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Progression after Nivo and Nivo + IPI, Phase 1 Trial next probably

Forums General Melanoma Community Progression after Nivo and Nivo + IPI, Phase 1 Trial next probably

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    guynamedbilly
    Participant

      I'm back again.  Just got back from the CT Scan three weeks after completing the fourth IPI + Nivo dose.  I handled the combo well, maybe too well.  Very few side effects except for it not working on me. 

      First diagnosed July 2017. I've had two local recurances to the back of my scalp, then in November 2018 I found it had progressed into my liver and lungs.  Now, it's all over me innards.  The ones in my liver did shrink, but they were replaced by nodules in my kidney, several in both lungs, and one beside my heart.  I decided there was not much point in continuing the Nivo only part of the trial because my first recurrances occured during Nivo adjuvant treatment, so while it might work, it seems more prudent to get on a different trial if any are available.

      So, now I'm going to truly be a lab rat, probably getting some phase 1 trial drug and hoping for the best.  It's very bizarre, because other than recovering from surgeries and radiation, I've felt healthy this whole time and still feel fine, even though I know that I'm not.

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        Bubbles
        Participant

          I'm sorry, Billy.  Melanoma sucks great big green stinky hairy wizard balls….and then some.  I understand completely.  Cancer has never caused me a single pain ~ but the "cures" have almost killed me!! Cognitively I realize that is obviously not the case, but I figure you know what I mean.  I also know how scary it is to be a Phase 1 rattie.  You don't know if you will die, be cured, or grow three heads.  However, ratties rock and sometimes…(while nivo wasn't the winning ticket for you)…ratties like me and my fellow 30 in 2010 helped change the world for many when we participated in one of the early phase 1 trials with that drug. May you and your fellow ratties create the wave of a new set of treatments that render you and ever so many others free of melanoma.

          Here's a little story I wrote about being in the first arm of my phase 1 trial in 2013 when I learned exactly which rattie I had been:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=Love+potion+%239

          Hang in there.  We can endure more and do more than some days make us feel as though we can.  Keep us posted.  I  wish you my best.  Celeste

            guynamedbilly
            Participant

              Thank you.  It's hard to keep focused, but I just try to think about the next step.  I will post when I have updates.  More information is better than less, and I was looking for all the information I could get when I started this fight.  Hopefully it helps someone and maybe even myself.

              jen.bren
              Participant

                Hi Celeste, I have recently come to this support group and have been reading some threads and posts. I have to say, you make me laugh, you have a great sense of humor!!!

                I am 14 years NED of stage 3 melanoma that I  had two times and found a nodule of some sort on my leg again…I will be having a PET scan on the 11th of April and an easy removal of the nodule in my calf on the 18th.  Needless to say i’ve been here browsing the threads and looking for hope. 

                I am scared $/!t….!

                 

                Bubbles
                Participant

                  Hi Jen,

                  Not sure what your thinking I am funny says about you!!  HA!!!  But glad to have provided a smile or two.  Hopefully, your "nodule" is something entirely NON melanoma related.  However, should it be melanoma, adjuvant therapies are now approved (and have been proven to be very effective) for Stage III melanoma peeps.  Here are a zillion related articles and posts: 

                  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant  

                  Hang in there.  Will keep fingers and toes crossed for you.  Keep us posted.  Celeste

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