How long….
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How long….

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  • Post
    • December 22, 2017 at 7:35 pm
    smiller
    Participant

      After 3 rounds of the opdivo-yervoy  treatment ( stage four)  my husband had to stop because of side effects. He was hospitalized for five days and taken off treatment until he gained some strength and weight back. He also was given steroids. When he returned for a scan three months after his hospital stay all tumors were still shrinking. No treatment was continued.

    He returned for a scan this week and all tumors continue to shrink.

     I am so thankful that  the opdivo-yervoy are continuing to work.  He has stated that he does not want to start any new treatment of any kind.  I am just curious as to how long the tumors can continue to shrink with no treatment being given.  I know no one has that knowledge–I would just like some opinions and insight on what others may think!

     It would be my desire for him to take the maintaince part of this treatment but I do respect his wishes of saying no because now that he feels somewhat better he doesnt want to go through the side effects again.

     

    Thank you all!

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  • Replies
      • December 22, 2017 at 10:34 pm
      jennunicorn
      Participant

      Excellent news that just three infusions and it's working! I will say that the side effects he experienced are most likely from the yervoy, not the opdivo, and maintanence is opdivo only infusions. Yervoy is a bad boy and likes to give lots of people issues. After my 4th infusion of the two drugs I had a 3 week fever and high liver enzymes and felt absolutely awful. Skipped on the first maintenance dose and then did all the opdivo only infusions for 10 months with no problems.

      I understand his hesitation and I am so glad it is working so early, but I would be most comfortable doing at least some maintanence. 

      What does his oncologist suggest?

        • December 22, 2017 at 10:44 pm
        smiller
        Participant

         Well we walked out of the dr.s office with the doctor saying nothing about further treatment!  My husband and I were so excited to hear the news of the tumors shrinking that we didn't mention further treatment and neither the oncologist.  I believe his mindset is if its still continuing to work he will let my husband decide to start the treatment again.  He is adament that he will do no further treatment!

      • December 23, 2017 at 2:03 am
      ed williams
      Participant

      Hi anon, if you look at the 3 year data from checkmate 067 of Ipi/Nivo you see some very impressive overall survival data. Many of the trial patients were similar to your husbands situation, where they had to stop after toxicity early on yet they continue to do great now almost 4 years later for most of us in this study. http://www.nejm.org/doi/full/10.1056/NEJMoa1709684#iid=f01

        • December 23, 2017 at 3:36 am
        Bubbles
        Participant

        Sorry for the side effects, but very glad that your husband is seeing improvement!!!  To echo what Ed noted…here is one study with another link within: 

         http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html  

        Ipi (in the ipi/nivo combo) is absolutely the bad boy of side effects.  While adverse events are possible on anti-PD-1 alone (no matter if it is Nivolumab/Opdivo or Pembrolizumab/Keytruda) they are much less prevalent than those on ipi.  So…most people who can't tolerate the ipi/nivo combo, do very well on nivo alone.  

        It is all very personal and with melanoma there are no easy answers.  I wish you my best.  celeste

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