I thought I would give you all my account of my chemo journey, now that I have just finished it. I can’t truthfully say it has been a good experience but I have got through it and out the other side and want to let the ladies who are having to go through it at the moment that no matter how good or bad it is, it always comes to an end at some point and is worth doing.
My side effects were no picnic and there were times when I really thought I could take no more. I had to force myself to go for my 6th FEC. The one thing I kept telling myself was that this was the last one. I am a stubborn person at the best of times so didn’t want to think I had ‘given up’ on it. These side effects included:
•Sickness – bad for the first week of FEC1 but given Emend and Cyclizine for further chemos, which helped enormously.
•Nausea – again for the first week of each chemo but steroids really helped.
•Gastric discomfort – I have a hiatus hernia, which didn’t help but had Mucogel, which coated the tubes and really helped to calm down the pain.
•Constipation – mainly caused by the steroids, so went off after the first week.
•Diarrhoea – Caused by the Filgrastim, given for neutropenia every time since FEC2.
•Frequent hot flushes – have had hot flushes since menopause but made a lot worse by the chemo.
•Breathlessness – got worse with each chemo session but eased off by week three.
•Fatigue – builds up during the course of the chemo. Overwhelming at times but better by week three each time.
•Bone pain (again, from the Filgrastim injections)
•Mouth problems – horrible coating built up but prescribed antiseptic mouthwash, which helped. Baby soft toothbrush and frequent brushing also helped.
•Taste alterations – couldn’t taste salt and food began t to taste like paper. Found sweet tastes better than savoury.
•Daytime drowsiness – could fall asleep at the drop of a hat. Found my eyes closing frequently during first weeks. I think it might have been the Cyclizine.
•Insomnia – when taking the steroids, couldn’t sleep most nights. Found the radio a God Send. Radio 4 Extra and TalkSport were my friends.
•Vein damage – Damaged on FEC2. Given Hickman line, which made everything so much easier.
•Hickman line infection (septicaemia). This happened during FEC6 and I ended up in hospital with IV antibiotics for three days.
•Hair loss (completely bald over all of my head and body) – Bald as a coot is not a good look! Now I have a head full of bum fluff. Looking forward to being able to use a brush again soon.
•Weight gain. (even minus one boob!) This was probably from all the sweet stuff I ate. Comfort food and sweets got me through a lot. Decided to cut down on all of them now and gently take off the weight over a period of time. Hopefully the swimming and exercise will help with this.
This isn’t to say that you other ladies will have all of these or even any of them, we are all different and hopefully you will have a much better time of it. Of course there will be some that have as bad, if not worse but we have to keep an eye on why we are all doing this and the advantages it will give us.
On the good side, I have found out what a gem my OH is! He is a big softy and I wasn’t sure he could take the flack and be my rock. He has been that - and much more. He has taken everything in his stride and come up trumps. I love him to bits and thank him so much for his strength and love. Also, my youngest son has been wonderful. He has travelled across the country to come to be with me after my chemo for that first awful week. He has cooked my meals and even hoovered and done the washing. When I was hospitalised during my septicaemia episode, he stayed with me every day, as OH had to work. I am so proud of him. It is his 25th birthday tomorrow and he will most certainly get a brill pressy.
I had my last Filgrastim injection yesterday and today I took all my medications and potions back to the Pharmacy. I have cleared every reminder of the chemo from the house and I feel wonderful! Time passes and even bad times have to end. Hopefully, all I can do now is get better and better. I intend to start swimming again and taking frequent walks. My garden has been neglected this summer but I have lots of ideas for how to improve it. I have made an appointment with my GP for tomorrow, to talk about the Anastrozole tablets I will be taking for the next five years. I hope I can get her ‘on side’ so that she can help with any problems that crop up in future.
Well ladies, I hope this hasn’t worried you too much but I have always thought that the truth was better than ‘gentle lies’ and that once armed with knowledge, you are better equipped to face whatever comes along. Good luck to you all and may all your side effects be little ones!
Thanks for that, I see the oncologist tomorrow, to find out what treatment I need. My surgery was in July. I had a lumpectomy. The results were good, not in the nodes but am HER2 positive with an NPI of 4.34. I am trying to be positive but it is hard and if I have to say to one more person who asks how I am that I am fine I may have to hit them!!
Your record of your treatment was great as it was honest and also positive.
Onwards!!
a note to the new members of this forum looking for advice :-
it isn’t all like this, please ask others for advice and remember that everyone is different. my experiance of chemo was no where as horrifying as this, and most of us may have had a rough couple of days and are doing fine now.
Like elttiks my experience was nowhere near this horrid - amazingly I still have officially ‘lovely veins’ after six rounds of chemo (FECx3 , Tx3)and some FEC damage which recovered. Everyone is unique and so their epxerience will be unique. The most important thing is to tell your BCN or oncologist of any side effects and they can help manage them. Check the leaflets available on here too, they are really helpful.
can any body tell me when its a good time to have any dental work done,.whent to dentist before the chemo started.cheecked teeeth said would be fine as long as flossed and used mouthwash,.which i have been doing.now think i might have a ulcer on my gum cant see said dentist for 2 wks.told her doing chemo but said was fully booked !!! .think it`s ok to take paracetmol+ bonjela.wanted to know anybody in same boat xx
Unless it’s an absolute emergency, no dental work during chemo.
Cordosyl mouthwash (available in most chemists/big supermarkets) treats mouth ulcers and I used it as a preventative during chemo - didn’t get one.
I echo RevCat and Elttiks - my chemo experience (FEC-T) was not as horrid as this. I even managed to carry on working more often than not during chemo.
Every person is different - and often the SEs alter slightly with each cycle. You can have a really rough one, but the next not be so bad.
Just remember it circulating round and killing off any stray nasties and it makes it all worthwhile!
Dx
I hope I didn’t upset any of you with this thread! That was the last thing I intended. As I said in my post, this was MY experience and others may or may not have all or ANY of these side effects. My intention was to tell you what I went through in a factual way. Of course there will be many of you who have not had anywhere near the same side effects as me but if you are too positive with your accounts, it comes as a bit of a shock when you find things happening to you that you never expected. Also my intention was to say that no matter whether the experience is good or bad, it comes to an end. Mine is now finished and I feel so good that I managed to finish it and will now go on to be healthier.
QfD: I was told that I should not have any interventive treatment from a dentist while I was going through chemo. I only went today to make an appointment with them for September, as I had to cancel a check up in July.
Hi 50 something, well you didn’t upset me anyway - I think it’s good you felt able to share your experience. My BCN warned me about nearly all of these before I began, so maybe I was “lucky” that I was forewarned. I think it’s a tricky balance - but your honest sharing along with a few of our thoughts is maybe OK? I hope you don’t feel we belittled your experiences either.
The main thing is that however horrid it is, we know it gives us the best prospects and that’s what gets us through.
Well done for finishing Sue - i Have just finished my chemo 6 x Fec and i think i too had nearly all the side effects that you listed - not nice.
All the best for the future
Mel xx
Hi 50something, as someone who has yet to have chemo (don’t yet know date as awaiting results of surgery first) i like to be fully informed of everything so i found ur post really useful. I think it is better to be forewarned of what SE’s u may get rather than thinking it’s going to be a breeze, at least then u may have some idea of how to deal with them as well. I feel better prepared that way to be able to cope with it all. Of course it worries the life out of me, it’s a frightening path to go down but when i start chemo i’ll probably be re-reading the chemo threads again. Great news that you’ve finished & thanks for posting.
elttiks,Revcat & Dj007 it’s also great to hear that u didn’t have the same experience, thanks for that ladies,it’s nice to hear it from both sides.
Good luck with ur treatment f in limbo x
Had 8 lots of chemo - 4 FEC and 4 Tax. My own experience was that I’ve managed to carry on working and enjoying life almost all the way through the experience. I’ve certainly had side effects, but there’s only been two days when I’ve been unable to get to work. Got more tired towards the end and I’ve had fairly interesting digestive troubles on this last couple of TAX sessions (and some heart racing issues too) but it’s all been doable. It’s such a very variable thing.
Ann x
thanks for good wishes, been to a support group today, met some lovely ladies who were just having a jolly social time! no support as ‘they don’t talk about cancer!’ thankful that I found this forum as I was feeling very alone.
I need to read all the posts good and bad so I have an idea what may be coming.
Thanks F
