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?

Hi JB,

I'm sorry I initially missed this thread.

Two years ago I was on a combination of Oxaliplatin, Crappycetibine and Epirubicin. The side effects I suffered were similar to yours. The breathing problems were exacerbated by extremely cold weather - I left the chemo clinic in a blizzard one day which was a challenge! 

The plus side is that the chemo worked and my inoperable cancers shrank by about 50%.

The only side effects I now have are that my feet often feel cold even in the warmest of weather.

Hang in there and good luck with your treatment.
Dave

Hi Davek

Thanks for the insight its always good to hear what others have gone through.  As my treatment is after surgery I have heard its successful too in the prevention of cancer coming back, well not sure entirely about that, but definitely have to stick this out.  Fantastic result you had!  Hopefully he can change something just to make it a little easier.  The stopping breathing wasn't nice hahaha

The feet were an issue first time round but manageable, this second time it was bad on the feet but worse on the hands, 9 days of the 14 day cycle (tablets) I suffered.  I sure hope something else can be done especially if it gets worse.  How did you find your 3rd treatment and how many did you have?  I start 3rd next week and doing 8 in total.

LOL at crappycetibine - I thought it was the Oxicrappy doing it to me

Thanks so much for responding

JB

Hi JB,

I had four x three week cycles on the EOX regime, 12 weeks in total. Epirubicine and Oxaliplatin by intravenous infusion every three weeks and continuous Capecetibine for the entire period.   

My understanding is that post operative chemo is designed to nuke any small growths that might have been too small to show up on a CT or MRI scan and to nip in the bud any new metastases.

I was very lucky so far as the side effectcs were concerned, though they were accumulative with the tiredness increasing with each successive cycle. I think that's why most people get a week off tha Capecetibine, to give their body time to recover. My case was slightly different as I was well into stage 4 before I was diagnosed and, of course, everyone reacts differently to chemo as our bodies are all different and the drugs we're given varies greatly.

Good luck with your treatment, it really is worth persevering :-)
Dave  

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 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