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Stage 4 now
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Stage 4 now

› Forums › Cutaneous Melanoma Community › Stage 4 now

  • Post
    • May 28, 2019 at 7:48 am
    JBM629
    Participant
      I was diagnosed in September ‘18 with Stage 2b. Surgery to remove the primary tumor on my back in October. SLNB negative. December brought a satellite tumor 6” from the primary and halfway to my lymph nodes under Left arm. I had Surgery and 5 rounds of radiation on both places on my back. Opdivo – 2 treatments but then liver enzymes went nuts, and I took steroids.

      May results on quarterly CT scan showed a few small lung tumors and a small tumor near the other 2 sites on my back, and some surgical changes/possible tumor or lymph node under left arm. Fell apart when they read my CT scan report to me in my oncologist appointment. I was not prepared to hear that I was now fighting Stage 4 melanoma. A dermatologist told me 1 year ago that the spot on my back was keratosis and “nothing to worry about!” He sprayed liquid nitrogen on it and sent me on my way!! Im still in shock that I got diagnosed with melanoma 7 months ago!!

      Had back tumor removed 10 days ago. Had 1st treatment of Yervoy 1 week ago and am feeling fine so far. Scheduled for #2 in two weeks.

      If you have had durable response to Stage 4 with immunotherapy, I would love the encouragement. I’m BRAF negative. Nodular melanoma was my primary. Being treated at MD Anderson – grateful to live an hour away! I handed my fear over to God and am trying to be brave and positive. I’m 60 and have been incredibly healthy my whole life., never had any surgery or hospitalization except spent 2 days in maternity wing after my daughter was born. I ‘m think I’m in shock. None of this feels totally real some days. Is that normal?

      Blessings to all. So glad I found this site!
      Junie

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        • May 28, 2019 at 5:33 pm
        Sharon93065
        Participant
          My cousin told me to find a group for support when I was first diagnosed with 1v melanoma. This Forum was it. Read my story in my recent post ‘Still NED’ rather than duplication.
          There is hope, and the treatments will work, and have TRUST and FAITH in God and just KNOW you will be okay. I broke down after hearing I could only have 3 Yervoy/Opdivo infusions. This Forum with those that went before us taught me the ‘cocktail’ is still working in us. After the Prednisone I was put on maintenance.
          Picture a tug of war, you are digging your heels in telling St. Peter at the other end “No I’m not coming yet!”
          Blessings, Sharon
          • May 30, 2019 at 11:52 pm
          Rocco
          Participant
            Hi Junie –
            You’ve found a great site to ask questions, gain perspective and support. I found this site in Aug 2005 shortly after I had been diagnosed right out of the gate at Stage IV. Luke 1:37 became my mantra throughout all of this. Yes, I’m still here after fully responding to immunotherapy (Ipilimumab)! After initial diagnosis my treatments went the traditional route, surgery, radiation and then we went with the (then) only Stage IV systemic treatment available, IL-2 which was no picnic. We still hadn’t stopped it, so next came the Phase III trial of Ipilimumab 10 MG/KG dosage. I had a complete response to that and have been NED ever since Feb 2009. ( Ipi was later FDA approved and named Yervoy). Hang in there!
              • June 1, 2019 at 6:35 am
              JBM629
              Participant
                Thank you!! I had Opdivo – 2 infusions, January and February – when I was Stage 3. I became exhausted. Diagnosis was liver toxicity. No immunotherapy after that until last week when I got infusion #1 of Yervoy! So far, so good. I’m putting Luke 1:37 on my bathroom mirror.
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