A Setback

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    • March 22, 2017 at 1:29 am
    mrsaxde
    Participant

      Well, I had my most recent scan, a PET this time, last Friday. Saw my oncologist today. I knew the minute she walked into the room that the news wasn't good.

      It seems Keytruda has managed to kill the spots on my skin and in my right lung. Neither of those places turned up as hypermetabolic on the PET. But what did light up is the mass noticed on my December CT scan, on the hilum of my right lung. Also several lymph nodes in the area are hypermetabolic. So it looks like Keytruda did the job, but at some point I have apparently stopped responding, and that mass that my oncologist wasn't terribly concerned about is now the issue.

      She is taking my case to the tumor board on Thursday, and the plan currently is to continue with at least my next infusion of Keytruda, which is scheduled for Friday. My oncologist mentioned the possibility of radiation. Depending on what she tells me on Friday another visit to Dr. Sharfman may be in order.

      Down but not out. Fortunately, unlike just a few years ago, there are still options remaining. And I am nowhere near ready to give up!

      -Bill

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    • Replies
        • March 22, 2017 at 2:06 pm
        UBContributor
        Participant

          Reading on this site I learnt that often the body keeps responding to treatment even few weeks after the end of the treatment. YOu may still have chances of responding too!   

            • March 22, 2017 at 5:38 pm
            mrsaxde
            Participant

              Oh I know that. I have been receiving Keytruda for almost 2 years and the response has been great. But this new issue means that either I have stopped responding or I now have a completely different type of cancer.

            • March 23, 2017 at 2:04 pm
            cancersnewnormal
            Participant

              Let's hope the tumor board can hammer out some more concrete answers for you. I did find an interesting article on a PET "false positive" for a malignant diagnosis in a woman who had pneumonia. Since you've been on Keytruda for quite some time, it is possible that you have "quit responding", but it's not completely out of the realm of possible that your immune system has kicked into overramped in your lungs, and caused an immune related adverse event….. pneumonitits. Granted, it's pretty rare (3-4%)… but it does happen. 

              https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783064/

              http://www.medscape.com/viewarticle/848062

              Here's to hoping you get some answers that aren't too unnerving! **thumbs up**   

                • March 23, 2017 at 2:16 pm
                cancersnewnormal
                Participant
                  • March 23, 2017 at 2:22 pm
                  cancersnewnormal
                  Participant

                    From that last article link: 

                    "Little is known regarding the clinicopathologic features of pneumonitis related to the novel immune checkpoint inhibitors. A recent study indicated the development of pneumonitis in three patients treated with nivolumab, an anti-PD-1 Mab, 7–24.3 months after treatment initiation.18 Two patients were radiographically found with acute interstitial pneumonia/acute respiratory distress syndrome, and one patient was with nonspecific interstitial pneumonia. Two of these patients required admission in the intensive care unit, and one succumbed four weeks after diagnosis of pneumonitis. Computed tomography findings differed from COP, and BAL or transbronchial biopsy was not performed in these patients. Another report involving a patient treated with nivolumab described an OP diagnosed both radiographically and pathologically.19 Similar to our case, CT of the chest showed the typical reversed halo sign and had a favorable response to corticosteroid therapy.

                    With novel immunotherapies, the incidence of autoimmune phenomena is rising; therefore, it is important to recognize an OP early in any patient receiving anti-PD-1 and presenting with symptoms of new cough or shortness of breath. The diagnosis needs to be supported by imaging and cytological investigations. Although the exact causative mechanism of OP by anti-PD-1 Mab therapy cannot be established as yet, a T-cell or macrophage-driven effect is the most plausible explanation, and further studies are warranted to define the pathogenic mechanism underlying this possibly lethal side effect."

                    • March 23, 2017 at 3:16 pm
                    mrsaxde
                    Participant

                      I had thought about that, but my doc says the place that is lighting up isn't in my lung. Wouldn't pneumonitis appear inside the lung? The place that is of concern is on the hilum, not actually in the lung.

                      • March 24, 2017 at 2:42 pm
                      cancersnewnormal
                      Participant

                        There is hilar pneumonia…. It can be caused by infections, radiation, or autoimmune disorders (which are coming to light more and more with Pembro, Nivo, and Ipi use). I would think that kind of thing would also affect nearby lymph nodes as well. I'm not sure how common it is, but it seems with this tricky melanoma, the standards of "common" are outside of the norm compared to traditionally developed forms of other diseases.

                        It's certainly good to have the images reviewed by the entire tumor board. More brains and eyes going over the possibilities. I hope they gave you some answers…… or are scheduled to soon!

                        • March 25, 2017 at 6:34 pm
                        mrsaxde
                        Participant

                          Thanks for that info! My wife is an RN, and when I asked her about pneumonitis she said it would be in the lung. This is encouraging information!

                          I went for my usual infusion of Keytruda yesterday, and my oncologist said the consensus of the tumor board was to do a biopsy. I'm supposed to hear from a pulmonologist at the beginning of the week.

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