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Help with suggestions for Anne-louise
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Help with suggestions for Anne-louise

› Forums › General Melanoma Community › Help with suggestions for Anne-louise

  • Post
    • July 6, 2017 at 6:45 am
    Jubes
    Participant

      Hi all. 

      My pet scan on Tuesday shows new uptake in media Steinem. SUV 13.5 neck and on my liver. The report says that inflammation can't be discounted due to my previous severe muscular inflammation. However that inflammation has practically disappeared since I've been on sulfazalazine. So my gut feeling is that the melanoma is back. 

      Oncologist suggests trying to biopsy the spots with a respiratory doctor or a vats surgeon so we know what we're dealing with. My husband just wants me to go straight onto pembro or nivo/ipi. 

      I am feeling well. I seem to always feel better when the Mel is growing and worse when on pembro!

      what would you do? Are there any other options or trials?

      i did pembro for 9 months in 2014/15. Lower right lobe resection nov 2016. And I'm braf negative

      any advice much appreciated

       

      anne-Louise 

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        • July 6, 2017 at 12:07 pm
        Jahendry12
        Participant

          Sorry you are dealing with the 'unknown' again. Personally, I would do a biopsy. 3 times my husband has had things show up on PET scans and biopsies proved it negative for melanoma. He had VATS once and they also took a lymph node and both proved to be negative. My thoughts are why go on treatment if you don't need to. That's just my 2 cents. 

          • July 6, 2017 at 3:14 pm
          Bubbles
          Participant

            Hey Anne- Louise.  So sorry that you are facing ONE. MORE. THING.  First and foremost, I agree that you need a biopsy to see what you are really dealing with.  It really could be something other than melanoma, so you need to be sure exactly what it is so that it can be addressed appropriately.  

            My first thought re treatment for melanoma…should that be determined to be the culprit, were I in your shoes, would be an anti-PD-1 with epacadostat trial.  As good a response rate as ipi/nivo with much fewer side effects.  For awhile there, there was a trial using that combo on folks who had progressed on pembro specifically.  However, a look at clinicaltrials.gov this morning shows that while there are three active trials…with either a nivo/epacadostat or the pembro/epacadostat combo….they all have prior anti-PD-1 as an exclusion.  GRRRRRR!!!!  So…here's a deal:  You figure out what is truly going on and I will keep looking for a good option should you need it.  All the while keeping fingers and toes crossed that you will not!!!

            Hang tough and keep us posted.  Much love, celeste

            • July 6, 2017 at 8:39 pm
            Jubes
            Participant

              Thank you all. I will keep you posted!!

              • July 7, 2017 at 12:40 pm
              Bubbles
              Participant

                My dear friend Eric found this, Anne Louise and I think it is worth talking to your doc about if you are at all interested….

                Here's the trial:  https://clinicaltrials.gov/ct2/show/study/NCT02658890?term=BMS-986205&cntry1=PA%3AAU&rank=1&show_locs=Y#locn  

                This trial combines BMS-986205 with a couple of dosing arms of Nivo or an arm that combines it with Ipi/Nivo.  It is offered at several sites in Australia.  It does mention autoimmune disease as a possible exclusion.  A little worried about your prior trouble with pembro. Not sure how that would be viewed, how you feel about it and what your doc would think.  But, it seems like an option worth checking into.

                BMS-986205 is an IDO inhibitor.  Here's a report on it:  http://www.onclive.com/conference-coverage/aacr-2017/novel-ido1-inhibitor-shows-promise-in-early-phase-study  

                Big hugs!!!  love, c

                  • July 8, 2017 at 10:25 am
                  Jubes
                  Participant

                    Hi Celeste. I will ask my doctor. He has mentioned that my auto immune reactions might exclude me from some trials. Is BMS 986205 epacadostat?

                    thanks!!

                    • July 8, 2017 at 10:30 am
                    Jubes
                    Participant

                      But I think I'll be pushing for it anyway!

                      • July 8, 2017 at 1:56 pm
                      Bubbles
                      Participant

                        No.  Epacadostat is an IDO inhibitor made by Incyte.  This one is an IDO inhibitor made by BMS (Bristol Myers Squibb).  Yes, being on any immunotherapy (ipi, pembo, nivo) may be tricky for you….but forewarned is forearmed and you and your doc can watch things closely if you end up doing one.  hugs….c

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