Home Forums Melanoma Diagnosis: Stage IV Zelboraf may have quit working, what now, HELP

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  • #20523
    dallyup4
    Participant

    Been on Zel for almost 14 mos, responded great, all lesions gone in lungs and liver, yea! Had 3 mets in my brain in the beginning, gamma knife trtmnt twice, first one completely gone, 2nd one started growing 6 mos after and removed 9/2011, 3rd one stayed same until my quarterly scan on Tues, started growing again, 8mm now so taking that one out next week. Everything the same in the rest of my body except now I have a lump on my breast! I think it is nothing, Dr thinks it is Melanoma, doing biopsy next wk as well. If it is Melanoma, the Dr says I can’t continue on Zel! Now what? Dr says IPI but that really scares me, any ideas? Am BRef positive of course and had chemo in the beginning, Cisplatin, Vinblastine and Temador. Had 7 lesions in my lungs, 2 on liver and 1 in pelvis which was the only one surgically removed and sent to the lab to grow TIL cells, now they are all gone.

    Also, something interesting, I had Melanoma in 1975 on my ankle, removed it and lymph nodes in groin, no reoccurance for 35 years! Thought I would beat it again, darn!

    Anyway, looking for advice, thx Sue

    #55740
    Catherine Poole
    Keymaster

    Check out our discussion about the braf/mek combination therapy under Zephyr’s post about recurrence. This is coming up for approval by the FDA. Also, why are your afraid of IPI/Yervoy? I’ve seen its side affect profile to be less harsh than some of the BRAF issues. I think immunotherapy is a good choice when the BRAF is no longer getting a response.

    #55741
    dallyup4
    Participant

    Thanks for your reply Catherine, I did read the posts you mentioned. I have read a little more about Ipi since I posted last and feel a little better about it. Yes, Zel has many side effects and I have experienced just about every one of them. They don’t seem to go away either although I do seem to get a break every once in awhile. One thing that scared me about the Ipi was the colin/gi problems. I have had such bad diarrhea lately but at least it wasn’t bad enough to kill me. But I have read a lot of success stories with Ipi and have been hoping to reduce the dosage of Zel or get off it completely so I guess this is my chance. I don’t know much about the combo, I will research more, but I really am tired of all the stuff that goes with Zel. It’s just that it was working so well for me that I was willing to put up with the bad that came with it, now I am scared that the Ipi won’t work for me.

    #55742
    Catherine Poole
    Keymaster

    I hope you have a better experience with the Yervoy. It does seem a bit milder thanthe zelboraf. For the diahrea you should catch it early, and report it early. It gained a bad reputation in the beginning because of the colitis, but now folks know what to look for and catch it early. PD1, if you can find it, is also a good one to get and less side affects I’ve seen than the other two drugs. Let us know how you are doing.

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