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.
lovelife789 wrote:Hi mpbser,
I'm a Stage IV and I'm exactly at the point where I'm thinking to remove Oxi, but I'll give it one last shot next week.
My experience from Oxi is:
1. Did #7 shots of Folfox, no serious neuropathy. I have some numbness at the fingertips but not bad, they aren't hurting, just awkward.
2. Serious first bite syndrome after every infusion, which means my jaw would hurt every time I put food in my mouth, but it usually went away 2-3 days later.
3. Tiredness, I would just take naps after infusion for two days and I would come back to "life" pretty much normal.
4. My blood work had no major issue, the digits would fall but only at a gradual rate.
But what made me wanna drop it is:
1. By #8 shot, I had serious allergic reaction. To the point I thought someone was strangling me and my BP dropped insanely, needless to say I was super terrified too.
2. Only by #8 shot, Oxi totally trashed my blood work. It had dropped by more than 50%.
So what my Dr told me is that Oxi does give me an extra 2% to my overall 5-year survival rate, which is different from the recurrence rate I have been focusing on (don't know why, I guess I just dislike chemo so much I had a lot of mental block with recurrence...). So he wants to give me the best shot possible. We discussed a lot of options and it was decided we will do another shot with Oxi, if it continue to trash my blood work, it will be removed from my cocktail until my #12.
I don't h-eight Oxi personally, because I had the Folfox + Erbitux regimen and together they shrunk my significant liver mets by at least 50% and turned me from inoperable to operable. And with a good surgeon, I'm theoretically NED. I'm almost a bit disappointed I can't continue with my Folfox until my #12...
I agree with the above community member, when you are a Stage IV, you throw everything at it. I went for a brisk walk a few weeks after 70% of my liver was removed with that 56 stitches of scar across my abdomen, 6 weeks later, I started hiking and yoga (with my port, yes I finally got used to it). I take all my supplements, so I thought why wouldn't I try one more time with Oxi with all these other health "programs" I do already?
Not sure if the above helps, but my suggestion is if you trust your Onc, at least try and trust his body too! Sometimes we fail to listen to our body and follow our rational thinking which isn't always the best way..... and best of luck!!!
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