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Looking for some advice

Forums Cutaneous Melanoma Community Looking for some advice

  • Post
    sj
    Participant
      Apologies for all of the posts lately.

      I provided my last update here: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/another-update-1

      Here’s some info from my pathology report(s):
      Tumor Site: Skin of scalp and neck
      Histologic Type: Melanoma arising from blue nevus
      Maximum Tumor (Breslow) Thickness in Millimeters: At least: 8.00 Millimeters (mm)
      Tumor Extent:
      Macroscopic Satellite Nodule(s): Not identified
      Ulceration: Not identified
      Anatomic (Clark) Level: V (Melanoma invades subcutis)
      Accessory Findings:
      Mitotic Rate: None identified
      Microsatellite(s): Not identified
      Lymphovascular Invasion: Not identified
      Neurotropism: Not identified
      Tumor Regression: Not identified
      Perineurial Invasion: Appreciated
      LYMPH NODES:
      Number of Lymph Nodes Involved: 0
      Number of Lymph Nodes Examined: 2
      Number of Sentinel Nodes Examined: 2
      PATHOLOGIC STAGE CLASSIFICATION (pTNM, AJCC 8th Edition):
      Primary Tumor (pT): pT4a
      Regional Lymph Nodes (pN): pN0

      So, it was a large enough tumor that had invaded my nerves and the subcutaneous region. Obviously given its size, it’s a cause for concern.

      WLE & SNB were clear – no evidence of residual cellular blue nevus or melanoma, but as can be seen from Tex’s history that doesn’t necessarily matter. He had distant metastasis within 6 months, and he thinks it may have spread via his blood and left the lymph nodes alone. He also had melanoma in his scalp (as did I), but his tumor was a different size and I think it was ulcerated and it wasn’t melanoma ex blue nevus like mine so technically different types of melanoma.

      Now, I don’t have intravascular invasion, and the nerves it invaded didn’t go anywhere important, but despite the intravascular invasion the depth of the tumor just worries the hell out of me.

      Up until now I’ve been dealing with a surgical oncologist and he is going to close me up on Friday. I have a 5cm x 5cm hole in my scalp, you could almost fit a hockey puck in there, and you can see my freaking skull. It’s unnerving. I’m looking forward to it being closed.

      Once he is done I’ve asked to be seen by the melanoma specialist at Duke – Dr. April Salama. Some of the great people on here have worked with her in the past.

      I want her to establish a baseline PET scan, because the CT they did of my abdomen, while it said no evidence of metastasis it did note 3 lesions that were too small to classify – one of which hasn’t changed since it was last identified (march of 2019), so I want these lesions monitored to see what they are.

      My question really is – how does my approach sound to you? Should I be doing anything else? I’m going to leave it up to Dr. Salama to determine next steps after the baseline. I guess I’d really like to be put on some sort of immunotherapy just to be safe, or safer really, as a preventative. This melanoma had some nasty, nasty chromosomal aberrations. I don’t think I’m BRAF positive, but I’ll let her decide that as I’m not a pathologist. I’m assuming I should be put on Nivolumab (Op Divo).

      I just don’t want to do nothing and find out in a few months i have distant metastasis. If it can be prevented I would love to act now.

      Thank you for listening/reading.

      Thoughts?

    Viewing 4 reply threads
    • Replies
        JudiAU
        Participant
          I believe it is established fact that a neck/head melanoma is more likely to travel to brain. I don’t believe a PET scan will pick up brain Mets. So I would want to know if it would be good choice to do a brain MRI base line.

          My cancer was very established in my body. It my at my neck near my collarbone. But my brain had my biggest met. They were able and had to surgically because of location near language processing center.

            sj
            Participant
              Thank you. They did a brain CT and the brain was clear. I had a few MRIs on my brain over the past few years because my sister had an aneurysm and they were seeing if I had one too.

              Thankfully it was clear. Brain looked normal for someone my age. But another MRI would not hurt

            cancersnewnormal
            Participant
              Quick glance at your pathology looks like you’re stage II b. Is that accurate? —– Stage IIB

              Tumor is 2.01 – 4.0mm thick, with ulceration
              OR
              Tumor is greater than 4.0mm thick, with no ulceration
              No spread to nearby lymph nodes
              No evidence of metastasis to distant sites

              IF so, you’d be looking at a clinical trial in order to get any adjuvant immunotherapy post WLE & SNB. Unfortunately, we’re typically at the mercy of “standard of care”, and any potential “lumps or bumps” noted in your CT last year are considered “incidental findings” until growth or spread. You could certainly ask for another CT for baseline… you could even ask for a PET… but if you’re in the states, your insurance company is proooobably going to push back on the PET as an expense. The CT might be agreed to. While it’s absolutely terrifying to learn that you have melanoma, and to read how similar your story is to another patient who progressed, please try to keep in mind that there are many others who did not progress from whom we don’t hear anything… because… well… they’ve no reason to seek further advice.

              THAT said… I’m of the nature to push every envelope and button that I can, until I’m told no more than once. ;) Sooooooo…. it can’t hurt to ask the doc. Just try to keep in mind that you may have to live with some uncertainty, which is one of the most difficult things about a diagnosis.

                sj
                Participant
                  Thank you Niki, you are correct I have officially stage 2B (tumor was 8.00mm with no lymph node involvement and no distant metastasis).

                  Thanks for your insight – I was pretty naive and wasn’t aware it could possibly pose an issue with insurance, etc.

                  That’s really good to know, thank you.

                  Thankfully I found a clinical trial being done here in NC with Nivolumab and a couple of other drugs and it’s for stage 2 and stage 3 tumors, so hopefully that’s something Dr. Salama thinks is a good fit. It runs until August 2021, but they’re still accepting registration which is good to know.

                Gene_S
                Participant
                  Hello,

                  My husband had a melanoma on his scalp and it was 10.5 mm. It was not from a blue nevus but a black mole.
                  They removed a big area off of his head/scalp at 10.5 cm and did a skin graft from his thigh. His SLN biopsy was clear.

                  He had a reoccurrence on his head 9 months later. He had several more surgeries on his head and 1 on his neck.
                  Then he had an unresectable lesion at 2 years 9 months after the initial diagnosis with numerous subcutaneous ones
                  at that site. Then it was discovered from scans that he also had lesions in his liver and lungs. It never went into his brain.

                  He was put on a clinical trial for IPI (10 mg/kg) and GMCSF. He became NED in July 2012 and has remained that status.
                  If you would like to read more about his journey you can read his profile.

                  Judy the loving wife of Gene Stage IV and now NED for 7 years and 7 months.

                    Gene_S
                    Participant
                      I might add that he was Stage III at his diagnosis because of the size and at that time there was nothing for Stage III except interferon
                      and he chose not to do it.
                      sj
                      Participant
                        Thank you Judy. Congratulations – being NED for over 7 years is a great blessing for you and Gene. :)
                      ed williams
                      Participant
                        Hi there SJ, glad no melanoma in lymph nodes and hoping that this will be the end other than follow up scans and skin checks for you. If you are interested in more information for patients like yourself that don’t qualify for treatment other than neo-adjuvant trials looking at some stage 2 patients but mainly 2c with ulceration. Here are some Onclive peer panels discussion of neo-adjuvant research and where things are. https://www.youtube.com/watch?time_continue=296&v=aqE-f8YB0WI https://www.youtube.com/watch?time_continue=338&v=v3ozz8aMPbI&feature=emb_logo
                        ed williams
                        Participant
                          Hi SJ, this video was on Md Anderson published today on facebook talking about a study they just finished on stage 3 patients who had MRI scans before stage 3 and what factors that could predict future brain mets. I will let you watch the video of Dr. Michael Davies and Dr.Haydu. I hope you never have to deal with brain mets but getting them early makes a different, when they are small SRS radiation and or ipi+nivo immunotherapy have both been proven to have durable results. I had 3 small 4 to 5mm sized ones back in late summer of 2013 and had them zapped and no issue since treatment. Good luck with your research!!!Ed https://www.facebook.com/MDAMelanomaMedicalOncology/videos/180389743368950/
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