After 4 years and 1 month on my super drug Xalkori, we are looking at moving on to something else.
I had my regular 3-month checkups over the past few days, and the MRI showed 3 tiny new spots (two were so small that the radiologist missed them on their first pass), and there is possible growth (or maybe scarring? They say it is hard to tell) on previously treated spots.
If you have been following this blog for a while, you may recall that I have had brain mets pop up on three separate occasions, and each time we treated them with SRS (sterotactic radiosurgery).
October 2015 - Adventures in Brain Metastases
May 2016 - Brain Surgery Light v2.0
February 2017 - The Best Bad News
We decided that since it seems like this was becoming an ongoing issue, and that there are new drugs in trials that look really good and have brain protection, that it was time to take the leap. The other great thing is that there is STILL no progression in my lungs, meaning that it appears I have not gotten resistant to Xalkori, it is just the known issue that it doesn't penetrate the brain well.
If you are a geek like me and want to read more about the drug, here is their presentation from the World Lung Conference this past October.
Entrectinib in patients with locally advanced or metastatic ROS1 fusion-positive non-small cell lung cancer (NSCLC)
Here is a slightly more reader-friendly version:
Entrectinib Impresses for ROS1-Positive NSCLC
If you are a super geek and would like to read the trial design itself, here you go:
Basket Study of Entrectinib (RXDX-101) for the Treatment of Patients With Solid Tumors Harboring NTRK 1/2/3 (Trk A/B/C), ROS1, or ALK Gene Rearrangements (Fusions) (STARTRK-2)
So, progression is terrifying, but I kinda sensed this was coming. I am very thankful that there is a drug that looks so promising, AND that there is a trial site right here at the University of Michigan so I don't even need to travel for the trial.
I am also immensely thankful for my fellow ROS1ders Janet Freeman-Daily and Lisa Goldman who immediately replied to my message about the crappy news. Not only did they reply with the requisite "oh $!*@", but then immediately started reaching out to their contacts and gave me advice to help me navigate this new journey. They are two of the brilliant people behind the Global ROS1 Initiative, which is working to accelerate research into ROS1 cancers.
On Monday I go in to read and sign the consent form and begin the baseline testing I need to make sure I am accepted into the trial. If I am accepted, then I have to go through a washout period where I go off of Xalkori before I can start the trial. The washout freaks me out since I have heard that Xalkori withdrawal is pretty awful. But first I have to get into the trial so I will worry about that first.
Wish me luck!
In other news, the fam went to a fun holiday party hosted by Kids Kicking Cancer, where the kiddos take karate each week. It is a great program!
Tori, I wish you didn't have $=!**% cancer!! And I am glad that you have this new treatment option as a possibility. You and your fam are on our minds as we live here in bio/pharma central for new treatments and cheer for better treatments for cancers.
ReplyDeleteHolding good thoughts and prayers that you get into the trial.
ReplyDeleteTori, my one week washout (before moving to Lorlatinib), after 16 months on Xalkori, was uneventful. I felt nothing different, so hopefully that will happen for you. Best wishes on Entrecinib. I'm reading only good things about it. Corinne
ReplyDeleteThinking of you and wishing you all the best as you get ready for new treatment and receive it.
ReplyDeleteAll luck wished! I think you will do really well on the new drug.
ReplyDeletexo Linnea
New drugs are good! It's all we have for now. . .and many didn't have these powerhouses before. IT WILL WORK!!! Best wishes!! Thoughts are with you. Susan
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