I had seen a surgeon at the University of Chicago Medicine on 5-22-17, and he wanted to do an exploratory laparoscopy next week of my abdomen to supposedly determine if the mucus in my abdomen is "active" or "dying" cancer - which then would indicate that the Keytruda had been working.
My regular onc suggested that I see an onc at the University of Chicago Medicine as well before the surgery, to get their opinion, as well as any info on any clinical trials I may qualify for.
My regular onc is ready to start me on Lonsurf with the recommendation by the onc I saw at Mayo in October.
Anyways, I just left my appt in Chicago, and the onc there basically said that Lonsurf doesn't work, and there are still more options for me. He doesn't want me to have the surgery. He presented 2 clinical trials for me to enroll in.
The first one is testing the drug Abbv-621. He is very excited about this drug, which he basically said causes death to the tumors. He also did say that maybe only 10 people worldwide have taken this drug. He also did say they have to warn participants of Tumor Lysis Syndrome (TLS) which basically means the tumors break down too fast and your body isn't able to remove the products of the tumor breakdown quickly enough.
The other trial is for Nivolumab and an ID01 inhibitor.
Basically, I have decided to go with the first one. Mainly because of the promise of killing the tumors, and the fact that I am unable to have my tumors removed surgically. Also because the 2nd trial has an immunotherapy drug in it, it will still be widely available if this one doesn't work. I figured if I did the immunotherapy one first and it didn't work, then tried to get into the first one at a later date - it may be difficult to get into the trial.
All in all, we are looking at a first treatment date of June 28th. I will get an hour infusion on day 1, day, 8, and a break on day 15. The cyle then starts over. I will have screening tests on June 21st with an EKG and. CT scan. They will be repeating a CT before cycle 4 starts.
I guess I'm glad I did go to see them, mainly because I don't feel like I'm out of options yet, and my regular onc seems to almost be ready to throw in the towel.
I will keep everyone updated on my continued journey.
Best wishes to all!