By dk

This post was in response to a question about FEC chemotherapy :

Sorry you've got to go through chemo. It must be so hard as you are being told different things to that when you were first diagnosed and I'm not sure if you know your Her2 status yet.
it's very scary going for chemo as you read all these stories and you don't know what to expect. It's usually not as bad as you think but often it's the odd things that happen to your body that scare you or are hard to put up with.

I think my post sounds a bit scary but this is my own personal experience of FEC chemo and I had 6 of them as I was on a trial at the time in 2005. I'm also not sure reading through if all these points were covered but give it a read. I always write long posts so grab a coffee first. Forewarned is forearmed as they say!!

FEC is made up of 3 things.

The F is 5-FU and is used in bowel cancer as well as bc so effects the bowels - put it this way - it gave me the most foulest smelling wind ever and used to get constipated for first few days and then get diarhhoea for a few days and then was fine. I found it gave me a stuffed up feeling in my nose as it was going in and made me feel quite light headed as well.

The E is epirubicin and is bright red and gives you red wee for a few hours!! It also is the one that can make your vein sore where it goes in and using a heat pad often helps but can make your arm hurt for a few days or even weeks for some people after.

The C is for cyclophosphomide. This can irritate your bladder for a few days so make sure you drink plenty as it gives a sort of cystitis. I was one of the really unlucky ones where it was a real problem for me and had to have another infusion to counteract that side effect but it worked and so just made the infusion time longer.

I couldn't bear the thought of the cold cap and lost my hair 3- 4 weeks after the first dose and shaved it off as I couldn't cope with it falling out all over the place. It was summer and used scarves. Since then I've lost my hair a further 2 times and wore a lot of hats the second time and this time I've worn wigs and hats!!!

The odd thing and what I wasn't warned about was when your hair starts to fall out, it makes it feel as if someone is sticking pins in your scalp and I can remember wondering how I was going to put my head on the pillow!!

The very first time with FEC, I felt very disorientated and the floor and the ceiling was moving. When I told the oncologist the next visit, he said it was a reaction to the antisickness tablets I'd had so the second time i had a different sort and was fine and they worked better as i didn't feel nauseated at all.

It is probably a good idea to keep a symptom diary eg if you are feeling sick or have problems with bowels, bladder, pains etc so when you go back you can tell the onc what happened and they can change things like anti-sickness tablets so you don't have the same problem again.

They usually give you a help number to ring after you've had your chemo and do ring them, even if you think it sounds strange or petty as it is always better to have it checked out and they would rather you phoned than leave it and become very ill.

I know at the beginning of the thread it talked about death and chemo and it upset you and others but I feel I should say the following as they will say it to you anyway when you sign your consent form and that is if you get any signs of infection like a high temperature, flu feelings then you must contact the chemo unit helpline as chemo makes you lose your immunity and ability to fight infection and the deaths they have had at my hospital were when women ignored the signs of infection and became overwhelmed by it so phone even if you feel it is trivial as then they can give you the right treatment and you'll be fine but ignore signs of infection and you can become very ill very quickly and so it is best to be safe than sorry.

I used to get very tired and found I developed a very short temper - I'd never understood the expression of having 'a red mist descending' but by the end of FEC we all did in my family and friends!!

I used to get a sore mouth and used difflam mouthwash but different units use different mouthwashes.

I also found my taste altered and some foods and especially alcohol and tea tasted very odd.

It was doable but everybody's experience is different and we all cope in different ways but the important thing is if you have any concerns, even if you think it is trivial is to phone your help line and do post here. Remember, we're not medical experts but can give you tips and advice about our own experiences and will probably all say at the end to phone your helpline just to make sure!!!!

D
I would add one thing and that too has probably been said elsewhere. Make sure you have a soft toothbrush.