Home Forums Melanoma Diagnosis: Stage IV Decision Time Once Again

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  • #21244
    gostan
    Participant

    In 2008 I had a wide excision of my left forearm to remove a deep melanoma growth and shortly thereafter, a Radical left axillary lymphadenectomy. All has appeared to be clear until recently when I had severe cold/cough symptoms for two weeks in late March/early April that caused me to see my PCP and have a chest x-ray. I felt like a “wuss” but this was a great decision as a 2 cm nodule was detected on my right lung. Luckiest cold & cough in my life! Further tests have shown multiple small nodules on both lungs along with a few on my liver and spleen and stomach lining with biopsy results being positive for melanoma -with brain MRI being clear.

    I am located in Boston area and see Dr. Hodi @ Dana Farber. Lucky me, and as upset as I am, I really mean that I am very lucky, as I have been given the choice/option of waiting a bit for the Merck Phase 1 clinical trial of MK-3475 (PD-1) to open up in the next month or so, or to jump in on the BMS Phase 2 study of Nivolumab (PD-1) given sequentially with Ipilimumab in the next two weeks or so.

    Trying to figure out which way to go and make the best educated decision. I was all ready to just wait it out a bit more for the Merck PD-1 study to open up, when the BMS Phase 2 trial was put on the table for me this morning, but I am not sure that my mind can take a possible 4-6 week wait for the Merck treatments to begin.

    Decisions…Decisions…..

    Stan

    #60434
    Catherine Poole
    Keymaster

    Hi Stan, sorry to hear of these issues you are facing. I am very interested to see how this trial goes with the Pd1/Yervoy combo/sequential trial. I would be biased towards starting something now, rather than later. You might want to write a pros and cons list to help you decide. Let us know how you are doing.

    #60435
    gostan
    Participant

    Catherine

    The really good thing for all is that Dr. Hodi is seeing really good results in his patients participating in his ongoing PD-1 trials. Treatment options for some of us are much better today than they were 5 years ago.

    #60436
    PentiumIV
    Participant

    Prof. Jacob Schachter from Ella Institute for Research and Treatment of melanoma , Sheba Hospital , Israel, sees very encouraging results on Merck MK3475. And he and his team are one of the best melanoma teams in the world!

    #60437
    Shirley Z
    Participant

    Hi Stan,

    Really sorry to hear this. That had to be tough especially after being 5 yrs NED.

    The hardest decision I ever had to make in my life had to do with melanoma and treatment. You just have to go with your gut and not look back.

    Hope whatever you decide works out well for you. Hang in there.

    Shirley Z

    #60438
    Anonymous
    Guest

    Stan:

    I’d be highly disposed to start the BMS combo trial as well. If it’s now a phase II trial (there was one at MSK that was phase 1b) then that tells me the phase 1b results were good enough to proceed to phase II. Also, IPI and PD-1 work on two very different immune system “pathways” into the tumor (even though both drugs use monoclonal antibodies) so they should compliment each other instead of being antagonistic. That’s good.

    Please also consider that your brain scan showed no mets. That’s huge from a trial qualification point of view (and just plain great too). If BMS accepts those as baseline scans then you’re in, assumming you pass the other trial screening criteria. With this disease a clean brain scan may not be the case in 4-6 weeks. My wife Rachel and I found that out the hard way.

    You have to do what feels right for you but it’s nice to have choices now.

    Good luck and keep us posted!

    Jeff

    #60439
    kylez
    Participant

    Stan,

    FWIW what both Catherine and Jeff mentioned, would be my instincts. And there’s a small possibility of unexpected delays for a trial that hasn’t started yet, e.g., a bird in the hand… I’ve been lucky enough to have gotten Yervoy, but haven’t been on anti-PD1.

    The phase II dosages must have been tuned based the best dosage results of the phase Ib trial. A friend of mine was in that at Beth Israel for the BMS drug, starting at the lowest dose they tested at, and got bumped up (not sure how many times, at least once) to a higher dosage.

    – Kyle

    #60440
    gostan
    Participant

    Thx to all for your thoughts. My DF treatment team advised me yesterday that results to date on existing BMS PD-1 trials testing patients with varying dosages, show little difference in favorable results between those being given the standard dosage and those being given the higher dosage.

    #60441
    kylez
    Participant

    Stan, to clarify slightly what I posted, the person I know was in the solo agent BMS anti-PD1 phase 1B trial, no Yervoy. So not the combo trial (Yervoy and anti-PD1) that you’re looking at.

    Best of luck/mojo whichever way you go on this.

    #60442
    gostan
    Participant

    With the still unknown start date of the solo Merck PD-1 trial @ DF (could be 1 week or 4 weeks or ?) I am hoping to get into the BMS Phase 2 combo Yervoy/anti- PD-1 Trial as my overall health is good and I am opting for immediate treatment. Met with my surgeon yesterday to figure out the Trial’s 3 biopsy requirement issues. Trying to deal with both the disease and the process once again.

    #60443
    Catherine Poole
    Keymaster

    Good luck Stan, I hope all goes well. Please keep us up to date on your trial and how it is going for you. Any tips to other patients would be great! Take good care.

    #60444
    kylez
    Participant

    Stan, just saw another BMS anti-PD1 combo trial, with anti-KIR, apparently at three Boston locations including DF.

    If you ask Dr. Hodi about this one, would be interested what he says, and/or if they’re recruiting yet.

    – Kyle

    #60445
    Catherine Poole
    Keymaster

    I haven’t heard of Anti-kir, but here is the trial: http://clinicaltrials.gov/show/NCT01714739

    It may not be recruiting in two of the Boston locations however. It is another monoclonal antibody. I will try to find out more but it is in phase I so there won’t be much out there.

    #60446
    Shirley Z
    Participant

    Good Luck Stan! I’ll be praying for you that all goes well.

    Shirley Z

    #60447
    gostan
    Participant

    kylez wrote:

    Stan, just saw another BMS anti-PD1 combo trial, with anti-KIR, apparently at three Boston locations including DF.

    If you ask Dr. Hodi about this one, would be interested what he says, and/or if they’re recruiting yet.

    – Kyle

    Kyle, I would not qualify for this one as it requires one previous regimen. But when I see him next, I will try to get some info.

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