Home Forums Melanoma Diagnosis: Stage IV brain mets – please help – looking for options

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  • #21667
    JManarite
    Participant

    I am advocating for a friend who has been chasing brain mets with radiation and MRI. She is looking for options, but every trial we find requires they be absent, or controlled for 8 weeks. Too hard to do for her. She is still active, and does landscaping. Just can’t find a treatment.

    Dx 2006 – AMelanotic; Clark IV, nodular type; 5.6 mm deep; margins +; sentinel node neg; Stage T4b

    Multiple surgeries. Breast met surgery 2009 – BRAF neg.

    March 2012 – MRI shows brain mets.

    WBRT/ Cyberknife

    She’s had Yervoy twice – responded first time, but not second time.

    She has failed 1 chemo – temodar, I believe

    ANY IDEAS? Thank you so much.

    #62972
    Catherine Poole
    Keymaster

    Please see our webinar on brain radiation for some good background on this subject: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.UoYU_cRQHJc

    Your friend, as you are finding out, can’t qualify for a clinical trial as long as her disease in her brain is unstable. Are these new mets showing up, or old ones recurring? Where is she getting treatment? Perhaps another radiologist could give an opinion?

    Does she have disease elsewhere? I would think that PD1 would be a good option or ADC. Is she BRAF neg? We’re here to help!

    #62973
    Celeste Morris
    Participant

    It is clear your friend has been through a great deal. I am sorry for that. I hope she is being seen by melanoma specialists at a melanoma center. That makes a huge difference in everything from care provided, to how labs and scans are read, as well availability of the latest treatments. Since she was BRAF negative when her testing was done, that certainly limits that therapy as an option. However, some folks are finding on repeating the test at a melanoma center they are actually positive. I don’t want to give you false hope here but that has happened. As yucky as it is…repeated treatments of stereotactic radiation can be used to treat brain mets as they crop up. I posted the latest articles and some info about them on brain mets in melanoma when they came out of ASCO in June on my blog June 2, 2013 (just google “chaotically precise”), but I am not sure how much they will help you given the treatments your friend has already had. There is good information posted on this site as well. And you are correct about needing to get the brain mets under control before you can enroll in most trials. I’ve been down that road myself. I wish you both my very best. Yours, celeste

    #62974
    Celeste Morris
    Participant

    One more thought….

    Just found article…October 2013, vol 20, #4, in Cancer Control, Novel Treatment for Melanoma Brain Metastasis. It gives a review of the science and current treatments as well as a list of clinical trials. Perhaps you could contact the author… It says direct correspondence to…Peter A. Forsyth MD email – peter.forsyth@moffitt.org

    Will be posting some info from the article on my blog as soon as I can if you are unable to access the article yourself. C

    #62975
    JManarite
    Participant

    I think I’d like to try and set up a call between myself, my friend, and the Hotline. Or someone knowlegedable about brain mets.

    I called the Hotline and left a message. Do people answer the Hotline on weekends?

    Thanks so much.

    #62976
    Catherine Poole
    Keymaster

    Yes, we answer our phones 7 days a week and will get back to you promptly.

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