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

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

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

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

morning,sorry early i know but cant sleep, not through worry just wide awake. well had second treatment today and so far so good.

dose of oxiwotsit lowered and has made things more manageable, walking much easier and tingling in hands better, so far......as know last time it was few days in it all went a bit pear shaped! so far just about keeping nausea under control but think other end starting to party which might scupper my plans for getting out for a walk tomorow. hoping things continue better as the whole thing of going back for another treatment after last time was becoming a bit of a thing so its really helped to have got it done and for it to so far be going more smoothly.

how are you doing? hoping things as ok as they can be and youve not had too rough a time of it.

keep me posted and take care xx

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