Diagnosed with CMML. On HU for past 6 months. Considering BESREMi.

Posted by mycmml @mycmml, Sep 7 12:01pm

I’m a 68 year old female who was treated for breast cancer ~30 years ago. Was diagnosed in Feb. with CMML and JAK2 V617F & DNMT3A mutations. Have been taking HU (2x500mg/day) since March. Minor fatigue only side effect. My hematologist has suggested that I consider BESRAMi. My BC/BS insurance declined to cover it. Now appealing. Would really appreciate hearing from anyone who has used BESRAMi. Did it help you? Did insurance cover it for CMML? Thanks in advance for reading this and for sharing your experience.

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

csrb7007 | @csrb7007 | Sep 7 5:59pm

I’m a 69 year old male, diagnosed with PV 5 months ago, and just started Besremi. First week was definitely an adjustment. Fatigue, achy, and headaches. Since then, just minor fatigue. I use Medicare and Tricare for my insurance coverage and had no problems securing approval. I do know the makers of Besremi offer assistance with the costs.

That said, I was exposed to poison ivy over a week ago and it went ballistic. Come to find out, immunotherapy drugs make one immunosuppressed. There are precautions that you need to be aware of when using these types of treatments. As far as PV goes, I believe Besremi is the only drug which goes after the mutated gene. IMHO, it’s worth the trouble. Best of luck with your journey.

mycmml | @mycmml | Sep 7 8:43pm

Thanks so much for your very helpful response. I’m still working and only have BC/BS currently.
Wishing you the very best!

cshew | @cshew | Sep 8 1:26pm

Besremi was just approved (end of August 2026) by the FDA for treating ET, so that might change insurance coverage going forward. I am 62 and have been on Besremi now since July of 2025. I was on 200 and initially had some fatigue on injection day and dry mouth, but the fatigue and dry mouth did improve over time, especially when my dosage was reduced to 150. I do have a lingering rash around the injection site, but Besremi has been very effective in bringing my numbers into the normal range. After a year, my doctor was able to reduce the frequency of injections to only once a month instead of every other week. Best of luck to you with your treatment. Positive, healing energy to you and lots of hugs.

hudson2019 | @hudson2019 | Sep 9 7:25am

In reply to @cshew "Besremi was just approved (end of August 2026) by the FDA for treating ET, so that..." + (show)

Hi Been on Besremi For six months platelets in the normal Range Rash on my Back just itches See What Dr says about that.

sme225 | @sme225 | Sep 9 11:12am

I have had CMML for over 10 years. I started initially on HU for a couple of years but had to stop taking it because it caused sores on my ankles. I think a lot of these drugs are only available if you have tried HU and it doesn’t work for you. I switched to Jakafi and have been taking that for several years. I have Medicare and BC/BS and it is covered but the copay is $1800 per month. I get copay assistance from My Good Days. My hematologist says there are also other drugs to try if Jakafi doesn’t work out. Maybe you need to stay with HU for a while if it’s working for you and switch if you need to later. Also check on the copay before you commit to see if you can get assistance if it’s prohibitive. My copay for Hu was $5.

mycmml | @mycmml | Sep 12 7:46am

In reply to @sme225 "I have had CMML for over 10 years. I started initially on HU for a couple..." + (show)

@sme225 Many thanks for your reply. I was not aware of My Good Days but have looked it up. Very helpful. I wish you the best with your ongoing treatment.

mycmml | @mycmml | Sep 12 7:48am

In reply to @hudson2019 "Hi Been on Besremi For six months platelets in the normal Range Rash on my Back..." + (show)

@hudson2019 Thank you for sharing. I’m sorry to hear about the rash - sounds very unpleasant. Wishing you the best.

sme225 | @sme225 | Sep 14 2:30pm

@rhondaperk59 Good for you if that works for you. Without Jakafi my white cell count is 80,000. Unfortunately, giving up sugar and gluten doesn’t change genetic mutations.

Colleen Young, Connect Director | @colleenyoung | Sep 19 8:53am

@mycmml, I add my welcome. Using the group search, I also found these related discussions that may interest you:

- CMML: https://connect.mayoclinic.org/group/blood-cancers-disorders/

- Besremi https://connect.mayoclinic.org/group/blood-cancers-disorders/

Were you able to start treatment?

mycmml | @mycmml | Sep 19 9:17am

@rhondaperk59 Thank you for sharing your experience. I had no idea that the condo could remain chronic for so long. Best to you!

Please sign in or register to post a reply.