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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,

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eansgardengirl | @eansgardengirl | Nov 30, 2022
In reply to @treeore "Well this is my gang, here. I was just diagnosed (age 64, now one day away..." + (show)
@treeore

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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Wow... I love how you put things. "Dealing" not healing. When I see someone say they have numbers at 1 million, and I have numbers in the 570-630 range, It makes me wonder how one goes from the hundreds to the millions so fast. I guess it is something with this disease that I am still learning. It seems that you facing numbers now in the millions, you are still doing well physically? That is encouraging. I do want to note that from the many sites I have been on to research and learn from other ET-ers,.. the symptomology of visual headaches, fatigue, and rare dizziness, is something not only I have experienced, but so have so many others with ET. I don't think it is a coincidence. I am 57, I am very healthy otherwise and very active. I am hoping that when I start HU, I can do a very low dosing... like a few days a week, and find myself with lower numbers. Thanks for your insights.

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2 replies
nohrt4me | @nohrt4me | Nov 30, 2022
In reply to @eansgardengirl "Thank you. I appreciate your feedback. I truly do not want to interfere with the patient/doc..." + (show)
@eansgardengirl

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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P.S., I thought that anagrelide might be a better drug for me initially. However, I have a heart valve problem. I asked my cardiologist to assess both HU and anagrelide. He nixed anagrelide because it can cause arrhythmias and palpitations. Anybody with co-morbidities would probably do well to consult with their other docs as they're deciding on treatment.

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Rhonda Gregory | @rjgregory440 | Nov 30, 2022
In reply to @nohrt4me "Your hemo's dosing strategy is interesting, and I might ask mine about that. How often do..." + (show)
@nohrt4me

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?

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Right now labs are every 8 weeks. I expect to be down to normal level at my next testing in a couple if weeks. So far, I've been trending about four months on and four months off the Hydrea. I'm hoping that the ulcer chances are reduced. I didn't mention that the other patient my hematologist has with this same diagnosis has been on this regimen for 20 years plus.

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arti4 | @arti4 | Dec 1, 2022
In reply to @eansgardengirl "Thank you so much for sharing your experience. It is so important that we share with..." + (show)
@eansgardengirl

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.

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@eansgardengirl
You raise an excellent point, about an injury. I’ve been concerned with this as well. I used to play pickleball, but because I’m … less than graceful 😏, I’ve had numerous falls with substantial bruising. So I stopped playing. Your cycling must give you similar concerns. So it’s the bleeding concern due to the aspirin, but also-and even more concerning-is having a clot form because of a bruise where perhaps the aspirin wasn’t quite adequate enough in preventing a clot. A conundrum, for sure…best of luck to you.

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eileen11108 | @eileen11108 | Dec 2, 2022
In reply to @eansgardengirl "Wow... I love how you put things. "Dealing" not healing. When I see someone say they..." + (show)
@eansgardengirl

Wow... I love how you put things. "Dealing" not healing. When I see someone say they have numbers at 1 million, and I have numbers in the 570-630 range, It makes me wonder how one goes from the hundreds to the millions so fast. I guess it is something with this disease that I am still learning. It seems that you facing numbers now in the millions, you are still doing well physically? That is encouraging. I do want to note that from the many sites I have been on to research and learn from other ET-ers,.. the symptomology of visual headaches, fatigue, and rare dizziness, is something not only I have experienced, but so have so many others with ET. I don't think it is a coincidence. I am 57, I am very healthy otherwise and very active. I am hoping that when I start HU, I can do a very low dosing... like a few days a week, and find myself with lower numbers. Thanks for your insights.

Jump to this post

The way I understsnd it, if you are 570 to 630 range in reality then you are 570,000 to 630,000. They do not add the zeroes on the lab reports.

Eileen

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eileen11108 | @eileen11108 | Dec 2, 2022
In reply to @eansgardengirl "Wow... I love how you put things. "Dealing" not healing. When I see someone say they..." + (show)
@eansgardengirl

Wow... I love how you put things. "Dealing" not healing. When I see someone say they have numbers at 1 million, and I have numbers in the 570-630 range, It makes me wonder how one goes from the hundreds to the millions so fast. I guess it is something with this disease that I am still learning. It seems that you facing numbers now in the millions, you are still doing well physically? That is encouraging. I do want to note that from the many sites I have been on to research and learn from other ET-ers,.. the symptomology of visual headaches, fatigue, and rare dizziness, is something not only I have experienced, but so have so many others with ET. I don't think it is a coincidence. I am 57, I am very healthy otherwise and very active. I am hoping that when I start HU, I can do a very low dosing... like a few days a week, and find myself with lower numbers. Thanks for your insights.

Jump to this post

I looked it up. If your lab says 570-630 range…then you are actually 570,000-630,000.

I read…
A high platelet count is 400,000 (400 x 10 9L). A higher number of platelets is called thrombocytosis. It means your body is making too many platelets.

My LabCorp results show a range range 150-450 x.10E3/ul is normal.

Eileen

REPLY
koryw208 | @koryw208 | Dec 3, 2022
In reply to @treeore "Well this is my gang, here. I was just diagnosed (age 64, now one day away..." + (show)
@treeore

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.

Jump to this post

When I was diagnosed (ET CALR and AVWD) in July this year my platelets were just shy of 2900!! I take 1500mg of Hydrea daily and I’m happy that my platelets are down just under 1000. I’m 53 and very active so the exhaustion and fatigue (not to mention nausea and GI issues from HU) …. It’s rough. Staying positive

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treeore | @treeore | Dec 3, 2022

Wow, koryw, you get the crown! And you brought the platelets down by 2/3! Nicely done. And may those side effects pass soon!

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athl | @athl | Dec 4, 2022

It is a big decision to start on hydroxyurea and all of us have a different story. I was first diagnosed with essential thrombocythemia when I was 45 years old. As I had no symptoms and was doing well, the doctor elected to wait until either my platelets reached 1 million or until I had symptoms, to begin taking hydroxyuria (Hydrea). When my platelets reached 1 million, I began to have visual problems, so I began the hydrea when I was 50 years old. I went in for weekly blood tests as we were trying to figure out which dosage of Hydrea worked best for me. I am really lucky as I take 500 mg five days a week and have been on this regimen for 16 years now without any problems! As years went by and my platelets continued to be within normal range, I now only see the oncologist once a year as I have been doing so well. Best of luck to you!

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3 replies
cleo2 | @cleo2 | Dec 5, 2022

Good for you. I will be 80 next week and have been on Hydroxyurea for 13 years. Six months ago Anagrelide was added. Blood tests are done once a month. I feel good and hope my cancer doctor will continue to balance everything in my blood.

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