Hello,
Even though my Oncotype was 19, but considering my tumour was quite big and multicentric, I'll be getting 4 cycles of TC chemo (Taxotere + Cyclophosphamide) every 3 weeks.
Before getting the infusion, I'll be pumped high with steroids, so the doctor said it takes a couple of days to start to feel unwell/tired, however, he couldn't really say anything else.
When are going to be my worst days in each cycle? What are your experiences?
Is there anything you'd have wished to know before?
Thank you,
Colibri
Hi Colibri,
I had this exact treatment. Having the treatment on day 1 of each cycle, I started to feel tired and achey around day 3 or 4 each time. Then was fatigued, sore and generally grotty for days 4-9 or so, then started feeling much better. I had a sore mouth too, again starting on abuot day 4. The aches were by far worst during the first cycle - they were much better in the following cycles. The tiredness did ramp up over the cycles. Cycles 1-3 I had constipation for about a week, then cycle 4 it was diaorrhea (just to mix it up).
Make sure you've got a stock of painkillers, including some codeine. Have baths if you get achey.
It was intensely rubbish but not a horrendous experience for me. I still got out and about and went for walks or to a cafe each day.
Good luck! Hopefully you'll weather the rough days ok and have lots of decent days in there too.
Thank you, Radge, for your words.
It's interesting about the pain, they never said there was going to be pain involved and painkillers aren't on the prescription card. I will ask about that though, because considering I live in the countryside and pharmacies are closed on weekends, it would be good to have it at hand.
Did you take something to ease the constipation?
How about the mouth, does the metallic taste last all through the treatment or does it go away in-between cycles for a few days?
The nurses gave me Laxido sachets for the constipation but I didn't use much, I was a bit nervous about it. If I did it again I'd just go for it - they don't cause a sudden reaction. I also made "Go" cake which did seem to help!
The mouth: I didn't get a metallic taste exactly. My tongue got sore for a few days and the skin changed, so that affected my taste. Then when it was better the food taste was hard to describe... it was as if everything tasted mostly normal but at only 50% potency and with an extra something added. It did improve in between the cycles. They gave me a mouthwash to help with the soreness but it was vile (green, aniseed flavour ), so I ditched it and rinsed my mouth with a bicarb of soda solution instead.
The pain: I think it mainly came from the filgrastim injections I took every day to stimulate neutrophil production. So the pain wasn't a direct side effect of the chemo. Will you have the filgrastim too?
It's always the way - the chemo drugs have side effects, and then you take other drugs to mitigate those side effects and those drugs have their own side effects... round and round it goes!
Writing it out like this it sounds like a lot... it is I suppose but it doesn't all come on at once and you do get used to most of it.
Thank you for your reply and sorry I only reply now, was at too many appointments.
Well, it doesn't sound too bad, actually. I was under the impression that from start to finish I'd completely lose the taste, but if it does come back even if only a little, that is a bit nicer to think about.
I won't have Filgrastim, they said it should be fine and they'd do blood tests in between cycles, but probably it wasn't going to be necessary. Who knows though, they always find something new.
Honestly, having read your description doesn't make it look alllll thaaat horrible, it could be worse, and as I always remind myself, it's just 4 times. Then it's over. :)
THANK YOU again!
Hi Colibri
I had Cyclophosphamide along with Epirubicin and my nurses in the chemo suite told me to get omeprazole or something similar that suppresses gastric acid secretions [folk with stomach ulcers and heliobacter take these] and take one every day. I did this and found that it kept my stomach feeling so good that I could eat anything I felt like.
Might be an idea to ask for some of these too.
Al the best
WallyDug
Hi Colibri
i have had 2 doses of a 4 cycle of docetaxel and cyclophosphamide. Similar to radge I have found that days 3 to 8 are the worst for me, with achy joints more from the first dose but a general feeling typical of having the flu. I also have the filgrastim injections and I don't know if they are responsible but I have really bad diarrhoea which has been even worse this second time round, so much so that I barely felt like getting out of bed, except to go to the bathroom . I was given an imodium equivalent but they didn't really help much so have felt washed out, weak and lightheaded for much of the days mentioned. From day 9 I start to feel much better.
It does seem to be different though as to how our bodies cope and what side effects we suffer so just be prepared for one or the other i.e. Constipation or Diarrhoea
Keep strong
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