5 years of Nivo every two weeks!!!
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5 years of Nivo every two weeks!!!

› Forums › General Melanoma Community › 5 years of Nivo every two weeks!!!

  • Post
    • January 25, 2019 at 7:06 pm
    ed williams
    Participant

    Today, I had my 126th treatment of my magic juice called Nivo!!!! 5 years ago I would have been happy with seeing Brady go to one more Super Bowl, who would have thought that he would go to 4 out of the next 5 years. Thanks Pats for a great ride and Bristol Myer Squibb for having some good research scientist on the payroll.

     

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  • Replies
      • January 25, 2019 at 8:16 pm
      jbronicki
      Participant

      Wow Ed, i feel like we are the lucky ones as well to have had you on this board for so long. Yeah Magic juice for sure!  While I can't celebrate your love of the Patriots, I can celebrate the fact that you are here and do so much for all of us 🙂  Your advice and knowledge and advocacy for yourself and for all of us are amazing.   You, Bubbles, and Janner are the trifecta of MPIP! 

        • January 26, 2019 at 5:02 pm
        ed williams
        Participant

        Thanks Jackie, keeps me out of trouble posting on melanoma, also keep the stress level down trying to stay up to date on current research. Take Care!!!!Ed

      • January 25, 2019 at 11:28 pm
      Bubbles
      Participant

      DUDE!!!  Ratties rock, but mice RULE!!!!  Way to gut it out!  Love you!  c

      Awe – thanks, Jackie!

        • January 26, 2019 at 5:04 pm
        ed williams
        Participant

        Thanks Celeste!!! So glad that you are feeling better after your last adventure with cancer!!! Lot's of Love from Canada!!!Ed 

      • January 26, 2019 at 3:36 pm
      SOLE
      Participant

      Wow! Are you NED Ed? or stable disease? I hope for the day this PD1 therapy becomes available for stage 2b to 3c (AJCC 8). Félicitations et merci pour tout le support que tu donnes à tous sur ce forum!

        • January 26, 2019 at 5:00 pm
        ed williams
        Participant

        Hi Sole, I am considered NEAD since Pet-ct last March showed no uptake, but scans still show mass in lung!!! Hope you are doing well!!! Ed 

        • January 27, 2019 at 11:54 pm
        SOLE
        Participant

        I am far from being an expert but isnt that mass dead tissue if it does not have uptake? Five years of Nivo is truly amazing. I'm sure you'll remain NEAD Ed and come March 2020, you'll be offered to stop after two years of no active SUV. You, Les, Janner and so many others are true inspirations. As for me, I will be going to my 2.5 year CT in about a month. Seem to still be holding on. Brain was declared ok this week (I'm not going to check it again unless shit hits the fan at some point). I just want to cross that 2.5 year mark, then the 3 year, then the 4 year, then the 5 year. Nothing is ever garanteed, that we all know but I'd like to cross those milestones. I'm doing all I can. So is everybody. Btw, since you are from Ottawa (if I'm not mistaken), have you seen the Sound and Light show on Parliement Hill? I did the usic to that show. Take care!

      • January 26, 2019 at 8:29 pm
      AMcReader
      Participant

      5 years of Nivo every two weeks? You are a champion!!! Wishing you many, many decades of NEAD/NED adventures and maybe, one day, no more super juice!

      • January 26, 2019 at 11:03 pm
      Scooby123
      Participant
      So pleased for you Ed, 126 treatments. Will you continue with treatment or have a break. You had any side effects at all.
      SCOOBY x
        • January 27, 2019 at 3:49 pm
        ed williams
        Participant

        Hi Scooby, for now I am going to continue, and as far as side effects, kind of the usual with Fatigue, some sore joints now and then. Lately, acid reflux has been a pain in the ass!!! I have been pretty lucky in the side effects side of things, some Vitiligo as well but on legs and arms so no big deal, it is only visible when I get too much sun and I am pretty careful in that department. Take Care!!!Ed

      • January 27, 2019 at 6:39 am
      Coragirl
      Participant

      That is amazing 5 years! Wishing you many more years of nead.Thank you for all the helpful information you provide to other patients and caregivers.

        • January 27, 2019 at 3:50 pm
        ed williams
        Participant

        Thanks for the kind words Amie!!!Ed 

      • January 27, 2019 at 6:17 pm
      lkb
      Participant

      Congrats on NEAD and thank you for all your postings!

      • January 28, 2019 at 2:24 am
      BrianP
      Participant

      Congrats Ed.  You are the Cal Ripken of the Anti-PD1 world!  Here's wishing you another 5 great years and many more with or without the magic juice.

      • January 28, 2019 at 4:53 pm
      sing123
      Participant

      Wow! So much congrats! 

      • January 29, 2019 at 12:32 am
      WithinMySkin
      Participant

      Wow, thats amazing, Ed! Congrats on making it 5 years! I'll be rooting for the Pats with you on Super Bowl Sunday 🙂

      Lauren

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