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Newly Diagnosed and scared
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Newly Diagnosed and scared

› Forums › General Melanoma Community › Newly Diagnosed and scared

  • Post
    • April 12, 2020 at 8:01 pm
    THMoore
    Participant
      I am newly diagnosed with melanoma stage 3b. I was brushing my teeth and noticed a lump on my neck. I knew immediately something was wrong. I know my body. I was injured when I was 16 playing football. I am a incomplete quadriplegic. I use a wheelchair and scooter to get around. I went to 3 doctors that misdiagnosed me before going to MD Anderson. I ended up having surgery to remove the tumor from my parotid gland. It wasn’t until frozen sections were performed during surgery when I was officially diagnosed. 31 nodes were removed from my neck and 5 from my parotid gland. All were negative with the exception of the single cancerous lymph node. There was no primary tumor. I am currently receiving radiation and afterwards they want me to take immunotherapy. Being disabled, I am extremely scared to take Immunotherapy because I am don’t know if my body can handle the side effects. The oncologist says I can do it. Easier said unless your a quadriplegic.

      My questions are does anyone have or have had the same diagnoses. Unknown Primary and Melanoma of the Parotid Gland? If so, what actions were performed? Do you think I should take immunotherapy or a wait and see approach? Everything I read scares me to death.

      I would appreciate any words of encouragement and experiences encountered..

      Thanks
      T

    Viewing 4 reply threads
    • Replies
        • April 13, 2020 at 1:29 am
        doragsda
        Participant
          I don’t have melanoma, so I can’t give you first hand experience. However, my wife went from stage 2c to stage 4 with brain mets, and she is now NED after two years of immunotherapy.

          I can say, without reservation, that if I were diagnosed stage 3, I would do immunotherapy. It is a game changer in terms of melanoma treatment for many people. Melanoma can be very aggressive, and I would want to give myself every chance.

          Best of luck to you.

          • April 13, 2020 at 2:00 am
          Bubbles
          Participant
            Sorry you have to be here, T. Melanoma sucks great big green stinky hairy wizard balls!!! Still, yours was found having spread little from an unknown primary. The facts that your surgeon removed your lesion and affected node and you are being cared for at a facility that has melanoma expertise is excellent. Even so, melanoma is a beast you want to be in control of so it won’t get the upper hand! Like Doragsda’s wife and yourself, I too began my melanoma journey as a Stage 3b patient in 2003. At that time there were no effective melanoma treatments. I had no choice but watch and wait. So I did. Watched as another lesion developed on my arm in 2007. Watched as I developed brain and lung mets in 2010 – making me Stage IV. Even in 2010 – all current FDA approved and effective therapies were STILL unavailable!!! I was lucky to gain access to a nivolumab (Opdivo) phase 1 trial at the end of that year. My last dose of that immunotherapy was completed in June of 2013. I remain NED (no evidence of disease) for melanoma to this day. So – yes. Immunotherapy is not fun, but it is doable and can save your life. Data shows that even elderly and patients with known autoimmune conditions can tolerate immunotherapy. I am confident you can do so as well.

            Here is a primer I put together that covers current melanoma treatments if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html There is a glossary of acronyms and terms linked at the end that may be helpful.

            Further, the fact that you will be attain radiation and immunotherapy together is very good news. Radiation alone is not that effective for melanoma. However, when it is combined with immunotherapy – the results are much better than for either treatment individually. Here are a zillion reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

            Hope that helps. There are many smart and caring peeps on this forum. Ask more questions as you have the need. I wish you my best. Celeste

              • April 30, 2020 at 9:16 pm
              THMoore
              Participant
                Thank You Bubbles. I will keep you posted. I just finished radiation and now the oncologist wants me to heal for 2 weeks before he starts me on immunotherapy. So basically I had surgery in late February, finished radiation in late April and now will be starting immunotherapy in mid May. Confused due to the research that says they have better success when treated together. But I put my faith in MDA. Let me know what you think. Thx. T
              • April 13, 2020 at 4:49 am
              Tsvetochka
              Participant
                Definitely try the immunotherapy! I started at stage 4, unknown primary. Immunotherapy worked wonders for me.
                  • April 30, 2020 at 9:16 pm
                  THMoore
                  Participant
                    Start in 3 weeks.
                  • April 16, 2020 at 1:19 am
                  Rob is grateful
                  Participant
                    I’m sorry to hear about your diagnosis. I was recently diagnosed stage 3 in March. Just wanted you to know you came to the right place for support. I’m new here too and I’m thankful for this forum. We will make this journey together and get through it. I’m to start opdivo in a week after my scans. Keep us up to date.
                    Rob
                      • April 30, 2020 at 9:17 pm
                      THMoore
                      Participant
                        Thx Rob. Keep in touch.
                      • April 16, 2020 at 1:12 pm
                      swalters1038
                      Participant
                        Similar diagnosis and surgery…..I had radiation and then went on Tafinlar and mekinist versus the immunotherapy.
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