Home Forums Melanoma Diagnosis: Stage IV Running out of options

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  • #21308
    debbie449
    Participant

    I am a frequent reader; first time poster.

    My 54 year old husband had a recurrence of Melanoma which was diagnosed in December of 2012.

    His prior melanoma was on his lower back. It was removed in 2002. He completed a month of Interferon infusions followed by shots at home. The protocol was for one year. He made it four months before peripheral neuropathy set in. The treatment worked for nine years.

    In December, after complaining of a back ache, he got an MRI. The melanoma was back in his bones and right lung. He was immediately tested for the BRAF mutation and is positive. In early January, he began Zelboraf with immediate results. After a lot of research and consultation with docs, he enrolled in a clinical trial at Dartmouth Hitchcock combining IL2 with Zelboraf. He began receiving IL2 on February 15. Over the next 30 days, he received 20 IL2 infusions.

    As soon as he was released from the hospital, he began experiencing shortness of breath. We discovered that he had a plueral effusion on his left lung. After four thoracentesis, he had a Pleurodesis at which point the doctors discovers a significant amount of disease in his pleural tissue. These tumors were not present on the scans prior to IL2. It was determined that Zelboraf had stopped working.

    Because of this new development, and the rapid rate at which the tumor was growing, the doctors recommended he start on Yervoy + Abraxane and Carboplatin. On Monday of this week, he had a six week scan to assess the effectiveness of the chemo. The disease continues to progress… it is now in his liver along with additional mets on his rib cage. We realize that six weeks is not enough time to assess the effectiveness of the Yervoy. Unfortunately, he has been having severe colitis from the Yervoy. He was supposed to get it today, but it was held for a week. We are hopeful that he can get it next week.

    At this point, we are really scared. The cancer seems to be moving like a runaway train.

    Any suggestions on getting PD1 for compassionate care? I fear he is too sick to participate in any trials.

    Thanks

    Debbie

    #60906
    Catherine Poole
    Keymaster

    I’m a little confused on the regimens your husband has recieved so far. I wonder how he might do going back on Zelboraf alone? You could possibly get the BRAF/MEK combo from Glaxo by compassionate use, I have heard of two cases so far getting it through their doctors. I would definitely have a consultation with someone at perhaps Mass general, Keith Flaherty is excellent and get his suggestions. If you husband can’t travel, see if you can send his records and get a phone consult. He needs another opinion. Many of the drugs you mention have very little response rate for melanoma. But he may come back with the Zelboraf reinduction. If you would like to discuss on the phone you can call me on our helpline: 866-463-6663 toll free.

    #60907
    Jonathan
    Participant

    You will have to weigh your oncologist’s opinion along with what you get on this forum (especially since we don’t know the specifics of his condition), but just to emphasize as you say, 6 weeks is too early to tell if he’s going to get a response with Yervoy, and colitis at least shows it’s having some effect, and such reactions are most common and severe among responders (not a perfect indicator, but still…). So if you can, and your oncologist isn’t discouraged, I’d say hanging tough with the Yervoy for another 6 weeks is the best option immediately.

    Best wishes,

    Jonathan

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