A pothole to navigate on the bumpy road to recovery

Part of our life has revolved around the cyclical scans that give us a roller coaster of emotions – the anticipation of results, followed by, in every case, the exhale of relief after seeing tumors shrink. In every case, except the scans from the first week of June. 

We had a pretty good first year on pembrolizumab, but the initial Year 2 scan gave a mixed bag of results.  The targeted tumors all shrank – it was the best 12-week drop since the initial scan period.  However, a mass appeared where a tumor had once been on my right adrenal gland; it was not a “target lesion” and reappeared on the scan report after nearly a year. 

This was the second time something unexpectedly popped up, but the last unknown mass was a harmless anomaly from a few months ago that turned out to be “back fat.”  We all had a bit of a nervous laugh when the next scan revealed it was nothing. Yea, great, it wasn’t cancer, but now my buddies can make fun of me for being chubby again.  

The scans this week told a far different, less humorous story.  The mass is still there, and growing.  The other tumors stopped shrinking or have shrunk minimally, which is fine – stable is a tie, and a tie is still a win, even if it’s not the results we desire. The adrenal tumor, though, is certainly ahead at the half and, if left unchecked, could turn this into Germany vs. Brazil. It was the first real setback since the hospital stay a few days before the trial began with an internist telling us, “You’re out of time, he needs to be treated NOW.”

There is, like always, a bright side and silver lining. I’ll dwell on the down side later this week, as I have bits and pieces from a bunch of half-written deep thought posts from the last six weeks to bring together.  The extended lead-time gave me chances to form a Plan B-2, and even think one step ahead to Plan C.  I went to Moffitt on the advice of Dr. Patterson to get a second opinion from Dr. Weber, and while I missed his “really good” outcome of everything shrinking, I also, for now, avoided the “really bad” outcome of all the tumors progressing and/or more showing up.  We anticipated the middle of the road result that we got.

The ball is rolling (slowly) onto the next steps.  There will probably be a second opinion on my second opinion. I have been in touch with several of the contacts I made on this journey, and they have already given good guidance and advice (once again showing that, contrary to popular belief of the image in my mirror, I don’t know everything). The likely next step is to get the adrenal gland removed, hopefully laparoscopically, with the goal to stay on PD-1 as long as it is systemically effective. 

It is not that uncommon to have one difficult-to-treat tumor that grows, while the others around it continue to respond to treatment – the stubborn Sicilian of the group (Italian slang spelling courtesy of Aunt Lorraine).  There is precedent, particularly in other immunotherapies, of surgery being used to remove tumors in conjunction with systemic therapy.  So the setback is real, but the wheels are already in motion to make it merely another pothole to navigate past on the very bumpy road to recovery.



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