Hi JB,

Sorry to read about your bad experience. I had problems with this combination of drugs, only managing 4 infusions before my medical team and I decided to stop. 

After the early infusions, I experienced the cold fingers, contraction of the jaw when eating or drinking etc. 

This was manageable (mind over matter!) but as the infusions went on and the cummulative effect developed, I became very unwell. I won't go into detail as Indont want to cause worry to you or others - it actually turned out that I wasn't able to process the chemo (lacking an enzyme in my liver(only 5% of patients have this missing enzyme apparently!) 

Let your Oncologist and chemo nurses know - keep notes of symptoms etc as they may just need to administer infusions more slowly over a longer time span, or give you other medication to help you tolerate the infusions, or even suggest another chemo combo. 

Hope this is more helpful rather than worrying, take care, Jo xx

p.s. I wouldn't hestate to take the chemo option if I was able to.

Hi thanks for some insight.  I was expecting a bit more reaction due to build up of drug but wasn't expecting it to be that bad.  The spasms in my fingers were crazy shaking and sore, couldn't touch anything just starting to ease off except for the still can't touch anything cold or even luke warm... throat was closing up, I stopped breathing yesterday but got that back by slowing myself down and taking deep breaths.  Vision was blurry but again eased off.  Bones aching, feet same story.  I phoned emergency number and they made a note and gave some advice plus mentioned they may lower the dose.  First one was 2hrs but cos of my feet they did yesterdays over 4.... guess that didn't work LOL anyway took myself off for a walk, made sure I ate, had a nap and then a lovely 2hr visit from my son..... think its all settling down.  Really dreading the third but as you say I've made a note and hopefully they will adjust.  I did some research on doseage levels and compared what I am on to others matching myself as close as and I seem to be on a very high dose, but then I'm no expert so maybe I am missing something.  

At least I can sort of type now - weird stuff!!

Still smiling.... just :) 

JB x

morning, hopre things going ok, been thinking of you and really hoping treatmentt continuing well without too many unwanted side effects.

in for my thrid this week if all well, last one more tolerable as anti sickness meds just about covered things. hands, like you can be bit challenging at times esp now colder outside and of course the fatigue...........sounds like a ladylike word for ive been hit by a wall of exhaustion and am flat out shattered.

frustrating but learning just got to go with it.

take care and keep wrapped up warm its getting cold out there xxx

Afternoon Mouse

much better third time although feet sore and took 9/10 days to fel human..... that oxiwatsit is horrible hahaha anyway building my self up for the fourth round which should be this Tuesday everything being ok with bloods.... really don't want to do this, but hey what can I do LOL DEAL WITH IT!!! :)  I haven't had dose lowered so hoping he will do this time round as the feet and hands and throat a ral issue to deal with and like you say its gtting colder :(  I have had to put heating on this weekend much to my disgust and electricity man may have to chase me for their bucks hahaha 

Good to hear that you had a better treatment its comforting to know someone is being managed as hate hearing when someone is suffering ..... long may the good treatments continue!  Fatigue is also increasing for me I am sleeping like never before, used to be able to get away with 5/6hrs sleep now I need double that, so try on the weekends and so far its getting me through my working week.  Tummy been a big issue for me even though they have given me something to help control it, its not perfect :( metalic mouth now and then yuk ..... but haribo sours helping ... oh and liqurice :)

I am in Monday for bloods, Tuesday for chemo what days you in.... I will keep you in my thoughts hun and pray its a good one for you, hugs from me and take good care of you xxx

Oh I did put on a stone!!! Was surprised but happy as I went done to 10st after surgery and been trying to get it up just a bit, will settle now at 11st :) 

Take care my friend you in my thoughts

let me know how it goes when you up to it and I will you, sincee I am one treatment ahead 

JB xxx

morming, just quick one to say hope all goes well today. im in too today for 3rd so be thinking of you.

tingly fingers crossed for as smooth a time as possible xx

Morning :)

You in my thoughts too, heres hoping for a smooth ride!! By the way at the hospital getting my bloods done I had time for reflexology session..... was awesome!!! Today I am feeling the best I ever felt hahaha shame its about to to be ruined!!! And I found that udderly smooth cream hmmm giving it a go :)  Feeling udderly positive today hope you go well my friend!! Catch you on the flip side soon and we can compare :)

Best wishes and lots of virtual hugs

JB xx

Going to have a bacon and egg sandwich befor I go .... why not! :)

morning, hope its been going ok? had third last week and went much better managed to just about stay on top of nausea. fingers bit of a pain esp now getting colder out but its manageable, just have to rethink how do things. hair falling out daily, got very thin but not totally not there but getting me down a bit. wondering what to do about it as im kind of in the middle. theyd said didnt expect me to lose it but everyday another load comes out and its getting thinner and thinner and a complete pain to manage! thing is havnt told a lot of people about whats been going on so whatever i do next could be bit of a giveaway but equally im fed up of looking in the mirror at myself. not allowed to colour it, going mad. sounds pathetic i know when you think about everything else but thats me at the moment.

think if my stomachs settled enough tonight im getting dominoes in for my and the little peeps as a treat!

sorry i probly sound like a real grumpy old woaman this morning! i will give myself a metaphorical slap and get a grip! thankyou for listening tho and i hope all going well with you.

wont be long before back in for the next round, another one down!

xx

just checking to see how you are? hope youre alright, havnt seen you on here for a while. had few complications and just trying to get my head round it all.

thinking of you x

Hi mouse I have had a similar problem as your lips but mine is my hole face I am on Piriton tablets and E45 cream that’s what I was advised. Hope that helps. I’ve just started my second cycle now on 2600mg tablets for two weeks then a week off. Then only two more after that. 

Stay well and hope the side affects stay well away. 

AJ. 

Hi,

I was interested to read about your walking problems.

U

I have the same; how long did yours last?

I'm still having problems six months on.

Hi Puppet,

Welcome to Cancer Chat. I just wanted to advise you that this thread is fairly old, and mouse68 hasn't signed in to Cancer Chat for several years now.

You may wish to start a new thread on the forum, if you'd like to get any advice from fellow members of the forum.

Wishing you all the best.

Ben

Cancer Chat Moderator

First time chemo and home with FU5 pump for 46 hours after 2 hours Oxaliplatin in hospital and had exactly same side effects. Cleaned my teeth as had nasty taste in my mouth but I think the water was too cold and yes it felt like electric shocks all over my mouth - or like when you bite on silver foil onto an old amalgam filling! Then I got tingly finger tips for a while which is now intermittent. Got the claw hand scenario as I sat in a colder room on the phone the whole hand cramped up. Then when I went to eat I got horrible jaw spasm down behind my ears. I thought is was the metal cutlery so tried wooden ones which was then fine. However later I opening my mouth- maybe too wide to eat a boiled sweet - still trying to alleviate the nasty taste and I got the jaw thingie again. Now in bed with bed socks and a bit of pins and needles but subsiding. It is manageable and I guess I'll learn not to open my mouth too wide and avoid cold. Just hoping I will cope with future cycles. It's good to know someone else had the same side effects as the jaw and teeth things are quite painful and weird but for me so far short lived. Has anyone who experienced this found it went after completing 6 cycles? Thanks 

First time chemo and home with FU5 pump for 46 hours after 2 hours Oxaliplatin in hospital and had exactly same side effects. Cleaned my teeth as had nasty taste in my mouth but I think the water was too cold and yes it felt like electric shocks all over my mouth - or like when you bite on silver foil onto an old amalgam filling! Then I got tingly finger tips for a while which is now intermittent. Got the claw hand scenario as I sat in a colder room on the phone the whole hand cramped up. Then when I went to eat I got horrible jaw spasm down behind my ears. I thought is was the metal cutlery so tried wooden ones which was then fine. However later I opening my mouth- maybe too wide to eat a boiled sweet - still trying to alleviate the nasty taste and I got the jaw thingie again. Now in bed with bed socks and a bit of pins and needles but subsiding. It is manageable and I guess I'll learn not to open my mouth too wide and avoid cold. Just hoping I will cope with future cycles. It's good to know someone else had the same side effects as the jaw and teeth things are quite painful and weird but for me so far short lived. Has anyone who experienced this found it went after completing 6 cycles? Thanks