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It was bound to happen
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It was bound to happen

› Forums › General Melanoma Community › It was bound to happen

  • Post
    • August 13, 2018 at 7:34 pm
    Nick C
    Participant

      I went a year and a half thru three different treatments with out any side effects. Then with one week to go before my last IPI treatment, they hit. Fevers, fatigue, numbness/tingling in hands and fingers, balance issues, weight lose (10 lbs.),liver enzymes off the chart and dirrahea.Most of these have resolved themselves. But because of the liver toxicity, we have decided to forego the the last IPI treatment. Recent scan showed some progression and some with no change. The next scan will, hopefully, determine if there is true progression or inflammation. We are now looking for a new trial. If none are available, we will consider radiation on a couple of the mets. Three of the four are just under the skin, with two protruding.

      So for now we are in a holding pattern. Latest labs were the best in the last year and a half…everything is in the normal range. Go figure.

      Wishing all of ou the best. Keep on fighting on.

      Nick

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    • Replies
        • August 14, 2018 at 3:50 pm
        adrianc
        Participant

          Sorry to hear about your immunotherapy results.Have your tumours been tested for  gene mutations?Genetic testing could open the way to targeted therapies as your next line of treatment.Radiation is a viable option and could slow down the disease but it wont't cure you.Hang in there and keep the fight.

            • August 14, 2018 at 11:56 pm
            Mark_DC
            Participant

              Nick – am sorry to hear this. Any chance of doing TVEC or what texmelanomex tried (i think pv10?) with pembro? It might get the pembro going. It might be difficult to get this treatment approved (perhaps a trial?) but it might work for the more accessible melanomas.

              After one year of pembro barely working (stable disease slightly worsening) adding TVEC seems to be helping me (dont want to jinx this though its still touch and go)

              good luck and best wishes (i only made it through one ipi before having to give up because of side effects)

              Mark

               

              • August 15, 2018 at 4:01 pm
              Nick C
              Participant

                We discussed targeted therapy and are looking for trials in that vain. We also discussed radiation the the two protruding mets. We will wait until the next scan (5 weeks) the see if it true progression before decide on a course of action. Thanks.

              • August 15, 2018 at 1:00 am
              Ridingaroundwith27Jennifers
              Participant

                Hi Nick.  I only made it to two ipi/nivo treatments before my liver got attacked.  Were you on ipi alone or the combo?  Could you go on or go back on nivo once your liver is happy?  It took 2 months to get my AST and ALT levels back into the normal range.  Hope you are feeling better and I hope it's only inflammation from the immunotherapy working and not progression.

                Good wishes to you.

                Jennifer

                  • August 15, 2018 at 4:08 pm
                  Nick C
                  Participant

                    Hey Jennifer. I have done a year and a half of Keytruda ( Keytruda and Keytruda with trial drug). This would be considered reverse combo. My liver cleared up in about a week, but because of the toxicity issue, we decided to forego the final treatment. We will know if it true progression after the next scan in about 5 weeks.

                    Thank you for your feed back.

                    Nick

                  • August 15, 2018 at 3:56 pm
                  MelanomaMike
                  Participant
                    Hi Nick, damn bro! Ok, no sweat, were “still” here, were “still” in the ring fighting this damn crap, to confirm what Mark said, our brother Tex indeed did PV-10 i believe injected “directly” into infected area of his neck (every 3 weeks i believe) and was also taking the Pembro as a combo fighting system and he is now NED! but, like we know, everyones results may vary..funny about yer side effects creeping up on ya’s!! Haha..i learned a long time ago, dont get cocky! Itll serve you up something Evil! Stay in the ring & find something new bro, we are here today so, it must be keeping us alive regardless of our poor scan results..right?..Mike..
                      • August 15, 2018 at 4:12 pm
                      Nick C
                      Participant

                        Hey Mike. Feeling a whole better now…just the stomach problem and tingling fingers. I probably know are next plan of attack in about 5 weeks.

                        Stay strong my brother. we'll get thru this.

                        Nick

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