BESREMi anyone?

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?

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!

Hi @loribmt. Thank you for your post, I found it very informative. And no, I start my injections this Thursday, and looking forward to this next step in the battle.

@csrb7007 I thought the video was pretty informative and encouraging too. So I’m glad you liked it. Over the years, because of my involvement in Connect, I’ve had many opportunities to ‘pick the brains’ of my oncology/hematology teams. From what I gleaned, treating PV isn’t so much a battle as considering it a chronic disease and that most people with this myeloproliferative disease have normal life spans…passing with the disease, not from it. It is often well managed with medications to keep it in check. Let us know how you do with your Besremi, ok?

@nypara66 HU for me for 9 months. Complained about arm pain. Bleeding gums. Split tongue. Tingling in my legs and feet. Balance issues. early satiety. 15 lbs weight loss. All fell on deaf ears. The oncologist was all about my platelet numbers. (ET-jak2 and ASXL 1).
Self referred to an ET specialist at Cleveland Clinic. I felt heard ! No more HU. Trying to reduce inflammation right now and will be placed on another set of meds.
Don’t settle! Speak up. Get a second opinion from the specialist.

I have been on it since June 9. Started out really well from 1400 down to 732 at 50 but then my platelets would bounce up 840 then down to 730. I’m now at 250 and we are going to increase the dose every two weeks by 50 in the hope that kicks it down to at least the 500 range. Really hoping this works as I feel great. Just one day of feeling tired after the injection. A few headaches and sometimes heartburn. My skin is better. My energy is better. My blood tests are way better. Much prefer to hydroxyurea.

@cariadk
How are things going for you now? Your last year post was helpful.
Are you still on Besremi & any significant side effects?

My Rustfertide Trials Doctor has just applied to put me on Besremi, now that’s it has been approved in the US & Canada. My Hematocrit is steady at 45 & my Ferritin has gone from 5 to 120 with Rustfertide which should be approved this year.

I am also waiting on insurance approval for Besremi. I have ET Calr - Hoping to hear feedback from anyone with similar on success and side effects. I’ve been on HU and Anagrelide, neither of which I can continue to take . I am in USA so experience with insurance outcome appreciated. It is recently approved as treatment for ET.

Especially worried about mood swings and hair loss.