Possible acquired resistance to PD1 drugs – scared
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Possible acquired resistance to PD1 drugs – scared

› Forums › General Melanoma Community › Possible acquired resistance to PD1 drugs – scared

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    • May 9, 2017 at 1:01 pm
    magnus31
    Participant

      Dear all,

      I hope you are well despite being affected by melanoma.

      I have been stage IV since late 2014 and have been treated with Ipi, Nivo, both in isolation and combination. Now after over two years of successful PD1 treatment, a new lesion was recently discovered in my intestines. Although it was surgically removed a few weeks ago, I am still extremely anxious that I might be developing resistance to PD1 drugs.

      Does anyone know how proper resistance is defined? Are we talking any sort of disease progression after a period of PD1-induced response or is the scale of progression taken into account in any way?

      Has anyone here had long-term PD1 response despite localized lesions having appeared in the interim? Does my newly discovered lesion confirm first signs of PD1 resistance? The PD1-treated patients making the plateauing survival curve we so often see, do we know if they have been completely without new lesions since treatment started?

      My doctor say it's impossible to know where I stand and says I could have next new lesions in two months or in ten years and I just want to believe the latter… Encouraging testimonials much welcomed.

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    • Replies
        • May 9, 2017 at 8:47 pm
        Polymath
        Participant

          Hi Magnus,

          I think you have lots of reason to remain positive.  While any progression could signal that a drug has run it's course, many of us are partial responders, whereby some lesions disappear completely, others shrink or stabilize, and the long-term effects of immunotherapy can be encouraging.  I'm one such partial responder, and added radiation and surgery to address some of the large, stubborn tumors, while others disappeared completely.  I have now been off the combo for almost 6 months, after a 1-year run.  I continue to develop vitiligo very slowly and and after the last surgical clean-out in December, have not developed anything new since.  I feel like the immunotherapy has worked to suppress new growth's although I know that can change.  I agree with you doctor's opinion and suggest you stay positive and focus on living.  A little denial is not a bad thing.  Best in the battle.

          Gary

            • May 14, 2017 at 4:40 pm
            magnus31
            Participant

              Thanks Gary for replying to my post. It encourages me to read about other patients in similar situations. I am very happy to read about your partially responding to the meds. Truly hoping the meds will control the disease for years to come. I particularly found you "a little denial is not a bad thing"-remark very useful as I think stage IV life quality is often deteriorated by endless worrying and "what if" thinking.

               

              All the best to you,

              Magnus

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