Your opinion

KathiM said:

Welcome to the club no one wants to join!!!
....and for the cancer no one wants to talk about...lol...

When feeling frisky, I work the word 'rectum' into conversations as much as possible, just to see people flinch!!!

As you have already seen, the 'been there/done that' advice is priceless here! I'm so glad you posted...there's nothing to it!

I am one of the 'old suckers' in the group...'only' stage III....but cancer free for 5 years and counting (my second primary, breast cancer, showed up 6 months after my first, rectal...tried to get me again!).

Welcome to the semi-colons!

Hugs, Kathi

plh4gail said:

Hi Jan and Jimmy my
Hi Jan and Jimmy my diagnosis was in June 2010 but different than yours. I just wanted to say hi and let you know I was thinking about you. I know you will hear many thoughts and experiences on your question here.

Take care, Gail

CherylHutch said:

Hey Kathy
I read your comment with some interest because, as you know, I'm in BC too We beez neighbours, sorta

Anywho... the first protocol I was on was FOLFOX and yes, I have to admit I did not like the Oxi one little bit. Overall, I handled the FOLFOX very well, but by the 10th treatment it was the Oxi that gave me major neuropathy in my feet and nerve damage from my knees down (including my feet)... so we cut out the Oxi for the last two treatments or so. I responded very well to that and came off the chemo in Oct 2007. I do have nodules in my lungs, but they went kind of dormant and weren't doing anything until this past spring they started perking up and becoming a little more active than they had been.

So I had a nice long stretch of 2 1/2 years or so with no treatments. Ahhhhh... bliss! But starting this past June 2010, my onc put me on the Xeloda pills. For the first three months, when I got my scan in Sept... fantastic results! Tumours shrunk by 33%!! Yayaya!! So I was happy taking the next 3 months, even though the Xeloda really did a number on the bottom of my feet, especially the heels. Had another scan in December... sigh... my cancer stopped responding to it and two of the tumours were starting to grow even though I was on the Chemo. So, I was on it for 6 months.

Starting in February... I will be taking the Irinotecan, by itself. I forget what FOLFORI is... that's Irinotecan plus something else? So I guess when I'm just on the Irinotecan, then I'm not on FOLFORI.... and I know I'm not going to be taking Avastin yet. I will be getting tested with the next blood work to see if I test positive for the KRAS gene. That's not because of the Irinotecan, but should we have to switch chemos at some point, then we will know if I can or not.

Soooo, I'm thinking that starting with FOLFORI with Avastin is not necessarily the first protocol for Stage IV... I guess it has to do with where the spread is, how active it is, etc. Actually I have no idea why some get started on one and others on another. Maybe I have champagne tastes so I start on the expensive ones??

Cheryl