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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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eileen11108 | @eileen11108 | Dec 20, 2022

If you are not seeing one I would suggest you see an MPN specialist for at least a consult.
Best wishes for your journey, Eileen

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chetalbin | @chetalbin | Dec 21, 2022

I have also been diagnosed with MPN/ET/JAK2. It’s been recommended that I start taking HU. I’m waiting to see a MPN specialist. My platelets count is 681 as of yesterday. Any comments or suggestions appreciated

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1 reply
chetalbin | @chetalbin | Dec 21, 2022
In reply to @athl "It is a big decision to start on hydroxyurea and all of us have a different..." + (show)
@athl

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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That is encouraging as I have just been diagnosed & they want me to begin HU.

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eileen11108 | @eileen11108 | Dec 21, 2022
In reply to @chetalbin "I have also been diagnosed with MPN/ET/JAK2. It’s been recommended that I start taking HU. I’m..." + (show)
@chetalbin

I have also been diagnosed with MPN/ET/JAK2. It’s been recommended that I start taking HU. I’m waiting to see a MPN specialist. My platelets count is 681 as of yesterday. Any comments or suggestions appreciated

Jump to this post

If you are extremely hesitant you could ask if you could start slowly with HU. I started taking 500 mg daily but had headache issues. I stopped taking for a few weeks and then went back on 500 mg HU every other day. Last count was 498. I see hematologist again on
January 3. Pending the lab that day I am hopeful I can stay on every other day.

If you do start HU remember to drink a minimum of 64 ounces of fluid a day.

Best wishes for your journey, Eileen

REPLY
1 reply
chetalbin | @chetalbin | Dec 21, 2022
In reply to @eileen11108 "If you are extremely hesitant you could ask if you could start slowly with HU. I..." + (show)
@eileen11108

If you are extremely hesitant you could ask if you could start slowly with HU. I started taking 500 mg daily but had headache issues. I stopped taking for a few weeks and then went back on 500 mg HU every other day. Last count was 498. I see hematologist again on
January 3. Pending the lab that day I am hopeful I can stay on every other day.

If you do start HU remember to drink a minimum of 64 ounces of fluid a day.

Best wishes for your journey, Eileen

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Thank you for your reply. It’s so helpful to hear how others are doing with ET & HU.

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2 replies
annetterzam | @annetterzam | Dec 22, 2022
In reply to @chetalbin "Thank you for your reply. It’s so helpful to hear how others are doing with ET..." + (show)
@chetalbin

Thank you for your reply. It’s so helpful to hear how others are doing with ET & HU.

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I am a 69 years old was recently diagnosed with ET JAK2 mutation. I just started on HU last week. I take 500 mg every other day so far I have no side effects.

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hdollar1 | @hdollar1 | Jan 5, 2023

I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe fatigue, my doctor did labs and referred to hematology for high platelets. I am JAK2 positive, and platelets climbed to 700. I had a bone marrow biopsy which only showed ET. I was started on 1 baby aspirin a day and have labs every 3 months. My hematologist followed me through my last pregnancy, which was the first pregnancy with ET he had ever managed! It seems to be very rare to be diagnosed as young as I was. I was increased to 2 baby aspirin a day immediately after delivery, and have kept to that regimen since. I am now 31 and have had no complications regarding the ET. My hematologist plans to start HU when my platelets hit 1000. Luckily in my pregnancy my platelets went to a normal level (pregnancy naturally lowers platelets) and they have stayed around 400 since. No more spikes yet. I plan on putting off the HU as long as possible because of the side effects

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1 reply
andorey | @andorey | Jan 5, 2023
In reply to @nohrt4me "I did not have a second opinion, but my dad had ET, so I knew about..." + (show)
@nohrt4me

I did not have a second opinion, but my dad had ET, so I knew about it and felt the oncologist at my regional hospital was doing the right stuff.

That said, I think second opinions are a really good idea. I also plugged into some seminars from MPN groups, both live and online.

I did ask my cardiologist and GP about hydroxyurea vs anagrelide after my diagnosis because, as platelets rise we all end up on something. My cardio told me HU was the better choice because anagrelide can cause heartbeat issues.

Do what you need to do to feel you are informed and feel you are making the best decision for you!

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I have had ET since I was in my late 30s when I was diagnosed. I had an enlarged spleen, and noticed one time I had problems filling out a form...memory was an issue so I saw my GP and he referred me to an onocologist. I have been on anagrelide .5mg once a day and have had no noticeable side effects for about 25 years. I was the first person he ever put on it with weekly tests and visits because of it being still a new medicine. He still monitors my bloodwork closely and I'm back to monthly bloodwork and visits every 6 months. Don't be afraid to try the medication as it works well for some of us. I am now in my 60s.

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eileen11108 | @eileen11108 | Jan 6, 2023
In reply to @chetalbin "Thank you for your reply. It’s so helpful to hear how others are doing with ET..." + (show)
@chetalbin

Thank you for your reply. It’s so helpful to hear how others are doing with ET & HU.

Jump to this post

I have been lowered from 500 mg daily to 500 mg Hydroxyurea every other day. First month my platelets dropped to 498. Second month they just dropped to 434. So I can continue every other day for now. The change was because of daily headaches. Headaches are a side effect of HU but now they are much less.
Eileen

REPLY
erikaerika | @erikaerika | Jan 12, 2023
In reply to @hdollar1 "I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe..." + (show)
@hdollar1

I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe fatigue, my doctor did labs and referred to hematology for high platelets. I am JAK2 positive, and platelets climbed to 700. I had a bone marrow biopsy which only showed ET. I was started on 1 baby aspirin a day and have labs every 3 months. My hematologist followed me through my last pregnancy, which was the first pregnancy with ET he had ever managed! It seems to be very rare to be diagnosed as young as I was. I was increased to 2 baby aspirin a day immediately after delivery, and have kept to that regimen since. I am now 31 and have had no complications regarding the ET. My hematologist plans to start HU when my platelets hit 1000. Luckily in my pregnancy my platelets went to a normal level (pregnancy naturally lowers platelets) and they have stayed around 400 since. No more spikes yet. I plan on putting off the HU as long as possible because of the side effects

Jump to this post

It's so encouraging to hear your story. I am 40 years old & was recently diagnosed. I have the Jack2 mutation. This whole experience has been terrifying for me. I'm currently on 2 baby aspirin & get blood work done every 3 months. My blood count is currently at 615. I've had 2 miscarriages prior to this diagnosis & doctors don't know if they were caused by the TB. I want another baby but I'm scared. I've talked to a high risk OBGYN & they don't seem to be very encouraging. My hemotologist thinks it's possible to do it. Although she thinks the pregnancy may cause a spike in blood count. Hearing your story gives me some hope that it's possible. I am however in my 40s so that might change things for me. Thank you for sharing.

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