It's been about six weeks since I posted about this and wanted to give an update following my most recent set of scans. Rather than recap what's been happening, here's a link to my post from June (apologies in advance, it's entirely too long, as is this post, but no one ever accused me of not being thorough ;-)
So I've been on Decadron for the past six weeks to try to reduce the swelling and perhaps resolve the motor control symptoms I've had in my left leg, e.g. limp and awkward gait, knee weakness, reduced ankle motion, can't curl toes, etc. I've continued to take my daily walks, 2-3 miles in the evening and some longer ones on the weekend, but really didn't see any improvement in motor control. Some days a little better, some a little worse, but overall about the same. I've also noticed in the past couple of weeks new weakness and range of motion in my left arm — the top half of my left humerus is a 10" titanium rod from back in 2010 to remove one of my original mets, so it's limited to begin with, but this limitation is new and definitely related to the motor control issue. My expectation going into the scans these past two weeks was that things would be stable at best, with no indication if this was new tumor growth or radiation necrosis.
My regular three-month PET-CT was last week and in addition to the continued vigilance for the dreaded "new met", there were a couple specific things we were on the lookout for: continued response of the lung met that was treated with SBRT in February and an area of possible concern in my distal ileum (near where the small intestine and large intestine connect) that lit up on my April PET. We know that the PET will rarely be able to show anything in the brain because it naturally lights up "hot" throughout, so weren't expecting any answers, only looking to keep things uncomplicated as we try to focus on whatever is happening brain-wise. Good news with the PET. The lung met didn't even get honorable mention in the report for either size or activity. The intestinal area is lighting up still but doesn't appear to be associated with any mass; given that it was also scoped (lower double-balloon enteroscope, longer than a colonoscopy into the small bowel) in May with no clinical finding, there is string belief that it's transient GI inflammation likely associated with the partial small bowel resection where the tumor used for my TIL cell harvest was removed about three years ago. We've seen it before but have to continue to watch it. And no new areas of concern elsewhere on the PET.
Monday was the repeat brain MRI. Given how things have progressed, or not, I was expecting that things were going to look about the same and we were going to be in the same position as we were six weeks ago, without any real answers and looking at another period or observation — and more cursed Decadron. The news was a little better, considering that I haven't had any improvement in the physical symptoms. The "enhancement" or new activity all around the edge of the original tumor bed has substantially reduced, and the area of cerebral edema (swelling) extending outward from there is perhaps half to two-thirds of the size it was on the last scan. This isn't activity that would be expected of new tumor growth on its own — remember, I'm not currently actively receiving any PD-1, ipi, or BRAF/MEK therapies — so this is likely radiation necrosis. Still potentially serious, as necrosis can continue to advance and be as problematic as a tumor. But it can respond to steroids or even on its own over time.
The fact remains that I'm still experiencing motor control problems, but they believe that the necrosis should continue to resolve and as it does, the symptoms will also improve. Even if the swelling is only half of what it was before, it's still squarely centered in the "motor control strip", so may not improve until it fully dissipates. The plan is to try tapering off the Decadron over four weeks, to see if the necrosis will continue to improve on its own. We're going to add Trental and vitamin E, which can assist but aren't nearly as effective as the steroid — I don't know a lot about either with regards to necrosis so won't say much about them — then repeat the MRI in eight weeks. Should I experience any worsening of physical symptoms, resuming the Decadron is an option, but they want to get me off them as soon as they can... no argument from me, it's a miserable thing — I need a good night's sleep and look like Humpty Dumpty, among other things, and my family is probably ready to toss me on the street from the moodiness. Truth is, I've managed O.K. compared to the severity of Decadron stories I've heard from others.
So, it looks like radiation necrosis that is improving. There is a possibility that this could be cyclical, with "flare-ups" of activity, which means continued vigilance for necrosis or new tumor growth if things change and periodic or longer-term use of steroids. But my radiation oncologist also said that even if that happens, there is usually a "hump", often around two years, where even cyclical RN starts to settle down.
Altogether, though, the news is as good as we could have hoped compared to where we were six weeks ago and allows our family to collectively exhale a bit — time to focus a little more on daughter #2's college search and break some of these crazy Decadron food cravings — back to the Stage IV limbo. Hopefully the physical symptoms start to improve soon. Just wanted to share — we learned a little more the past six weeks, if only I could apply the time spent to learning to play piano or something...
Best to all,