Home Forums Melanoma Diagnosis: Stage IV update on my condition

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  • #20773
    Jonathan
    Participant

    It’s been a while since I posted, but I just had another set of scans, and things are generally stable or shrinking (the ones that were irradiated have shrunk a great deal). Clearly, I have a very lethargic sort of melanoma (or as my old oncologist said about 9 years ago, “either your immune system is very smart, or your melanoma is very dumb”). The problem is that at least one new small met (about 1.5 cms) has definitely showed up in my small bowel, and that worries my oncologist. So he is strongly recommending another course of Ipi (the last one did show some response). So that’s what I’m going to do in about 3 or 4 weeks. I’m hoping for another decent outcome.

    Just as an aside, there’s no question in his mind what he’d like to do – get me on either the Merck or BMS anti-PD1 trial, but he’s done all he can for those of us who had the CT-011 drug, and the answer from those drug companies is that it’s clearly a total disqualification – door is absolutely shut. A real bummer….So those of you who have a shot at a slot on one of those trials, for heaven’s sake, grab it. He says the Merck results thus far look as good, or better than, the BMS version.

    Best,

    Jonathan

    #57596
    Shirley Z
    Participant

    Hi Jonathan,

    Happy to hear the good news on the shrinkage, but also very sorry to hear about the met in the small bowel.

    I like your old oncologist’s therory. Sometimes I feel that is the case with me. I sometimes wonder when or if the bomb will drop. Don’t want to sound negative but I really wonder sometimes how I have been so fortunate.

    It really stinks with some of these trials. How doing one can disqualify you from others.

    My money is on you Jonathan. Lets hope the IPI kicks butt.

    You’re always in my prayers.

    Shirley Z

    #57597
    Anonymous
    Guest

    Jonathan! I was think about you today and was wondering how you’re doing.

    What Shirley said! Sorry to here about the new met but I’m really glad everything else is going ok, especially the shrinking mets(!).

    Yeah, it sucks that you’re DQ’d by an old PD-1 taken a long time ago that just didn’t work. Come on, what are BMS and Merk afraid of, like you might get a response or something?!

    Hang in there and my money is on you too.

    Jeff

    #57598
    jamesa
    Participant

    Jonathan,

    Happy to see your post. Your attitude is so great that you can beat this new met.

    Good Luck with your next round of IPI.

    James

    #57599
    jamesa
    Participant

    Jonathan,

    While looking at clinical trials, I came across this BMS trial combinig IPI & PD1:

    Dose-escalation Study of Combination BMS-936558 (MDX-1106) and Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma:

    http://clinicaltrials.gov/show/NCT01024231

    I am guessing that Mario tried to get you in this trial amd BMS refused because you participated in Curetech trial. If this is the case, I am so sorry that you cannot get in this trial.

    James

    #57600
    Catherine Poole
    Keymaster

    The issue is you can’t have prior PD1 to enter any of the PD1 trials. Jonathan was in the Curetech trial for a PD1 that didn’t bring a response and so that disqualifies him for other PD1 trials. If these PD1s move to approval quickly (a giant feat) then he would be able to get the other brands of PD1. Thanks for checking in Jonathan, there are so many here you have helped and they are wanting to know how you are. Here’s to slow growth if any!

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