Wow Juliej, thank you so much! I LOVE your story. Congratulations on making it through! You must be a pretty badass person to go through something like that so successfully.
I have read so many good things about Dr Kemeny that by now she sounds like a celebrity to me. Is it possible to get a real-life consultation with her? After reading your post I went on their website and filled in the form requesting a second opinion for international patients. If they have an opening we absolutely could add a stop in NYC for a consultation. Do you think I need to do anything special to be able to see Dr Kemeny?
You are right, Jesper absolutely fits that profile. No comorbidities, young and healthy and strong in every other way (except for the stage 4 cancer ) He'll remove his 5-FU pump tomorrow and then he's been through 6 months of chemo. Pending a positive CT scan, he'll get a 3-month break. His CEA went up slightly last time (195 to 210), but I think it's because the nurse forgot to switch on his 5-FU pump last time and we didn't notice it until he was going to remove it. So he didn't get any 5-FU on his 11th round, which I suppose could account for the small rise. Fingers crossed for an excellent scan.
Jesper's cancer is KRAS and BRAF wild type, no Lynch syndrome. I just dug out his histology papers and figured out he is MSS (normal expression of all those genes - per my google search that means MSS). I don't think he can have Keytruda then, right?
I'm glad you filled out the form requesting a consultation at MSKCC! You also might try getting a referral from your local oncologist directly to Dr. Kemeny. That's seems to speed things up. If she agrees to see Jesper, you'll be told a list of things she needs - CT scan results, tumor samples, etc. They'll explain how to get everything she needs, so there's no need to worry about that now.
There is also an ongoing clinical trial for the HAI pump at MSKCC. That might be a possibility if your insurance won't work in the US. Clinical trials are federally or privately funded, so there is usually no cost to the participant.
Here's the link: https://clinicaltrials.gov/ct2/show/NCT03693807
Jesper's genetic profile sounds a lot like mine - KRAS and BRAF wild type, no Lynch syndrome. I am normal MSS too. I frequently told my doctors I was healthy as a horse, except for having cancer! In fact, it was difficult for me to get a colonoscopy at first because the doctor kept saying I was too young and healthy to have colon cancer.
As someone mentioned, Keytruda is indeed being used for some MSS patients. In fact, there are several clinical trials for MSS patients going on right now, like this one that uses Keytruda, Xeloda, and Avastin: https://clinicaltrials.ucsf.edu/trial/NCT03396926. Hopefully they'll either figure out a way to use Keytruda or come up with another checkpoint inhibitor for MSS patients in the near future.
I'm a bit worried about Jesper getting a 3-month break. That's a long time for a Stage 4 patient. A short break might be needed to lessen the side-effects of the Folfiri and Vectibix combo (that's some heavy shit!). And truthfully, after that many infusions, he'll still have 5FU in his system for awhile even after he stops taking it. But any kind of long break can allow the tumors to grow so be aware of that. I will cross my fingers (and toes!) that he has a good scan and gets a little reprieve though!
Sending good thoughts your way!