REGONIVO: 12-Week Update

Amazing if not miraculous news. The new drug combination I’ve been on for the last 3 months is working, and as my oncologist said when revealing my scan results today, “I think we’ll really be celebrating in 3 months. This is just getting warmed up.” I was pretty hopeful going in today, and comforted by the first 8 weeks of tumor marker blood tests (CEA). They dropped significantly at the 4-week and 6-week mark, and are a good indicator for me about what's going on inside the ol' lungs.12 weeks later we have the visual proof to back it up with great CT scan results.
Graph of CEA test results over last 6 months.

Why my oncologist thought things would be more impressive 3 months from now is due to activity evident on the scan. Something called cavitation. In layman’s terms, the tumors are dying from the inside. And this was no more evident to us as he scrolled through a side-by-side comparison with my last scan. Aside from seeing overall shrinkage in all my tumors, in the middle my largest tumor was a huge dark circle. I didn’t think to take a photo because we were just so amazed at the size of the black hole. The core of my largest tumor was dead. 

This is a brand new treatment option for colorectal cancer patients with microsatellite stable (MSS) tumors, and a phase II trial is now open and recruiting patients. I have opted to do this drug combination off-label because at the time I started there wasn’t public talk of a trial opening, I needed something, and this looked so promising. I was at the right time in my treatment timeline. Off-label simply means that I had to request the immunotherapy drug Opdivo from its manufacturer Bristol Myers Squibb because it was not FDA approved for my tumor type. 

Since starting, many other colorectal cancer MSS patients have done the same, and many are enrolling in the trial. I am so hopeful for tumor markers to come in soon for others. We may have an immunotherapy combination that can work for some MSS patients, which has been something long sought after by researchers.

I will admit that I didn’t expect this to work for me when I started. It just wouldn’t seem right or fair that once again I would respond to another line of treatment (my 4th), that I would continue to have the privilege to live, and that I would continue to be so damn lucky while too many of my friends weren’t. I thought at this point my tumors would have figured out a way to mutate into something impenetrable. But we have learned from Star Wars, regardless of what the cocky Empire thinks, the Rebellion always finds a way in.


sherif said...

Sarah congratulations for the good results and thanks for this blog and for sharing ! Is it possible to please know your tumour mutations ..? Sherif.

Unknown said...

So over the top happy for you. You go girl !!!

Unknown said...

How is your weight now? And are you able to handle your side effects? Congratulations on the great outcome of this treatment.