Oxilyplatin and Capecitabine -Xelox

superfly

Hi Sean

I haven't had this treatment but I noticed that your post hadn't had any responses.

I see that you normally post in the bowel cancer group and I think you're more likely to get replies if you post there as the chemotherapy group is very quiet. Clicking on the link I've created will take you straight back there if you wanted to do post there as well.

All the best

x

I had 12 cycles of xelox. Oxaliplatin on day one and 9 days of cape 3 rest days then start on next cycle so over 2 weeks not three.

For me tiredness got worse as I progressed through the treatment and I got used to falling asleep if I got warm and comfortable. 
Worse to me was the pain in the injection arm despite using a heat pad. Then the onset of peripheral neuropathy in my fingers. For some it’s temporary but not me. I can keep it at a tolerable level by taking several high strength vitamin B complex tablets a day, which I have on prescription. I’d advise discussion with your oncologist.

I lost my appetite and 6kg which probably didn’t help the tiredness. Happy to share more if you would like.

Hi Sean

i joined here this morning. I had 6 cycles of this with the last one in November. The cape tablets i took daily without a break until September when they had to reduce my dose. The chemo i was getting every 3 weeks. Felt tired in between cycles, sleeping at odd times. I was told to listen to my body, if you feel tired have a sleep. 
I hope this is of some help. 

Hi

thanks so much for that- gosh makes my treatment sound a doddle in comparison. I understand they have reduced the intensity of xelox from 6 monthly programmes to 3 monthly ones with longer breaks so sounds like I may be benefiting from that.

Is peripheral neuropathy pins and needles? I had these mildly after the first Oxaliplatin session but they were fierce this morning in my hands for about 30 minutes but seem to have reduced now. Also, been getting a terrible pain across my jaw from time to time and weird taste reactions but apart from that have been ok, apart from fatugue. . 

Yes, do please share anything else when you have time. 

Sean 

Hi Sean

Yes the peripheral neuropathy is pins and needles. After cycle 1 i had an instant reaction to cold water, it felt like an electric shock but vanished as soon as i took my hands away from under the tap. 
I became very aware of cold things and learned not to touch. It eased after a few days and came back after cycle 2. It lasted longer after each cycle and after cycle 5 i was wearing gloves right up until cycle 6. 
The jaw pain I got with the first bite of every meal but it stopped after the first bite. I had forgotten about that, must have erased it from memory it was so unpleasant. 
They decided not to give me cycle 6 Oxaliplatin as the finger/nerve damage may become permanent . My toes and fingers are still numb now. The chemo i started on Wednesday also causes pins and needles in my fingers. This is day 2 of my fingers feeling different, not numb but tingly if that makes sense. 
Paul

The oxaliplatin is a metal salt which is why it can cause nerve damage. With my vitamin B complex I’m now just at the slightly odd loss of touch but tingling in fingertips and toes. I also had sensitivity to cold, in my nose, I was forced to wear a scarf across my face when out in the cold. That stopped soon after that treatment I had 9 oxaliplatin and 12 capecitabine a year ago. So it’s fairly certain I’m stuck with the PN now.

The vitamins don’t have any side effects, we need them anyway especially B12 which is found in meat and our bodies excrete any excess so I don’t have a problem taking them. On prescription they’re free and I use ECHO so they get delivered to my door. There were advised by my oncologist, and for me do help considerably.

Go with what your body tells you is good advice. Don’t push yourself too hard and then feel wrecked because it takes longer to recover. Stop before you feel tired.

Hi Devon55

I have just started taking vitamin B6 tablets everyday, as prescribed by doctor of course, too early to tell if they are doing me any good. This new round of chemo also causes neuropathy so hoping the B6 will lessen the problems. 
My toes are also affected which causes balance problems. Not so much a problem in daylight but when it’s dark and i can’t see my feet i can lose balance very easily. 
i did not realise the troubles people go through with cancer. My chemo has opened my eyes.

Paul

My oncologist told me he felt that the B complex works better than a single vitamin, no idea why but i take two high strength twice a day and for me it does have an effect, I can feel the difference if I don’t take them.

I too get unsteady on my feet, I suspect because my current regime makes me feel slightly dizzy. Also worse at night because darkness removes the sense of reference you get from sight and you rely on balance which seems to be what’s happening to me. Similar to when you lose the horizon onboard a boat, your brain can’t reconcile the non moving boat with the moving message from your inner ear and this causes nausea, not helpful when you are already feeling sick anyway.

Hi Sean, 

I am also on a Capox chemo regime. Mine is for a stage 3 bowel cancer. Just had the 3rd dose of 8 last Friday and I have slept most of the day on and off. I am getting the pins and needles to cold water, metal, have to wear gloves to get anything out of the fridge. It does seem to wear off after the first week after the iv oxaliplatin but I have also had lip and face twitching which is horrible. I was asked if I had parkinsonism by someone after my first session. I have to be wrapped up like an Eskimo when I go out in the cold. It affected my vision also which was worrying. Not sure why that was but it seems OK now. I mentioned it to the Dr but he didn't seem too bothered. 

Does anyone else have any problems with their vision immediately after the oxaliplatin? 

My Dr hasn't mentioned vit B supplements at all, in fact I was strongly advised not to take any vitamins or herbal supplements at all. 

Good luck with your treatments. All we can do is hope it will work and not leave us with permanent nerve damage. 

Thanks LouLoubelle , Yes, I am getting all of those symptoms and was very dazed after the Oxaliplatin. Feeling permanently tired- not nice- but needs to be done. Good luck with everything Sean