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

Hi again JB,

You've just reminded me about the 'claw hands' I experienced! I now recall being unable to type for about three days after an infusion! 

Glad you're still managing to smile . . . family visits really help cheer us up! 

Fingers crossed for a more successful next treatment, hopefully it's not too close to this last one! 

Take care, Jo xx

hehehehe claw hands .... all I could say was I am getting athritus (spelling) with tears rolling LOL yes but thats exactly how it was!! Fortunately the intravenous is only once every three weeks, then tablets at home for two weeks and then I have one week free of all drugs.... so phew next one only 29th September.  Family and friends definitely do make a difference and I try and do the mind over matter as much as possible too :) it does help with some side effects

Thanks for your input it does help a lot!! Fingers crossed in a non athritic way hopefully :)

You take care too 

JB xx

Hi JB, promise I'll leave you in peace after this! But I used to wear White cotton gloves after infusions as it helped when touching things (that severe cold feeling) and they were more comfortable and less intrusive than wooly ones! They are around £2 from supermarkets or chemists.  Jo xx

I love you bugging me.... you helping lots :) never leave!!! hahaha thanks thats a really good idea, actually I have been wearing winter gloves at home but they not great so going to have a look for what you suggested, you see these are all very important tips .... very useful :)

Thanks again

JB xx

p.s. back to work Monday....... I am sure I will be the only eskimo out there in September hahaha

hi there, sorry to hear youve had such a rough time of it, i have been thinking of you and im sorry not got back to you sooner.

i had my first oxi thigummy infusion yesterday and whilst in the clinic didnt feel to bad until i had to get up and walk out. i use that term loosely as i found putting one foot in front of the other challenging. i dont drink alcohol but remembering my younger uears i thought at first it was like being little drunk but it was more about physically my legs and feet were bit knocked off, couldnt seem to feel the ground properly and bend and move them as i would normally. i dii mange with  a friend.

on getting home it was after id went to the loo and went to wash my hands....instantaneous pins and needles and reddening of my hands. it wore off off but if i touch anything cold its off again. climbing the stairs was difficult and the weird symptoms in legs and cramps meant i was almost crawling on hands and knees, coming down easier but obvioulsy was wary and made sure had hold of something steady.

so tired actually got some sleep. this morning symptoms seems to have eased and just got bit of a headache but thats something i get anyway at times and my necks playing up so thats more than likely the casue of that.

that must have been really scary with the breathing, any idea what set it off? maybe they will run the infusion over a longer period. im really hoping things will settle down for you because you have been so positive and a huge help to me, i really value hearing your experiences and hope i can be of support to you too.

im back today for another iv 5fu think its called. picc line went in ok and am glad not havint to remember tabs as i am struggling still with focusing my thoughts and have to write everything down!

keep going youre doing great and im thinking of you xxx

Good morning Mouse was thinking of you too, I hope today goes well for you.  These drugs are something else right!!!  Yes the hands, feet and cramping really are uncomfortable.  I find I am washing my hands in fairly warm water as often as possible and putting moisturiser cream then my gloves :( feel a lot better this morning, and seems that I have to warm up my body (like a formula 1 warm up lap) before it kicks into gear!! Typing is still a challenge and/or using my fingers/hands to do anything, but hopeful this will ease off.  Spoke to oncologist yesterday through huge sobs LOL and they may lower the dose, yesterday I already had the infusion over a slower time so not sure any slower will help.  Yes the breathing was scary and I think maybe when I walked out the air hit my throat and closed it down, although it was through my nose I couldn't breath which was strange.... I did calm down and start trying to breath more slowly and deeply.  Don't want that again.  You may want to ask if you can have ibruprofin which is what they told me to take for aching crampy joints/muscles it does work or at least help. In the meantime I am monitoring how long it takes this time to feel half human hahaha so I can prepare for next time 29th September.  You are doing great hun keep going I am such a wuss and if I can get through this one I know you going to be amazing :)  I will be checking on you and thinking of you today, you can do this!!!

How did you find the pcc line?  Its not bad hey.... easiest of the whole process hahaha and I hate needles so thats saying something!!  I get what you saying about the tablets, I have 4 alarms set ...two to remind me to cook/eat 30mins prior to tking tablets and two reminding me to take the tablets LOL its like I am in a clock shop!!  Happy days is when I have my one week drug free and turn them damn alrms off :) the little things in life hey :)

Look forward to hearing how you get on and praying this time will be better for you, deep breaths and big girl panties :)

sending love and higs

JB xx

hope what I have written makes sense LOL its only taken like half hour to type hahaha but you worth answering :)

just wrote you a message but then it just vanished, im still getting to grips with all this.

picc line wasnt too bad, but its hit my legs quite hard, walking like a puppet out of the thunderbirds!

nausea just about under control, does seem to be hands and cold, jaw spasms when i try and eat and electric type shocks in my teeth. came out yesterday looking like some kind of bandit with scarf over my mouth and nose to try and avoid breathing in any cold air and even when brushing and rising my teeth was extra careful.

its good that maybe they are thinking of looking at your dosages etc, i dont know anything much about it but they did say to me when starting it can be a a balancing act, which is to be expected.

trying to keep calm, esp for teens and take each day with renewed opimism.........but its not at all easy, thank goodness for forums like this.

take care, may the force be with you xxxxx

hahaha we must be the best looking guys and girls in town :) :) 

if you just continue eating through that jaw like clamp feeling I find it goes pretty quickly, pity ice-cream is off the menu for a few days LOL

I have been doing salt water rinses what you using?  this morning my lips look a little burnt, piling on the vaseline, will ask them what I can use.  

You right I think its definitely a balancing act and hopefully third time round will be ok.  We have to stay strong for loved ones but also for us too.... however I found a cry in private now and then.... or with Dr helps too :)

Go well my friend I pray its a good day for you will be thinking of you and look forward to your update 

JB xx

morning, sorry been so long and i hope things settled down for you. ive not been too well and hence abscence. quieter week this week and hoping to get back on some kind of even keel before next treatment. finding it really tough. focused so much on being positive completely underestimated what i might feel like. know now! 

know its a learning thing as especially only just started, and maybe ive been bit unlucky but it seems relentless. how youre supposed to recover before the next cycle must be a major challenge unless its just me?

think its bit of a double whammy with the type of surgey i had. suspect chemo may be exacerbating what theyd warned me about for post op but its just taken a while to kick in. i have been struggling on and dealing with the side effects but its another week until i see dr and i think im going to have to seek advice sooner. so exhausted and what to eat what not to eat is just. well i just dont know any more. nothing really makes any difference but of course staying as well nourished as poss does. 

how are you finding things food and drink wise? 

im due for my 2nd round next week and just feel, if im honest like running away.

hope youre ok and managing, been thinking of you

xx

morning, sorry been so long and i hope things settled down for you. ive not been too well and hence abscence. quieter week this week and hoping to get back on some kind of even keel before next treatment. finding it really tough. focused so much on being positive completely underestimated what i might feel like. know now! 

know its a learning thing as especially only just started, and maybe ive been bit unlucky but it seems relentless. how youre supposed to recover before the next cycle must be a major challenge unless its just me?

think its bit of a double whammy with the type of surgey i had. suspect chemo may be exacerbating what theyd warned me about for post op but its just taken a while to kick in. i have been struggling on and dealing with the side effects but its another week until i see dr and i think im going to have to seek advice sooner. so exhausted and what to eat what not to eat is just. well i just dont know any more. nothing really makes any difference but of course staying as well nourished as poss does. 

how are you finding things food and drink wise? 

im due for my 2nd round next week and just feel, if im honest like running away.

hope youre ok and managing, been thinking of you

xx

Evening hun

so sorry you been struggling with this one.  Today is start of my drug free week so 2 treatments done  however this one wasn't nice took me 5 days to use my fingers with any control and I have really suffered with upset tummy :( however eating hasn't been a problem.  Didn't like this one at all quite a few side effects that I didn't like but I am feeling ok now except my feet..... they so cold :( even with socks - oh and lips are sore like blistered! I am dreading next Tuesday when I satrt my 3rd treatment but hope the oncologist makes a change if possible.  I have been at work since last Monday and although very tiring its been good socially :)

Its really hard keeping positive when the effects are not nice, and unknown.... you just don't know whats going to happen and once in your body .... what can you do :( but we have to do this, we must keep telling the oncologist if its making us unwell so they can keep managing it and keeping us as comfortable as possible.  Don't keep quiet.

Sending big hugs your way

JB xx

p.s. I got bloods Monday and all being well Tuesday intravenous when you having your second?

morning. thankyou for sharing your experiences, the side effects are pretty grim at times and exhausting. trying hard to get head in good place before next week and keep open mind. maybe i will feel better when seen oncologist and had chance to discuss next treatment and how they can help alleviate the symptoms a little, if they can. im in on 29th too so will def be thinking of you.

altho first treatment bit bumpy at least it gives an insight into how my body reacts to drugs and an opportunity to learn how to juggle meds to make it maybe not so bumpy.

theres no choice really tho other than to continue in order to have the best chance. 

the upset tummy thing i can totally relate to! days and days and days! 

my dentisit was really helpful with regard to mouth problems and offered some good advice and the hosp sent me home with something as well if needed. i havnt had any problems yet........which now having said that will mean ive tempted fate! the only thing have noticed is the jaw cramping and very very dry mouth, but thid did wear off. 

feels like going in for some kind of warped lucky dip approaching next treatment......what will come first? guess the only thing we can do is be as organised as poss with meds for whatever we get hit with.

i am a mere novice and def need some advice from oncologist. i feel so unconfident and lost and like im floating around in this sea of unknown ness. positive to all this you can make up words and just blame it on the meds and that complete fog that can take up your entire mind space!

sorry im rambling...was going to put a little smiley face in there but im not sure how to?

you are doing really well. you sound so positive and doing really well to be back at work! will be thinking of you on the 29th, 

take care xx

Hi

I can relate and you will be in my thoughts on the 29th too :) .... to make a smiley face use : then next to it ) no spaces hahaha the little things.

My lips and corner of my mouth dry and little blistered hoping they can advise what to use, I have tried everything.  The inside is fine so far... watch me jinx things too now LOL definitely speak to oncologist hun and make your feelings known, let me know how you get on too.  The upset tummy they suggested codiene together with imodium and its working so ask.... what a relief xxx

On my week thats drug free like this week I make the most of cold cooldrinks, hambugers chips and ice cream ----- it cheers me up gives me energy and the only week I can tolerate cold things :)

have a beautiful weekend you will be just fine, I am a big wuss so if I can do it you can! I have every faith in you and you doing great so far!!! We will be fine next week, and when possible compare notes 

Best wishes always

JB xxx

Hi Mouse

How are you getting on?  I thought I would update you as had my 3rd round of treatment yesterday.  After consultation on Monday it was agreed that I would go back to two hr infusion but prior to it have an hour infusion of magnesium and a bit of gluclose..... spasms gone this time just the tingling in hands and feet with cold as we know is an affect that will always be..... but much much better this time.  Might be worth you asking your oncologist..... hoping fingers and feet will wear off in a couple of days.  Am even managing to work albeit from home.  Cant do cold drinks or food as per normal first couple days/week, but appetite is good.  Also they presacribed codine together with imodium (forget medical name they use Lam.... something) and tummy is under control

Take care 

JB x

hi there. you sound really positive, so pleased its going better and hope it continues to. ive had probs with abdo pain and nausea and so have been put back a week. trying everything i can to get back on track and hoping all going to settle as feel like im slipping behind but at same time insides struggling. 

great to hear from you, have been thinking of you. really helps me to be in touch. think youre doing brilliantly to be working through this.

spoke with oncologist and going to be prescribed some more meds for nausea and vomiting and prevent what happened last time. 

dont think there is any escape side effects but hoping will be better next time.

thinking of you and hoping it continues well xx

Hey great to hear from you and sorry you been put back hun but they must sort you out and make you more comfortable before carrying on.  This is a balancing act for us and the Dr's but they will hopefully have it right for next time.  Must admit had a few quezy moments today but it soon passed.  I guess each treatment is going to be a challenge but we can do this hun for you and your family, I know you can.  Really glad the tummy is sorted I so can relate with you on that .... our poor tushes so sore :( never thought at 46 I would be using baby bum cream hahaha and here I sit with my new gloves that enable me to type on computer and mobile and not get the tingling because they exposed to the air hahaha I really must look a sight and glad I am working from home this week!!! 

Please keep me up to date on your progress when you can as you always in my thoughts and I am hoping this time you will get a good cycle of treatment.... well as good as they get right?

Most disappointing thing I have two belgium choc eclaires staring at me in the fridge and i can't eat them as they too cold.... maybe warm them up hahahaha cream might taste funny warm though LOL :) ***sigh*** I might have to part with the pair to a neighbour (don't want them to go off..... try again in a week or two

love and light and plenty hugs all will be ok

JB x

just watching bake off! how about warm choc fudge cake? know what you mean about cold food and drink. am also reading book written by a dietician for people with cancer, trying to get myself as well nourished as poss before next round. if doesnt improve going to have to get some advice from dietician. think body still adjusting to life without half my colon.

might get myself some gloves like you, sounds like its helping.

thankyou for your support, going to get my head in the zone as i dont think i have been. lot to get your head round and ive felt overwhelmed with it all. i guess we all reach that moment at different times, that moment when we realise we have to muster that extra strength and fight, even when we feel like just curling up and pretending its not really happening. 

keep going my friend xxx

evening, been thinking of you and thought id just write and see how you are. hope youre managing and not having too many problems with this round. thinking of you xx

Hi Mouse

oh much better this 3rd round, magnesium dose 1hr infusion first then som gluclose and walla a better reaction, fingrs still a little tingly which is annoying but I am not complaining as last time it was doing worse things lol gloves definitely helping too.  I worked all week as well even though chemo was Tuesday so feeling proud although really tired and find myslf slipping off for an hours sleep, but I was working from home so that did hlp.  Monday I will go into the office, provided not too much rain.

My son came around today with a large mcdonald and chips and banana milk shake hahaha bad I know but I am tired of fruit veg etc.... don't know how I drank the ice cold shake but I DID!! :) :) 

Now I have had my smarties, showerd and ready for bed, watch the England rugby game and then probably snooze.... hopefully right through.

How are you getting on? You are all always on my mind from this forum and I always wak up wishing everyone a painless, fun filled day if possible.... I know its not always the case but thats what I always hope for :)

All things considered I am doing good, roll on 20th Oct 4th chemo and we half way, lot less than what a lot of people have but I am rady to get shot of this journey hahaha

Love and light and big healing hugs

JB x

sorry about missing 'e' lol notebook giving up me thinks oops better buy a new one sometime, I am sure you will understand my message hehehe

so glad youre doing better this time round!! sounds like youre doing brilliantly with work and the madonalds! my insides seem to be settling down bit so just hoping they continue to so that i can get back on track.stiill feel bit frail inside, not sure whats going on, was really good up until first treatment. 

dominoes pizza is what im waiting for but think its way off that yet! eggs and ready brek yawn.zzzzzzzzzzzz. 

its really helping being able to chat to you, thankyou, giving me some much needed confidence to do what has to be done. hoping this time next week will be over worst and recovering for next one. 

hope you continue well, let you know how it goes xx