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  • Post
    • March 13, 2015 at 2:18 pm
    G-Samsa
    Participant

      I am sadly completing a successful 2.5 year run on the Anti-PD1/Ipi combo trial.  Although the visceral disease remains in-check, several mets have suddenly appeared and have taken hold in fatty tissue areas.  It's as if there are two distinct systems — one in which the immune system is still effective at maintaining a tolerable tumor load, and one where it is beginning to lose its grip.  A reinduction of the combination drugs has been (after three infusions) unsuccessful at getting the immune system interested in these new tumors.   Although the new tumors are not life threatening, the doctors feel that it is important to have them removed.  The inaccessibility of the tumors (entangled with nerves, etc) suggests the need to "shrink and pluck", that is, reduce their size so that they can be surgically removed.   Since I am Braf positive, the outlined plan from the medical teamis to exit the trial and move me to a Braf/MEK inhibitor treatment regimen ( presumably it will shrink the tumors enough to be removed).  

      Having been under the umbrella of a very effective treatment, I am clinging to my prior treatment like a cat on a cliff, and have expressed some reluctance to chase something not life-threatening, by forever giving up access to a treatment that has worked so well.  I've read many entries here about the limitations of the genetic treatment (that are typically effective for a limited period).  I've also heard it suggested that the Mel can sometime returns with a vengeance.  The doctors have talked me off the ceiling, indicating that together with the prior long-term immuno-therapy treatments, they expect the Braf/MEK to have a better long term effect, and indicate if it loses its grip, both ipi and anti-pd1 remain options (albeit as separate treatments)

      Bringing this to the attention of the group for a couple of reasons–

      I'd like feedback on whether this sounds like a reasonable approach (I believe we all have developed expertise fighting the disease — and collective thought might be informative/supportive), also looking for experience/evidence that genetic treatment on top of immuno-therapy makes for a more durable response. I was thinking that I should suggest a set short-term use of the Braf/MEK, just to address the tumors,  hoping this would keep my powder dry, preserving the ability to use Braf/MEK at a later date if the critical tumors begin to stir.  

      Thanks for your thoughts

       

       

    Viewing 8 reply threads
    • Replies
        • March 13, 2015 at 3:07 pm
        Mat
        Participant

          Sorry to hear about the progression. I had a nice run with BRAF/MEK for 18 mos. Even though I knew the run would end at some point, it was still disconcerting when it happened. Your onc's approach sounds reasonable to me. I would possibly take the view that you'd be on BRAF/MEK until PD-1 is approved as a first line treatment (removing the "progressed on BRAF" requirement)–and then possibly move to Merck's version of PD-1.

          • March 13, 2015 at 3:07 pm
          Mat
          Participant

            Sorry to hear about the progression. I had a nice run with BRAF/MEK for 18 mos. Even though I knew the run would end at some point, it was still disconcerting when it happened. Your onc's approach sounds reasonable to me. I would possibly take the view that you'd be on BRAF/MEK until PD-1 is approved as a first line treatment (removing the "progressed on BRAF" requirement)–and then possibly move to Merck's version of PD-1.

            • March 13, 2015 at 3:07 pm
            Mat
            Participant

              Sorry to hear about the progression. I had a nice run with BRAF/MEK for 18 mos. Even though I knew the run would end at some point, it was still disconcerting when it happened. Your onc's approach sounds reasonable to me. I would possibly take the view that you'd be on BRAF/MEK until PD-1 is approved as a first line treatment (removing the "progressed on BRAF" requirement)–and then possibly move to Merck's version of PD-1.

              • March 13, 2015 at 3:15 pm
              Bubbles
              Participant

                Sorry that the effectiveness of your anti-PD1/ipi combo didn't stick!!!  Finding truly durable responses is still so frustratingly elusive!!!  However, I think your plan…A:  Shrink tumors with BRAF/MEK, B:  Remove them surgically ASAP when they shrink enough, and C:  Have another immunotherapy after that if needed…..sounds like what I would probably choose in your situation.  And while the BRAFi drugs, even combined with MEK, have a pretty well known limited lifespan as far as tumor control goes…there are those who get a much longer ride.  Check out the post by anon….lurking as Dick K, I believe.  5 years now on BRAFi!!!!!  Sorry you have to face this again.  Hang in there!  Celeste

                • March 13, 2015 at 3:15 pm
                Bubbles
                Participant

                  Sorry that the effectiveness of your anti-PD1/ipi combo didn't stick!!!  Finding truly durable responses is still so frustratingly elusive!!!  However, I think your plan…A:  Shrink tumors with BRAF/MEK, B:  Remove them surgically ASAP when they shrink enough, and C:  Have another immunotherapy after that if needed…..sounds like what I would probably choose in your situation.  And while the BRAFi drugs, even combined with MEK, have a pretty well known limited lifespan as far as tumor control goes…there are those who get a much longer ride.  Check out the post by anon….lurking as Dick K, I believe.  5 years now on BRAFi!!!!!  Sorry you have to face this again.  Hang in there!  Celeste

                  • March 13, 2015 at 3:15 pm
                  Bubbles
                  Participant

                    Sorry that the effectiveness of your anti-PD1/ipi combo didn't stick!!!  Finding truly durable responses is still so frustratingly elusive!!!  However, I think your plan…A:  Shrink tumors with BRAF/MEK, B:  Remove them surgically ASAP when they shrink enough, and C:  Have another immunotherapy after that if needed…..sounds like what I would probably choose in your situation.  And while the BRAFi drugs, even combined with MEK, have a pretty well known limited lifespan as far as tumor control goes…there are those who get a much longer ride.  Check out the post by anon….lurking as Dick K, I believe.  5 years now on BRAFi!!!!!  Sorry you have to face this again.  Hang in there!  Celeste

                    • March 13, 2015 at 4:13 pm
                    arthurjedi007
                    Participant

                      What about some low dose radiation to the new spots while remaining on the ipi pd1? Is that even an option they would allow? Seems to me the meds have done good for you they just need a little nudge to recognize the new spots and some low dose ie: 3 gray in 10 treatments might do it. Granted radiation is always a risk that's why I say the low dose so the risk of damaging the nerves is much lower. That's the way my doc explained it to me for the stuff in the nerves in my shoulder and arm. Now I can move my arm much better.

                      Artie

                      • March 13, 2015 at 4:13 pm
                      arthurjedi007
                      Participant

                        What about some low dose radiation to the new spots while remaining on the ipi pd1? Is that even an option they would allow? Seems to me the meds have done good for you they just need a little nudge to recognize the new spots and some low dose ie: 3 gray in 10 treatments might do it. Granted radiation is always a risk that's why I say the low dose so the risk of damaging the nerves is much lower. That's the way my doc explained it to me for the stuff in the nerves in my shoulder and arm. Now I can move my arm much better.

                        Artie

                        • March 13, 2015 at 4:13 pm
                        arthurjedi007
                        Participant

                          What about some low dose radiation to the new spots while remaining on the ipi pd1? Is that even an option they would allow? Seems to me the meds have done good for you they just need a little nudge to recognize the new spots and some low dose ie: 3 gray in 10 treatments might do it. Granted radiation is always a risk that's why I say the low dose so the risk of damaging the nerves is much lower. That's the way my doc explained it to me for the stuff in the nerves in my shoulder and arm. Now I can move my arm much better.

                          Artie

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