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

Posted by eferret @eferret, Oct 5 5:09pm

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.

janem411 | @janem411 | Oct 9 12:29pm

In reply to @preacherswife1977 "I have had no side effects at all from the medication. I am thinking it could..." + (show)

Thank you! I’m so very glad to hear of someone, especially another woman, who’s had no side effects. I’m starting at 100, which seems to be the usual starting dose.

eferret | @eferret | Oct 12 6:30pm

After visiting the hematologist at Fred Hutch in Seattle, she sent me a letter informing me that she had discussed my situation with my hematologist in Portland. They agreed to put me on Besremi and have me do a bone marrow biopsy, which she said is standard procedure for confirming a PV diagnosis and for determining whether there is any myelofibrosis.

mdterp76 | @mdterp76 | Oct 13 10:13am

It sound like your doctors are on top of your health. That is a high Jak2 and I hope it helps with your PV. Take care and sending my best to you!
Karla

nypara66 | @nypara66 | Oct 14 6:20am

In reply to @eferret "After visiting the hematologist at Fred Hutch in Seattle, she sent me a letter informing me..." + (show)

Hello, many people choose not to have the bone marrow test. PV can be diagnosed solely from your Jak2 and your labs. The treatment is the same. Many people are in disbelief, being healthy and getting the diagnosis and need the confirmation from the test and that’s fine, BUT it’s a very expensive test and medical facilities are still a business. Two medications and phlebotomies are the only known treatment for PV. So take a breath to decide. I have PV for almost two years now and my doctor said he was fine with no biopsy. Good luck!

Lori, Volunteer Mentor | @loribmt | Oct 14 9:29am

In reply to @eferret "After visiting the hematologist at Fred Hutch in Seattle, she sent me a letter informing me..." + (show)

Hi @eferret. Sounds like you have a good team behind you with your local hematologist and your 2nd opinion from a doctor in Seattle. They both concurred with the switch to Besremi to see if you have better success with reducing your hematocrit levels.
Having the bone marrow biopsy (BMBX) will allow your doctor to check the over all health of your bone marrow.

Myelofibrosis can cause scarring of the bone marrow and impact its ability to function properly and create healthy blood products. It is one of the myeloproliferative disorders in the same group with PV and ET. A bone marrow biopsy is necessary to confirm myelofibrosis. So your doctor(s) are being very thorough. The bone marrow biopsy is the gold standard for confirming the diagnosis. Do you have any questions about the BMBX? When do you have your first Besremi treatment?

eferret | @eferret | Oct 14 4:51pm

In reply to @loribmt "Hi @eferret. Sounds like you have a good team behind you with your local hematologist and..." + (show)

They probably want me to do the biopsy first, so that will take several weeks.
Several people, including the hematologist in Seattle, have told me that the biopsy should have been done as standard procedure as soon as they suspected I had PV, to confirm the diagnosis. After taking hydroxyurea for 3 months, my hematocrit is up to 46 and white blood count is almost 17.
After getting the biopsy results, I will have to find out if I qualify for financial assistance for the Besremi. I have an appointment with my local hematologist on Nov. 13 and maybe we can discuss the details at that time.

preacherswife1977 | @preacherswife1977 | Oct 16 8:36pm

In reply to @eferret "They probably want me to do the biopsy first, so that will take several weeks. Several..." + (show)

My hematologist was the one that the Besrimi had to come from a specialty pharmacy and that they had foundations that would assist. If they had not I could not have afforded it. I get 2 injections at one time and the cost of those are $16,000. I kid you not. I could not believe it. I am very thankful for the assistance.

eileen11108 | @eileen11108 | Oct 17 7:34am

In reply to @preacherswife1977 "My hematologist was the one that the Besrimi had to come from a specialty pharmacy and..." + (show)

@pteacherswife1977,
Out of curiosity, it seems you changed from Pegasys to Besremi. Did Pegasys cause you issues?
Best wishes. Eileen

preacherswife1977 | @preacherswife1977 | Oct 17 7:43pm

In reply to @eileen11108 "@pteacherswife1977, Out of curiosity, it seems you changed from Pegasys to Besremi. Did Pegasys cause you..." + (show)

I was never on Pegasys. I have only been on Hydra, Angralide, Eliquis and now Besrimi

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