Part 1: Swing, and a Miss
What we tried first, how it went (Sept-Oct, 2023)
If you aren’t up to date on what’s happening - spoiler, I have cancer! Go see diagnostic summary here first.
We made too many wrong mistakes. - Yogi Berra
So, before talking about today (2024) it’s worth giving a quick summary of where we’ve been.
This matters if you want to 1) better understand the disease, 2) have context for my current treatment plan, 3) gain sympathy (empathy?) for the experience of medical trial by fire.
Is there an opposite of Russian Roulette? You keep loading the gun and hoping one of the bullets hits the cancer cells and kills them?
But I’m getting ahead of myself. Let’s time travel a bit…
It’s September 2023. My semi-annual surveillance MRI has just shown lesions in the liver. At least one of them looks biopsy-able - a procedure is scheduled, but the doctors decide to start treatment in the meantime.
What we know in that moment:
Neuroendocrine tumors (NETs) usually grow slowly
Once they are in the liver they always come back
My tumors are positive for somatostatin receptors - one of our body’s natural hormones
Based on that last bullet, many NET patients start on a somatostatin analog - basically an injectable hormone that is supposed to block the receptors on the tumors, making them unable to grow.
I’m told patients can stay on these for years, decades sometimes, with limited side effects, and stable tumor size.
I enthusiastically sign up for the once/month injection. What could be the downside?!
Well… it turns out exhaustion - fatigue and drowsiness like I’ve never known - coupled with zero appetite, brain fog, super low heart rate, and for one very scary afternoon some vision loss.
All of this is supposed to be temporary. I’m told the body will adjust with each passing month. And for the most part that turns out to be true - injections 2 and 3 are better, save the first few days after the poke (I’ll spare you from the details). But I’m still tired a lot. Still have zero appetite.
And this all makes sense. The science behind it is kinda cool, actually - somatostatin is part of our body’s endocrine system and acts as an inhibitor on a lot of automatic processes, essentially pumping the breaks for things like eating (it’s released to tell us to stop eating, we are full), sleeping, etc etc.
When naturally produced, this hormone stays in your body for 3-6 minutes before breaking down. A quick hit to have the intended impact.
So, turns out having a steady drip of it, 24/7, through a slow-release subcutaneous gel has all kinds of wacky impacts. Go figure!
So, why am I telling you this? Well, I’ve been rather frustrated with the nonchalance of the NET community towards 1) this cancer, overall, and 2) these injections. The former I’ll deal with later, but the later is worth a quick rant now.
Patients are frequently told our symptoms are in our head, or to be expected, or might be indigestion (oh, if I had a nickel….). And while I’m not one to complain, I am one to demand full information.
Being told something will be no big deal, and learning it actually had life-altering impacts (thanks, patient colleagues!) was not a cool experience.
But I digress. Because, it turns out, none of it matters at this point, at least for this treatment.
Because it didn’t work. Scans in late November showed the tumors are still growing, stubbornly refusing to be thwarted by some silly hormone gel. Sneaky bastards.
See the next post for Chapter 2 in this summary mini series.