mpbser wrote:Husband is having serious second thoughts about doing Oxaliplatin. He nearly walked out of the hospital before they put in his IV to do the port procedure this afternoon, upset and angry that his oncologists never provided hard data to support the addition of Ox. I pulled up a study on my phone at the very last minute. I read it to him and he decided to just go ahead after learning from our awesome general surgeon how easy the port will be to remove in the case he backs out. His first infusion is scheduled for Wednesday so he will have a few days to think about the numbers and make a final decision.
For those who decided to not do Ox, what has been your experience? Thank you in advance.
I'm stage 3, but I did Xeloda (the oral pill version of 5-FU) without the Oxa (aka Monotherapy). I had a pre-existing neuropathy that they didn't want to make any worse. Like you, I did some research on the benefit. From the studies I read, it appears to increase the success rate by about 5%. For me, that number was worth not dealing with the additional side-effects. I did very well on Xeloda. I had some side-effects, but nothing that kept me from working throughout treatment. Mostly it was fatigue, which I addressed by keeping my office dark and cool through the summer, and hand/foot syndrome, which I addressed by using a very good lotion 2-3x daily.
Currently, I am NED (no evidence of disease). My 1-year mark was in March, so I'm at about 1.5 years right now.
If I have any advice to give, it's to be your own advocate(s). Read up on treatments, discuss them with your doctor(s), but ultimately make your own decisions and stand by them. If they are informed decisions, you can feel confident you are doing what's right for you. For example, I fought with my oncologist to do the oral version of treatment vs. infusion / port. As the primary income and health insurance carrier for my family, it was the right way to go. It also felt much less invasive to me, and allowed me to keep myself in a good place mentally and emotionally, which I think is very important. Plus, as I found out, I feel the oral version is more effective with less side-effects anyway. So win-win.
Again, as long as you're comfortable with your decision, that's the key.
I hope this helps. Keep us posted on how things go, and don't be afraid to ask questions.
Smiles, hugs and prayers,
Tracy (aka WriterGirl)