Local Recurrence

Posted By
Lucas
4/16/2018 10:23am
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Replies: 3

I recently had an extensive local recurrence located all inside of skin graft. This was removed by a 1cm wide excision which resulted in "close" margins. 7 weeks later i have a few tiny mealnoma dots outside of resction scar. They are right on the edge. I have stage 3b disease and am undergoing opdivo adjuvant just started i treatment. I stopped Keytruda clinical trial after developing type 1 diabetes and horrible arthritis. I also do not see a melanoma specialist (unfortunately) due to being unable to switch insurance at this time. I am in Kaiser system. Im hoping for advice on next steps or similar experience? thank you!

Kevin2016 - (4/17/2018 - 4:27pm)

Just curious about your horrible arthritis...I've been on Keytruda since the spring of 2017...I get an infusion every 3 weeks. In February, I had a viral infection and they said as my immune system was dealing with that and my immune system being boosted by the Keytruda - they said my immune system "over heated" and triggered an autoimmune response that was absolutely brutal. My joints (hands, knees and ankles/feet) were in extreme pain. They stopped treatments and put me on 60mg of prednisone and then titrated me off of that reducing it by 10mg every 3 days. When it got down to 10mg the pain all flared up again, so they put me on 40mg of prednisone and titrated me by reducing it by 10mg every 5 days instead (making it more gradual). I've had some pain at now at 10 mg. I just had an infusion of Keytruda last Friday. The last infusion I had before that one was Feb. 2nd. Today, I have felt more pain returning and I'm holding my breath that it doesn't get as severe a last time. Right now, I can barely open the cap on a water bottle...this has been a tough stretch, although my most recent PET scan was good showing only 2 lymph nodes lit up in my stomach area that they believe is only inflammation.

Lucas - (4/17/2018 - 5:23pm)

My legs would tremble in pain when I stood up. This was after only 5 infusions. Prednisone did help, but a year later my knees are permanently damaged and I’m 36 yo. I use to run and lift weights daily and I can do neither now. It’s kept my PET scans clear for 18 months but keeps popping up in the same primary spot. 

Lucas - (4/17/2018 - 5:23pm)

My legs would tremble in pain when I stood up. This was after only 5 infusions. Prednisone did help, but a year later my knees are permanently damaged and I’m 36 yo. I use to run and lift weights daily and I can do neither now. It’s kept my PET scans clear for 18 months but keeps popping up in the same primary spot.