Spl25

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      Spl25
      Participant

        Your hospital should have a nutritionist, although their weight gain recommendations arent always great because they have to worry about cholesterol etc. more than a patient might really care. milkshakes are easy on the stomach, never get old because there are so many combinations of flavors, aren't that bad for you (if you get natural ice cream and milk) and best of al TASTE GREAT. 

        Cheeses (like the "fancy" ones) can have a lot of fat and calories in a small package.

        Outside of dairy, egs with double the yolks will put on pounds and isn't hard to eat, as can anything with lots of peaunt buttter. 

        Obviously, don't go crazy with this off the bat. 

        Spl25
        Participant

          so are people just not going to answer anon posts anymore?

          Spl25
          Participant

            So what was the trial they were considering for “sticky” TIL? Wishing you great luck, was glad to connect a few months ago when going over tx options!

            Spl25
            Participant

              And just to add, Celeste has some great posts on intratumorals on her site – some intratumorals are in trial stage, but nevertheless have good supportive data, or work well systemically and intuitively make sense as intratumorals. Please update if you’re able to get injections in the mediastinum, as I’m having some similar issues in the chest and haven’t heard that brought up by my doctor. 

              Spl25
              Participant

                Sorry to hear about the results, but it sounds like you are in good shape to move on to the next therapy if need be.  There are definitely other options out there. the problem may be one of “cold tumors” (not much t-cell infiltration for the checkpoint inhibitors to amp up). PV-10 or an oncolytic virus or T-Vec may be the way to get your immune system to start noticing the melanoma cells. Good luck

                Spl25
                Participant

                  It’s possible that these are non-cancerous lung nodules, although I’m not sure how likely those are while on Keytruda. A pretty significant number of healthy people have lung nodules that are benign. I would ask your doctor If there’s a way to confirm that these are in fact cancerous if you are otherwise having a positive response to Keytruda. 

                    Spl25
                    Participant

                      Sorry I hadn’t read the second half of your post when I responded. I hope these are benign, but also know there are treatment modalities out there for dealing with local lung mets. 

                    Spl25
                    Participant

                      Thanks Jennifer — this answers my question. I have areas that were affected by melanoma 18 years ago that my immune system is suddenly deciding to inflame, along with multiple leasions that PD-1 killed and dont show up on pet. It's weird to say the least. 

                      Spl25
                      Participant

                        Thanks very much for clearing that up. I'm NEAD, but worried about local recurrence, which may mean a stage 3-type treatment is best. 

                        Spl25
                        Participant

                          so no adjuvant treatments for stage 4 if something is surgically removed (only appears to be approved for stage 3)? That seems not to make much sense. 

                          Spl25
                          Participant

                            Also, PM me if you’d like to trade contact info. 2 heads being better than one.

                            Spl25
                            Participant

                              Was it the HDAC trial? My oncologist hasn’t said what she’ll do if it’s still enlarged, but I was thinking surgery was more likely than radiation.

                              Spl25
                              Participant

                                that forum seems kind of dead — why there and not here?

                                Spl25
                                Participant

                                  Thanks Celeste — you’re a wizard!

                                  Spl25
                                  Participant

                                    After one year of receiving treatment, which strikes me as odd because I usually see stories of early onset cutaneous AE, not after a full year.

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