7.11.2018

Just Call Me a Badger for Now

After the door shut at Mayo, and with no immunotherapy combination trials at the University of Minnesota, it occurred to me that I could also look at the University of Wisconsin. It's a 4 hour drive from the Twin Cities, and one I'll be making soon enough to visit my boyfriend on a very regular basis when he returns from his sabbatical hiking the Pacific Crest Trail.

I logged back into the Late Stage MSS-CRC Clinical Trial Finder and searched in Wisconsin. Much to my surprise an immunotherapy combination trial popped up at the UW Carbone Cancer Center, and I was pleased to see it was being running by Dr. Dustin Deming. I knew of Dr. Deming from his work with Fight Colorectal Cancer and as a member of their medical advisory board. I had watched a webinar he hosted, and seen him speak in Washington, D.C.

I emailed him right away, told him a concise version of what had happened in the preceding months, and told him I was interested. He responded right away, told me to hold off on starting Lonsurf, and to come see him on Monday. So I did!

Of course I was full steam ahead on this one, but decided to take the detour on Thursday to hear about the mad cow rabies disease virus trial at UMN. Knowing doors can close just as quickly as they open, I need to keep all options on the table here.

I appreciated his honest feedback, and advice and insight on my options and next steps. He gave me a peak into the clinical trial world, and explained to me how my treatment choices past and present could and would impact my eligibility for a trial - most specifically the trial he had open.

For reasons I won't get into, I technically wouldn't qualify for his trial. But he said he could probably write my application in such a way to squeeze me in if it was necessary. At this time he didn't feel it was necessary for three reasons:

#1: The trial will most like alter its criteria soon enough so there's no need to manipulate me in.

#2: The response he's seeing from his current patients enrolled in the trial isn't so amazing that I need to get in right now. The trial needs more time to show us its goods.

 #3: I need to exhaust all standard therapy options before going on a trial.

I thought I had exhausted them (FOLFOX, FOLFIRI, and Erbitux, the EGFR-inhibitor). And then he brought up some data that I was all too familiar with, having just heard about it in a Fight Colorectal Cancer Webinar. It was data so compelling to me that I brought it up to the oncologist at Mayo - and he gave me a universal "meh" about it. And when an oncologist at one of the most respected medical institutions in the world says "meh," you sort of go with it, right?
Actually slide illustrating this from Dr. Richard Goldberg's ASCO Recap Webinar from Fight CRC.

Here's what was presented in the webinar. Tumors that mutate and become resistant to EGFR-inhibtors (in my case when the Erbitux stopped working) can mutate back and become receptive to EGFR-inhibitors again. Mind. Blown. So what they were suggesting is that horrid rash-inducing, toe nail-removing, cracked finger-causing drug that brought about "significant shrinkage" in my lungs might magically work again? Sign. Me. Up.

The oncologist at the Mayo blew me off when I asked about it, but the oncologist at the University of Wisconsin not only suggested it, but recommended it.

To be continued...




2 comments:

katielookingforward said...

I'm glad you are reaching out to more people. I totally understand why people put mayo in a high regard, but at the same time, if someone else has an idea they think might help, no harm in trying something!

Caitlin Moorhouse said...

Sarah I have been reading these posts with great interest. I am now after three years starting to show signs of chemo resistance so it looks like cetuximab will be my next stop. I’m feeling a bit anxious about what next after cetuximab so to hear about the resensitisation is encouraging. Much love to you as you explore the options x