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Rash after first ipi treatment
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Rash after first ipi treatment

› Forums › Cutaneous Melanoma Community › Rash after first ipi treatment

  • Post
    • June 9, 2017 at 11:07 pm
    MustangLT
    Participant

      I started the clinical trial S1404 Randomized Comparing Ipilimumab 10mg to Pembrolizumab. I got randomized to the ipi arm of the study. I had my first infusion on June 19th. About 4 days later I started breaking out in an itchy rash, initially on my hands and abdomen. It got worse and I was put on a 5 day regimen of prednisolone. It stopped the itching until I went off, about 5 days later went back on another dose of pred for 5 days and my next treatment has been postponed.  I know itching and rash are not the end of the world but living with constant itching is very maddening and crazy making! The rash is now over my back, arms, scalp, arms..
      I am now trying to decide if I should try another treatment and itch for another month or more or go back to watch and wait! Have also had touches of diarrhea but nothing overwhelming. I'm really on the fence right now, thinking I should give it another chance, then again, not crazy about the risk potential. I'm in very good health otherwise!

      My original diagnosis was a malignant mole in the center of my back, removed 7 years ago. 2 years ago, left axillary node dissection with 2 positive nodes, this February, right side axillary node removal, 2 positive nodes. Currently NED which qualified me for the clinical trial.

      Any thoughts?

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    • Replies
        • June 10, 2017 at 10:01 am
        ed williams
        Participant

          I have two videos for you talking about IRAE's for Immunotherapy drugs. The first one you might have to join Peerview to watch, but I am not sure about that point. http://learn.peerviewpress.com/p/index.html?collection=150204255-2-2&presentationid=p3&SpecialtyID=74&ProfessionID=12&Promocode=815#screen5  The second video is talking about Ipi/Nivo combination where much of the toxicity is considered to be coming from Ipi at 3mg/kg. The general feeling that I get is once systematic steroid have to be used with ipi then that is enough. Best Wishes!!!Ed https://www.youtube.com/watch?v=VCOAk7i9kmU

            • June 10, 2017 at 10:06 am
            ed williams
            Participant
              • June 10, 2017 at 8:11 pm
              MustangLT
              Participant

                Thanks Ed! Good info there. I appreciate your input.Meanwhile, here I am..still itching!!! My poor skin….angry

                • June 10, 2017 at 8:42 pm
                ed williams
                Participant

                  I remember my wife saying "stop scratching" to me all the time when I first started treatments, and or making monkey sounds when I would continue!!!

                  • June 11, 2017 at 6:36 pm
                  MustangLT
                  Participant

                    How point did you have the rash? Its been 3 weeks and I am going crazy!!!

                    • June 11, 2017 at 9:53 pm
                    MustangLT
                    Participant

                       I meant how long..not how point!!

                      • June 11, 2017 at 10:48 pm
                      ed williams
                      Participant

                        I never had to go on steroids for it, but it was a pain in the ass for about the first year of treatments. Many on the forum have shared what they used to deal with the itching, you would have to go back and find the posts. I used a lot of moisturizing lotions, and I would strongly suggest that you let your oncologist or dermatologist take a look at things and take a professionals advice. Best Wishes!!!Ed

                        • June 12, 2017 at 3:48 pm
                        MustangLT
                        Participant

                          Thanks, Ed. I have read the old posts and have been to urgent care, my dermatologist and my oncologist… they all said "Yup, looks like a reaction to the treatment. We'll know for sure after the next one." At this point, there won't be a "next" one!  Thanks for your input…I'll post an update if it ever goes away!"

                          Take care cool

                        • June 12, 2017 at 1:14 pm
                        Hukill
                        Participant

                          I have had the rash for a year but it has never itched. I was happy when the rash appeared after my first treatment, to me it meant my immune system was reacting to the drugs. Last week I became in remission.

                            • June 12, 2017 at 3:43 pm
                            MustangLT
                            Participant

                              That's great news that you are in remission! I wouldn't mind the rash if it didn't itch so badly. 

                              • June 21, 2018 at 10:25 pm
                              AlohaMary
                              Participant

                                Hi…You have had the rash for a year ? Is it all over ? I had 5 infusions of Keytrua and the rash is all over my arms, legs, back & chest. The sores are big and swollen. If I bump into something it hurts 100% worse than when I didn't have the rash. Please ….has your rash subsided at all ? I have been to 3 Dermatologists , have used 3 steriod creams, prednisone for days. Am very miserable to think my life has changed so drastically. 

                                 

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