BESREMi anyone?

Just saw the oncologist at UVA and he’s recommending that I start Besremi treatments for my PV. I researched it and the side effect that worries me is peripheral neuropathy.

What can I expect?

Hello, I have PV JAK2+ Diagnodes 3 1/2 years ago at age 55. I’ve been on Hydroxyurea since day one. The doses have changed and now taking it daily. I have severe photosensitivity, nerve pain, especially teeth and I have neuropathy mostly in my hands and feet/legs. It is random and I just pay attention as I lose my balance easily and sometimes roll my toes from not picking up my feet enough while walking. Honestly I thought it to be the PV more than the meds? They tried to switch me to Jakafi but that sounds scary with side effects? Where you taking Hydroxyurea? I haven’t inquired about Besremi because they said this drug is the least damaging. Please keep us posted. Good luck!

Thanks for your feedback. I just found out I had PV roughly 4 months ago (Jak2+) by a bone marrow biopsy showed. To date, I’ve only had phlebotomy and taking aspirin. Saw the specialist at UVA and he strongly recommended bypassing hydroxyurea due to side affects and that it only treats the symptoms whereas Besremi targets the Jak2 mutated gene. Not only that, there is data showing it can put PV into remission. There are side effects and recommend you check k them out as well. My Dr seems to think Besremi is, by far, the best treatment option.

Best of luck to you.

Hi there, I have been on Besremi for a year now and it has effectively reduced my platelets to the normal range from over a million with minor side effects - dry mouth, mouth sores, some fatigue and a rash at the injection site. Everything but the rash has gone away when they reduced my dosage and the results are positive enough to reduce the injection frequency to once a month. I wish you strength, healing and success with Besremi

I have been on Besremi for a year and a half. I would tell everyone that has a choice between taking Besremi and hydroxyurea to select Besremi. For some people, long term use of hydroxyurea can lead to some nasty side effects like mouth sores and ulcers which can be difficult to heal. Sudies have shown that Besremi can lower the risk of progression to myelofibrosis and leukemia, while hydroxyurea only deals with the blood counts but has no long term reduction of the cancer at all. The only possible side effect that has occurred from my taking Besremi has been dry flaky skin on my face and scalp. I went to see a dermatologist and he prescribed Skyrizi, and the symptoms have completely disappeared. The FDA just approved a new Besremi pen which will make the injections easier to do.

@nypara66
Hi,
I have been on Besremi 500 mcg SQ Q2 weeks since 8/22 with good control of my Hct = @goal of <45%, requiring very few phlebotomies= <2/ year on average.
I was started on HU, but the side-effects were intolerable. as well as the lack of any evidence of long-term prevention of progression, which Besremi does have [increased evidence of remission to minimal residual disease both molecularly and hematologically.
I have not had any side-effects except for one episode of flu symptoms early on after a dose increase.

@csrb7007, I moved your question to this related discussion:
- BESREMi anyone? https://connect.mayoclinic.org/discussion/besremi-anyone/

Use the group search to find other Besremi-related discussions:
https://connect.mayoclinic.org/group/blood-cancers-disorders/
Did you decide to start Besremi? How are you doing?

@loribmt
Hi Lori, my blood cancer specialist at UVA’s Cancer Clinic told me last month that he strongly recommended that I start Besremi versus Hydroxyurea because Besremi focuses on the mutated gene while Hydroxyurea is primarily focused on the symptoms. He stated Besremi has been found, on something like 40% of the patients taking it, to cause the disease to go into remission. But he never said the word “cure.”

Hi @csrb7007 I would expect everyone going through their cancer journey wants to hear the words, “You’re cured!”. However, oncologists seldom use the word cure.
From my own experience with an aggressive blood cancer, even though I’ve been free of my disease for many years, my doctors will refer to my experience as a durable remission.

Most doctors will opt for remission or NED (no evidence of disease) because even after treatment they’re rarely able to say every single cancer cell is gone. But the longer a person remains cancer free the lower the risk of recurrence.

For some patients with blood cancer, because of underlying mutations, their disease may not be considered curable but often medications can keep the cancer cells from replicating, allowing patients to go on enjoying their lives with a more chronic-like condition, if that makes sense. Remission is a powerful word and doesn’t always need to be followed up with cure.

In your case, Besremi is being recommended to treat your polycythemia vera by targeting the JAK2 mutated gene. I found a pretty cool video you might be interested in watching from globalmpn.org:
https://www.globalmpn.org/post/mpn-hope-how-besremi-and-clinical-trial-is-managing-my-pv
Advances in our blood cancers and conditions continue to bring us potentially closer to, dare I say…a cure. ☺️
Have you begun taking the Besremi yet?

@csrb7007 I just met with a highly experiencd blood cancer oncologist and she strongly recommended me to stay on Hydroxyurea if it’s working and that the other two medications have serious strong side effects and should be taken only if the current treatment isnt keeping my numbers at bay. So for now I’m sticking with what I’m on. Good luck!