Jan 08, 2013 - 8:25 pm
Got my CT results today after 12 tx of 5FU + Oxaliplatin and 10 tx of Avastin. Previous CT scans were taken after 5 tx of 5FU + Oxaliplatin and 3 tx of Avastin. Despite doing very well with the chemo (with respect to side effects), feeling very good the last few months, and hoping/praying for the best, I am not close to NED. I have had shrinkage/improvement pretty much across the board in all mets (lung, LN, liver, peritoneum), as well as the primary colon tumor, but they are all still there. My oncologist said it was a good result, but certainly not the result I was really hoping for. The plan is to drop the oxaliplatin and go with a maintenance regimen of 5FU (either infusion or oral Xeloda) + avastin and get re-checked by CT scan in 3 months or so. I did look at my actual CT scans this time, and had a little more in-depth discussion about my tumors. After today's discussion, I think I have more advanced metastasic disease than I first realized, and many small tumors that are too small to accurately characterize by CT scan (my onc described the omental tumors like grains of sand). She also explained that the CT scanner takes 3mm width sections, so any tumors smaller than that can be missed or very hard to see. At this point, I don't think I have much chance of achieving NED status, which is probably not great news with respect to overall prognosis. To be honest, I am a little disappointed that I am not responding better, and a little worried that my prognosis is not as good as I had been hoping for. Oh well, that just means I have to be more disciplined about getting some bucket list items accomplished, and sooner than later. Hopefully, the maintenance chemo will work well for me, and I will continue to feel as good as I have so far. I do look forward to not having the oxaliplatin side effects for a little while, but the onc did say that I could go back on it if the neuropathy gets better, since it appears to still be helping. The other option is irinotecan if and when the maintenance chemo stops working. In summary, despite hoping for a home run, it looks like all I got was a single today.
Edited to add that I am starting to think more about alternative treatments, dietary changes, etc.... to see if that will help, since the chemo doesn't look like it will be enough by itself. I know there is a lot of info out there on this, so I will have to do some research in the next few days/weeks. I can't afford to follow in Pete's footsteps and go to Germany for treatment, but I'm thinking of things like ursolic acid, cutting out refined sugars in my diet, etc...