Oxaliplatin and capecitabine side effects

Hi and welcome back although I’m sorry to hear that you’re struggling. I’ve not heard of oxaliplatin causing tinnitus but I’ve had a quick google and it is a known side effect although not one of the more common ones. I think I would definitely run this past your oncologist as some of the oxaliplatin side effects can get worse even after stopping and it’s not something that you would want to risk having on a permanent basis.

Never worry about being over cautious and always mention anything that seems out of the ordinary - I mentioned in passing that my tongue felt funny and like I’d eaten a whole bag of aniseed balls and the oncologist stopped the oxaliplatin from then on.

Take care

Karen x

Hi ,

Welcome back to the forum . 
That’s a very annoying side effect. Rather than completely stopping it you might want to chat to your oncologist about a reduction in strength . The second year my mum had the same combination they had to reduce her dose for other reasons but the upside was a significant reduction in her side effects with only a minimal reduction in strength .  She still had a brilliant outcome from treatment . Your oncologist would maybe have knowledge if others found a reduction helped . 

There may be a middle ground that just might help . Worth having a chat . 
It’s a horrible condition . My dad had it for a while . But it has subsided.

So pleased to hear its slow growing and wish you every success with the treatment . I really do hope you find a quick solution . 
take care ,

 Court 

Thanks for the reply,  I also looked it up and saw it was,I also mentioned about Slight change in my tongue but my feet and toes are fine,they gave me the option of reducing it by 20% or stopping the Oxaliplatin and just do the pills,it's a fine line between getting the most out of the treatment and not being left with bad side effects,I've seen reports of people going deaf (take what you read with a pinch of salt),there have been many studies showing less than 1% better outcome of people doing 6 months of treatment over people doing 3 months,after thinking about it I'm thinking of giving it 1 more go at the reduced amount and hope the titinus doesn't get any worse

Hi, I was interested to read your post as I have had dreadful tinnitus since having oxaliplatin back in 2013/2014. Although I mentioned it to the nurse who did my infusions I never mentioned it to the oncologist. I also have been left with painful feet which I did mention but not until after all my chemo had finished! I wish I had said more about it now as I just thought the side effects would disappear in time. I also had AF (atrial fibrillation) in 2013 which I believe was caused by the chemo. The oncologist wasn't convinced the AF was caused by chemo so when I had lung mets surgically removed in 2016 he prescribed capecitabine as a mop- up treatment. I got AF again so he stopped that. Unfortunately I now have more lung tumours so waiting for an appointment to see what is recommended. Good luck with the rest of your treatment.

Sorry to hear you have more tumours, I hope future treatment goes well,I was classed as stage 4/terminal  in January 2018 and would be having palliative care,was given between 6 months and 2 years depending  how treatment  went,I had chemo but lasted 3 sessions as my red and white count and liver count were all over the place,  after 3 months had a thermal ablation  on my lung and the following  month I had 30 sessions of radio on my throat, I'm still here and believe  being positive and upbeat about it helps,  I have my low days but then set myself targets of what I want to do,all the best

Update, decided  to go ahead with the reduced  Oxaliplatin and had it on Friday, maybe a bit early but my tinnitus  has not got worse but my nausea  is almost non exsistent  and I'm eating better than the other sessions  I had, think I made the right choice

Brilliant news . The difference in my mum was amazing and just gave her some quality of life again .

Glad your comfortable with your decision. Nausea is rotten .

Hope it keeps going well with you .

Court