Friday, June 14, 2019

The Story of Spot and a Study

It's called disease progression, and apparently I have it once again. So says the Spot on my April CT scan, a Spot which also appeared in the same place on a PET scan in May. A biopsy last week confirmed that said Spot is metastatic. Bad Spot. Go away Spot, go.

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.


  1. Keeping the faith right along with you, Leslie, and wishing you the best. --David

  2. The way I'm looking at it is there was a blip on the radar. Now the doctor's will take care of it, get rid of it, and you can move on. But meanwhile, during this void of waiting for answers, you've actually been doing something useful (the tissue submission) which could in the end make a huge difference. Maybe that's the reason for this temporary back step?

    Two steps forward, one step back. Two steps forward, one step back. And we're all going to just keep pushing you forward.

    1. Thanks so much for your encouragement Annie! You always help me see things in a positive light!

  3. I prayed and kept you in my thoughts when you had been diagnosed with lung cancer. When the experimental drug had successful results, I was thankful and thought you would go on to have a happy and autonomous retirement. But cancer is Satan walking the earth and I was so naive. And now I have joined you with endometrial cancer. After a hysterectomy, I have now started chemo so my empathy is deeper. I pray that a drug will cure your cancer once and for all.

    1. Dear friend, I am so sorry to hear that you too are facing this dreaded disease. I pray your prognosis is good and that you'll come through chemo and heal.

  4. I've stared at this comment box entirely longer than anyone should. I would type something. I would delete it. Type. Delete. Even started to say fucking rats... but the post is about mice. Then deleted that. Because wow not a time to joke. But then felt shity for deleting everything. How would it feel to pour all this out into silence? It would feel horrible. I guess I'm saying I don't know what to say. You are an amazing soul. I know that. Both in and out of the classroom. I hate every damn bit of this. F****** f*** is what I really want to say I suppose. And here I repeat the type and delete s*** again. I despise words of empty meaning and feel good fake emotions. F*** this s***. I hate this news. I deserve a c or worse on this writing. Forgive me.

  5. I adore you K Teets! You are a GREAT HEART, and ever the champion of people in need!


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