I am sorry you are dealing with this especially being so young.
I think you found the best colon cancer with liver mets oncologist in the world. Dr K knows more about liver mets than anybody else. I heard about mitomycin working well on the liver. I would at least try it.FOLFIRi is easier chemo than FOLFOX. I was given FOLFIRINOX as first line chemo and it was survivable. FOLFIRINOX + Avastin gave the longest survival rate according several trials. FOLFIRINOX + FUDR is too harsh for the liver at this point for you.
Are you Lynch/MSI by any chance? It would expand your treatment options. I suppose you are not because it is the first test nowadays
but Your family history suggests Lynch.
Did you get any shrinkage of your mets when given systemic chemo: FOLFOX + Avastin by LOndon oncologist??
Did your scan brought mixed results - some tumors growing (3), the rest shrinking?? Or you have just these 3 mets?
I think you should stay in NY and at least try the mitomycin.
Maybe ASCO 2016 will bring some new interesting news from immunotherapy trials??
I think NIH trial could be dangerous if your liver mets grow fast. You need several off chemo months. Achieving control and stabilizing the liver is priority at this point.
I sent my primary tumor to CARIS to do profiling and check whether there is more chemo options for me than the standard ones. IT came back that I have Taxols available as well. Foundation One is doing profiling.
I also did the fruit fly study at Mount Sinai in NY. They are testing all the available meds on fruit flies with my primary tumor genes. I do not expect much but who knows.
I got final shrinkage with FUDR + FOLFIRI. I had excellent results on FOLFIRINOX than zero shrinkage on FOLFOX + FUDR. After first step liver resection I got shrinkage on FOLFIRI which allows resecting the mets from my right lobe without PVE. So FURY worked.
I do not like your LOndon oncologist opinion either He is very wrong that your disease is not being treated as systemic one. You got systemic chemo and local hepatic chemo. The best option available at this point.
Every cancer treatment success depends on tumor biology. Sometimes aggressive, fast growing cancer starts dying as fast as it grew. I wish you this with all my heart.
Good Luck! Praying for you,
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016
I praise God for every day with my family!