So as an update to anyone following, I have received the readings on my CT with contrast and there is good news and bad. The good news is, it appears the original site is looking good so the reading there may not be a recurrence at the site. The bad news is, the distant metastasis to the lungs is confirmed. They are hoping for a biopsy if they can safely reach it.

I consulted with our local University Hospital and it appears I may be a good candidate for some clinical trials. The one the research doctor is recommending to start (as he believes we have some time before things go critical) is comparing Cetuximab to Cetuximab + BYI-117 (a protein inhibitor). I would first receive Cetuximab and then add the other drug if I am not responding well enough to the Cetuximab. As my tumor is "low volume" he feels this study (in Phase II) would be a good choice.

The second choice would be to do a phase II platinum +5FU + Cetuximab + some kind of immune-therapy but he thinks that might be too strong. As this is my life, my tumor I am uncomfortable with terms like "low volume" and "too strong" - my instinct is to go in heavy rather than limp in. I need him to choose his words VERY carefully at our next meeting.

I could then look at some second and third line options down the road (in a few months, a year? not sure there).

My question is, has anyone any experience with these? I've obviously done a lot of reading and discovered that Cetuximab and the BYI719 product have some potential but that these are relatively small gains - adding perhaps a few months up to a year or maybe two. These are nice, don't get me wrong, but they do come with some side-effects and risks.

If anyone has any thoughts or opinions, I'll be happy to read them.

Thanks,

The Hellion

Last edited by TheHellion; 01-06-2015 08:34 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many