The Colon Club

Plus, as I found out, I feel the oral version is more effective with less side-effects anyway.

susie0915 wrote:

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!!!

I had that first bit syndrome also. After an infusion, I would take a bite of food and the pain went from ear down the neck. The next bite would be fine and I could continue to eat. It was so weird. Like you, that would stop after a day or two. I had my treatments in the winter so the cold air would take my breath away, so always covered my mouth and nose walking out of treatment center. And if I remembered, I avoided cold drinks for a couple days. My neuropathy really didn't seem to kick until a few weeks after my last treatment. Would notice a little the day of infusion but always disappeared. It has gotten better. Balance is better and don't drop things like I used to. More tingling and numbness and tougher on hard surfaces when barefoot. So always wear shoes or slippers. It's more annoying than anything else. Does not prevent me from doing anything. When I told my oncologist about first bite syndrome she never indicated it was a common side effect. Made it sound like it was a very uncommon effect. I thought I was the only one.

mpbser wrote:I wrote my reply before I saw your comment, TXLiz.

Yeah, I get your point but I don't think he is considering neuropathy a severe side effect. I think he's thinking about blood clots, that type of thing that OX can cause.

P.S. cancer in party hats.... haha... evil devilish partiy-monsters!

cbsmith wrote:

mpbser wrote:I wrote my reply before I saw your comment, TXLiz.

Yeah, I get your point but I don't think he is considering neuropathy a severe side effect. I think he's thinking about blood clots, that type of thing that OX can cause.

P.S. cancer in party hats.... haha... evil devilish partiy-monsters!

I think the blood clots are far less likely as a side affect than the neuropathy and cold sensitivity. The drignsheets they give list every possible side affect you could have, it doesn’t mean everyone will get them all and it doesn’t indicate how common each side affect is. Your oncologist can help with some of that by advising how often he has seen each side affect.

It is a lot easier now to try it at first and see how it goes, he may not have that many issues from it. Not trying it at first and waiting to see if the 5fu alone works and then adding oxi afterwards if the cancer has grown won’t be as effective.

mpbser wrote:Thanks for chiming in, WriterGirl and susie.

Yeah, we have seen various studies with varying data but it looks like the average % of conferred improvement is somewhere between 5-7%. That's not a whole lot, but might be worth it if the side effects aren't too severe. It's his decision so I am not pushing an agenda in any particular direction on him. When he told me unequivocally that he would be doing chemo if that is what the doctors told him he should do, I stopped encouraging a plant-based natural regimen as an alternative. Funny thing is that now that his doctors are all encouraging him to do Oxaliplatin on top of capecitabine/xeloda, he is demanding supporting evidence and is extremely reluctant. He wasn't so demanding of data regarding capecitabine/xeloda. Not sure why.

I noticed that no one with Stage IV only doing monotherapy has weighed in, but that doesn't mean much, really.

mpbser wrote:I wrote my reply before I saw your comment, TXLiz.

Yeah, I get your point but I don't think he is considering neuropathy a severe side effect. I think he's thinking about blood clots, that type of thing that OX can cause.

P.S. cancer in party hats.... haha... evil devilish partiy-monsters!