Bewildered, Bewildered,John Prine, “Dear Abby”
You have no complaint
You are what you are and you ain’t what you ain’t
So listen up Buster, and listen up good
Stop wishing for bad luck and knocking on wood
OK, as much as I love John Prine, this post isn’t just an excuse to quote him. I haven’t been wishing for bad luck, but I have been knocking on wood lately. Well, since my diagnosis anyway, if not long before that. Yesterday, we went to Yale so I could get infusion #7 of nivolumab, but also so we could meet with my oncologist and get the results of my scans. Last Friday, I had an MRI of my brain and CT scans of my chest, abdomen and pelvis. It was a long six days waiting to get the results. Based on the way I felt, I was optimistic about what the scans would find, but you never know, you know?
Anyway, the news was good. Very good. While there was no reduction in tumor size, there was no growth and no new mets. This is called stable disease. At this point, they can’t be sure if the remaining shadows they now see on my scans are dead tumors, cysts, scarring or something else besides active melanoma. The assumption is that, if the cancer is active, it will either keep growing, or keep shrinking as the immunotherapy continues to fight it. This lack of change since my previous scan qualifies as three months of stable disease. The oncologist said that, if I my disease is stable after 12 months, he would order a PET scan to look for active melanoma cells. If the PET scan looks good, he would recommend discontinuing treatment and just doing scans to monitor me after that. No more booster juice.
There’s a lot of debate about when to discontinue treatment with immunotherapy drugs, with some experts suggesting stopping after the disease has been stable for 6-12 months and others opting to treat until there is either complete remission or until toxicity forces the patient off treatment. Some even suggest treating indefinitely, even after complete remission for as long as the patient can tolerate it. The thing is, these immunotherapies are still relatively new and there is not a lot of data from controlled trials to help determine which course is the best. Right now, we are all guinea pigs until they get enough data to determine an accepted standard of care.
This leaves me, like a lot of immunotherapy patients, with extremely mixed feelings. On the one hand, I look forward to a day when I no longer have to take this medicine. There is evidence that toxicity for these drugs is cumulative. In other words, the longer you are on it, the more side effects you can get. I’ve already had pancreas damage leading to Type 1 Diabetes, and my TSH levels are rising, indicating that my thyroid might also be on the way out. Not having to get my monthly infusion and not risking more side effects sounds very appealing. On the other hand, this drug, this booster juice, as Lynn calls it, is my lifeline. I’m not sure that I would even be here typing these words without it, so the idea of giving it up while I still have those shadows lurking in my body is more than a little bit scary. If the drug is working now, why give the bastard melanoma a chance to gain another toehold?
I know I’m getting ahead of myself. We’re at least three scans away from needing to make that decision and there is a lot that can happen between now and then. I don’t know now what I would want to do at that point, but at some point I have to trust my expert, especially when he comes bearing good news. After where I was and how I felt when I was originally diagnosed stage IV, I’m very happy and very grateful to be given a second chance at life.
As Dear Abby might have said, what’s the point of knocking on wood?