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Stage 4

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    • September 9, 2021 at 8:54 am
    RL
    Participant
      We recently learned my mom’s melanoma is now Stage 4, in her lungs. She’s done opdivo in the past with many complications that left her in the hospital. Her melanoma is BRAF G469A. Dr prescribed Braftovi/Mektovi. Insurance denied it and Pfizer won’t help with costs either. Now dr has prescribed Zelboraf/Cotellic. Insurance will cover Zelboraf but not Cotellic.

      I feel so helpless. What do we do? Is Braf/Mek a better medication for her? Should we find a way to pay for it? Or should we focus on finding a way to pay for Cotellic to go with the Zelboraf? How long do people typically take these meds? She’s starting Zelboraf, but I’m wondering if she should also get a second opinion. Dr isn’t a fan of surgery for her because there are several spots throughout her lungs. We’ve also asked about some chemo drugs that have shown positive results with G469A in studies, but dr isn’t a fan of chemo for melanoma either.

      I’ve never had to put so much trust into a doctor on such a complex topic before? Has anyone had a similar experience? Does anyone know of a doctor with experience with this specific mutation? Thank you so much for any insight you can offer.

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        • September 9, 2021 at 9:22 am
        Bubbles
        Participant
          I am sorry that you and your mom are dealing with this.  (I hate insurance!!!) Beyond that, I would definitely seek a consult with a melanoma specialist – ie someone who treats LOTS of melanoma patients.  This is not a bad idea for any Stage IV melanoma patient, but almost imperative for a patient with rare mutations. Here is a link to a list of internationally renowned melanoma specialists, not all inclusive by any means, that I put together: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/internationally-renowned-melanoma.html  Many of these would be available to do a telemed or telephone consultation if you do not live in their area.

          I am not terribly familiar with your mom’s mutation, however here is some data you may well have already seen:

          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315283/

          https://ricerca.uniba.it/retrieve/handle/11586/139887/248203/Azzariti%2Cshort%20com.%202015.pdf

          https://ascopubs.org/doi/10.1200/JCO.19.00489

          That last is far more recent.  I have always found it useful to look at the list of authors and the institutions associated with articles on topics I need to know about.  You can call them for more info – they are usually more than willing to discuss things with you.  You can also search for more related work on the subject through that means.

          Your mom’s doc is right that GENERALLY – old school chemo does not work for melanoma. However, when dealing with an unusual mutation, melanoma can break the rules.  For instance, the husband of one forum member has been effectively maintained for years on drugs normally used for HER-2 breast cancer.  Not what we usually use in melanoma, but what his mutation dictates.

          Your mom is lucky to have you there to advocate for her.  Hang in there.  Knowledge is power.  So is persistence.  I wish you my best.  Celeste

            • September 9, 2021 at 1:18 pm
            RL
            Participant
              Thank you, Celeste! You are so kind. I’ve sent your list of doctors to my mom so she can get a 2nd opinion. She’s seeing a melanoma specialist at Emory, but I still would feel much better with a 2nd or 3rd opinion.
            • September 9, 2021 at 10:43 am
            ed williams
            Participant
              RL, what was the complication from Opdivo (nivo) that had your mom in hospital and where is she being treated? I guess what I am asking is for some more details of previous treatment(s) and how long was she on previous treatment and is she considered a responder to those previous treatments, did the treatments shrink the tumors or is she a non responder showing resistance to treatment?
                • September 9, 2021 at 1:21 pm
                RL
                Participant
                  Hi Ed, She was not yet stage 4 when undergoing Opdivo, but she did have a recurrence of melanoma post-surgery while going through Opdivo treatment. My mom has pre-existing GI issues that caused severe complications while in treatment and even for 6 months after treatment. It also caused her pancreas to atrophy. Her oncologist is at Emory.
                  • September 9, 2021 at 3:38 pm
                  ed williams
                  Participant
                    Ok, so the situation is complicated by previous GI issues. The list that Celeste gave you for 2nd opinion is great and based on previous forum members reaching out to Dr. Weber, he is always a great choice and top of the melanoma field! Best Wishes!!!! Ed
                    • September 10, 2021 at 10:22 am
                    RL
                    Participant
                      Thanks, Ed! I let my mom know that people have had good experiences with Dr. Weber. I wonder if he will do telehealth appointments with patients in other states as travelling to NY is pretty big trip for her, especially with the pandemic.
                    • September 10, 2021 at 7:38 am
                    hxcadam
                    Participant
                      Did you go through Pfizer’s website to get copay assistance?  I have private insurance and got automated acceptance through their website when my doctor prescribed Braftovi/mektovi to me.  This is the link – https://www.braftovimektovi.com/patient-support/#financial-support
                        • September 10, 2021 at 10:25 am
                        RL
                        Participant
                          Her pharmacist applied for Pfizer’s financial assistance program for cash paying customers. They denied her because her household income is slightly over their cut off. Which is ridiculous because these drugs cost about $25k per month. I wonder if the copay assistance program would work since her insurance has completely denied coverage of these drugs because they’re for BRAF V600 and not FDA approved for BRAF G469A.
                          • September 23, 2021 at 7:02 pm
                          youngann
                          Participant
                            I know that with Bristol Meyers Squibb and Merck, you can ONLY qualify for the co-pay assistance if you have private insurance. If your mom is on any government programs (medicare, medicaid etc) then she won’t qualify for the co-pay assistance.

                             

                          • September 11, 2021 at 11:03 am
                          soonerjenn14
                          Participant
                            RL – just a thought from my own experience. My doctor prescribed me BRAF/MEK (my insurance approved it but I am BRAF V600)) but I got very sick on it, and after stopping/trying lower doses, etc. it was decided it just did not agree with me. They moved me to Tafinlar/Mekinist (also approved by my insurance) which I did better on, although they said most have worse side effects. The reason I mention this to you is that I noticed on my insurance bills it was about half the price of BRAF/MEK, around $13k per month versus the $25k.

                            I don’t know if this helps, as I am not familiar with Zelboraf/Cotellic. I hope you find the answers you are looking for and best of luck to you and your mom!

                            Jenn

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