Home Forums Melanoma Diagnosis: Stage IV What options left after multiple treatment Failures??

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  • #22235
    Linda G
    Participant

    Hello again. I have been on this board before and again looking for something. My husband Vince has mucosal melanona and was previously treated with surgery, radiation, Yervot, Keytruda, all of which have failed. He doesn’t have any of the “normal” melanoma genetic mutations like BRAF, CKit or NRAS. His BRAF was mutated at the L597q and Zelboraf was tried as a shot in the dark. One and a half weeks into it he broke out with head toe body rash, fever and now eye inflammation and blurred vision. and itching. So again, treatment is being stopped. He was diagnosed as stage IV in February when first diagnosed. The cancer is now in his liver, spine, lungs, kidneys and the sinus area is growing back. Many if not most of the clinical trials are geared toward BRAF 600 mutations and other “normal” mutations. What treatment options are left besides chemo. He doesn’t want chemo! We are considering palliative care ( a nice way to say hospice) but he still has some fight left in him and is up and able to get around and feels surprisingly good except for the drug side effects. Feeling discouraged now!

    #65797
    kylez
    Participant

    Linda, that must be scary as well as be very, very frustrating for both of you.

    Where are you located? Here’s a U.S. trial specifically for wild type melanomas, MEK + CDK4/6: http://clinicaltrials.gov/ct2/show/NCT02065063” class=”bbcode_url”>http://clinicaltrials.gov/ct2/show/NCT02065063. I think somebody posted their (quite positive) experiences on another forum. But it may be limited to cutaneous melanoma in “part 2” as opposed to “part 1” which doesn’t state that restriction.

    Here’s another one but it’s at UCSF (San Francisco) only. AKT+MEK: http://clinicaltrials.gov/ct2/show/NCT01941927” class=”bbcode_url”>http://clinicaltrials.gov/ct2/show/NCT01941927. It does not appear to be restricted to cutaneous melanoma at least on the web site listing. I did meet somebody who is BRAF wild type. He had extensive metastases and got a very fast initial response, like within 2 weeks. I met the person at a now-defunct melanoma support group, so I don’t know how he’s doing now.

    – Kyle

    #65798
    odonoghue80
    Participant

    Hi Linda, I think you should definitely follow up with those clinical trials that Kyle posted. I feel terrible for you and your husband right now, and I understand where you are at. I’ve also feel that I’ve run out of options. But, my doctors recommend to me that I should do chemo and radiation. So I currently am doing Taxol/Carbo – I’ve done two rounds of it now and I feel much better. Now I’m doing 10 rounds of radiation and then going back for a few rounds of the chemo. Hopefully it will continue to shrink some tumors and then move on to a better, more durable treatment. I know chemo isn’t a cure, but it may buy you the time you need to get to another treatment.

    Also, have you contacted the NIH in Maryland for treatment? I don’t know if they have trials for you but worth a call. Also, have you looked at IL2? Very toxic but might be worth looking into. Is your your husband very weak or is he feeling ok? Can you travel for consultations? Certainly worth looking up these options. I don’t know if they would work but make the calls.

    Good Luck,

    Shane

    #65799
    kylez
    Participant

    A thread here discusses another class of drugs, one that I’ve never seen anybody say they’re taking on any forums — “Pan-Raf” inhibitors, some of which don’t have any mutation requirement. But may be a shot in the dark if there’s no testimonials out there.

    http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34791” class=”bbcode_url”>http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34791

    One for “WP1066” that clinicaltrials.gov says isn’t open yet, but I’ve found the only way to get the real status is to call the trial coordinator at the site: http://clinicaltrials.gov/ct2/show/NCT01904123” class=”bbcode_url”>http://clinicaltrials.gov/ct2/show/NCT01904123

    One for AKT+MEK that clinicaltrials.gov says isn’t recruiting but again never know till call coordinator: http://clinicaltrials.gov/ct2/show/NCT01904123” class=”bbcode_url”>http://clinicaltrials.gov/ct2/show/NCT01904123

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