Postby Tim UK » Tue Mar 29, 2016 2:35 pm
Lynne
The background is that my oncologist viewed this as a 2nd (or even 3rd) line treatment, the first having failed. In my case that was FOLFOXIRI plus avastin, and arguably my subsequent HIPEC op. To be specific, it had succeeded in shrinking my liver mets ready for resection, but didn't seem to have reached the peritoneum and serosal lining. This is relevant because I don't believe he could have advocated the braf triplet as first line.
Like you, I then presented him with a list of what I perceived as my options (revert to chemo / pd-1 blockade / this triplet) together with a brief summary of the response stats for each. He was quite familiar with the clinicians and the science behind each new option. I then asked him "what would you do, if you were the patient?". He was honest and said there were no clear answers, but his instinct was the triplet given my BRAF status, adding that if it failed then we could always go back and re-test with the chemo. I should be clear that I took second opinions with another leading UK onc who is closely involved in these trials and his view was totally different: he said that the toxicity of the triplet was quite brutal and it's efficacy not clear ... so I should go back to the chemo, trying the triplet only if the chemo failed.
Having decided how to proceed, the onc agreed to write to our insurer. He stated they would most likely reject it, on the basis that it is nowhere near NICE or FDA approval. We were prepared to re-mortgage and self-fund if necessary. They rejected it once, he wrote back with a rebuttal and a resume of the research. They agreed to fund the first rounds, and continue if there was evidence of early success.
Good luck!
Tim
https://youtu.be/qoQbY4A5RNA05/15 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
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo