I realise I haven't posted for a while and thought it might be helpful to circulate the answer to a PM I received from a fellow member recently. Please follow up with other questions and I'll be happy to try and answer.
My experience has been positive. I've been on the trial for 14 months (since Oct 16). My tumours did start shrinking after about 4 weeks. It has not been a straight line however ... There have been some that grew a little, and some that shrank. On balance though, my disease has been stable to slightly lower.
It certainly hasn't cured me (of course). My doctors have an interesting view: unlike chemo, where the outcome is pretty binary (it either works or does not), this is more nuanced ... I feel as if I am living with the disease in a kind of balance. The side effects are much much less than chemo. I live a good life, I hike, run, play sports, hang out with my kids, friends, family, eat, drink as I wish. And yet ... the disease is still there on scans, biopsies etc.
The logistics are a bit tiring. I fly each week from London to Barcelona, where I spend a day and a night. But it's worth it.
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
10/16 Trial: NCT02650713
Trials: anti-GITR then ERK inhibitor
6/18 progression, back to chemo
Current: 12 rounds of folfoxiri + avastin