I just wanted to start a thread to let you know what I am doing in the event it can help someone else.
You can look at my signature for my history...but more recently, in Mayl 2017, after my CEA went up and two lymph nodes showed up on the PET scan I had surgery to remove the lymph nodes (in the hilar area of my left lung) as well as the lower lobe of my left lung (since they had to remove the hilar the lobe had to come out as well.)
All was good until my CEA began to creep up beginning in August 2017. Nothing showed on CT scans. Had PET in January (there were some questionable spots buth nothing definitive) then in March 2018 a repeat PET showed that there were 3 small lymph nodes that were metastatic in the vicinity of the lymph nodes removed in May.
This time I started on chemo again (Irinotecan and Xeloda)....after 8 weeks, my CEA went up a little and two of the nodes got brighter on the PET. Irinotecan may have been keeping the mets somewhat stable but it wasn't working as it should.
HERE IS THE INTERESTING PART: My local oncologist ordered Foundation One Testing on the tumor that was removed in May 2107 (we knew that I was MSS with KRAS mutation...but he didn't know if I had any other mutations that may make other forms of chemo useful. ) When the report came back he was kind of excited because my tumor showed 11 different mutations. (Intermediate Mutation Burden). Apparently, there is some thought that the higher number of mutations in a tumor (which is often Highly Mutated in MSI tumors) allows the immunotherapy to work....even in MSS tumors (most of which have low mutation numbers).
So, my oncologist has gotten approval to use Keytruda off label with the hope that my cancer (being intermediately mutated) will respond. The chances may not be great...but he (and I) are excited and hopeful. I start on May 3rd (this Thursday.)
I will keep you all posted.
Mommy to Jack (8) now (15) and Katie (4) now (11)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection!
8/13; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5
Lymph nodes all normal via CT scan