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ed williams

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      ed williams
      Participant
        Could I ask what specific genetic test you had done? If it is something like foundation one then the information will make no difference in how treatment should be picked as the information is helpful in knowing if you have any other targetable mutations that might respond to other type of cancer approved treatments. For example the foundation one test might come back showing you have a mutation that those with lung cancer have and there are drugs approved in lung cancer that might work on your specific mutation. This would be an option if the standard of care drugs in melanoma didn’t work for you. Usually when starting treatment drug choice is stage related and in the case of stage 4 factors like tumor burden and location of tumors as well as your medical history are considered when picking best place to start. If you are in good health and have tumors in your lung and they are growing slowly then Pd-1 drugs like Pembrolizumab or Nivolumab might be the best starting place or the new combination of LAG-3 plus nivolumab called Opdualag might be a good starting point. If you have a heavy tumor burden with high Ldh values and the brain is involved then Ipi+nivo would be the place to start based on clinical trial results from checkmate 204. I guess the point I am trying to make is there are a lot of factors to take into consideration that your oncologist is trained in evaluating. What stage are you presently dealing with and what kind of treatment history have you had in melanoma. What specific location of tumors are you dealing with at the present moment?
        ed williams
        Participant
          Hi Azsocal, in the following video from one of the leaders in the field of neo-adjuvant melanoma research, Dr. Long covers her Australian based program in detail starting at 36:50 min mark. Earlier in the video she talks about use of immunohistochemistry ( staining of cancer cells and view with high powered microscope work)They also consider things like CD8+ T-cell and distance from tumor, T-regs(FoxP3 cells) and Pd-L1 staining. Interferon gamma and TMB (tumor mutational burden) are also considered in her research. So yes a lot more can be looked at depending on if your oncology team is into the research side of things. Now, Dr. Long is based out of Australia but seeing that you are So Cal, then I would recommend getting in touch with Dr. Antoni Ribas based at UCLA (see following link). Dr. Ribas is also at the cutting edge of tissue study and is also looking at injectable including TLR-9 targets and has worked with CMP-001 and a couple of other drug candidates. https://www.youtube.com/watch?v=LPhuuC4QnTw https://www.youtube.com/watch?v=JGA84FLyW-E
          ed williams
          Participant
            Anita, first if you have your pathology report or report from sentinel node biopsy if you could share the written part it would be helpful. Surgeon will not do sentinel node biopsy on melanoma in situ because by definition there is no depth and depth of melanoma in skin (mole) is what is used to decide what to do next. If you had sentinel node biopsy and wide local incision then the depth of original mole or melanoma tumor had to be at least .8mm or deeper for surgeon to do sentinel lymph node biopsy. In following video from MD Anderson one of the leading melanoma treatment centers in the world at the 4 min mark the Dr. explains the T category (depth of primary melanoma) and how that is used in staging process. The whole video is good and is about early part of melanoma journey. Best Wishes!!! Ed https://www.youtube.com/watch?v=O3wWLHRO6W0
            ed williams
            Participant
              Karen Sue, it took me 6 months of up and down steroid tapers to finally get grade 3 colitis under control. In my opinion some oncologist don’t give enough (1 to 2mg/kg) is recommended amount. I was about 105 kg at the time of my colitis and I was put on 60mg and then tapered down, it came back. Did same thing again, and it came back. Was put in hospital where I was given IV steroid at 150mg/kg for 3 days then pills with a 40 day taper period and I have not had any issue going on 2 year plus. Colitis was confirm via a colon scope with tissue sample taken, not a lot of fun but good to have pathology. Oct. is pretty far off, maybe have a good talk with oncologist and talk about what criteria they are using as a guide to control your situation. Liquid diet doesn’t seem like a way to get control of diarrhea, you might want to discuss that approach with your oncologist. Rice and plain food was the type of diet I was put on, I can’t remember the list but it was a lot of boring type of food. Here is a really good video link talking on management of all side effects caused by immunotherapy called IRAE’s. Dr. Weber is one of the leading experts in melanoma world. https://www.youtube.com/watch?v=37ze8NJGFhk
              ed williams
              Participant
                Mark made some good points and I am glad you have open communications with your medical team and you understand the risks of surgery vs staying on treatment. I might have missed something but did they do a PET-ct to confirm that the mass is still active cancer vs dead tissue (scar tissue). I had 3.5 cm mass almost same situation as yours and was not given surgery option based on location near major arteries in right lung. Back in 2014 I started on checkmate 067 trial and had reduction of tumor and then ct scans kept coming back stable no change for a couple of years. Mass went from 3.5 cm down to 1 cm. Finally got approval for PET-ct and SUV values came back at zero, so basically no metabolic activity (dead tissue). This could be a good option to do before doing a risky surgery, and if tumor comes back as active then you have more data to make such a big decision as surgery. The 7.5 year survival data for checkmate 067 ipi+ nivo melanoma specific survival is 57%, so if your scans come back as the tumor is dead then immunotherapy treatment would seem like a pretty good option to continue or stop after 6 month period of stable scans. Best wishes!!! Ed
                ed williams
                Participant
                  Lulu, if you don’t have a history of melanoma then I have no idea why your first stop is a melanoma web site because you have a funny looking mole. Even if you could post a photo, no one not even a dermatologist can tell what it is until they take it off and look under a high powered microscope with the proper staining applied. Derms are great for having experience of what might look like melanoma but even they get it wrong a lot when they just guess without sending out tissue to specialist to do proper staining and evaluation at lab. I have melanoma and if I scratch at an itchy mole, it will scab over and look crusty. Let an expert take a look when you can get a dermatologist appointment and go from there. If I have your history wrong (going by what you wrote above) and you have a history of melanoma then I would still give the same advice!
                  ed williams
                  Participant
                    That’s a great report, I like the word faint, would have been nice to be a little more precise by giving an SUV value if any or say nothing. I have found over the years that some of the folks that write these reports are more detailed than others and some flat out make careless mistakes. I would want my oncologist to take a look and confirm what the heck they meant by faint, put a number on it or don’t write it down. I learned long ago not to get excited by reports until I go over them with my oncologist, once they read the wrong guys scans and had me with liver mets growth compared to previous size, only problem is I had never had liver mets and it turns out they read the wrong person’s scans. Good luck with things!!! Ed
                    ed williams
                    Participant
                      Standard of care would be to do BRAF testing to see if your tumor is BRAF+ (positive) as that can give you option if down the road the melanoma was to show up again. Pd-L1 test is a staining test of the tumor tissue looking to see % of Pd-L1 in the tumor tissue. It is not really used to guide treatment in melanoma but some hospitals still do the testing as higher levels of Pd-L1 has a slight association with improved outcome if over a specific % in the staining of the tissue. They call this type of testing immunohistochemistry and is done with a lot of the clinical trials as they are always looking to see if there is a biomarker to help predict outcomes. So far no biomarker has been able to guide who should get which specific drug in melanoma other than BRAF+ requirement to get targeted therapy drugs to block BRAF+ mutation. The Castle test is interesting as it is used for early testing by some doctors but they have yet to prove via clinical trial that there is any predictive value as it really doesn’t matter what the result of the Castle test is as it doesn’t tell the medical team what treatment to use. It could be use for early patient to do closer follow up but that usually depends on insurance company policy. Castle has been trying for the last decade to gain traction but still is not standard of care or part of melanoma guidelines as standard follow up test. Here are two links on the trial, keynote 716 that led to Pembrolizumab approval for stage 2B,2C melanoma. https://www.onclive.com/view/dr-long-on-evaluating-adjuvant-pembrolizumab-vs-placebo-in-melanoma https://www.onclive.com/view/adjuvant-pembrolizumab-results-in-significant-dmfs-improvement-over-placebo-in-stage-ii-melanoma
                      ed williams
                      Participant
                        Well, if you want to get into the weeds then I suggest Dr. Love and the web site he has where leading oncologist come and speak about there specific cancer type and leading research in that cancer. Site is called “Research to Practice” You have to join and melanoma is under the category of dermatological. No fee to join, you just have to do the sign up thing and if you want update you can pick updates option. This link is from a few years ago but goes into really detail of understand of what is happening with drugs in the tumor microenvironment. Gets into T-cell and activation and all the geeky science stuff. If you start around 4:30 min point Dr. Luke gets into tumor microenvironment, Pd-L1, tissue staining for Interferon gamma, cold and hot tumors etc. http://www.researchtopractice.com/ImmunotherapyInterviews118/Video?playlistIndex=0#t=4m4s
                        ed williams
                        Participant
                          Bubbles article got me to thinking and I took a look at some old files and came across this!!! https://aacrjournals.org/clincancerres/article/24/20/4960/258157/Baseline-Tumor-Size-Is-an-Independent-Prognostic
                          ed williams
                          Participant
                            Second article , efficacy section fig.6 shown graph over time of CR vs PR vs Stable disease.
                            ed williams
                            Participant
                              Hi Gigi, I didn’t have the PET-ct until 2018 as I was on clinical trial and was having scans every 6 week first year and then every 3 months since. I live in Ottawa the capital city of Canada and the health system has some great features and also some limitations and scanning melanoma patients would fall into the limitation section. I was finally approved for a PET-ct 4 years into trial so up to that point I was considered a partial responder since you could see the tumor on ct scans. Based on the PET-ct the trial didn’t change my status to my knowledge since it wasn’t done as part of the trial. I consider that I have been NEAD (no evidence of active disease since early in trial. Funny part of story, I had cyberknife SRS radiation in Oct. of 2013 for 3 small 4-5mm sized tumors in frontal regions mainly of brain. After cyberknife and before starting trial my biopsy proven lung tumor began to reduce in size down from 3.5cm on ct scan. They called it a spontaneous regression at the time, my theory and it is only a theory is that the radiation killed melanoma tumors and antigens were taken up (presented) to my lymph node where T-cell are activated and they went to work looking for similar targets which they found in my lung. Or the lung biopsy (aug of 2013) where they stick a large needle into your lung and take out some tissue had the same effect of killing some melanoma tumor cells and activated the immune system and when given immunotherapy on trial the tumor continue to respond. Now, to your question about data on complete responders vs partial responders vs stable disease. There is data buried in following links, go into tables and graphs from clinical trial that I was on called checkmate 067. https://www.nejm.org/doi/full/10.1056/NEJMoa1709684 https://ascopubs.org/doi/full/10.1200/JCO.21.02229
                              ed williams
                              Participant
                                As long as you are getting your explanation from your oncologist, I thought you had not spoken to the medical team yet. Medical speak is different for each specialist in each specialty of the body from my experience, I guess that is why it takes so long to become a specialist of one region of the body or the use of technology like radiation oncology or radiation neuro surgeons etc. I remember a few years back when I had been using what is called the 3T MRI machine at the Ottawa hospital for my follow up for 3 brain tumors, around the year two point of having SRS treatments, the MRI department booked me into the older less powerful MRI machine at the hospital and the specialist who read the report saw something in the region of one of my 3 tumors. Well, this can make life more exciting until my specialist radiation oncologist said not to worry!!! His comments were something like ” we will go back to 3T machine in two months just to be sure instead of waiting for normal 3 months period.” The specialist felt is was nothing, which turned out to be accurate but it still makes things sporty when some expert in a small room somewhere reading a report, they see something but they don’t take into account all the information properly but still writes a report that can throw a cancer patient’s life into a tail spin. Hope the scans keep coming back as positive as this one!!!Ed
                                ed williams
                                Participant
                                  Hi Anxietyalldaylong, you might want to try and actually use a real name on the forum. I wrote a post yesterday to you, since when I tried to reply yesterday, it said this post was reported to admin??? Well it seems to be working now, my idea was to post your actual report and let some other read and help (maybe) to give you their experience in reading medical lingo!!!
                                  ed williams
                                  Participant
                                    Mark, it was about Anxietyalldaylong, who posted about results but I could not write on his post, said is was reported for some reason?
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