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ipi nivo failure- where to now ?
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ipi nivo failure- where to now ?

› Forums › General Melanoma Community › ipi nivo failure- where to now ?

  • Post
    • April 23, 2017 at 1:02 pm
    debwray
    Participant

      Hi, 

      Liver numbers elevated dose 2 of combo. Rechallenged for dose 3 , 23/ Jan resulted in more elevated AST and ALT.

      Scans show diseae in Liver , Spine , Pelvis , lung Sacrum and breastbone, Had two shots at radiation which helped but was supporting myself with two hands on washbasisn last weekend heard a crack and fell to the floor.Couldnt get up again andbruising is extensive tho told no fracture.

      Have been passed to palliative teams and feel so low as every grab rail, or profiling bed offer tells me things are going to get worse…

      I'm 55 and have so much I want to fight for but prior pd1 seems to exclude for so many things.Am being treated in Manchester …at a specialist centre.Am loving stories of successs with Ipi Nivo, could just do with some for me too.

      Anyone know if it is worth trying pembro after nivo ? given different routes….

      BTW have..2-3 groin lymph nodes accessible for biopsy easily. Am currently on 4 tabs of dex to help  but could taper if appropriate.. Help please as I don't want this to be the end of the road….

      Deb

       

       

       

       

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    • Replies
        • April 23, 2017 at 1:16 pm
        Bubbles
        Participant

          Sorry, Deb.  Melanoma sucks great big green hairy wizard balls!!!  I'm sure you saw this when I posted it before….but it still includes options that I would look to if I needed them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/trials-for-joshie-and-paulster-and.html

          If you have lesions that can be biopsied…the Match trial may be a really great option.  So many folks with melanoma that have not responded to traditional therapy have found responses with treatments more typically used in things like HER2 breast cancer, etc.

          I know peeps who were told to go home, finalize their wills, etc….who have had good results with various urelumab combo's.  TVEC or other intralesional may be helpful if your groin lesions are injectable.

          If you want to fight…there ARE options.  It won't be easy.  But you can do it!!!  Hang in there.  Celeste

            • April 23, 2017 at 1:43 pm
            debwray
            Participant

              Hi Celeste,

              Think NCI Match may be out as based in uk… but will try making contact. Thanks also for your speed of response and kind words. They mean more than you will ever know. Uk trials look like if prior ipi nivo doesn't rule out then steroids will, havebeen offered radiation with a half hearted endorsement from the Oncologisit… not feeling good as  know the morphine etc is just masking the underlying symptoms…

              Oh shit… things are getting tough….both for me and those I love so very much..

              Deb

               

              • April 23, 2017 at 1:58 pm
              Bubbles
              Participant

                Sorry, Deb.  Fogot your locale.  Melanoma is global so I tend to think of resources that way….AND they should be!!!  Let me think and I'll get back.  Love, c

              • April 23, 2017 at 4:47 pm
              eric w
              Participant

                Are u braf pos??

                • April 23, 2017 at 5:32 pm
                eric w
                Participant

                  I see you are wild type.. any idea of other mutations? Nras, etc

                    • April 28, 2017 at 2:37 pm
                    ECHO
                    Participant

                      hello eric,

                      i wonder if there's any effective drug that can deal with NRAS mutation? coz i heard that it is a very tricky mutation and no medicine is approved effective to it. look forward to your reply. best wishes !

                    • April 23, 2017 at 7:55 pm
                    Bubbles
                    Participant

                      My dear Eric sent this trial link, thinking of you:  https://clinicaltrials.gov/ct2/show/NCT01995344?term=Melanoma&recr=Open&cntry1=EU%3AGB&rank=5

                      Looking at the exclusions it seems that only radiotherapy percentages or radiation to the existing mets or recentness of immunotherapy would be your only stumbling blocks.  Not sure…but perhaps worth looking into.  My other thought….though I know it would not be easy….is looking at trial options in France or Belgium.  They do a lot of work in melanoma.  A dear one of mine…a truly amazing lady….sought treatment in this fashion…  You might appreciate this video she made:  https://www.youtube.com/watch?v=vmt-j7ZCzVs

                      Also any info you could give re Eric's questions might help since you haven't made a profile.  I seem to remember you are BRAF negative.  

                      Another idea that I would try in your shoes:  Have your doc…or yourself…or a dear one…call the research institution/trial coordinator of ANY trial you find that you are interested in or feel you qualify for….no matter where they are.  Sometimes they can hook you up with researchers who are doing similar studies or using similar therapies in different locations.  Weber for one would certainly answer you and might be able to direct you to additional help in your area.

                      Hang in there.  C

                        • April 23, 2017 at 10:11 pm
                        debwray
                        Participant

                          No idea of other mutations… Not coinmonly searched but know that til triual stopped  or not started,due to funding…..the Scots trials might have legs tho…

                          Thanks to all.. Sometimes es it just gets fgok me

                          Deb

                          Xx

                        • April 23, 2017 at 8:25 pm
                        Bubbles
                        Participant
                          • April 23, 2017 at 9:19 pm
                          Casitas1
                          Participant

                            Deb, Pembro is worth a try. I failed Ippi/Nivo after 2 doses. Had some low dose chemo in between. After 1 dose of Pembro I had an immediate response and am NED. for 10 months now.

                            Best, Paul

                              • April 23, 2017 at 10:07 pm
                              debwray
                              Participant

                                Thanks.. Will try and argue the cascase thou not hopeful

                                 

                                D

                                • April 23, 2017 at 10:51 pm
                                Mark_DC
                                Participant

                                  Hi Deb,

                                  am very sorry for the bad news but hope you will find a way

                                  i have always enjoyed reading your posts and learning from you

                                  also i can relate as i am from the UK too (nearest airport is manchester family in shrewsbury) but have worked 25 years in the states, where am being treated (i dont like the health system here so complicated and costly but realise that for this i am lucky (although Not sure i will ever be able to go back to the uk to live)

                                  i think you have to make the case for pembro, you have been off trearment a while and so maybe this explains the progression; pembro has less side effects than ipi, so there is a case to be made; also perhaps with tvec intralesional if possible

                                  i think after that comes TIL so its a pity manchester is not recruiting, if there is a scottish option then i would go for that but only if your doc is againsr pembro, i would be inclined to go for pembro

                                  am not an expert but hpoe tihs will help; had been worried abiut you but hope you can make a treatment plan with pembro or til

                                  thinking of you

                                  mark

                                • April 23, 2017 at 10:13 pm
                                Cindyco
                                Participant

                                  Hi Deb,

                                  I'm so sorry to hear the bad news. I also think Keytruda would be a good option even if you progressed on the ipi/nivo.  Maybe the ipi/nivo will kick in later? 

                                  I remember how awful my family felt when my mom progressed. We are doing chemo right now, and I can share her experience with Abraxane if you're interested. I don't think it's the long term plan, but she's tolerating it well and we're hoping it gives us time to try something else. We are looking for clinical trials too, but we are based in the US as well.  

                                  I'll be praying for you and I hope you keep us posted on what you decide to do. 

                                  Connie

                                  • April 23, 2017 at 10:46 pm
                                  tschmith
                                  Participant

                                    My prayers for you,Deb. 
                                    Terrie

                                    • April 24, 2017 at 2:07 am
                                    Prd10
                                    Participant

                                      Hi Deb,

                                      What about this trial https://clinicaltrials.gov/ct2/show/NCT02535078

                                      I know my oncologist said it was U.K. Based.  You have to qualify based on blood type HLA-2.  You can have prior immunotherapy, but no current brain mets or steroids.  I'm sure there's tons of other fine print but maybe an option locally.  

                                      Best of luck 

                                      Caitlin

                                        • April 24, 2017 at 6:39 am
                                        Cindyco
                                        Participant

                                          Deb, this is actually one of the clinical trials we are looking into.  When we went to the Angeles clinic before we started chemo, Dr. Hamid said that this would be an option.  My mom tested postive for HLA expression as of Friday (it takes a while for results to come back), although we are still waiting for Foundation One results for targeted mutations before making any decisions.   I'm gathering information about IMCGP100 and can keep you posted on anything I find.

                                          • April 24, 2017 at 8:02 am
                                          ed williams
                                          Participant

                                            This is from 2015, Dr. Omid Hamid talking about future therapies, at the 22min mark he talks about gp100.

                                            • April 24, 2017 at 8:21 am
                                            ed williams
                                            Participant

                                              https://m.youtube.com/watch?v=10nUgi5R9UE  The link is always helpful. I also have another with some early result data again with Dr. Hamid. https://m.youtube.com/watch?v=FtQJQhQE3dQ  look around 17 min mark.

                                              • April 24, 2017 at 1:44 pm
                                              Prd10
                                              Participant

                                                Cindy,

                                                I started this trial this past Wednesday.  I searched and searched for personal stories and didn't find many.  My side effects from the first treatment were just a rash and fortunately not so bad.  We will see how the build up goes the next few weeks once we add in durvalumab.

                                                I know there aren't many on this treatment, and everyone will tolerate different, but feel free to contact me if you want to compare notes.

                                                good luck to all 

                                                Caitlin

                                                • July 6, 2017 at 3:33 pm
                                                kaileetutt
                                                Participant

                                                  Caitlin, can you share with me your IMCgp100 experience? My mother has uveal melanoma metastasis to her liver & now spreading all over her body. We made it through 2 rounds of IPI/Nivo before her LFT's became too elevated to continue. Since then have been doing alternating rounds of chemoembolization & radioembolization to treat the liver but have not addressed the ever growing spread outside. At this point IMCgp100 seems like our only option & it is hard to find much information on it. We also live in Alaska, to make our options even more limited & difficult– as if they weren't enough. Haha. Hope you are well! 

                                                • April 25, 2017 at 3:06 pm
                                                Mat
                                                Participant

                                                  Deb, very sorry to hear.  To echo others, I understand from consultations with Sloan Kettering that adding chemo following immunotherpay is being used as a "bridge" treatment for some patients.  Not a long term solution, but perhaps a "bridge" to a clinical trial.

                                                  • April 26, 2017 at 10:39 pm
                                                  WithinMySkin
                                                  Participant

                                                    Hi Deb. I'm so so sorry to hear this news. I just wanted to reach out and give you a giant internet hug from across the pond. I'm thinking of you. Please let us know what path you choose.

                                                    Lauren

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