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2.5 years after diagnosis and treatment
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2.5 years after diagnosis and treatment

› Forums › General Melanoma Community › 2.5 years after diagnosis and treatment

  • Post
    • March 16, 2018 at 11:17 pm
    geriakt
    Participant

      I was diagnosed as 3B April 2015. After tumor removed and nodes removed in Sept 2015 I entered in to a clinical trial of 50 weeks of NIVO (25 treatments of Nivo). During that time  and until November 2017 I have had full body CT scans every 12 weeks. All negative. I finished Nivo treatment Sept 2016 and now I am on CT scans every 6 months.

      My question is when can I move to CT scans every year or just stop. The CT scan are very expensive at about $5000 each out of my pocket.  I stopped contributing to the clinical trail because the CT scans at the treatment hospital cost $5000 each out of my pocket since I have a high deductable.  My other option is having CT scans at an Imaging Center for $2500 each.

      Tom

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    • Replies
        • March 17, 2018 at 12:06 am
        Bubbles
        Participant

          Hi Tom,

          First of all YAY!!!!  Congratulations!  In my trial, I had scans every 3 months as well and continued that schedule for one year post trial, which had been of 2 1/2 years duration.  I then had scans every 6 months for another year.  Since then, I've been having them annually.  I too was treated with only nivo.  However, I was a Stage IV patient post mets to brain, lung and tonsil.  That is my experience…for what it's worth.  My last dose of nivo was in June of 2013.  So far, there is no specific standard of care for follow-up for those of us who have outlived our stamped expiration date.  I guess you have to do what you and your doc are comfortable with.  Yours, celeste

            • March 17, 2018 at 2:43 am
            Toby0987
            Participant

              I’m 3b too and Mayo rochester mn melanoma crew stopped all scans after 5 years-no more unless I feel lumps etc

            • March 18, 2018 at 4:21 am
            TexMelanomex
            Participant

              I love this thread! These are the conversations I hope to be a part of someday and excited that you are havng it. Although I don't have the answer to your question Tom, I find it inspiring that you guys are having it! 

                • March 19, 2018 at 1:47 am
                geriakt
                Participant

                  Tex, 

                  Thanks, yes I am am blessed for my treatment and also that it went well for me. Now after 2.5 years I am trying to figure out what the proper next steps are.  I also want to have my power port removed.

                  I complete 2.5 years of my clinical trial, but I just quit because my trial doctor and the trial sponser started yanking my chain on contintinued treatment and costs. The sponser  wants my CT data, but no longer wants to pay for it. I made the choice to move on. 

                  Tom

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