Thursday, January 24, 2019

Return to Oz

I woke up last Wednesday to a phone call from my oncologist confirming that the MRI I had just had showed that, while it was slight, my brain mets are progressing. My fancy new TKI (tyrosine kinase inhibitor - a drug targeted to my ROS1 mutation), Lorlatinib, was not holding my cancer in check. The next best chance for me was to get into a trial for the newest TKI in development, TPX-0005 (it is actually far enough along now in development that it has its generic name, repotrectinib, but I fell in love with it when it was just TPX, so it will always be TPX to me). The nearest site for this trial is at the University of Colorado, a powerhouse for ROS1 research. My longtime readers may recall that back in 2014 I took a trip there, my journey to Oz to meet the Wizards so that I could learn more about my newfound mutation.

With all of this on my mind, I got up and starting figuring out how to stay alive.

Actually, that’s not true. The first thing I did was get back in bed and get under the covers. Sometimes, this is a lot to take in.

THEN I got up, and called to get a copy of my latest MRI. My oncologist is wonderfully thorough, and asked that I take a disc to my surgeon at Karmanos, in case he had any other thoughts or ideas. I collected my disc and delivered it to Karmanos.

I actually managed to wait a full 24 hours before contacting the Wizards (who I have come to know in the years since my visit to Oz, because of my work with the ROS1ders). I knew my oncologist was taking care of setting up the trial for me and I was trying to let things happen the way they are supposed to ... but then I had to email them. This is my survival, after all.

And I got Out of Office replies from both! Crap crap crap. That is probably why my oncologist hadn’t given me an update yet.

And then, a few moments later, a magical reply came from one of the Wizards. He connected me with the people who do the enrollment for the trial and gave me some warnings for where things can get tripped up.

The next morning I was on the phone with the wonderful trial coordinator, my Glinda, going through part 1 of the trial consenting. One tricky part of this trial is that they want a tumor sample. No problem for me, I thought, I just had a chunk of tumor removed from my cerebellum. So I signed the consent to give Glinda permission to collect my tumor sample and get me ready to consent into the trial.

All signs are pointing to yes! I start busying myself figuring out how to manage all the flights I will need to take (anyone used Angel Flights?) and accommodations in Colorado.

However, I keep saying to myself, I’ll believe I’m in the trial when I swallow the first pill. You may recall when I literally had the pills in my hand and was not allowed in the entrectinib trial? Clinical trials are capricious beasts.

Unfortunately, tracking down my tissue has proven to be more difficult than I expected. I told her that my surgery was done at Karmanos, but my main hospital is the University of Michigan. She contacted them, but Karmanos said that they sent my tissue off for NGS (next generation sequencing, to see if I had acquired new mutations or if it was still just ROS1. Still just ROS1, by the way). She assured me that she can still collect it, but clearly it is becoming more time consuming.


Tuesday night I get an email from one of the Wizards saying that all of the trial spots are taken.


Total panic.

I’ve had my heart set on TPX ever since the summer of 2018 when my oncologist tested my cancer cells against all the current TKIs and found them most reactive to TPX.

I belong in this trial.

I reach out to my ROS1 sistas, Janet and Lisa (who I guess become the Scarecrow and Tinman in my analogy?). I get an appropriate string of swearing when I tell the news. Then they reach out to their connections to get the behind-the-scenes scoop about the trial. Their folks reply at lightning speed encouraging me to get on the waitlist; more spots are coming.

My oncologist confirms that he feels it is safe to wait a few weeks.

So now I wait. And dream of Oz.

When I’m anxious, I knit. Let’s just say I’ve been going through a lot of yarn.

My latest is a collection of octopus toilet paper cozies. I made one, then the kiddos wanted one in each of our colors. Then they wanted hats for them. M is excited that it matched the style of hat I made for her. The two in the back still need their hats. They will be done soon, trust me.

If you are wishing on stars for me, wish that I get a spot in the TPX trial, and that my cells were correctly predicting that this will be the drug that controls my cancer.