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What are pros of hydroxyurea vs other methods of lowering platelets?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (35)Comment receiving replies
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.
Replies to "Allele burden is a measure of how prevalent the mutation is in your system. I've had..."
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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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