u/Immediate-Fee7083

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.

I have stage 4 melanoma that so far has been successfully treated with immunotherapy. Unfortunately, I am having a very rare side effect. The theory has revved up my immune system so much that I have immune related capillary leak. I have swollen up like the Goodyear blimp. I also have pleural effusions and trouble breathing.

I’ve been on high dose prednisone and infliximab for 6 months. I’ve only had slight improvement. My dr has ordered IVIG as the next treatment step. Some case studies seem to indicate it has helped similar patients with swelling.

I’m getting it this week over 5 days. Any tips or has anyone taken IVIG for this problem? How long until I feel better if it works?

Thanks for your thoughts.