Home Forums Newly Diagnosed Stage III/IV Recently diagnosed/Advise/Questions

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  • #22365
    clthomas2131
    Participant

    Just recently diagnosed on 1/26 with Stage 4 melanoma. According to PET scan it is in my neck lympnodes and a small spot in 1 lung. Found out today that I do have a BRAF mution of L597P which from what I was told is extremely rare…

    First oncologist said he wants to do neck surgery and start me on pill therapy.

    Went to second opinion at Cancer Center of Excellence(UAB) and met with an oncologist that specializes in melanoma today. He is sending me for a head MRI and a ENT visit to rule out any other tumors but suggests due to the BRAF mutation most of current treatments would not do me any good because of the type of mutation I have. His suggestion is no surgery at first, but to start an IV treatment due to my age and health and assuming nothing going on in my head he suggested we could go into a trial and be aggressive and do Yervoy/Interferon ( aggressive) or Yervoy/Avastin( middle of the road) or just Yervoy. He said if I had surgery first with recovery time it would put off treatment and I could have more tumors pop up while we are waiting…

    Advise? Suggestions? Questions we should of asked?

    #66358
    Catherine Poole
    Keymaster

    Can you go for another opinion. Interferon does not show overall survival advantage and aggressive in this instance doesn’t mean better. Probably the best therapy to start on is the BRAF/MEK combo by Glaxo (Mekinist/Taflinar) It is shown to give a good response up to two years, then you would consider the immunotherapies, the PD1 being the first choice. I don’t understand what the UAB person is saying about your BRAF mutation. Is it V600? Can you get to Nashville? Sarah Cannon or Vanderbilt? Here is the contact for Sarah Cannon (Dr. Jeff Infante is excellent)

    Sarah Cannon Cancer Center

    At Centennial Medical Center

    230 25th Avenue North

    Nashville, TN 37203

    615-342-1919

    #66359
    clthomas2131
    Participant

    Catherine,

    He said I have the BRAF gene but it is mutated to L597P which he said is very rare and only a small % of people have it. He said the BRAF/MEK combo has not shown good results working on that type of mutation. Which is why he suppsed to go with Yervoy and maybe add one of the other drugs also. I saw the test results that were run for the BRAF. They were emailed to me from the first oncologist I saw. He sent them yesterday while I was in meeting with the new oncologist. 2 different doctors and 2 totally differnet plans of treatment.

    #66360
    Catherine Poole
    Keymaster

    So perhaps only the MEK drug would work for you. Sorry I didn’t see that your mutation was rare in your first post. I don’t think avastin or interferon have been proven to have a good response with melanoma. I would speculate that avastin might be a better choice because of lower toxicity. If you did progress you could go straight to the PD1 drugs. Have you looked at the PD1 trials? The Pd1 combined with IPI might be a good choice: https://clinicaltrials.gov/show/NCT02186249

    We do offer travel scholarships.

    #66361
    clthomas2131
    Participant

    Hi Catherine,

    I have seen the PD1/IPI trial. Getting to Sarah Cannon wouldn’t be bad only 3 hours away but I have to see about costs and insurance. Any advice on that end? Not sure what my first step should be.

    Thanks!

    #66362
    Linny
    Participant

    I found this on line. I hope it’s the right place:

    http://tristarsarahcannon.com/patients-visitors/insurance.dot” class=”bbcode_url”>http://tristarsarahcannon.com/patients-visitors/insurance.dot

    #66363
    clthomas2131
    Participant

    Thanks Linny! I will check it out.

    #66364
    Catherine Poole
    Keymaster

    Absolutely, and if you write me at cpoole@melanomainternational.org I will give you a direct contact there. They do nothing but research there and are quite supportive of patients!

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