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recurence …what’s next. not a good doc story!
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recurence …what’s next. not a good doc story!

› Forums › General Melanoma Community › recurence …what’s next. not a good doc story!

  • Post
    • November 5, 2022 at 11:20 am
    tkoss
    Participant
      original path report in 2019. 4 left axial lN’s discovered melanomic via Petscan. removed. 1 year of opvido. 1-1/2 years of NED determined via CT scan every 6 months. so 2-1/2 years NED since LN surgery. After last CT within 1-2 months left axial LN”s blew up to form a very noticeable mass. I didn’t think anything of it. could have been other infections, weight gain, maybe even covid..LN would grow and shrink back. here is an important statement: I don’t recall my onc advising me to check axial LN’s and report to him if there were enlargements. the point here is that it was at least 4 months till next CT scan where 3.5 mm thick nodes were found. 9 removed last week and confirmed melanotic.. NED everywhere else.

      What happens next? Frankly Onc Surgeon and Onc not very informative about what they were doing. I had to postpone surgery cause Onc Surgeon didn’t bother to explain what he was going to do. He also way minimized risks of nerve damage. Consults took less than 5 minutes. Now i have a dead arm and he blithely remarked it might improve, obviously suggesting it might not.

      3 weeks since surgery and not a peep from the onc. no scheduled appointment or any communication what so ever. onc surgeon said his work was done. Might be a tumor board. but as far as I know they threw my case file in the trash.

      who do i enquire about my dead arm for instance? is my case going to a tumor board and how often do they meet? i figure its more opvido. maybe they don’t want to argue with medicare…..i mean who knows what going on, but communication*0 and urgency are certainly not

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        • November 5, 2022 at 11:32 am
        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+.

          • November 7, 2022 at 4:12 pm
          JudiAU
          Participant
            I am really sorry to hear this. I think you need a melanoma specialist. Where geographically are you? We might need to make suggestions. There are quite a few trials that give access to the combo? IMHO a lot of surgeons are not great about follow up care. I’d guess you need to see an orthopedist to evaluate damage and do some physical therapy. Nerve damage can heal. Sometime PT can help you to learn to work around weaknesses.
            • November 7, 2022 at 6:23 pm
            gopher38
            Participant
              I think I had a much improved response from ipi+nivo, so I wouldn’t count that out. And I think you should definitely be tested for BRAF immediately. I’ve had some what I believe will be permanent (but what does that mean when you’ve got Mel IV) nerve damage, but yours sounds worse. It sounds to me like you should be looking for a new care center. That said, I think they’re always non-committal about how much or if things will heal. Probably wise, but not what we want to hear as patients. I had a hernia operation which left me with marked numbness in one leg, to the extent that my gait was way off. One foot would not really get off the ground too well. Got better thankfully, but right after the operation, the doc’s only comment was: “hopefully it will get better, but it might be permanent”. Not what I wanted to hear.
              Anyway, you should definitely know if BRAF is an option.
              • November 8, 2022 at 3:58 pm
              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.

                • November 8, 2022 at 4:47 pm
                tkoss
                Participant
                  pss…should i have had a brain scan as well? did so originally.
                  • November 11, 2022 at 10:55 pm
                  JudiAU
                  Participant
                    Can you go to MD Anderson? I hear they have a very fine cancer department.
                    • November 14, 2022 at 11:11 am
                    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

                        • November 14, 2022 at 11:43 am
                        gopher38
                        Participant
                          Well I’m still lurking on the forum, and I certainly hope it doesn’t go away, because I know it’s been very helpful to me. Both for the support/commiseration aspect, as well as the more technical/knowledgeable support from the Bubbles and Eds of the world. I think there are still quite a few people lurking here, even if posts are down. Good luck with Texas Oncology.
                        • November 14, 2022 at 2:39 pm
                        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.

                          • November 14, 2022 at 7:06 pm
                          GeorgiaFritz
                          Participant
                            Chcete nájsť techniku, vďaka ktorej bude váš dom vyzerať viac ako päťhviezdičkový rezort? Vonkajšiu sprchu v hoteli Nivito musíte vidieť. Táto krásna sprcha má minimalistický, moderný vzhľad, ktorý sa hodí do každej kúpeľne. Vďaka svojej pevnej a nehrdzavejúcej konštrukcii z nehrdzavejúcej ocele vám tento výrobok bude dobre slúžiť mnoho rokov. Po plávaní alebo cvičení môžete jednoducho použiť ručnú sprchu, ktorá je súčasťou vonkajšej sprchy Nivito. Svoju novú vonkajšiu sprchu môžete začať používať hneď, pretože je jednoduché ju nastaviť.
                              • November 15, 2022 at 10:16 am
                              gopher38
                              Participant
                                My onc scheduled a brain MRI right after we learned that I had distant progression from the original site. I think he wanted to get a baseline on where we were, encompassing all parts of the body. I’m not sure if that’s standard practice, but it seems wise to me. Perhaps insurance coverage plays a part also.
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