Home Forums Melanoma Diagnosis: Stage IV recurrence of melanoma

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  • #21227
    frannny
    Participant

    I am the caregiver for my husband, we got the results of the recent Pet/CT.

    It shows hypermetabolic activity in the lung, pancreas, kidney, leg and liver and lymph nodes near the esophagus. We need auth to see his melanoma specialist, that he had already received treatment in the past with chemo, and immutherapy.

    we hope he is a candidate for IPI, I wonder if sometype of surgery can be done to remove some of the melanomas. any suggestions? thanks.

    #60299
    Catherine Poole
    Keymaster

    Where is your husband going for treatment? He should be seen by a specialist if possible. What part of the country do you live in?

    #60300
    frannny
    Participant

    We live about two hours away from Los Angeles.

    He is going back with the specialist in The Los Angeles clinic.

    #60301
    Dianap
    Participant

    Hello Franny,

    Whilst UK based,in October my recurrence (leg prior) was pancreas, buttock, lung, aortocaval lymph nodes, T1 bone mets, and then Jan 13 is was making it way towards my brain. This ‘tangerine’ size tumour has been removed successfully, over 4 days in Cambridge.

    I am on ippy at the moment. I had one does, then stopped to remove brain tumour, had second dose and next one 17th May. I am not sure how many of us are on ippy at the moment, but there is a thread showing peoples ‘journeys’ just a few topics further down and one on ippy the other day.

    I am sure someone will know all about where you are going in Los. Ang. and be able to give you more informative information.

    Don’t despair :)

    Kind regards and best wishes

    Diana

    #60302
    frannny
    Participant

    Hello to All,

    We saw the specialist dr today. no surgeries, but my husband will be tested for the BRAF mutation, and we got paperwork to read about a clinical trial MK- 3475.

    I am so thankfull that he can start on some treatment.

    May 18 there is a melanoma conference in Dowtown LA, dr. said i will hear all about MK-3475 and to call him if I have questions. He is so reassuring.

    for this trial, we don’t need auth from insurance.

    #60303
    Anonymous
    Guest

    Franny:

    I’m soooo glad you guys made it into the MK 3475 trial. When we were trying to get into the BMS equivalent at MSK, they told us that though accural of mucosal melanoma patients was small, they seemed to respond just like skin melanoma to PD-1. That’s good news!

    Jeff

    #60304
    frannny
    Participant

    Hi Jeff,

    We just got home from the clinic, the eligibilty criteria is taking time, more ct scans, biopsy and MRI of the brain. finally the appt is for May 23. I am thankful we are almost there, and desperate that is not soon enough. you know my husband is 54, father of 5 and we had our first grandchild.

    he used to work long hours, it is difficult to see him in pain these days, fatigued, and losing weight, hopefully the treatment will work.

    thanks, franny

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