So Bubbles frequently says this (be patient WTP) , quoting some melanoma big dog, when someone asks how long until immunotherapy starts working. I think the point being that it can start working quickly for some people, but sometimes takes much longer, so hang in there. I've got another data point to add.
To recap previous episodes, I started opdivo in ~ Feb 2018 and went for a year on that. Aug 2019 (so about six months after ending opdivo and having been NED to that point), I had 8 new skin melanomas pop up all over the torso, from neck to butt. Started combo therapy in Oct going to roughly end of Dec 2019.
Had a PET, CT scan in Jan (so just after stopping the combo), and they found multiple spots in the lungs. They also did a brain MRI and found one lesion in the brain. Just after that, I started getting severe pain and numbness in legs and feet, to the point where I couldn’t stand for more than short periods of time. Doctor thought that it might be spread to spinal cord or leptomeningeal fluid (apparently they had seen some suspicious - but not conclusive - things on the PET, and the spot on the brain was near the fluid). Things weren't looking good at this point. We talked briefly about going to targeted therapy, but both him and I wanted to give the immunotherapy some extra time. Things have been looking up since then.
First, I had the gamma knife for the brain lesion, which went well. Then, spinal tap came back (much to my surprise) negative for cancer. Full spine MRI came back negative also, and neuropathy - while still present - started lessening.
March 2020 was the next CT, so about 3 months after ending combo therapy, and it started out like this:
** IMPRESSION: Interval resolution of nearly all pulmonary nodules, with one of the dominant left upper lobe previous nodules now is a small groundglass opacity. This likely indicates near complete resolution of this nodule. Close attention on follow-up again recommended to ensure stability/complete resolution. No obvious therapy-related toxicities. Etc. etc.
My doctor admitted that he was very surprised. So somewhere between Jan (just after end of combo) and March (3 months after end of combo – 6 months after begin) I showed great improvement. In retrospect, I think the pain that I was experiencing at the end of Jan might have been the combo starting to kick in. Didn’t want to get too excited, because … I’m a pessimist, but I just had by last CT scan, which began:
** IMPRESSION: In this patient with a history of melanoma:
1. No evidence of metastatic disease within the chest, abdomen, or pelvis. There is resolution of the previously described groundglass opacity within the left upper lobe. No new pulmonary nodules.
2. Thickening within the distal esophagus, the differential includes immune mediated esophagitis vs. mass. If clinically indicated, consider upper endoscopy.
3. Ectatic ascending aorta.
I don’t know what 2 & 3 mean, but I think they’re not overly worrying. We’ll see where this goes, but I’m feeling much better about my prospects than at the beginning of the year. Last brain MRI came back with the same spot still present, but not growing, and nothing new. The doctor thinks that’s normal and positive. She said maybe it will absorb over time.
I think the plan is to continue with opdivo for some time and keep the fingers crossed.