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After 3 months on hydroxyurea, I am going to ask to switch to Besremi

Posted by eferret @eferret, Oct 5, 2024

I was diagnosed with PV in March. When my hematocrit leveled off at around 44 after 10 weeks of phlebotomy, my hematologist put me on hydroxyurea because my white cell count was very high.
I started hydroxyurea on July 3. I don't think it is working very well for me. My hematocrit is now over 47, and my white cell count is still high at 18.
I suspect the main reason it is not working is that my JAK2 burden is 91.3 which is very high, and hydroxyurea does not impact JAK2 burden.

Recently the NCCN approved Besremi as a first-line treatment for PV:
https://www.targetedonc.com/view/nccn-guidelines-add-ropeginterferon-alfa-for-first-line-polycythemia-vera
In recent studies Besremi actually reduced the JAK2 burden every month it was used, and after a few years, some people were able to discontinue PV treatments altogether. Studies have also shown that a high JAK2 burden > 50% can lead to a higher risk of myelofibrosis and venous thrombosis.

Maybe this is all pie in the sky, but what I have read about Besremi sounds good to me.

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

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sylann725 | @sylann725 | Sep 5 10:26am

Thanks for your comments about the tooth nerve pain, I experienced this recently. I've been on hydroxyurea 3 months and had not experienced this. Fortunately it subsided and I am hoping it doesn't come back.

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janetbender | @janetbender | Sep 6 8:58am

It took me almost a year to calm the hydrea side effects. I’ve been on it 2 yrs and my platelet count went from 1.1 million to 400k. I went from 1 500 mg daily pill to 3 pills per week.

Wish they could control my POTS - it seems to be worse and the drugs I was given had worse side effects than hydrea. I failed hydrocortisone and Midrodine. Next they’ll try low dose naltrexone..

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jello13577 | @jello13577 | Sep 6 1:15pm
In reply to @jello13577 "I went to a Dr for one full yr and feel I lost one full year..." + (show)
Profile picture for jello13577 @jello13577

I went to a Dr for one full yr and feel I lost one full year of my life being put on HU. He doesn't care at all! How you feel and what your side effects are. He drills it in your head I will take this HU for life and in so many words live with the side effects. He has no heart or soul. His PA is identical like she has been trained that way by him. I up and stopped HU 2 wks ago per my PC and have an appt with a different oncologist/hemo March 3 referred by my PCP who can see how sick I feel and how HU has completely screwed me up. I never felt this sick before HU and I am very sick still coming off this med after two weeks. I just pray everyday I am ok til my new appt and this other DR is a good send.. the Dr never called me to ask where I am at or why I cx my last appt. I don't trust him and more than half of his reviews are soo bad! He tells patients that no one ever isn't to second guest him ever! He dx me totally off of blood labs and never a mention of BMB. I feel he has totally ruined me and I pray everyday this new Dr is going to be completely opposite as my PCP claims. Good luck to all.

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I did go to my now new hemo/oncologist and really like him and his PA. Since coming off HU in February I have not been put on anything because my platelets have stayed normal, my last visit last week they were 372. I continue to follow my program of drinking green tea, 1/4 glass of no sugar added Welches grape juice, pure cranberry juice and dark chocolate daily and my daily aspirin.
The Dr said that maybe someday I will need to go back on some med but not now and he would find something out of the chemo drugs. He mentioned he would check on a drug for PV and study it to see if it would be a benefit for me when and if the time comes. He said for now he is very happy with everything. I won't see him again for 3 months but in between I have an appt with his PA.
Thanks for the hug! Hope all is good for you! 🙏🙏🙏

Yahoo Mail: Search, Organize, Conquer

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jackiecarey | @jackiecarey | Sep 7 4:05am
In reply to @jello13577 "I went to a Dr for one full yr and feel I lost one full year..." + (show)
Profile picture for jello13577 @jello13577

I went to a Dr for one full yr and feel I lost one full year of my life being put on HU. He doesn't care at all! How you feel and what your side effects are. He drills it in your head I will take this HU for life and in so many words live with the side effects. He has no heart or soul. His PA is identical like she has been trained that way by him. I up and stopped HU 2 wks ago per my PC and have an appt with a different oncologist/hemo March 3 referred by my PCP who can see how sick I feel and how HU has completely screwed me up. I never felt this sick before HU and I am very sick still coming off this med after two weeks. I just pray everyday I am ok til my new appt and this other DR is a good send.. the Dr never called me to ask where I am at or why I cx my last appt. I don't trust him and more than half of his reviews are soo bad! He tells patients that no one ever isn't to second guest him ever! He dx me totally off of blood labs and never a mention of BMB. I feel he has totally ruined me and I pray everyday this new Dr is going to be completely opposite as my PCP claims. Good luck to all.

Jump to this post

if you don't have trust in your Hemotologist then it's time to make a change. We are supposed to be partners in our care, if that's not allowed then your doing a disservice to yourself..I have a wonderful Hematologist and know you have plenty to pick from, your Doctor needs to be a good fit...

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