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How many ipi/nivo combos have you had

Forums General Melanoma Community How many ipi/nivo combos have you had

  • Post
    Bennickliz
    Participant

      I’m about to embark on my fifth round of ipi/nivo combo with radiation to both adrenal glands in the next few weeks.  I’ve had basically zero side effects with treatment.  Been on nivo maintenance in between ipi doses. Had radiation to left adrenal about 3 years ago.  Radiation to femur four years ago.  My tumors shrink, then grow.  Right now they’re about 4cm in size.  The smallest about 2cm.  Diagnosed 5 years ago right out of the gate with stage 4, unknown primary.  My subqs have disappeared.  

      I’m wondering if anyone else has had multiple doses of the combo and radiation before and if side effects have increased along the way.  No other tumors at this time.  I feel very fortunate to be where I am at this point, but i am concerned about culmative side effects.

      Thank you

      Becky

       

       

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    • Replies
        Bubbles
        Participant

          Goodness, Becky.  You are certainly going through it.  Radiation does have its own side effects, often consisting of fatigue, but has NOT been found to cause any worsening of side effects produced by immunotherapy.  Here are tons of reports (many are addressing brain mets, but the data applies no matter the lesion):  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  

          As to your other question.  I may not be understanding all of your particulars…..but, I'm not sure there are going to be those who can answer your question about proceeding to a fifth dose of the ipi/nivo combo.  Generally, the ipi/nivo combo is prescribed as 4 doses of the combo every three weeks.  That phase is followed by nivo alone every 2 wks or every 4 weeks (depending on the dose used) with no intermittent doses or additional doses of the combo after the initial 4.  Here is a link to the prescriptive info from the drug company:  http://www.opdivohcp.com/metastatic-melanoma-regimen/dosing/dosing-administration  

          Now, I do have dear ones who completed the treatment course as I described, but then recurred and had to kinda start over….and maybe that is what you are dealing with.  In that scenario, some folks do have to stop due to side effects, but that is also true the first time around.  Here are lots of reports on nivo or ipi/nivo after progression on those same drugs: 

           https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=response+after+nivolumab  

          Not sure it I've helped you much.  But I wish you my best and perhaps others can chime in.  Yours, celeste

          MarkR
          Participant

            Hi Becky

            I was in the adjuvant clinical trial taking lower level doses of Ipi/Nivo before they upped me to the full dose. We discussed whether I should have the last dose of Ipi/Nivo that I actually had as the consultants were becoming concerned I had had enough.  With very few side effects (bit tired and dry mouth) I was keen to press on.  Two weeks after my last dose the side effects kicked in and I had an enlarged pituitary gland and liver issues.  

            Personally I still feel I made the right choice as shortly after the side effects kicked in I could feel the Met reduce in size (I have a 4cm met in my arm) and the side effects sound a lot worse than they were.  5 months later and I have just had a bout of severe diahorrea that they aren’t quite sure is down to an immune reaction or bacterial infection.  Another dose of steroids has done the job and I am weaning off at a fast pace over the next couple of weeks.

            hope this helps

            mark

              Bennickliz
              Participant

                Oops!  Made a mistake. I’ve had two rounds of ipi by itself, 2 rounds of combo. So I’ll be going for third combo. You guys probably thought I was crazy!  Well maybe I am with going for ipi for the fifth time,  

                I do get partial response with the ipi, but these pesky adrenal tumors just won’t go away.  I realize I’m probably an anomaly with so much treatment with same  drugs but it does work for me.  

                Becky

                 

                 

                 

                MelanomaMike
                Participant
                  Hi Becky, nice to meet you, ya i was gunna say! You did the Ipi/Nivo combo that many times in a row!! Jeezlahweez! Lol..anyways, hope it all works for you & keep in touch with your progress!
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