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majahops

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      majahops
      Participant

        Is your dermatologist evaluating the moles you are concerned about with a dermatoscope (a magnifying lens appearing device)? If so, then there may be features that are reassuringly benign in his/her mind. If they are not, you might want to find a dermatologist experienced in dermatoscopic evaluation of pigmented lesions.

        majahops
        Participant

          I hate these lesions. They are very frustrating. Probably not melanoma, but definely request that they have it sent to a second dermatopathologist for an independent evaluation. Pathologists are human beings, and this is an area of subjective interpretation. It shouldn't offend them if you ask them to do this. Wide excision will most likely get it all, wouldn't worry about that specific point. 

          majahops
          Participant

            I would not regard this as a primary. Your baby needs to not just when it is born, but in 5 years, 10 years, 15 years, 20 years. I would deliver the baby at 35-36 weeks, then start Nivolumab +/- Ipilimumab (or +/- one of the IDO inhibitors) with minimal delay. Out of curiosity, what is your BRAF mutation status? I would request that they send your tissue for Tumor Mutational Burden and PD-L1 expression, so that you have the maximum amount of information to make an informed decision with. Have your baby, but play long-ball and start immunotherapy ASAP. That would be my humble recommendation.

              majahops
              Participant

                Please disregard the "or +/- one of the IDO inhibitors" part above. The Nivolumab +/- Ipilimumab part certainly stands. My heart goes out to you.

              majahops
              Participant

                There are few more renowned Melanoma specialist dermatologists in the world. Realize you'll likely be seeing one of his residents or fellows as well, but they will certainly be very thorough, themselves. But to answer your question, I'm almost wondering if you're joking – he's THAT good.

                majahops
                Participant

                  Nivolumab (Opdivo) is now FDA approved to be dosed once every 4 weeks, which might make things a bit easier for you. Pembrolizumab (Keytruda) is an equivalent drug, but dosed every 3 weeks. For you guys specifically, the 4 week dosing of Nivolumab would seem to be ideal. However, the real question will be whether to go with the Ipilimumab (x 4 doses) in addition to Nivolumab (continued until progression or excessive side effects). That would be every 3 weeks x 4 doses, and then you could switch over to Nivolumab every 4 weeks indefinitely. If you miss a dose or two, it's not a huge deal at all. I would ensure that you know his PD-L1 expression. If it is > 80% (arbitrary # really), then I'd go with Nivolumab alone. If it is < 20%, then I'd really commit to getting Ipilimumab in addition to the Nivolumab , at least for 1-4 doses. This is just one of many very reasonable approaches. However, at the end of the day, he should definitely get Nivolumab or Pembrolizumab, at the very least.

                  majahops
                  Participant

                    1) BRAF should be back in the next few days. 

                    2) Ask if they would be willing to check Tumor Mutational Burden and PD-L1 expression. Neither are mandatory, but can inform your likelihood of responding meaningfully to Nivolumab or Pembrolizumab monotherapy. Many academic oncologists won't take these factors into account, but some will, and if they will agree to check them, then you will have that option as well. 

                    3) Best of luck! Hoping for the best!

                    majahops
                    Participant

                      If your depth is indeed 0.5 mm at the end of all of this, you have an extremely high probability of being cured.

                      majahops
                      Participant

                        Point taken. I'm new to this. Definitely appreciate it.

                        majahops
                        Participant

                          Offend? You definitely did not offend anyone! I was just trying to reassure you that you haven't been deemed to require a medical oncologist yet, and that you are seeing a surgical oncologist. The terminology can be confusing and even somewhat misleading. No you haven't offended anyone, all of our hearts and very best wishes are with you!!!

                          majahops
                          Participant

                            I agree, that is why I only support using PD-L1 to inform whether to do Nivo alone or Nivo + Ipi at the extremes of expression. A person with PD-L1 > 80% has a pretty darn solid shot of responding meaningfully to Nivo. A person with < 20% expression has a very decent shot, but perhaps the added potential toxicity of Ipilimumab is more likely to be "worth it" for this person. But of course, this is very subjective. The much more important part is the recognition of monthly dosing of Nivolumab and how advantageous it could be for a person in just this situation. You make excellent points, though, and many experts would agree with you. 

                            majahops
                            Participant

                              Also, I want to tell you that your material is phenomenal and you are an amazing advocate. Very, very inspiring.

                              majahops
                              Participant

                                Celeste, thanks for the warm welcome. Again, I was only stating what would be on my "wish list." However, some of the trials that seem to be still open for Immunotherapy + IDO inhibitors include ECHO-203, ECHO-208, ECHO-202, NLG2107, NCT02073123 (not sure about the status of the last one). Other approaches that seem interesting include targeting TIM-3 and LAG-3. However, again, those are not anywhere near approved approaches. And again, that was just my "stage 3 wishlist." If I had stage IV melanoma, unless my PD-L1 was ETREMELY high, I would not mess around and would want Ipi + Nivo.

                                majahops
                                Participant

                                  Dose #44, eh? Can I ask what the status of your disease is?

                                  majahops
                                  Participant

                                    I agree with the *honest* reply of the previous poster. Would have been nice to have done an excisional, and also agree with insisting on a SLNB. To the Dermatologists credit, it was an amelanotic melanoma, and those are so frequently not at all expected to be melanomas, which is why he probably did a shave in the first place. I'll be cross my fingers for you.

                                    By the way, Dr Howard is a SURGICAL Oncologist, which just means a surgeon who removes tumors. In your case, who will remove your melanoma. It is he that you will want to ask for a SLNB, etc. You are not scheduled with a Medical Oncologist (chemo/immunotherapy doctor), and I hope you never will be.

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