Postby dianne052506 » Wed Apr 06, 2011 7:33 pm
Jennifer,
Is the onc talking about starting your husband on maintenance chemo now, while he is clear, or is he saying that the odds of recurrence are high, and if it comes back, then to expect more chemo? There's a big difference.
I'm been on the life-long plan since my recurrence in Oct 07, but my recurrence came in the form of multiple nodules in each lung, too many and too scattered to remove by surgery or radiation. Chemo is my only way of keeping them in check. I went back on FOLFOX/Avastin and did 21 additional rounds before I had an allergic reaction, then dropped back to just Xeloda for three months. A CT scan showed progression over that time, so I started on XELIRI/Avastin. That was in Feb 2010, and (knock, knock), so far, things are holding again.
Chemo-for-life is a balancing act between enough chemo to hold things off, and maintaining a decent quality of life. We've made dose adjustments, and schedule adjustments that aren't typical of treatment plans for the newly diagnosed. I still have fatigue issues, and have finally learned to manage the GI problems that come with irinotecan, but so far, life is still very good, at least 2 weeks out of 3, and rough, but not awful, the other week.
Again, though, I went on this plan when I had visible disease that was inoperable. I don't know if I would have done that if I had been NED. If your husband's onc is talking about maintenance now, is it possible that he means just Avastin? My onc discussed that option if we were to ever get to the position where we had knocked everything back completely, but we haven't been able to do that.
If your onc is talking about starting on maintenance even while your husband is in remission, I think I would try to get a second opinion, even if your current doc is someone you really trust. I would try to get with a cancer center and ask for an opinion from them. MDAnderson has been wonderful working with my local onc to develop a maintenance plan.
I didn't go back and read your old messages, but this one sounds like things are going well. I hope I've given you some encouragement.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again