Postby Lifes2short » Mon May 04, 2009 2:26 pm
Kelly, sorry for the bad news. Don't listen to those docs who say that 2 1/2 years is the turning point. I've been at this for 3 1/2 years and I'm still going. Not as well as I'd like, but I'm sill up and around and active every day. As a matter of fact, now that my pain is under control and I'm off my 3++ year course of oral and/or transdermal narcotics, I feel better than I have in a long time.
I attribute my longevity at least in part to the fact that I went light on the chemo. I use chemo until my cancer stops progressing. Then I stop. It's left me with lots of options. I used Folfiri multiple times with positive results. I've only stopped using it because it made me terribly sick the last couple times I tried it. I could go back to Folfox (yikes, just the thought of that makes my hands hurt!). Avastin seems to still be working for me. I haven't yet tried Erbitux. I haven't yet used the oral 5FU (I can't remember the name of it).
I don't know if this is why I'm still here or rather if I'd be doing a lot better if I had finished my courses of chemo - I do have liver mets, bone mets, lymph node mets - I'm not exactly a picture of health here. I'll never know for sure, I just know it's worked for me. I've been able to balance treatment with quality of life. And I'm still here enjoying my kids. My doctor was skeptical at first. Now he's totally on board with my short stints of chemo. He's also one to NOT do chemo if I feel good. I have a scan next week, we'll see what it says. If the cancer is progressing fast, I guess I'll have to sign up for more chemo. But it's not that devastating because I know it'll only be for a couple months.
You might want to give this approach a try. Perhaps you could do just four rounds of Folfox and scan to see what's happening. If the cancer is controlled, why not take a break and save the rest of the Folfox for when you need it more? I am just one person. This has worked for me. It might be totally wrong for anyone else. I just wanted to post it for consideration. I do feel lucky to have so many chemo options still available to me.
Take care and best of luck as you head back into treatment.
Age 45; Stage IV, mets to liver, nodes and bones.
Dx 12/05; Chemoradiation, surgery, Folfox, Folfiri, Folfiri, Folfiri, Folfiri
Intrathecal pain pump 3/09 (works great!)
Irinotecan / Erbitux 5/09 - ?
Two wonderful kids ages 7 and 5