Stage 3/4 melanoma – what to expect?
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Stage 3/4 melanoma – what to expect?

› Forums › General Melanoma Community › Stage 3/4 melanoma – what to expect?

  • Post
    • April 27, 2018 at 7:25 am
    oliverjterry
    Participant

      Hi everyone:

      I've recently been diagnosed with either stage 3 or 4 melanoma, which probably spread from a primary tumor under my fingernail – I'm waiting on a PET scan to precisely determine staging.

      I have some changes planned in my life coming up (moving) and was wondering what kinds of treatment someone with either Stage 3 or 4 melanoma can expect. I know that I may have to have surgery, chemo, immunotherapy, or various other things depending on staging. How many treatments might I have for these, and over how long a period of time?

      Thanks for your help.

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    • Replies
        • April 27, 2018 at 1:19 pm
        Bubbles
        Participant

          Hi Oliver,

          Sorry you are facing all this.  First and foremost….LIVE!!  Live your life whatever that may be for you.  Second, know that many things…from standard of care to treatment options….have changed dramatically over the past 6-7 years.   It will be hard to predict your treatment or duration of same until you know exactly what you are dealing with.  There is adjuvant treatment available for those who are Stage III/IV with no evidence of current disease (NED) should you choose to take it.  Here is a primer of current basic melanoma care that may help explain things:

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          Hope that helps.  Ask more questions as you need.  This board is filled with smart, caring peeps.

          I wish you my best.  Celeste

            • April 30, 2018 at 12:43 am
            oliverjterry
            Participant

              Thanks for your response, Celeste – it's all pretty uncertain until I get the PET scan. Sentinel lymph node biopsy confirmed melanoma in 2 of 4 lymph nodes removed, so that doesn't really give me cause for celebration or worry. Uncertainty is really a killer.

              Thanks so much for all the great information. I'll definitely have a more in-depth look at it when I have a better idea of the staging.

              I plan to live. I try to be as sanguine as I can about it but I do realize that there is always the possiblity of death, maybe just a little sooner than I'd forecast. My mother died of cancer when I was young so weirdly I think I'm a bit more prepared than I otherwise might be.

            • April 28, 2018 at 1:09 am
            majahops
            Participant

              Crossing my fingers that you are stage 3. Either way, make sure that your surgeon sends for BRAF mutation status, and ask for next generation sequencing (if your insurance covers it) so you can find out your tumor mutation burden – the higher it is, generally the greater chance is that you will respond to immunotherapy. Also would find out your PD-L1 expression, since if it is very low, that would suggest that the excess toxicity of adding on CTLA-4 to anti-PD1 might be worth it (if you end up being stage 4). You can do this!!!

                • April 28, 2018 at 1:30 pm
                Bubbles
                Participant

                  Hey Oliver, 

                  Tried to post a response here last night…but it didn't work somehow.  Anyway….just wanted to let you know that a discussion regarding PD-L1 testing and its "value" in melanoma were discussed in some depth on a thread prior to yours recently.  Here's the link if you didn't see it already and are interested:

                  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/results-dhs-tuesday-ct-scan  

                  Ask more questions as you need.  Yours, celeste

                   

                  • April 30, 2018 at 12:46 am
                  oliverjterry
                  Participant

                    Thanks for the response! I've been looking into the various things available to me (I'm in Canada and most things healthcare are not a huge worry, thank god) and it looks like generally most things which are medically necessary will be available. I'l definitely look into the various things you've suggested, I think NGS is covered in some cases where Health Canada has determined it to be effective. Being an advocate for your own health seems to be really essential and I'm so glad that there are others out there who can show me how to do this effectively.

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