5FU side effects

Hi Beatrice,
I'm sorry you are not going so well with the 5FU. I had 5FU along with Oxalyplatin and avastin for Bowel cancer. The Oxaly was the nasty one for me, I actually had an anafalactic reaction to it so had to have phenergan and hydraquartizone before each treatment. That just drugged me out that I slept the entire 5 hrs of infusion and then all the way home in the car...a 2hr trip!.
What cancer are you having the 5FU for? What side affects are you having? And how frequent are your treatments? Do you have it in a portable pump? (I had mine over 46hrs in a portable pump).
Anyway, would like to try and help you more if you let us know what the side affects are that you are having.
Cheers
Mihalo

I had 30 weeks of 5FU. I had injections every week, though they could have put in a PICC line in. If your veins look OK, they go that way.

I took the day and the day after to rest and relax. Went to bed, drank lots of water or other drinks as I felt like it.

The nausea wasn't all that bad. But I did feel tired. I tried to go to work, but it was a different job and I had to commute a long way, so bailed out. If it had been my regular job, only 3 days a week, I could have coped. Though I would have been very tired all the same.

With all chemotherapy, they are poisoning your cancer cells. It poisons some of your other cells as well, so you need to rest to throw off the poison. If rest is inevitable why not lie back and enjoy it. Peel me a grape!

My eyes watered a lot when I went out on my half hour walk, every day, and I bathed them night and morning with spring water on a cotton pad (turned over for the second eye).

The nausea was bad for a couple of weeks, but that was probably because of my haphazard management of hot/cold coffee on Chemo days.

I don't know anyone who has breezed through. The staff in the Cancer centre say that some people go straight to work afterwards, but I have never met anyone who does. It probably doesn't do them much good if they do.

It will end eventually. Then you have the long convalescence which you don't need to rush. If you feel depressed then, it is perfectly normal sooner or later. That too will pass.

Keep in the loop.

Best wishes

Ruth

My husband was on the 5FU for 5 days of the week plus Cisplatin and docetaxel aswell. He was so tired and could barely lift his head off the pillow and slept for days he tryed everything to motivate himself but couldn't. He got two cycles of the pump into him but they cant give the pump anymore as he was getting bad chest pains everytime he sat up his chest would hurt and couldn't breath. The doctor had to stop it as it was to much on him. He was told that he would feel very tired with the pump so maybe some patients can tolerate it and some cannot. I wish you best of luck with youre treatment and keep strong. Big Hugs Pink.xxxxxx

Hi Ruth,

Thanks so much for you input. We're trying seasickness wrist bands which help somewhat with the nausea but I'm interested to hear more about the hot/cold coffee. How did this help/hinder?

There's no way that work is on option just yet. The tiredness is too strong - might try the 'peel me a grape' line though!

How long did the recouperation bit last for you? The medics tell us that 2 - 4 weeks after the last dose should see us able to get away for a break. Warm sun and sea would be lovely just before Christmas (sorry to use that word in the height of the summer) but is that just a remote dream?

How are things going with you now?

Hope you have now put it all behind you and are moving on.

Cheers
B

Hi Pink,
Compared with your troubles, we are having it easy. Perhaps this is what the medics mean when they say that some patients 'breeze' through it!

We wish you all the very best.
Keep smiling
B

I wasn't on 5FU, only Cisplatin, and suffered terrible fatigue and quite strong nausea. Yes, recognise that hardly lifting head off the pillow, and I found getting up every day to be in time for the taxi to take me for radiotherapy was about as much as I could manage. I am NOT one of those people who breezed through! I found however that to a certain extent the effects, certainly of the acute tiredness, wore off after a few weeks. Wishing Beatrice, and anyone else still on chemo, the very best wishes. Lots of love xxxx Penny

Hi Mihalo,
You are certainly going through heaps more than we are and we wish you all the very best and strength to cope with the treatment.

The tiredness is the thing that really gets us, the nausea is managable. In the beginning things got back on an even keel by midweek and we could cope with that but now the symptoms last all week, right through to the next session so there is no let up. Still, only another 16 weeks to go!

Chemo is hard work, maybe that's all there is to it! Struggle on guys, with a smile!
Cheers
B

I am a bit of a coffee addict, so although sometimes I used to be able to drink my black coffee cold, ever since my op, it doesn't seem to have agreed with me. It makes me sick. But a couple of hot black coffees before chemo seemed to help. I would not eat breakfast, but if I found a ripe strawberry on the patio strawberry pot, it wouldn't harm.

I arrived very early the first day, and went down to the cafe and had a bacon sandwich. This did not seem to agree with my first dose, so I left off breakfast until I got back. If I had a hot coffee and breakfast, I would still go to bed or relax and read first for an hour, and I would feel OK, but tired, so would sleep as much as I wanted. The following day, I would get up, take the dog for a half hour walk, then have breakfast and go to bed. Then sleep as much as I wanted that day too.

I have been to all day workshops on public participation on health, but not on successive days. I have gone to all my evening meetings, sometimes 3 in a week, but most weeks none. I have been (from Birmingham) to London, guided tour round Westminster and back on the coach - a 12 hour day, and fallen into bed and slept 12 hours.

A week after my chemo ended, I drove to Caernarfon one day, walked and climbed the castle, then walked to and round Segontium (a mile away) the next. Then drove back the following day.

I have a job interview on Friday, then a couple of concerts in Worcester the same day.

I can keep up with the housework after a fashion. But haven't been able to spring clean.

I think I am up to a day's (secretarial)work but will need a day to rest afterwards, so will try and start on a 3 day week, and expand it to full time over about a month. If they offer it to me. (I could probably do a week at 3 days, another at 4 days, and full time after that, but my husband would be very cross if I agreed to it. I haven't told him about the interview yet.)

When I said, peel me a grape, it was pretty shocking of me. Save such requests for guests, not for your daily slave. You should be able to have a great holiday as long as you relax. Just don't be surprised if you need to sleep a couple of hours a day. I walk for half an hour every morning, and rest for most of the day. If I get the urge to do some washing, I do it.

I think a compromise of 2 hours sleep/rest every day, and a daily walk is enough to let you do everything you need or want to do. Your body needs to work at getting better. You need to drink a lot, to help flush out the poison. Check your pee. If it is pale yellow, don't worry, you've got it about right. If it is dark, drink more fluid (good advice from an ex kidney patient).

You shouldn't feel too bad. Always have the anti emetics handy, but don't take them unless you feel sick for more than say 5 minutes. I had two weeks when I felt really ill, but only in those two days of 1) chemo and 2) day after. As I said, I always felt sick at the Cancer centre, and didn't bother to take them then. Domperidol didn't really work for me, so if it is the same for you, tell them and they will give you something else.

Just rest, and let the stuff work through you. It's your chance to skive. Make the most of it.

love

Ruth

Hi Ruth,

I've tried to send this many times now but there seems to be some problem either with our internet connection or this sites one. Hope this works!

How did things go yesterday? We thought about you and hoped it all went well.

We've been reading anything that we can get hold of on diet and lifestyle and have come to the conclusion that 'a little of what you fancy does you good'. It feels better than struggling to find the 'right' balance, which it appears that no-one has yet found!

We had a really bad week at the end of July, so much so that the nurses and consultant decided not to give the chemo last Monday. They had a long chat with us and also decided to reduce the dose. So last week was great. A holiday from chemo! Energy levels came back to some degree, which was wonderful. With increased energy came oodles of positivity and best of all the strength to buckle down and get on with the rest of the course.

The session this Monday was OK. Energy levels yesterday and today seem pretty well along the lines that you descibe, which is n-times better than previously. Our medics have been so helfpul and supportive. Hope yours are too.

You and the others on this site have been so helpful to us - BIG THANKS to all. Is there anything that we can do to help you???

Keep smiling,
B