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3 Years after Ipi
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3 Years after Ipi

› Forums › General Melanoma Community › 3 Years after Ipi

  • Post
    • March 26, 2018 at 7:12 am
    dbJoe
    Participant

      Hey folks.

      First off, let me say this board is tremendous. My doctors (not my surgeon), my wife, and friends seem to think I am knowledgeable regarding my disease, but the regulars here make me feel as if I'm in high school. Back when those in high school didn't have all the answers.

      My older brother was diagnosed 2010 MUP. Mets to lung and gut. He was unable to tolerate Ipi after his second(!) HD IL-2, and sadly passed in 2013. In my ignorance I didn't pay enough attention.

      I was diagnosed in January 2015, MUP. Mets in left supraclavicular and axillary nodes, which were removed in February. BRAF-. April through June I did Ipi, 4 infusions 3mg/kg every 3 weeks. Moderate AE's, mainly elevated ALT and rash. No tumor burden to observe.

      All subsequent scans have been negative (positive for me!) except for one or two sub-centimeter pulmonary nodules that were of the 'now you see um, now you don't' variety. Hunky dory, right?

      Now I read that OS and PFS stats are twice as high for those that caught the next train (PD-1, my plan 'B') ahead of Ipi. I've also learned I'm approaching the 3-year 'end of the tail' for ORR. I believe I am more anxious at this stage than I've been at any other. I know I should be shouting out I'm 'cancer free', but between you and me, I no longer make purchases based on length of warranty.

      So, is there anybody out there with these circumstances? I got 3, Naturally I'm looking for a pen pal going on 20..

      Thanx for being here, everyone.

      Joe

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    • Replies
        • March 26, 2018 at 3:14 pm
        obtu.bt
        Participant

          would like to be like you… I am in my first year yet….

            • March 26, 2018 at 4:46 pm
            Toby0987
            Participant

              I’m stage 3b since 2013 -met to axilla. Just got my 5 year chip and Doc said I am cancer free and no longer have to go back to see him EVER!  I didn’t do any treatment except surgery. Just wanted to pass on a good NED story. Rejoice in today because tommorrow isn’t promised to anyone!

            • March 26, 2018 at 8:54 pm
            mrsaxde
            Participant

              Hi Joe!

              Sounds like ipi did the job for you. That's great. It stopped the growth of my tumors for a short time but a couple months after I finished with it things started growing again. Then I moved to pembro.

              Pembro worked great. Cleared up everything that was going on, on my skin and in one lung. Then it stopped working. I've seen the stats about getting a PD-1 before ipi and I wonder if that would have made a difference for me. But when I got ipi you had to get it before insurance would pay for a PD-1. Keytruda was fairly new and Opdivo was approved while I was in the middle of the ipi infusions.

              I hope your response continues and you can go back to looking at the longer warranties when you buy stuff again!

              -Bill

              • March 26, 2018 at 9:22 pm
              Bubbles
              Participant

                Hey Joe,

                The thing about being NED (and sometimes even with "stable" disease)….is….IF you get there….the longer you stay there the better your odds are!!!  So no matter if ipi or anti-PD-1 or some other combo is your ticket….once you are there….it is good!  The longer you stay there the better!!!  And all the Kaplan Meier curves show 3 years as a super good break point!!!!  So, yes…maybe more folks GET to that point on anti-PD-1 than they do on ipi….but, YOU GOT THERE…and stayed there for 3 years.  I wish you a zillion more!  

                Here's a post…yes it's old…don't tell anon below!!!…but it is proof of the data nonetheless: 

                 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/melanoma-patientsalive-and-kicking-10.html

                And here is another that is more an overall look at durability of responses:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/12/durable-responses-to-pembro-c-word-cure.html

                So…HAPPY NEW YEAR TO YOU!!!  Live large.  

                PS  After brain and lung mets in 2010….and my last dose of nivo (Opdivo) in June 2013…I'm still here.

                Yours, Celeste

                • March 28, 2018 at 4:15 pm
                liberty04281
                Participant
                  3 years after Yervoy, doing well and live normal life. I am on 6 month scan now.
                    • April 2, 2018 at 10:55 pm
                    Boise Steve
                    Participant

                      3 1/2 years NED including a 2 year Polynoma trial.  

                      • May 9, 2018 at 1:50 pm
                      DoubleTT
                      Participant
                        Hello Steve. I did the 2 year Polynoma trial as well. I didnt make 20 months. It came back as a marble size tumour on my t12 vertebrae. Just finished 2 fractions of mega sbrt radiation. The docs say it I’ll be ablated/gone but because I am NRAS gene not BRAF drug treatment is required as adjuvant therapy. Doc wants Opdivo not Pembro to start. I will be told next visit when I start. In Canada govt pays for Opdivo with Yervoy. Dont want to use that free card yet. And docs dont want to try it yet as technically for now I am NED…So my personal insurance will pay for a treatment but only Pembro. So docs have appealed giving good evidence. Fingers crossed I get the Opdivo on it’s own to try and buy a few years more without more meats showing up. When it does there will be more opportunities for patients with NRAS gene mutations.Do you have NRAS or BRAF ? Very happy to be reading your story .Double TT
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