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ed williams

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      ed williams
      Participant
        Billy I am exhausted just reading that adventure, you have more than earned some time off from treatments. When are you writing the book version of this adventure, so many state 4 folk are looking for advice on TIL’s these days you should think of putting out a more detailed version of the process you went through!!!
        ed williams
        Participant
          K, here is link to MRF site for cutaneous melanoma staging. The process is sometimes hard to follow, but basics are if no melanoma found in nodes then based on depth it will be stage 2, if nodes are positive then there are 4 levels of being stage 3. 3a, 3b,3c,3D. Each stage level has specific definition based on pathology report and how things looked under the microscope and if local lymph nodes were found to be positive for melanoma or not. Good luck with the process and do not be afraid to ask questions. https://melanoma.org/patients-caregivers/cutaneous-melanoma/diagnosis-cutaneous/
          ed williams
          Participant
            Hi K, until you get biopsy information no sense getting worried. If they want to take sentinel nodes then the depth of biopsy had to be enough to trigger further exploration. Aim at Melanoma and MRF (this site) both have very good information pages for staging that will explain the process of staging the biopsy and proper follow up depending on depth. https://www.aimatmelanoma.org/stages-of-melanoma/
            ed williams
            Participant
              There might be some data out there from similar clinical trial that Dr. Weber led looking at flip dose of Ipi+nivo plus 24 weeks of Tocilizumab (IL-6 drug similar to Sarilumab) this trial was reported at ESMO with some results. There may be some more IRAE side effect data out there to help. The addition of LAG-3 drug is different and very unique, kind of throwing the whole kitchen sink at things. https://www.medscape.com/viewarticle/963744?form=fpf&scode=msp&st=fpf&socialSite=google&icd=login_success_gg_match_fpf
              ed williams
              Participant
                MB, this is another injectable called RP1 and is in clinical trial called IGNYTE. Dr. Pavlick from Cornell Medicine talks about how it works in following short video. https://www.onclive.com/view/dr-pavlick-on-the-mechanisms-of-action-of-rp1-in-cutaneous-melanoma
                ed williams
                Participant
                  MB, this is Onclive peer panel doctor from Moffitt talking about how they use T-vec, May of 2023 video. https://www.onclive.com/view/tumor-directed-oncolytic-therapies-for-melanoma-and-cscc
                  ed williams
                  Participant
                    Jeff, staging is a process of gathering information. Depth of tumor, lymph nodes positive or negative. If positive you jump up to stage 3 and depending on some factors will settle into a letter following #3. I was 3a back in 2012 based on pathology and sentinel lymph node biopsy results. Not great options back then for treatment as there are now for what is called adjuvant treatment. Stage 3 is tough, do you throw the big guns at the cancer, if there is any left in body or wait to see if it comes back and then treat. I progressed to lung and brain tumors by 2013 and was treated with cyberknife SRS radiation for the brain mets and then qualified for checkmate 067 clinical trial where i was lucky to get nivolumab Pd-1 drug before FDA approved. Well, long story, short version, still here and drug treatment worked. Today there are more options for treatments if the cancer was to return than back in 2013-14 timeline. Big decision will be to wait and watch with scans or treat with immunotherapy right off the hop. Ask them to do BRAF+ mutation genetic testing to see if targeted therapy drugs will be an option. Aim at Melanoma has a great information page of what to do after staging as does the MRF have information to help you understand options. https://www.aimatmelanoma.org/?gclid=CjwKCAjw-KipBhBtEiwAWjgwrBCW6ihYXuPklhQrHcajTheIFJcrG_PrmWZ6t6yqCf0JCxD5zJY5aRoCP9oQAvD_BwE
                    ed williams
                    Participant
                      Finem, SOX10 and MELAN A are part of immunohistochemistry test that look at tissue from surgery tissue/biopsy using stains added to slice of tissue and then look under the microscope to see if tissue is melanoma or not. Following article gets into the testing of tissue. BRAF mutation status of being positive or negative does not make difference in first line treatment setting these days as Immunotherapy treatments have proven via clinical trials to be best starting point. If your tumor turns out to be BRAF+ then you have option if immunotherapy does not work of switching to targeted therapy drugs like BRAFTovi and MEKTovi ( there are two other drug pills combination to pick from).https://pubmed.ncbi.nlm.nih.gov/25356946/
                      ed williams
                      Participant
                        Lucas the recent findings from treatment for a couple of rounds and then surgery vs going right to surgery then giving immunotherapy as adjuvant treatment has shown in recent trials to be superior (look up Opacin, Nadina, Prado and Donimi clinical trials). Third following link gets good at 37:00 min mark neoadjuvant. Then first following links get into the research of neo-adjuvant immunotherapy vs adjuvant. Second link starts at 1hr 10min mark. https://www.nejm.org/doi/full/10.1056/NEJMoa2211437 https://www.youtube.com/watch?v=vSdUEfXHiLE https://www.youtube.com/watch?v=LPhuuC4QnTw
                        ed williams
                        Participant
                          Mike N, the new improved forum is just a mess when it comes to what post is shown. This post was from May of 2022, yet it is showing up to you years later. Not sure if Amy is still the voice of MRF!!!
                          ed williams
                          Participant
                            Jeff, without BRAF status they will probably offer one year of either of the PD-1 drugs, Nivolumab (Opdivo) or pembrolizumab (Keytruda). The problem with adjuvant treatment is the risk of developing life long issue from the drugs are real and for endocrine toxicities they will be life long. It all becomes stats at this point, what % chance of melanoma coming back vs doing observation with scans. Tough to make the right choice, I am sure your oncologist will go over the numbers with you. I had Nivolumab and developed kind of fatigue issues that have not gone away. I also have developed some stomach issues that are pain in the ass. I can not sleep on flat surface without acid reflux any longer. I stayed on the treatments for a long time as back then they had no end point, the drug as part of clinical trial was available until progression. Good luck with the decisions, no wrong way to go as if you decide to wait on treatment it will be just as effect if you were to progress. A lot of new stuff in development as well for stage 4 patients which is great in having options.
                            ed williams
                            Participant
                              Ed, following link features a leading expert in melanoma from Australia and she talks about the concept of neo-adjuvant treatment before surgery and the logic and immune response that can happen when tumor is present vs giving drug after surgery with no tumor present. Doctors can learn a lot by how the tumor tissue look under the microscope after surgery. When there is tumor the immunotherapy drugs have a target to do their thing. good luck with decision. https://www.youtube.com/watch?v=LPhuuC4QnTw
                              ed williams
                              Participant
                                The numbers come from Checkmate 067, which started in 2014 and patients could not have had Ipilimumab prior which was approved in 2011 time frame. So (untreated) would mean new stage 4 and if you read checkmate 067 clinical trial it goes into more detail of who qualified. Today with adjuvant immunotherapy by the time they are stage 4 they have had either targeted therapy or pd-1 treatment already. Go to result section of following article and you will see where the 945 # comes from. I was one of the 315 in the Nivo arm of the trial. https://www.nejm.org/doi/full/10.1056/NEJMoa1910836 https://clinicaltrials.gov/ct2/show/NCT01844505
                                ed williams
                                Participant
                                  What I should have written is “this topic has been reported for inappropriate topic!!!”
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