Postby dianne052506 » Mon Sep 09, 2013 9:51 pm
Your recurrence sounds similar to mine. It was found in Oct 2007, after just 8 months off chemo. I've never heard an exact count, but they tell me between 20 and 30 lung nodules. All but a few are sub-centimeter. I consulted with thoracic surgeons at MDA and at MSKCC and both said the same thing. Too many, too small, too spread apart for surgery, and that ablation would not be feasible for so many.
Everyone is different, and this may not work for you, but my onc took the approach that since this was inoperable, and chemo-for-life was a necessity, then I should have just as little chemo as absolutely necessary to hold things at bay. After we found the nodules in Oct, I had monthly scans until we were sure things were growing, then started back on FOLFOX after 3 months. I had just 4 rounds at every 2 weks, and then when a scan proved the chemo had knocked things down quite a bit, then we stretched out the FOLFOX to every four weeks with Avastin every 2 weeks, along with the FOLFOX and in-between. I was able to keep that up for several years (actually went to every 6 weeks with Avastin every 3), before I finally had a reaction to oxaliplatin. Then we did the same thing with FOLFIRI/Avastin.
The key was frequent scanning to be sure that, even though we were stretching out the time between treatments, we were still keeping the nodules at bay. Maybe something like that could work for you until the trial is ready.
Obviously, there are a lot of people here who are like me with lung mets and the thought of such a trial is very interesting. Any information you could provide would be really appreciated.
Best wishes,
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