Home Forums Melanoma Diagnosis: Stage IV metastatic melanoma after Stevens Johnson

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  • #20955
    dflohr
    Participant

    My melanoma has spread to my esophagus one spot in my liver and two spots in my brain. I had Stevens Johnson last November probably from Zelboraf. I was hospitalized for a month so cannot go back on Zelboraf or use Yurivoy. It now makes finding treatments difficult. My doctor wants to start me on Temodar but I was wondering if anyone had any other ideas. I am going for a second opinion tomorrow to see if a different doctor has any other ideas.

    #58785
    Catherine Poole
    Keymaster

    I think a specialist’s appt. is a great idea. I’m not sure of your options with this complication. Let us know what you find out! Hang in there!

    #58786
    tasjacques
    Participant

    Hi,

    Sorry to hear this bad news. I understand in what dilemma you are in, since we face the same issue. Zel was working great till …. My husband had Stevens Johnson syndrome reaction, they think it was Zelboraf that caused. Still recovering.

    If you don’t mind, could we ask you why your onc does not want you on Yervoy? Our plan is start Yervoy next Wednesday.

    We hope there is something will work …

    Elenise

    #58787
    Catherine Poole
    Keymaster

    Here is a little article about this syndrome: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001854/

    It is a reaction to the drug unfortunately. I wonder if switching to a different BRAF/MEK combo might help? Otherwise immunotherapy is a good option.

    #58788
    PatW
    Participant

    If Stevens Johnson is essentially a severe allergic reaction to a drug (in this case, Zelboraf) I don’t understand why you can’t take Yervoy. Zelboraf and Yervoy are completely different.

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