Home Forums Melanoma Diagnosis: Stage IV ? misinformed Derm

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  • #21293
    msue5
    Participant

    Catherine,

    I have 2 questions for you. I know ASCO is soon and wonder what sort of studies a person like me with autoimmune disease should I be looking at since a lot of the buzz seems to be about immunotherapy and I would not qualify. I am BRAF pos which brings me to my second question. I had a skin check at my local derm last week and saw a new Dr who was trying to sort through my complicated history. She saw that initially I tested BRAF neg and 2nd test was positive. She said this was concerning that my Melanoma changed to BRAF pos which in her mind might change my prognosis. I told her that I was told the newer test is more sensitive and that was the reason for the change. I decided I would find out for myself. So is there any truth to this or is she just uninformed?

    She also said she was surprised that anyone would prescribe Yervoy with my lupus. So of course now I’m worried. I had Zelboraf on and off before Yervoy and quickly developed 2 squamous cells so it was decided that Yervoy was a better choice especially since my lupus is stable and my metastisis are contained to lymph system. I hate second guessing my decisions and now with neuropathy showing up so quickly I am worried I have made the wrong choice. Any thoughts?

    Mary Sue

    #60852
    Catherine Poole
    Keymaster

    You should be seeing a medical oncologist, not a dermatologist for your therapy decisions. I have not heard of a tumor changing braf status, but instead the new testing is more sensitive. There is a study that shows Braf positive to be more risky but nothing terribly convincing. I would highly suggest you see someone like:

    Suzanne L. Topalian, M.D.

    Director, Melanoma Program 410-616-7660

    Johns Hopkins

    for an opinion, that would be closest for the D.C. area if I am correct in your location. She can give you a solid opinion regarding your autoimmune issues and therapies.

    #60853
    msue5
    Participant

    The derm is my local regular dermatologit who I go to for skin checks in between visits to Washington Hospital Center Melanoma Clinic and they confer with my local Onc. Also had opinions from Georgetown University (Dr Michael Atkins). He was the Onc who really didn’t want me to take Yervoy. Washington Hospital Center and Georgetown have merged some of their clinics and the Melanoma Clinic is one of them. If ever I fear I am not getting the right advice I will go for another opinion. As far as my future options are concerned I still can restart Zelboraf which I was starting to respond to. We were monitoring an enlarged rt axillary node which disappeared after 1 week on Zelboraf and returned after 1 week off Zelboraf. But it was decided that Yervoy was more appropriate since my tumor burden was low at the time and finally Dr. Atkins agreed it was worth the risk. I suppose after some of the new immunotherapies have been approved they could be prescribed off label for me as the Yervoy is now. Are there any Braf combinations I could be looking at if Yervoy decides to mess with my lupus and I have stop?

    Mary Sue

    #60854
    msue5
    Participant

    I forgot to mention that a Northern Va Cancer support facility called Life with Cancer is having a presentation May 30 at 6:30 pm about Melanoma and will include Evan Lipson MD from Hopkins. Maybe I can get my second opinion from Hopkins over coffee and donuts!

    The program is free but registration is required. This would be convenient for anyone in the D.C. area. The number to register is 703 776 2820 or online at http://www.lifewithcancer.org. I am planning to attend.

    Mary Sue

    #60855
    Catherine Poole
    Keymaster

    Although excellent hospital centers, neither Georgetown or Washington Hospital Center have the oncology specialist you need to see for another opinion. I would see the specialist I listed for another opinion if possible.

    #60856
    msue5
    Participant

    Thanks Catherine. I will consider this. I’m just not sure what else they can offer me. If the Yervoy vs Zelboraf issue comes up again I will definitely seek an opinion at Hopkins. One of the things that really interests me is an on/off schedule of Zelboraf. Is there evidence yet of any success with this. I am beginning to think of plan B and plan C. My melanoma is still on the run. I wish I had gotten new scans before I started the Yervoy so I could have a clearer picture of its success. I have inflammed nodes in my neck that were not evident before Yervoy but also areas that were known and measurable so they can compare. My last Pet/Ct was in Feb for 6 wks post cybetknife and things had already progressed in those 6 wks so now how do they tell if your having success when areas are popping up that you didn’t even know were there. Would they consider me a non responder because of progression even those areas could have been there before the Yervoy. If this is an issue that will be a good time for a consult at Hopkins. This is hitting me hard this week but the prednisone is also adding to my anxiety and mood swings.Thanks for listening and your expert advice.

    Mary Sue

    #60857
    Catherine Poole
    Keymaster

    Yervoy has a 15 to 20% response rate. Sometimes you progress and then respond. But I can’t emphasize enough how important it is to have an expert evaluating this. I wouldn’t put that off.

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