Relapsed refractory myeloma question

FLSon9704 Member Posts: 1 *
edited June 2022 in Multiple Myeloma #1

Hi everyone,

my mom was diagnosed with relapsed multiple myeloma in February 2020. She had been on Daratumumab and Pomalyst about eight months, but was taken off the Pomalyst due to extreme fatigue and neutropenia and put on Ixasomib (Ninlaro) plus Daratumumab plus Dexamthasone. She’s been on this for 6 months. This has been a godsend of a medication, and she is now feeling great and in a complete response. However our insurer, Blue Cross Blue Shield of Florida, and their PBM Magellan, recently issued a denial letter over this combination as it isn’t on their approved combination list. We have filed an appeal that was denied, and are working through the process. Obviously this is extremely frustrating as my mom does not want to go back on the Pomalyst and all other approved combinations she’s either contraindicated for due to neuropathy or are less effective. Has anyone ever received insurance approval over this combination, and any recommendations on how we can deal with this? Thank you all for everything that you do, we are so appreciative of this community.


  • Kindra
    Kindra Member Posts: 4 Member

    I also live in Fl I am on Dara, Revimid and dex. it has been working for me the last eight months my counts are going down. I know in the past o had to apply for a grant to cover chemo for a year that my insurance wouldn’t. The finance lady at the Florida Cancer Institute helped me apply. Or if you have a social worker at your hospital they maybe able to help you also. Prayers you get it straightened out.

  • anonymous_mm_doc
    anonymous_mm_doc Member Posts: 1 *
    edited June 2022 #3


    I've got to be careful as I don't fully understand the US system. There are also a ton of clinical considerations that relate specifically to your mother that I am not party to.

    However, I am guessing that any insurer would only cover FDA-approved drug combinations. To my knowledge, ixazomib/daratumumab/dexamethasone is not on that list.

    What is your mom's neuropathy contraindication? Pre-existing neuropathy of other causes is not necessarily a contraindication to bortezomib. Furthermore, subcutaneous bortezomib, given once weekly is associated with low levels of neuropathy.

    Is your physician a myeloma specialist?

    [Content removed by CSN Support Team.]

    The US system is very different to Europe. However, if your mom's physician is a generic oncologist who does not have experience of treating hundreds of myeloma patients, I would strongly urge you to find someone who does.

    I wish you and her all the very best.