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ed williams

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      ed williams
      Participant
        Debbie Churgai, just watched the ask the Expert webinar on youtube. Dr. Leah Sera was excellent on the topic of cannabis and I learned a lot. Not sure how it related to melanoma, as she could not answer any questions on the topic of melanoma as she is not an oncologist. Kind of missed a great chance to have someone with her who could have continue the conversation. It would have been nice to cover actual research on effects of cannabis for patients using immunotherapy, as that is what most people would have been wanting to hear about.
        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
                          Brian, you may find the following two video’s informative on the topic. MD Anderson is one of the leading centers in the US for treating melanoma and worth the effort to get 2nd opinion from Dr. Tawbi, or Dr. Davies or Dr. Glitza. Symptomatic brains mets and getting steroids taper down and things stable to be able to starting ipi+nivo (proven track record from checkmate 204 clinical trial) is difficult. Not sue about going Opdualag pathway as brain clinical trials with Opdualag are in early days with no proven track record. Ipi+nivo has several years and two major research clinical trials proving it works, ABC from Australia and checkmate 204. Targeted therapy for short period of time to keep things under control for a few weeks is used often when steroids are an issue. Faster you can get to ipi+nivo immunotherapy combination the better, even with the possible side effects the clinical trials have shown great results. Now, symptomatic patients do not do as well as asymptomatic but they still have good response that can be durable. Radiation, surgery, Immunotherapy and targeted therapy are all in play, which comes first and then what next is also debated with the experts but now that radiation and surgery have already started the next step is how best to get to immunotherapy. Steroids use below a certain level is a general rule before starting with immunotherapy, if on two high a dose it will work against the immunotherapy drugs and will not be as effective. Best Wishes!!!Ed Also Facebook group called “Melanoma stage 4” is the one I use now and it is solid group with lot’s of members with lot’s of experience to help with questions. https://www.youtube.com/watch?v=F8Md7EP_TH8 https://www.youtube.com/watch?v=4cBhvxvHWXk
                          ed williams
                          Participant
                            Jaclinfarr, if you go into discussion section of New England Journal of Medicine articles about original Ipi+nivo clinical trial called checkmate 067, you will see data on responses of patients who had to stop because of IRAE’s (side effects) and you will see that those patients did as well long term as those who got all 4 induction combination treatments. Bottom line, dose amount does not equal outcomes, some folk did great after just one treatment. https://www.nejm.org/doi/full/10.1056/NEJMoa1910836 https://www.nejm.org/doi/full/10.1056/NEJMoa1709684
                            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
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