Jun 25, 2012 - 5:35 pm
Just starting a NEW thread for this. I understand the pain some of us "old-timers" feel when reading a thread started in 2007, which includes friends we have lost. Reality is that more people die from stage IV than are cured. But the hopeful part is that many of us do live a long time with this as a chronic disease, even if we aren't cured, and some people are cured. We can be realistic, yet still have hope! They are not mutually exclusive.
Post your stories here.
I was misdiagnosed for 2 years - I already had a huge obstructing tumor in 2007, but was not diagnosed until 2009. I do not know what point I became stage IV, but it was before August 2009. I'm still here and doing well. I even got a nice long treatment break after being told 2 years ago I'd be on "chemo for life." At that point in time, due to the location of my tumors there was no other option (I did get a second opinion from the Duke tumor board). So far I've had FOLFOX, FOLFIRI + Avastin, 5FU + Avastin (progressed), and Irinotecan + Avastin (stable). After 36 tx of chemo I just couldn't tolerate chemo anymore and presssed for something different, as my situation had changed. While my first choices weren't possible, I was a candidate for daily radiation, and after 2 months of it, for 4 stubborn distant lymph node tumors(finishing December 2011), I have not had anything large enough to be seen on scans! So I have opted for no treatments, although my CEA has been slightly elevated. Many people in my situation would stay on maintenance chemo, but I just really don't do well with chemo at all, and my oncologist agrees with my personal choice. I'm taking another month break and will re-assess the beginning of August. I haven't had a scan since March and am trying to push it out further (due to an excess of scans assessing my cancer progression and diagnosing blood clots and other issues). If my CEA rises more, I'll scan in August. If it drops, I'll wait. Once I have a combo of a CEA climbing 2 times in a row, with a scan showing something large enough to treat, I'll do something.