I was diagnosed in Nov 2011, emergency hemicolectomy. Omentum deposit that came out at the same time. PET shortly after showed 2 distant lymph nodes lighting up, but they were normal sized. No organ mets.
Started FOLFOX in Jan 2012, repeat PET in March 2012 was clear. Those nodes didn't light up any more. False positive? Complete response to chemo? Who knows. Doesn't matter, the omentum deposit made me Stage IV regardless, so treatment would have been that same. Obviously it would be nicer if it was a false positive because then all the visible cancer was resected. CT was clear in June. Next CT in 2 weeks. Currently off treatment, as I had 2 new polyps removed at follow up colonoscopy last month. Plan is to restart Avastin in 2 weeks, for at least a year. Still not really sure how Avastin is meant to help with no solid tumour, but onc feels it can stop microscopic tumours getting a start since they can't get a blood supply, so they die off before they even can be detected on scans. He's got me this far, so I guess I should keep listening. I think I'm an odd case, I haven't found anyone here that has a similar clinical history to me, so I guess it makes it hard to know how to treat me. I've been NED for 9 months now and feeling almost back to normal - except for this sore neck on turning my head and a sore achilles on waking that my onc says is nothing to do with cancer or my treatments. Seeing a physio tomorrow about the neck - hopefully they can help.
Stage IVb age 37 Nov11
1 year NED
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
FOLFIRI Nov14 >
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