Friday, June 14, 2019
The Story of Spot and a Study
Currently, Spot is hanging out in a lymph node on the left side of my back just below my kidney, or, to put it medically, I have metastatic lymphadenopathy in a retroperitoneal periaortic node. No biggie. It's just a little stray cancer trying to find a forever home in my body. But it looks like I am going to have to put old Spot down. Quite possibly with a high dose of radiation if an increased dose of lorlatinib, my current treatment, is not indicated or likely to be effective.
The worst part of all the recent cancer doings has been the waiting. There are appointments. There are tests. There are days between tests and appointments. Then there are more tests. Then more appointments. I've known about the potential progression since early May, but it wasn't until Monday of this week that I got definitive confirmation. As of today, we (me and the docs) still don't have a treatment plan in place because we're doing a couple MORE tests to see if the cancer has developed any new targetable mutations; then there will likely be a few more medical professional consults, so, more waiting. Sigh. I KNOW! It's SOOOO frustrating! I mean we're talking about metastatic cancer, which means it's growing, albeit fairly slowly (we hope) and, well, YIKES. This aggravatingly super slow pace of arriving at a new treatment plan isn't helping me feel better about my situation, but it seems to be typical of life in Cancerland.
So, the shitty disease is no longer stable, and I've lost my coveted NED status. BUT there are silver linings. Nope, just kidding, there aren't. Metastatic lung cancer is a stone-cold killer, and there's still no cure. If you have it, the disease will fuck with you in all sorts of terrible ways, and eventually, because it can't be cured, it will put you in your grave; that's it's M.O. I've seen it do just that to other folks. Just sayin', the terror is real, and research funding for the much-stigmatized lung cancer is scant.
So, in lieu of silver linings, here are a couple points of gratitude. First, my brain MRI shows there has not been progression to the mothership of my central nervous system, so far, so good there. Secondly, because I had a CT-guided biospy, and because the interventional radiologist who did it was able to harvest a bit of extra tissue, I am able to participate in the ROS1 PDX Research Project which is trying to develop more ROS1 cell lines for study. Right now research on ROS1-driven lung cancer is proceeding very slowly because we don't have enough mouse models to study the disease. That's because only about one percent of people diagnosed with lung cancer have tumors driven by the ROS1 genetic rearrangement. So eligible ROS1 patients are encouraged to donate tissue to the study whenever they have a procedure like a biopsy or other surgery that could yield a viable specimen. It's sort of your ultimate DIY life-saving science project. PETA friends will be horrified to know that four potential mouse models were created by my metastatic biopsy tissue donation, poor mice. Me, I'm kind of excited about the research possibilities, though I admit to feeling pretty badly about the fuzzy li'l critters. (Moment of silence here.) Thank you for your service and your sacrifice, dear little rodents.
Hey, so you knew I was going to ask, but if you want to help support this ongoing ROS1 research that could potentially lead to a CURE, now would be the time to donate to my ROS1 Research fundraiser with the GO2 Foundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation). The findings from this study may have the potential to change treatment for other oncogene-driven cancers as well, with broader implications for cancer treatment overall. Since I donated my own living metastatic tissue to the study through a somewhat painful biopsy procedure, maybe a few readers could spare a few bucks as a kind of matching grant? Okay, that's a little gross, but you get my point.
And despite all my whining and complaining, I am doing my best to maintain a posture of gratitude and to keep the faith.
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