It seems like I'm going longer and longer between updates here. I wish that was because things are improving and there isn't as much to write about. Unfortunately, that has not been the case. I think I'm just not writing because I'm becoming more and more discouraged.
Adrenal Gland Radiation
During the last half of March, I had five sessions of fairly intense radiation to my left adrenal gland. Back in February, I mentioned that scans had revealed cancer growth there. This radiation ended on March 31, but put me more out of commission than any of the previous radiation treatments I'd had. I felt rotten for most of April! When we read about the effects of losing an adrenal gland, this made more sense. It took many of the side-effects (fatigue, weakness, digestive issues, etc.) that I would have felt from radiation alone and amplified them. To make matters worse, I felt so crappy in April that I didn't feel I had it in me to exercise, so that just added to the problem.
They say that it could take a month or two for the other adrenal gland to "pick up the slack" of the dead one. For me it was at least a month, only starting to feel better by small degrees in the first weeks of May.
Lymph Node Radiation
Meanwhile, I had a biopsy done on a lump under my chin that three different medical professionals (the person reading my most recent scan at that point, my oncologist, and my Ear, Nose & Throat doctor) did not think was cancer. The biopsy was a just-in-case kind of thing, given my recent history. When the results came back a few days later, sure enough, a lymph node under my chin on the right side was full of cancer. Since this was a very specific area, we decided it was best to go back in for radiation of that.
Just to provide a sense of how frustratingly slow the world of medicine works in the United States, we discovered this lump under my chin during a scan I had on January 14, my biopsy of this lymph node wasn't until April 13, I couldn't get in for a CT Simulation (a sort of radiation mapping & planning session) until May 13, and I just had my first radiation treatment to that lymph node today, June 10. There has been cancer growing in this lymph node for at least five months before anything is being done about it. Whenever the wait is that long, I worry so much about how much an aggressive cancer like mine is spreading from that point.
A Clinical Trial, possibly
I had good reason to worry. My oncologist started to suspect that my cancer had either mutated or become resistant to the ways we were attacking it. In May, I ended up having some more specialized bloodwork and scans. Meanwhile, my oncologist started discussing my case with a prostate cancer specialist at the University of Wisconsin in Madison. Sure enough, one of the scans revealed some more diffuse spreading of cancer in my neck and shoulders. If someone were to tell me that this had come from the cancerous lymph node that had been let go for so long, I'd believe them.
The problem with more diffuse spreading of the cancer, though, is that radiation is no longer a reasonable option. The word "chemotherapy" was back on the table. This made my heart sink since I had such a terrible experience with chemotherapy back in 2024. The oncologist in Madison suggested we see if I was eligible for a clinical trial: Group 1 would get a new chemo drug being tested but showing promise as having fewer side effects. Group 2 would get Docetaxel, which was the chemo drug I was on in 2024 and had such a hard time. (Probably 90% of the known side-effects. It was absolutely miserable.)
On June 3, my wife and I went up to Madison (about an hour north of us) to meet with that oncologist, the clinical trial coordinator, and have some bloodwork done. I'm due to go back up on June 17 for several scans. My impression of where we are now is that two things need to happen for me to get in on this trial. 1 - I have to study the literature and decide if I want to participate. 2 - The scans and bloodwork all have to warrant me eligible to participate. I would imagine both of those things will be decided in the next couple weeks.
If I enter this clinical trial, it will mean trips up to Madison every three weeks for months and months. (They say, "up to two years".) This Phase 3 clinical trial is what they call, "open label", meaning I will know which group I'm in, but in some ways that makes the decision more difficult. If I'm stuck in Group 2 getting Docetaxel again, I could easily receive that drug, and at a 20% reduction from last time, just 15 minutes away at the UW Cancer Center in Beloit. As a participant in the trail, I'd need to drive up to Madison every three weeks to get a full dose of Docetaxel.
I am so genuinely torn about what to do, and so terribly depressed at the fact that, every time we manage to put out one cancer "fire", another one has already started up somewhere else. It's not difficult to feel a significant sense of doom here.
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