Hi All,
I met with my Onc this week to discuss plans going forward. My recent CT continued to show "no evidence of bulky metastatic disease" (my Onc's term - which I prefer to "NED" ). I have been doing 5FU and Bevicuzimab for 6 treatments after my initial FolFox+Bev of 12 - which I tolerate fairly well apart from fatigue and constipation. Going forward my Oncologist said he can't recommend any course based on settled medical science but he would stop chemo and just scan until progression (if it were him). He considers me a well-informed patient and has left it completely up to me... but he encouraged I consider the long-term/quality of life questions (I think he has more optimism than me as to how long this will last). While this is nice it also makes for a very tough decision on my part and I'm reaching out again for your thoughts.
The current options I am considering are:
1 - Continue with 5FU and Bevicuzimab infusions but move to every 3 weeks.
2 - Switch to Xeloda pills daily with Bev infusion every 3 weeks.
3 - Take a 5/6 week break to clear chemo for a PET scan and then re-assess. (I trust PET's more than CT's and would really like to check the metabolic activity in the nodes)
I recognize I can't provide enough information on my side effects and QOL issues (such as how the pump interferes with my 4-year-old's cuddles)....so I'm interested in what you guys think from an efficacy perspective (ie: is a 5 week break a risk worth taking ? Considering Maia and rp's historical posts -should I consider a switch to daily Xeloda as it may be more effective long term ? Is it too soon to decide to switch to 3 weeks when 2 weeks has been working ?)
As the most informed community on the web - I appreciate any and all thoughts.
Thanks
AT
(I edited this to remove my comments on being shaken by Tom Marsilje's death because I really can't find the right words...)