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No more immunotherapy- on to chemo

Forums General Melanoma Community No more immunotherapy- on to chemo

  • Post
    Cindyco
    Participant

      Today Dr. Ribas told us that immunotherapy is not an option anymore for my mom.  After getting hepatitis and colitis from one dose of ipi/nivo, then high liver numbers from one dose of keytruda, he does not think her body is able to take immunotherapy.  He is planning to have her start Abraxane next week, which is a chemo.    A quick search of this forum shows that not many people are on Abraxane and it's mostly offered when there aren't many more options. It also looks like a lot of clinical trials will be out too, since most are immunotherapy based.

      I'm afraid to ask, but can anyone share their experiences on Abraxane?

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    • Replies
        UBContributor
        Participant

          It is strage that only after one dose Drs would opt for getting off the meds. Body may adjust to the meds. And there is no guarantee that liver would be ok with chemo unless chemo was used before and it was ok. 

           

          debwray
          Participant

            Hi Cindy,

            Sorry to hear this. There are lots of reports where some get a late response from immunotherapy  inspire of stopping early. Not a big percentage but still possible….don't give up hoping yet.

            Dr Ribas is a very experienced physician with the newer immunotherpies and am sure is making a considered judgement call. I'm in a similar position and may not be offered more immunotherapy unless liver numbers improve greatly.. May a!ready have crossed the line with number of times over uln . upper limit of normal.. Depends if there is flexibility with liver mets in the mix.. 

            There is a treatment plan. ,Dr Ribas may be looking for the chemo and immuno to have a combined impact..which is better then chemo on it's own.

            If there are relevant clinical trials.. Would expect you mums team to track them down.. But if the drugs destroy the liver then it has to be right not to do this.

            Will watch out for your updates and wish you all the best of results on this roller coaster from hell.

            You're due a lucky turn of the cards…hang on in there.

            Deb

             

             T

            debwray
            Participant

              Hi Cindy,

              Sorry to hear this. There are lots of reports where some get a late response from immunotherapy  inspire of stopping early. Not a big percentage but still possible….don't give up hoping yet.

              Dr Ribas is a very experienced physician with the newer immunotherpies and am sure is making a considered judgement call. I'm in a similar position and may not be offered more immunotherapy unless liver numbers improve greatly.. May a!ready have crossed the line with number of times over uln . upper limit of normal.. Depends if there is flexibility with liver mets in the mix.. 

              There is a treatment plan. ,Dr Ribas may be looking for the chemo and immuno to have a combined impact..which is better then chemo on it's own.

              If there are relevant clinical trials.. Would expect you mums team to track them down.. But if the drugs destroy the liver then it has to be right not to do this.

              Will watch out for your updates and wish you all the best of results on this roller coaster from hell.

              You're due a lucky turn of the cards…hang on in there.

              Deb

               

               T

              debwray
              Participant

                Hi Cindy,

                Sorry to hear this. There are lots of reports where some get a late response from immunotherapy  inspire of stopping early. Not a big percentage but still possible….don't give up hoping yet.

                Dr Ribas is a very experienced physician with the newer immunotherpies and am sure is making a considered judgement call. I'm in a similar position and may not be offered more immunotherapy unless liver numbers improve greatly.. May a!ready have crossed the line with number of times over uln . upper limit of normal.. Depends if there is flexibility with liver mets in the mix.. 

                There is a treatment plan. ,Dr Ribas may be looking for the chemo and immuno to have a combined impact..which is better then chemo on it's own.

                If there are relevant clinical trials.. Would expect you mums team to track them down.. But if the drugs destroy the liver then it has to be right not to do this.

                Will watch out for your updates and wish you all the best of results on this roller coaster from hell.

                You're due a lucky turn of the cards…hang on in there.

                Deb

                 

                 T

                debwray
                Participant

                  Hi Cindy,

                  Sorry to hear this. There are lots of reports where some get a late response from immunotherapy  inspire of stopping early. Not a big percentage but still possible….don't give up hoping yet.

                  Dr Ribas is a very experienced physician with the newer immunotherpies and am sure is making a considered judgement call. I'm in a similar position and may not be offered more immunotherapy unless liver numbers improve greatly.. May a!ready have crossed the line with number of times over uln . upper limit of normal.. Depends if there is flexibility with liver mets in the mix.. 

                  There is a treatment plan. ,Dr Ribas may be looking for the chemo and immuno to have a combined impact..which is better then chemo on it's own.

                  If there are relevant clinical trials.. Would expect you mums team to track them down.. But if the drugs destroy the liver then it has to be right not to do this.

                  Will watch out for your updates and wish you all the best of results on this roller coaster from hell.

                  You're due a lucky turn of the cards…hang on in there.

                  Deb

                   

                   T

                    Cindyco
                    Participant

                      Thanks Deb.  This was really our worst fear.  Hoping beyond hope that there is a delayed response to Ketyruda, but at this point it seems like nothing is going to work for her. 

                    rabbits68
                    Participant
                      I have taken 2 doses of Abraxene. I was told it had manageable side effects and have read that it usually works quickly and can help stabilize the disease. I was discouraged when my doctor said no more immunotherapy for me too. I’m not giving up though and still looking at some clinical trials out there. My bad days are 2 and 3 days after infusion. I have GI issues n/v/d. I am still working some but am fatigued. I pray she gets results and doesn’t experience harsh side effects.
                        Cindyco
                        Participant

                          Thanks Lisa.  We will pray for you too.  Not being on immunotherapy makes us very frightened.  I'm looking at clinical trials as well.  We're thinking about NCI-MATCH or I-PREDICT at UCSD.  Have you looked into those?

                          Bubbles
                          Participant

                            Hope you got the email I sent you.  Thought about you and your mom all day.  Hang in there.  celeste

                            Cindyco
                            Participant

                              Thank you Celeste.  You are truly an angel to share so much knowledge with the rest of us.  After being in a fog for a little bit, I'm trying to get it together so that we can keep going.  We feel really deflated, but logically we know that there is more to do. 

                              Maureen038
                              Participant

                                Cindy ,

                                Please don't give up hope for your mom. My husband had TIL therapy, Ipi/Nivo and then Nivo by itself plus three VATS surgeries. He was taken off immunotherapy too. We went to SloanKettering and found out he has a breast cancer mutation. While we were waiting for the mutation results, he did the pill form of DTIC. While he had dangerously low blood levels, his scans were improved a lot. He has had a year of being on a breast cancer drug and is stable. Please continue to fight!!!

                                Maureen

                                Bubbles
                                Participant

                                  I agree with Maureen!!  I know all you've dealt with has been like a punch in the gut….not to mention the psyche.  But the CDK inhibitors are the exact sort of thing I was talking about….meds found to be helpful in "other" cancers but good for some melanoma peeps, too.  The trial I think you are looking at:  https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1     

                                  ….May be a great way for anybody with melanoma who has not responded to conventional therapy to figure out their next steps.  Melanoma is not for sissies…and that sucks!!!  But…you're tough and an amazing support to your mom.  Hang in there.  Celeste

                                   

                                   

                                   

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