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tkoss

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      tkoss
      Participant
        an update on nerve damage. I have never been able to get onc surgeon or oncologist to say much about my nerve damage. In particular I asked about an kind of PT to help. They smiled and nodded in the way the do.

        but

        once out of the room the nurse said this: they don’t recommend PT before 6 weeks because, in my case of a lymphodectomy, that PT could dislodge remaining melanoma cells from excision site.50

        tkoss
        Participant
          btw gopher and JudiAU

          i am still playing doctor. new clinic has not accepted me yet.

          current oncs talked about getting a petscan……i see on the patient forum its not been scheduled.

          but also

          would a brain MRI be in order? in essence i am kinda starting over from the beginning. my thinking of course….if LN’s were much larger than original condition then its seems 60chances are microscopic melanoma likely other places but especially the brain.

          tkoss
          Participant
            thanks gopher and judiAU

            i am going to Tex Onc who have an melanoma specialist in Dallas

            preciate you all’30s help.

            posted my experiences for newbies but it seems forum participation way down… so probably won’t reach anyone

            tim

            tkoss
            Participant
              pss…should i have had a brain scan as well? did so originally.
              tkoss
              Participant
                thanks gopher ..i take all ur points

                judiAU…i am in Fort worth. i was at texas oncology and they had 1 melanoma specialists for 400 doc, in houston. so i went JPS FTW where my bro got good care for throat cancer. Ist onc suregeon was very good….alas he moved on.

                so if there is anyway to find a melanoma onc specialist i would love to try. i am on medicare.

                tkoss
                Participant
                  a follow up to my own post:

                  i have no idea if these guys know didly about melanoma. I left one practice cause out of 400 oncs they had one melanomoa specialists.

                  so if they don’t specialize maybe they are not qualified to be my docs???

                  also, and forgive me for sounding like i know something….but have been forced to the internet for knowledge.

                  i definitely have never had a BRAF test but it seems that can be equally as efficacious as immo therapy and….660

                  I understand there is not much or any improvement with ipi+ nivo vs nivo…i am , self ascertained 3c. No comment on that from ONc’s after 3 years+.

                  tkoss
                  Participant
                    that i 1 year not 91.
                    tkoss
                    Participant
                      case study. type 3c. excised 4 axial LN and did 91 year opvido. never were the LN’s macroscopic, meaning no swollen LN or anything to visually observe.

                      1-1/2 years after last infusion both axial areLN’s enlarged and hardened to point of discomfort and will be removed next week.

                      i presume i will do immmo again after that.

                      just specualtion but the time from 4 existing microscopic LN to enlarged, was 2-1/2 years its almost like opvido did little to nothing. no way to know i quess.

                      tkoss
                      Participant
                        thanks for your replies . i insisted they postpone surgery until my concerns and question were allayed. they were.

                        tkoss
                        Participant
                          JPS? who , what? well its the county hospital where u go for gunshot wounds, car wrecks, indigent care

                           

                          and this

                           

                          Fort Worth’s JPS Named the Best Hospital in the Nation – D Magazine

                           

                          its not unusual to go for a scan and see a deputy with a prisoner in shackles……but they  saved my life.

                           

                          I could have gone to Texas Oncology but it seemed the 400 doc practice, at least at the partner level opposed Obamacare.  go figure. the AMA once opposed Medicaid. Docs are political creatures too.

                          tkoss
                          Participant
                            my derm basically told me he doesn’t do surgery if it reaches the dermis.

                             

                            you want to get all the melanoma, beyond the margins.

                             

                            my wle required anesthesia and I used an oncological surgeon who understood surgery and cancer.

                             

                            if you have a choice, why not go with the best available?

                            tkoss
                            Participant
                              my onc said it would happen

                               

                              2nd Moderna shot. lots of local pain at injection site, upper body soreness, some fatigue. 24 hours later.

                               

                               

                              i wonder why 2nd shot would be so much worse than the 1st.  any ideas?

                              tkoss
                              Participant
                                3c. 4 axial  Ln’s  removed.

                                i finished a year of Opvido in December. Since ending infusion I have had no ill effects except for a small bout of constipation.

                                Onc assured me there were not lingering effects from immo, although I might disagree in as much as I never had constipation before. That’s 64 years of history.

                                no fatigue though.

                                I did one round of Moderna with no side effects , Onc told me there would be side effects on second round including fatigue.

                                tkoss
                                Participant
                                  a short intro. biopsy done, holiday looming , so i read my path report online. a few key words gave me a clue otherwise totally Latin to me. my opinion is the more you can research before you meet with the Doc the more questions you can poise. You will find yourself leaving an exam wishing you would ask this or that.

                                  more importantly:

                                  I had a Oncological Surgeon do the SLNB and WLE. In the consult about lymph node scanning and surgery he discussed SLNB vs. CLNB and other factors. but he knew his way around a cancerous tissue.

                                  I don’t know what level of expertise you might get from and ordinary surgeon.

                                  tkoss
                                  Participant
                                    thanks, under medicare anything infused is covered by Part A & B.

                                    i was thinking about the other drugs that might be invovled if you are treated for Stage 4. pain or nausea or swelling or other palliative or complimentary drugs.

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