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Just finished Opdivo

Forums Cutaneous Melanoma Community Just finished Opdivo

  • Post
    Rob is grateful
    Participant
    Good evening to all,

    Quick recap on my story, I was diagnosed stage 3a with a 3mm tumor in one lymph node and 0.1mm tumor in a second lymph node. My primary tumor was stage 1b. I started opdivo treatments 1 year ago and just received my last one. The side effects were not too terribly bad. Fatigue and a mild rash were the worst of them, and I never missed a day of work with the exception of infusion days. After my infusion in the morning I went back to work as an hvac tech the rest of the day. Living in West Tennessee the sun can be brutal, so I’ve had to make some small changes in my routine to include sunscreen and some cool wide hats. Obviously I’ll be seeing my oncologist and dermatologist regularly and will have scheduled scans the next few years.  The intention of the post is to tell people newly diagnosed with stage 3 not to lose hope. Get off the internet and realize the data you are looking at is old and doesn’t include outcomes with adjuvant therapy.  We’ve got this.  We will be ok, and life goes on!!!  (With sunscreen and wide hats). Don’t be scared of the sun, just respect it.  A very special thank you to all the people on here offering support and encouragement. I pray for everyone touched by this disease and the ones caring for us.

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      ThinkingPositive
      Participant
      Cutaneous
      That’s great news Rob! Thanks for sharing! I also have a large collection of cool wide brimmed hats and keep half in my car so they are always available to me.

      All the best to you, Cindy

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      chrispl1974
      Participant
      CutaneousClinical Trial ParticipantNEDMucosal
      Hi Rob,

      Fantastic news. Glad to hear you have finished your treatment with hardly any side effects and keep being NED. I was diagnosed in January 2019 with a very similar risk profile. Stage IIIa with micrometastasis in 2 lymph nodes. Here in Germany they don’t measure the size of the deposits in each lymph node, but I had very small pockets in one of the nodes and isolated cells in the second.

      I did 1 year of BRAF/MEK treatment and finished the regime in January 2020. So far so good.

      I am still worried and every 3 months I go for my check up, which involves ultrasound and detailed blood samples including LDH and S100 levels, I am a nervous wreck during the preceding weeks. All has been normal since the very beginning and my blood work has not changed.

      You are right. Internet data is completely outdated. The oncology team here in Germany tells me that with the current developments and code breaking of our genetic makeup , involving all the discoveries around interaction of proteins etc., there might not be a cure, but it should become a very treatable disease for most ,which can be converted into a chronic – controlled illness, much like diabetes, HIV etc.

      I pray for all touched by this disease and also my deepest gratitude and respect goes out to all scientists, caretakers and medical staff around the glob.

      God bless you.

      Christian

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      MDelysle
      Participant
      Hi Rob –

      I love your post! Not only am I happy for you, it made me feel much more hopeful for us all.

      Thank you!!!

       

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