I'm an old timer but haven't been actively posting for a while but I visit & read the board often. I can't believe it's almost been 6 years since Blake's stage IV diagnosis and 4-years since his recurrence. At the time of his diagnosis, the 5-year survival was 8% which he has clearly surpassed. Then, when he had his recurrence, we were told 18 -24 months and that was 4 years ago. I honestly believe that he continued to do so well because he continued to work full time. Even during active treatment, he would wear the 5FU chemo-pack to work!
Now, after 80+/- chemo treatments, Blake has decided he's done. A good friend told me that she won't die with "chemo in her veins" and that's Blake's choice as well. The tumors have now made their way to his lungs and are "too many to count" they are also in his peritoneum, 6th rib, pelvis & possibly esophagus. Although Erbitux is an option Blake isn't interested in receiving it. He was told it improved survival by 50%; ie: improving 6 months to 9 months. To Blake, 3 extra months is not worth sacrificing his quality of life. It's his choice and I completely respect it. It's important to know that Blake hasn't given up life, he's choosing to LIVE without the interruption of Dr. appts, scans & chemo. He's lost 70 lbs but if you saw him right now you would have no idea he was sick. Luckily, he had it to lose
Although nobody can predict, our (wonderful) Onc thinks he's looking at 2-4 months. I've been told his pain will increase substantially and will be our biggest battle. Although he wears 150 mcg/48 hours Fentanyl patch as well as 5mg 2x daily Methadone for pain, he's had to take Oxycodone for breakthrough pain tonight.
We'll meet with Hospice next week and also try to get in to make funeral arrangements. It will be nice to get these things taken care of with his input. I feel somewhat prepared as I have received a wealth of knowledge thanks to this board and our wonderful cancer team and I'm grateful for that. For me, knowing what's coming our way helps me cope but I don't think you're ever ready.
So, that's our update. I hope it's inspiring and not depressing. Blake has lived a very good life since diagnosis; this has not been a death sentence but a reminder to enjoy life & not sweat the small stuff.
Take care everyone!
Last edited by blakeswife
on Wed Jul 24, 2013 9:44 am, edited 1 time in total.
DH Stage IV 10/07
Colectomy, Liver resection & RFA, 1/13 LN
9/10-current w/built in breaks