7.19.2019

You Try Pronouncing Regorafenib and Nivolumab Really Fast

In June an abstract was presented at ASCO from a phase 1 study out of Japan. It combined 2 drugs currently being used in cancer treatment in the US, and the results of the study were promising - promising enough to get the serious attention of GI oncologists and patients. Serious enough that I took screenshots of the presentation slides I saw come across Twitter from those in the Twitterverse that were in attendance. 


The study treated gastric and colorectal cancer patients with microsatellite (MSS) tumors with a combination of Nivolumab and Regorafenib. Regorafenib, or Stivarga as it’s known for people who can’t spell or pronounce fancy drug names like myself, is already in line as standard therapy for colorectal cancer MSS patients. Though approved by the FDA, Nivolumab (Opdivo) is not approved for my cancer type (MSS) because to date there has been no clinical data to support that this tumor type would respond to this immunotherapy.


In the study, the response rate in colorectal cancer patients with MSS tumors was 29%. As this was a phase 1 study, the number of patients enrolled was small (50 over all, 25 colorectal). These results were exciting, unexpected, and encouraging enough that there is talk of opening this as a phase III trial in the US. But I ain’t got time to wait for that!



The timing couldn’t have been more perfect, as I was a couple of weeks from starting my first clinical trial with its one-and-done short run of 42 days, and would need to line up my treatment plan after its completion. 

The week ASCO concluded (and the same week these results were presented in the abstract) I traveled down to MD Anderson in Houston to check out their trials. While meeting with the oncologist (and his fellow) about potential phase 1 trials available, he brought up this study. Of course I had the screenshots of the presentation slides on my phone and whipped them out! As he talked, the fellow pulled up the abstract to read, and within minutes we were all in agreement that mimicking this trial was the way to go. Fortunately I have an oncologist who is equally trusting of my ideas who immediately put this plan into action. 

Since these two drugs are in circulation in the US, I could duplicate the study. As Nivolumab was not approved for my tumor type, my insurance company would not cover the cost and I’d have to get it “off-label.” This means asking the drug manufacturer to give me the drug for free. The process wasn’t complicated, and in-house staff at my cancer center took care of it. Within days it was done.


Once I wrap my current trial with a scan on Monday, July 30, I will begin this treatment plan on Friday, August 2. The side effects from Regorafenib can be rough, but ironically the best results of the study came with the lowest dose of the drug. Knowing this, I'm hoping the suffering is kept to a minimum - as the drug is known for destroying hands and feet.


I wouldn’t exactly call this going rouge, as the results from the phase I study have clearly inspired US researchers to actively create their own study. I’m just getting a head start. I know that if I expect to survive this disease or (at the very least) continue to prolong my life - I have to take risks and venture off the paved path. 


Those of us with MSS tumors have been sitting on the sidelines for a while watching everyone else get to successfully play in the game, and a study like this can only be likened to the coach telling us to get off the bench and start warming up. I just hope I can do my fellow MSS patients proud as I get called in early to play.

5 comments:

Donna said...

Thank you for this. I’m MSS and this is great news

Unknown said...

Thank you Sarah for this information. We read about you in a Health Monitor magazine. How are you doing with your treatment that you began on Aug 2. My daughter, Jill is MSS. She had very early colon cancer in a polyp in 2011 and had 8 inches of colon removed, but they didn't even stage it and Dr. said it didn't go outside the wall and did not recommend any treatment at all. That was a mistake on our part and we should have insisted on periodic scans with some form of treatment. Eight years later it returned in June, 2019 with a tumor in her lung as Stage IV. A thoracic surgeon in Atlanta removed the tumor and the lower half of her left lung on July 12th and she is presently recovering from the surgery and will begin Chemo August 22 at Emory in Atlanta.

We are just trying to figure this out and gather as much information as we can. A couple of questions: Have you had some form of Chemo every year since your diagnosis? And have you been able to work a regular job?

We would appreciate any kind of information you can give us to help us know better what to do.

Thank you

Ginger Morris

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