Home Forums Melanoma Diagnosis: Stage IV Check In & PD1 Question

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  • #21725
    zephyr66
    Participant

    HI everyone… it’s been a while. I just can’t find the time to come on the board and dedicate my time to it with life as it is. Amy has been on the BRAF/MEK trial for almost a year. It was this time last year I was desperate and Catherine gave me the info to talk with Dr. Ribas at UCLA. She went on the BRAF/MEK trial and tumors are still stable. But, overall, she has not been doing well and her quality of life has been relatively poor since being on the drug. The side effects are unmanageable. I, consequently, still have my hands very full running my business and taking care of the property as Amy can’t do much outside. Also, her little support dog Troy had to be put to sleep about three months ago and this was very difficult for her.

    Amy has been having high blood pressure (sometimes as high as 180/99) for a couple of months now, her kidney values are off, her neuropathy has worsened and the fatigue has worsened. Like I said, her quality of life is poor. She had an appointment today with her regular oncologist (melanoma specialist) Dr. Daniels at the VA who said he is pretty certain all these are being caused by the MEK inhibitor. He said it’s a very, very toxic drug and actually published a paper that took 6 years to be published because it was a negative review on the MEK inhibitor. She has an appt. with a renal specialist and is going to start on BP meds but Dr. Daniels supported her going off the BRAF/MEK in hopes of finding a PD1 trial. He even said perhaps just zelboraf might be an option (we know the risks and average length of time till it putters out).

    Does anyone know of a PD1 trial in southern California? Her treatments have included IPI, Zelboraf and radiation to the spine. No brain mets. If there is no PD1 trial, she will probably stay on trial depending upon what renal specialists say. If it is going to cause damage to her organs, she will not risk staying on drug. Like I said, she has little quality of life due to side effects. She also has terrible incontinence, intermittent diarrhea and has to wear a diaper. All this combined does not make for a happy life.

    Hope you all had a very good Christmas! Happy New Year. Hope it will be for all of us.

    Sylvia

    #63277
    Catherine Poole
    Keymaster

    Hi Sylvia,

    Good to hear from you, but sorry to hear about the issues you are facing. The PD1 trials are pretty well closed except for a few for ipi naive. You might try the PDL trials, and there is one in LA, but I’m uncertain where since the company is not getting back to me. But here is the listing: http://clinicaltrials.gov/ct2/show/NCT01693562

    PDL is very promising and I hope this may be an alternative choice. I’ve not heard that about the MEK as I learned it actually mitigated liver damage from the combination of BRAF and IPI. But I will be interested to read more.

    Take good care and let us know how things are going.

    #63278
    zephyr66
    Participant

    hi catherine,

    thanks so much for the reply. yes, apparently the MEK can be quite toxic. not something they say much about. dr. ribas agrees with the toxicity for amy and looks like the plan will be to reduce the MEK and see if that helps. doesn’t look like this will disqualify her for the trial. if it did, dr. daniels at the VA said there is already a MEK approved and it can be given in combination at the VA. he said a MEK is a MEK is a MEK. So, at least that feels a bit comforting in light that there are no PD1 trials open.

    hope your 2014 is off to a great start!

    sylvia

    #63279
    Cecelia
    Participant

    Sylvia, I just wanted to send words of support as you work through this trial. I have nothing but admiration and hope for you both.

    #63280
    zephyr66
    Participant

    cecilia,

    thank you so much! hope all is well with you.

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