As expected, it looks like I do have colitis and I am getting kicked off of Nivolumab treatment. The image on the left here represents my somewhat mixed thoughts. On the one hand, I feel like I have had my life preserver taken away; on the other hand, Nivolumab might be a sinking ship at this point, at least for me.
Let’s see. In November, I got hit with diabetes, which put me in the ICU for a day and a hospital bed for week. I also have elevated thyroid levels now. Although it’s not currently enough to treat, I have to wonder if some of what I’m dealing with might be related to that. Now, after eight treatments, I’m being treated for colitis. The doc didn’t run all the tests, but I did have grade 1 or 2 diarrhea (it depends on what day you were counting) and I did have leukocytes in my stool but no bacteria or parasites. It would take a scan or a ‘scope to definitively diagnose, but going by the duck test (if it walks like a duck, and quacks like a duck, it’s probably a duck), it’s being treated as colitis, which I have no reason to doubt that it is. Since being on put on prednisone three days ago, my diarrhea has stopped, as has everything else. I’ve never been one of those people who were obsessed with their bowel habits, but I’d really like to have a good, solid dump right now.
As stated above, my feelings about being taken off Nivolumab treatment are mixed. I expected that my treatment would be suspended while we dealt with this diarrhea/colitis issue, but I was hoping that it would only be a temporary suspension and that we could resume treatment once those issues were under control. From what I’ve read online, that seems to be the protocol at many cancer centers, at least for colitis presenting with grade 1 or 2 diarrhea. When the doc told me that I would be taken off of treatment completly, however, it was an emotional blow that I wasn’t quite prepared for. I just wanted to go home and take to bed, which I did for several hours after we returned home.
On the way to the clinic, Lynn asked me if I would want a treatment that day if the doc offered me the choice. I said, “of course.” I knew by her reaction that wouldn’t have been her choice to have a treatment before getting this latest side effect under control, but I was still seeing Nivolumab as my life preserver. Until the colitis, I felt good and my cancer had not progressed in months. I was willing to accept the “get diabetes, get rid of melanoma” trade, and I was even willing to accept losing my thyroid function. I was thinking that this diarrhea/colitis was just another bump in the road, but after researching it and thinking about it, I’m seeing it as more as leaving the highway and heading out onto an unpaved, uncharted, and dangerous road. Colitis can get nasty. Some people get it and never get rid of it, and have to continue on more and more aggressive treatments and eventually have to have part of their intestines removed. And some die. That is some double-edged life preserver.
I’ll find out more next month when I return to Smilow for scans. I’m to get another MRI on my brain to see if anything is growing there and a PET scan for my chest and abdomen. The PET scan will be my first and it will show where there is any active cancer in my body. With the CT scans, all they can really see are shadows, and they judge progress by whether the shadows are getting bigger or smaller and whether they see new shadows that they haven’t seen before. The PET scan allows them to see if those shadows are active tumors, or possibly scarring from previous disease or necrosis. Apparently, active tumors “light up” on PET scans. I’m looking forward to a total blackout.
If the scans don’t turn up anything new or active, then the plan is that I will just continue to get scans every three months for 6 months to a year, then less frequently after that. If they do show active cancer, I’m not sure what my options are. I don’t seem to have the gene mutations that would make me a candidate for targeted therapy, and I’m pretty sure that my previous immunotherapy-related reactions would disqualify me for most trials, even if there were something promising on the horizon, which I don’t think there is. My doc seemed pretty definitive that going back on Nivolumab treatment would not be an option even if I did get the colitis under control, at least not one that he would approve. I could shop around for another center that might approve, but would I want the Nivolumab even if I could get it? I honestly don’t know right now and I don’t think I can answer that question until after those next, dreaded/anticipated scans.
It’s funny how my outlook has gone back and forth since my diagnosis. When I was first diagnosed with stage IV last July, I wasn’t sure if I would make it to Christmas, or even my next birthday (September). Then after a few good scans, I began to think that I might be one of the lucky ones, the survivors who battle on for years and years. Now, I’m back to thinking much more short-term. I don’t know if I have years or months. I’ve learned that one bad side effect could take me out in just a few days. Right now, the weather is finally starting to feel more spring-like and I’m looking forward to enjoying the days ahead, if we can just get past all this chicken-shit.
Speaking of chickens, the chicks are getting bigger and showing their individual personalities. We’re having an Eglu coop/run delivered next week, so the hope is that they can go out in it in the evening for a few hours so that they can get used to being chickens and scratch in the dirt, and then later when they are fully feathered, they can move to their new home full-time. More cute chick-pics to come.