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

This is my second attempt to write a post. I was diagnosed with bowel cancer last year. I had the operation to have the tumour removed and was offered chemo. I took the choice of capecitabine and oxyplatin not sure if I spelt that right. I suffered side effects straight away after first infusion, I lost my peripheral vision and my eyes swelled up, totally weird experience. I was able to leave after I saw a doctor, and waited for swelling to go down. Even though I wrapped up well after I left the hospital ie fleece gloves on, hotties I use for when I play golf, scarf wrapped round my face duvet coat on with hood up, the tingling started straight away. It was so bad sitting on the toilet seat I bought fleecey toilet seat covers. Bliss!!!  The cold weather didn't help every time I went out I suffered badly with tingling hands, my ears and nose also tingled. They did say it shouldn't last long, but am afraid it did. I was unable to go into the fridge or freezer, couldn't put my hands in cold water, I felt quite useless. I think after 2 sessions they reduced the dose and I had 3 more sessions, I was told by my oncologist that I probably had the best effects of that medication, I did however stay on the capecitabine and finished the course of treatment in July. I have nerve damage in my fingers and feet, I have been told that it could get better or it might not. Since coming off the treatment I have noticed that my fingers seem to be getting better, but different days and the weather brings different feelings, but it is a small price to pay. Not sure if this helps you, but it would be nice to hear how you JB and mouse are getting on

Hi all

sorry for such late rsponse/no communication.... have been really busy with work and just so tired when I come home the best I do is cook, eat, shower and fall into bed.  I am just about to finish my 5th cycle of Oxiplatine and capetabine combo.... I really have had enough now and hoping I can finish the course with just the capetabine tablets, 3 to go :(  I too have all those symtoms not nice and worried about my hands and feet so hopefully I have done enough for the oncologist to say enough is enough. In the meantime I keep on keeping on, concentrating on just getting through this and finally try get back to my normal life.... toilet seat cover is the way to go warmth is even needed there for me too, its like a thousands needles pricking me if I sit on a bare seat hahaha really struggling with tears.... I cry for no reason but that might be because I also had a total hysterectomy - sometimes life sucks hey.  Hope everyone is well otherwise and sending big virtual hugs and hope to chat again soon

Again apologies I been quiet

Big love

JB

Hi JB, 

nice to hear from you, how are you doing? Have you managed to come off the oxyplatin? I can say I know how you feel, being through it myself. This colder weather won't be helping, I used to feel my nose was going to drop off when I went out, I also remember my face would freeze when going into shops or a warm place felt like Quasimodo once so severe was the reaction, things you remember. 

I have my first nurse led clinic tomorrow, no idea what to expect other than getting a blood test done, will let you know how it goes.

Look after yourself, wrap up warm

Love

Anne

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

Hi, I had this treatment, was supposed to have 4 but only had 2.  It was the worst thing ever, nearly fell backwards down the stairs because my muscles would go into spasm. It affected my eyesight and my mouth used to droop on one side like a stroke.  Hands were bad and don't get cold, keep warm. I made the decision to stop,  thought I was having a stroke or heart attack on the second one so nurse stopped it. Still not sure I'd I did the right thing but have done it now. Only time will tell. My surgeon said he had got all the cancer out so that influenced me as well.  Good luck with whatever you decide.