Postby Ashlee H. » Thu Feb 13, 2014 12:50 pm
I know I haven't been around much lately. For those of us who are dealing with the end stages of this disease, the deaths of Gloria, Kathryn, plus so many others the last few months have really sucked out a lot of the hope. I know some newbies and NED posters get upset when bad news is posted. I wish everyone here could say they are NED and never have to deal with cancer again.
My chemo has stopped working. There is nothing else to try. I'll have a scan next week just to see where I'm glowing. I'm now preparing to quit work which was a very hard decision to make. The ONC gives me 6 months. I know he isn't God - I could be gone in 3 months or 18 months. From other friends I've known from this board, they had some pretty good months once they stopped treatment. That is my intention as well - to enjoy days without chemo in my body and just be in the moment of living. -Ashlee
Update 2/26/14 - This week I got together with my ONC and we looked at the scans. The Radiologist did not put in any SUV numbers - what's the deal with that??? So he will be doing another report - it was a PET/CT scan why would he think the numbers aren't an issue. Oh sure, he used slightly increased/decrease, greatly increased/decrease, and in one area "resolved", which I loved and want to see more of. So much is based on these scans, and if the reader is having an off day, we suffer. Anyway, ONC says chemo has worked on 80% of the cancer...that leaves the 20% that is laughing at the chemo and will kill me. My ONC is checking into all kinds of things to attack the 20%. But, it obvious the chemo has morphed and I think my only chance is a targeted therapy directed at this evil tumor. So, I am not out of the woods, and won't be. There is still no cure on the table for me. I am on a two month break from chemo and work. I just wasn't ready to turn in those papers yet that would make me a "former employee". So my only goal for the next few months is to work with my ONC on possible non-chemo treatments, and go to the gym to build up my strength and mobility. It was so great not having to wake up to an alarm clock this morning. The chemo has turn me into a 90 year old lady. Everything hurts when I move - getting out of a chair is no easy task these days. Today was my first day back at the gym. I'll go back this afternoon to enjoy the jacuzzi and steam room. I'm in no frame of mind to make permanent decisions right now. My ONC is really trying to find something I can tolerate that will let me continue to enjoy life. I've always stopped chemo when the joy had left my life. If I feel like I'm died, then I might as well just die. So my saga continues....
Last edited by
Ashlee H. on Wed Feb 26, 2014 4:43 pm, edited 1 time in total.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!