Hi all,
I'm just looking for opinions on what treatment I should have now. I was diagnosed stage 4, with spread to para aortic nodes, 3 1/2 years ago. Since then I have had 2 recurrences, 1 to para aortic nodes (PALNs) and 6 months later PALNs again, plus possibly lungs. The PET scan that found my second recurrence was pretty horrific, but none of the hot spots could be found on my CT so were assumed false positives, but there is a chance I had more extensive Mets.
After 6 months of Folfiri and Cetuximab I am now NED. I'm so happy, and looking forward wondering what treatment to continue. I am in the UK and Avastin is not available to me unless I pay privately, which I'm not really in a position to do. I was keen to continue 5fu and Cetuximab as a maintenance chemo, but my onc is reluctant. She said there is some evidence that Cetuximab taken long term causes drug resistant Mets. My bloodwork at the moment is all normal. My CEA nd CA 125 hasn't been raised since my primary tumour was removed 3 years ago. My highest CA19-9 has been 44, this was during chemo my last round of chemo, it then dropped to normal.
My onc's idea of not having any chemo for now (untill my next recurrence) is very tempting to me, I have had coming up to 35 rounds now over the years and that's left me feeling tired. But ultimately I want to be around for as long as possible, whatever it takes. So I'm interested to hear what you would do in my position- what chemo would you want as maintenance, or would you take the chemo break?
Thanks