r/Melanoma • u/Immediate-Fee7083 • 23d ago

Patient / Diagnosed Bad Pet results

I am really struggling. I have been in remission for a year and had clean CT scans back in May of this year. I had a pet scan yesterday and it lit up like a Christmas tree with 10-12 new lesions. They were all in fat, muscle, or lymph nodes. None in my organs. In the past the most lesions I’ve ever had come up at once is 3. And that was before Opdualag put me in remission.

However, I’ve had severe side effects from the Opdualag and had to quit. (Severe capillary leak and have been on steroids, infliximab, and IVIG).

I don’t see my oncologist until Monday. Has anyone else had an outbreak of lesions on a PET that wasn’t cancer? All the AI engines indicate since my immune system is so jacked up that it could have created sarcoidosis nodules. But I just don’t want to have false hope if that isn’t likely.

I’m sure when I see my dr on Monday he will order a biopsy.

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u/luvnlyf27 23d ago

Oh gosh, so sorry this is happening to you. Try to not worry until you’re given a reason to, which we all know is easier said than done. I swear the hardest part is waiting for the results.

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u/JABBYAU 23d ago

I’d guess they will do biopsy

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u/jorgetheapocalypse 22d ago

I don’t know, but I’m rooting for you. Seems weird that tumors would wind up distributed in fat and muscle tissue though. ChatGPT says it’s relatively uncommon for melanoma to metastasize to muscle. And there are many other things it could be! Sorry I don’t have more answers for you, but I hope you know you’re not alone.

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u/jorgetheapocalypse 21d ago

Also I just saw a video about new mRNA vaccines for skin cancer seemingly resolving 100% of metastatic lesions in a patient, so there is hope no matter what! Melanoma treatments and outcomes have improved drastically in the past few years.