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What are pros of hydroxyurea vs other methods of lowering platelets?

Posted by cdurbin @cdurbin, Jan 10, 2024

I am 47 & received my official diagnose today. I am JAK 2 mutation only & after a bone marrow biopsy & further genetic testing there are no other mutation of genes. My hematologist started me on low dose Aspirin at my initial visit. She mentioned starting hydroxyurea at me next appointment. Since I'm low risk she is leaving it up to me on when to start it. I don't react well to most prescription meds so my question is, has any one tried other ways to lower platelets & symptoms? For instance, diet or other supplements? I've also read that CBD can help with inflammation, increases blood circulation & has anticoagulant properties & can help with a lot of the symptoms.

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nohrt4me | @nohrt4me | 5 days ago
In reply to @1pearl "Hi mdterp76, Thank you for posting. I do have high platelet but less than one million...." + (show)
@1pearl

Hi mdterp76,
Thank you for posting. I do have high platelet but less than one million. I do not know what allele burden from JAK2 means, only that I do not have that mutation. Please teach me. That is great you have great O/H and they are fine with 550 platelets. Mine was wanting 400. I will look into joining the group you posted about.
Great you are doing great and a bit older than I. I hope to doing like you when my situation is more clear. Thanks for sharing.

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Allele burden is a measure of how prevalent the mutation is in your system.

I've had ET for 17 years, and my dad had it before me, so I have some longer perspectives on care. In the last decade, understanding of ET and other MPNs has exploded. It has taken awhile to filter down to clinicians, who then have to distill the info down to what actually affects patient care.

I do think that doctors are getting away from dosing patients with as much HU as it takes to get numbers below 400. They're looking more at mutation type, age and, overall clot history. They're also much more likely to start low with HU and to add doses as necessary. All of that is very good for us! It means that the docs are treating us as whole people, not as blood test results.

A good way to find out if your doc is up on treating ET us to ask how age and mutation type will figure into your treatment. If they just keep banging on about your platelet counts, might be time to get a second opinion.

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2 replies
eferret | @eferret | 4 days ago
In reply to @nohrt4me "Allele burden is a measure of how prevalent the mutation is in your system. I've had..." + (show)
@nohrt4me

Allele burden is a measure of how prevalent the mutation is in your system.

I've had ET for 17 years, and my dad had it before me, so I have some longer perspectives on care. In the last decade, understanding of ET and other MPNs has exploded. It has taken awhile to filter down to clinicians, who then have to distill the info down to what actually affects patient care.

I do think that doctors are getting away from dosing patients with as much HU as it takes to get numbers below 400. They're looking more at mutation type, age and, overall clot history. They're also much more likely to start low with HU and to add doses as necessary. All of that is very good for us! It means that the docs are treating us as whole people, not as blood test results.

A good way to find out if your doc is up on treating ET us to ask how age and mutation type will figure into your treatment. If they just keep banging on about your platelet counts, might be time to get a second opinion.

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Over the last few years, studies have shown that reducing the allele burden for PV and ET patients is just as important as maintaining healthy blood counts. The traditional drugs prescribed for PV and ET, hydroxyurea and anagrelide are not very effective in reducing the allele burden over the long term. After 10 years or so on these medications, some patients progress to myelofibrosis which is a non-reversible scarring of the bone marrow and may require a transplant.
To reduce the risk of progressing to myelofibrosis, interferon drugs such as Pegasus and Besremi have been approved (so far for PV patients) to lower the allele burden as well as to control blood counts. A study released this month for ET patients called SURPASS-ET compared anagrelide to Besremi. It showed that Besremi is more effective than anagrelide in reducing allele burden and controlling blood counts. Hopefully Besremi will be approved for ET patients soon.
You can read about the SURPASS-ET study:
https://www.targetedonc.com/view/ropeginterferon-alfa-2b-succeeds-in-phase-3-essential-thrombocythemia-trial

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1 reply
nohrt4me | @nohrt4me | 4 days ago
In reply to @eferret "Over the last few years, studies have shown that reducing the allele burden for PV and..." + (show)
@eferret

Over the last few years, studies have shown that reducing the allele burden for PV and ET patients is just as important as maintaining healthy blood counts. The traditional drugs prescribed for PV and ET, hydroxyurea and anagrelide are not very effective in reducing the allele burden over the long term. After 10 years or so on these medications, some patients progress to myelofibrosis which is a non-reversible scarring of the bone marrow and may require a transplant.
To reduce the risk of progressing to myelofibrosis, interferon drugs such as Pegasus and Besremi have been approved (so far for PV patients) to lower the allele burden as well as to control blood counts. A study released this month for ET patients called SURPASS-ET compared anagrelide to Besremi. It showed that Besremi is more effective than anagrelide in reducing allele burden and controlling blood counts. Hopefully Besremi will be approved for ET patients soon.
You can read about the SURPASS-ET study:
https://www.targetedonc.com/view/ropeginterferon-alfa-2b-succeeds-in-phase-3-essential-thrombocythemia-trial

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Yes, that tallies with what I hear. Because of my age (70), I am not much interested in the interferon-based drugs. But I do not understand the hold-up in approving these drugs for ET. (Actually HU is technically off-label for ET, but insurance pays because it's generic and cheap.)

Younger people would certainly seem to benefit from interferons, both because they slow disease progression and because they are safe for pregnant women.

In Europe, using interferon for ET patients under 40 is pretty standard. There is a risk of depression with these drugs, and I have talked to other older patients who went off Peg because of that side effect. I already have anxiety and depression, and don't want more.

However, I also hear that better dosing strategies might mitigate that side effect. So I try to keep up with new info.

In the US, of course, cost is a factor. If insurance won't pay, out of pocket costs run $6,000 per month for Peg.

REPLY
1pearl | @1pearl | 4 days ago
In reply to @nohrt4me "Allele burden is a measure of how prevalent the mutation is in your system. I've had..." + (show)
@nohrt4me

Allele burden is a measure of how prevalent the mutation is in your system.

I've had ET for 17 years, and my dad had it before me, so I have some longer perspectives on care. In the last decade, understanding of ET and other MPNs has exploded. It has taken awhile to filter down to clinicians, who then have to distill the info down to what actually affects patient care.

I do think that doctors are getting away from dosing patients with as much HU as it takes to get numbers below 400. They're looking more at mutation type, age and, overall clot history. They're also much more likely to start low with HU and to add doses as necessary. All of that is very good for us! It means that the docs are treating us as whole people, not as blood test results.

A good way to find out if your doc is up on treating ET us to ask how age and mutation type will figure into your treatment. If they just keep banging on about your platelet counts, might be time to get a second opinion.

Jump to this post

Hi nohrt4me,

Thanks for your very good information. I will ask my H/O those new questions. She did respond to my first questions finally. She wrote:

We have blood tests now (which we sent and are still waiting on results) to help confirm the diagnosis. If the platelets are high and the molecular testing is +, there is little else to explain the diagnosis and a bone marrow biopsy rarely impacts our decision making. So in practice we don't always do it if we don't need to in order to save the patient a potentially painful procedure.

My question back would be why would you just rush to treat that day if you do not have all the test results back?

She also wrote her experience as this:
I don't know how many ET patients are at KP SD, but it is not a small number. I probably average 3-5
referrals a year? I've been here for 10 years. (She actually did put that question mark in her sentence.

That means she graduated before many new methods for lab testing were developed. My question back to her is does she know about how my age and mutation type will affect my treatment plan as you were mentioning.

Thanks for your help.
Have a blessed Sunday.

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cdurbin | @cdurbin | 4 days ago
In reply to @andreamc03 "@cdurbin I, too, have PV and was diagnosed 5 years ago. I take 2 baby aspirin/day..." + (show)
@andreamc03

@cdurbin I, too, have PV and was diagnosed 5 years ago. I take 2 baby aspirin/day and undergo periodic phlebotomies to keep my Hematocrit under 45. I have about 3-4 phlebotomies/year. I consult w/Dr Tefferi at the Mayo Clinic via video visits once/year. I tell you this because Dr. Tefferi, who is a Hematologist, has written many publications on the topic of PV. I am a low risk patient like you. He believes in targeting the hematocrit and not focusing on the platelet count. My platelets vary and can be as high as 700,000. He doesn’t care. I would suggest that you read some of his scientific articles and perhaps schedule a video call with him to discuss your case. He has never advised that I take HU. Here is one of his articles. I hope this helps. Good luck, Andrea
https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.27002

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❤️

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