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Question about ipilimumab
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Question about ipilimumab

› Forums › General Melanoma Community › Question about ipilimumab

  • Post
    • February 23, 2017 at 9:31 pm
    Hriggenbach
    Participant

      I'm 3c and going to be starting ipi 3/16. My dr indicated certain side effects tend to lead better outcome of course I didn't ask her what those were and I can't find anything stating that on the internet I was hoping someone might know 

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        • February 23, 2017 at 9:54 pm
        Hukill
        Participant

          The only side effect I know of through my own research is if you develope vitiligo you seem to have a much higher chance of the melanoma not returning. Other than that I think as long as you get some type of side effect it is a good sign. A side effect means your immune system is have a response to the drug.

            • February 23, 2017 at 10:08 pm
            Hriggenbach
            Participant

              Thank you. I'm really nervous to start treatment because of the severe side effects but I did choose ipi over other treatments because it is the most aggressive proven treatment available to me. I've read a lot of severe reactions I'm just hoping that is not the norm.

            • February 23, 2017 at 10:07 pm
            ed williams
            Participant

              Two really good sources of information on Ipi would be Dr. James Allison and Dr. Jeffrey Weber. I will give you two video featuring these experts. In the second video by Dr. Weber he talks about Vitiligo (Loss of skin pigmentation) at the 31min mark. Best Wishes!!!Ed  https://www.youtube.com/watch?v=CoBkuTOPJqg  https://www.youtube.com/watch?v=ysbSCeqJpq0

              • February 23, 2017 at 10:08 pm
              jennunicorn
              Participant

                Vitiligo is one that's been mentioned a lot that seems to have a connection between patients who get it and a good response rate to immunotherapy.

                Here is a link to Celeste's (Bubbles) blog about vitiligo:

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/all-things-vitiligo.html

                As Hukill mentioned, any side effect is a good sign that your immune system is amped up and that's exactly what you want. For myself, my main side effects have been eczema flare ups (I had it previously, but it's been way worse on immunotherapy) and joint pain/inflammation.. something else I had a little bit of before but is now a lot worse, and some other things sprinkled in. But I'll take it if it means the drugs are kicking some cancer butt, and recent scans show that things are lookin good inside! 

                Hope all goes well for you during treatment.

                  • February 24, 2017 at 2:35 am
                  Hriggenbach
                  Participant

                    Thanks for the links 

                    • February 24, 2017 at 4:29 am
                    jogo
                    Participant

                      Think "fire drill".  Ask your doctor questions.before you begin.  What  are the possible IRAEs, Immune Related Adverse Events? How severe can the IRAE get?  How would each possible IRAE be managed?   Who (physician specialist) would be in charge of treatment?  What would be the treatment.?  Would the ipi infusions resume? When?  If not, what happens next?

                      In the clinical trials involving ipilimumab, participants had to sign an extensive protocol release.  See if you can read a copy. Start your treatment with a battery of knowledge.  Ipi is effective.  Good luck!

                        .  

                      • February 24, 2017 at 4:30 am
                      jogo
                      Participant

                        Think "fire drill".  Ask your doctor questions.before you begin.  What  are the possible IRAEs, Immune Related Adverse Events? How severe can the IRAE get?  How would each possible IRAE be managed?   Who (physician specialist) would be in charge of treatment?  What would be the treatment.?  Would the ipi infusions resume? When?  If not, what happens next?

                        In the clinical trials involving ipilimumab, participants had to sign an extensive protocol release.  See if you can read a copy. Start your treatment with a battery of knowledge.  Ipi is effective.  Good luck!

                          .  

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