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.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@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?

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@colleenyoung
Hi Colleen: many thanks for the links. I will review. No, I have not been able to start on BESREMi. My provider is appealing my insurance company’s refusal to cover.

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I have been taking Inqovi for the last 11 months. Numbers are keeping my oncologist happy. It's so frustrating to find info on CMML! Or others to connect with for support and info.

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I am taking Besremi, just on my third dose, one shot every two weeks. I have not had any ill effects. The cost is $20k/mo. My OC and Baptist Pharmacy got a grant along with Medicare covers the total cost.

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Forgot to mention that I also take Xeralto daily.

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My husband has been on Inqovi for CMML for 15 months. Oncologist also has been happy with results.

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