need to wake up and realize that these things really help!) and that platelet count really doesn't affect your clot risks. Patients can get massive clotting events even if their counts are in the 500s. Once platelets approach 1,000, you run the risk of Acquired Von Willebrands. Your clot risk is more dependent on type of mutation (JAK2 patients have the highest risk), age (if you're over 60), and whether you've had a previous clotting event. (You can look up something called the IPSET score, which is what docs use when they make the determination to recommend HU treatment. https://thehematologist.org/ipset-thrombosis/ )

Second opinions are always good!

So is asking your doctor if you are a good candidate for Pegasys (interferon), an alternate to HU that actually may retard progress of the ET, but is frightfully expensive, which might be why docs don't recommend it more.

It might be a better strategy to take a low-dose of HU now than to let them go sky high and have to take mega doses to reduce your platelets. My dad also had ET, didn't know it, and was hit with big doses of HU when his platelets went way over 1,000. He had bleeding episodes with that, and it was not fun.

I've been on HU for four years, 500 mg every day maintenance dose. I am doing OK.

I know this is all scary at first. After a few years, it gradually becomes more annoying than anything else. Most people live a normal lifespan and die of something else if they are treated properly.

Jump to this post

Thank you. I appreciate your feedback. I truly do not want to interfere with the patient/doc relationship. I get that. I have told him of my fears ( side effects and long-term use as I am 57 and looking to live as long as possible). I will be taking it somewhat soon, just needed to get through a bit more research and preparedness.

Thanks again, super helpful feedback.

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