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Looking for Hope! – Someone let me know what this means?
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Looking for Hope! – Someone let me know what this means?

› Forums › General Melanoma Community › Looking for Hope! – Someone let me know what this means?

  • Post
    • February 5, 2020 at 3:47 pm
    nasullivan
    Participant
      Hello All,

      My grandmother has stage 4 with multiple brain mets and a few in the body. She had 2 doses of immunotherapy – with a partial response – followed by 4 months of predisone and 2 immuno-suppresion infusions due to colitis. The colitis has resolved mostly – although she does have new onset Afib from long term predisone use.

      Nevertheless, her latest PET scan shows: ” Since November 6, 2019, hypermetabolic pulmonary, nodal, adrenal lesions, suspicious for metastases; overall demonstrate increased hypermetabolic intensities on PET but unchanged sizes on companion CT.”

      The Doctor said let’s follow-up and recheck in 3 months with another PET and “not to worry.”

      However, the above means an increase in metabolic activity – which means they are alive and likely to grow?

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        • February 5, 2020 at 4:14 pm
        tkoss
        Participant
          prescribed treatment of immo-enhancing(nivo, premb) drugs are based on clinical trial results. I asked my onc, “well if things go well after 6 months can I stop treatment’. His response was:” I don’t know, studies reveal results for 1 year treatment only” . You would have to have study that measured 2 or 4 treatments and then stopping or stopping and starting. No study like that has been done that he was aware of.

          he bases his treatment on results of clinical trials and not his own trial and error with patients.

          my PETSCAN showed some hints of lumps or lesions in lymph nodes beyond those excised in SNLB. Since they didn’t definitely identify a likely tumor, Onc would not venture an opinion as to their cancerous nature or if they would evolve into a cancerous node.

          • February 5, 2020 at 6:13 pm
          ed williams
          Participant
            Have they done follow up on brain with MRI scan? Some times you can get a mix of results in different parts of the body with some tumors getting smaller or stable and other’s new ones showing up. What size are the next mets
            • February 5, 2020 at 6:13 pm
            ed williams
            Participant
              Have they done follow up on brain with MRI scan? Some times you can get a mix of results in different parts of the body with some tumors getting smaller or stable and other’s new ones showing up. What size are the next mets
              • February 5, 2020 at 6:19 pm
              Bubbles
              Participant
                Hey Nas,

                If your grandmother is still at Sloan Kettering with Chapman she is in really good hands, although it seems like she has certainly had a rough go of it. Like Ed, I would ask about any f/u eval of her brain mets with an MRI. As far as the other report – some “lighting up” is of course concerning, but if there has been no growth, then that is good! I really hesitate to second guess given the expert care you are under, but if you are really concerned, you might ask that the time of the next scans be moved forward a bit and/or for further clarification of some of the lesions with an MRI. But, again – Chapman and Wolchok are certainly Melanoma Big Dogs, so I hope that will impart some HOPE to you. Wishing you and your grandmother my best. Celeste

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