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