Raw Advice

Hi All

I am starting chemo on Friday. I have looked through lots of posts inc the “Starting chemo in XXX” ones to try and get some advice on dealing with side effects. Trouble is, amongst the really useful advice there is lots of other info, so it’s hard for us new sufferers to extract the Raw Advice we need. I feel overwhelmed ploughing through the posts to pick out the gems of info that might help in the coming, scary weeks.

I have looked at the Top Tips but it does not cover all side effects.

Is anyone who is a little ahead of us May starters prepared to use this new thread to post JUST side effect advice to help us?

I would really appreciate it.



Chemo affects everyone differently, no one knows how they will react, feel or which side effects they may or may not get. It’s very individual to say the least and whilst some tips are helpful to some, they may not help others. Your chemo team should give you information on how to prepare for chemo day in your unit and how to get in touch with them if you feel unwell as they know your medical circumstances. I received a little booklet with phone numbers and symptoms of neutropenia, incl a record keeping section to note down symptoms, medication taken so you can discuss any problems with your team before your next session. It’s a good idea to have a thermometer at home.
Good luck. x

ok, I would say nausea and tiredness are the most common side effect.

You can expect and anit-nausea drip before chemo and to take home some anti-emetics (sickness). Take them in the mornings, even if you dont feel sick as they are preventative drugs. if they dont work, call your chemo ward, or the out-of-hours no. they give you.

You’ll need to give yourself time to sleep off the tiredness. So plan to be at home resting for the at least a couple of days. Sip Lucozade id it helps.

Sore mouth: Corsodyl mouthwash or salt water mouthwash. If these do not work, go to your GP and get a prescription for something stronger. (I dont know whether the chemo unit or you GP will act faster regarding precriptions)

Constipation: some get it, some dont. However, ding plenty of fluids after chemo, to flush out the drugs, fruit juices are good too. Eat fibre. If these measures don’t help, over the counter laxatives might do the trick. if not, go to your GP.

Bladder irritation: cranberry juice is the natural remedy however, if you’re in pain or running a temperature, call your chemo ward ASAP or go to A&E. Infecttions can turn nasty when your immnue system is comprmised by chemo. Tell AA&E staff you are having chemo and a doctor or nurse will see you you straight away. While you’re on chemo you shouldd NEVER have to wait to be seen in A&E

Metallic/bitter taste in mouth: pineapple juice

Acne: Mo oncologist’s advice was anticaterial face wash from the chemist

That’s off the top of my head, anyone else?

Hi Mary,

First of all, let me wish u luck for Friday, it is true, the waiting part is horrid because it is the fear of unknown, but once u get on that horse u start to feel u can gain some emotional control.
I had my first Fec on the 24th April, so my experiences are based on my first infusion.
Anti sickness drugs made me constipated, I was able to wean off them by day 6, but I did need them in those first few days as the nausea was awful, so I dread to think what would have happened without them!
Steroids made me blow up to a 6 months pregnant looking woman, and the farts were amazing! Lol they also made me feel a bit out of it and battle some with my self, as the chemo made me tired but the steroids made me restless, so I kinda felt like I didn’t know if I was coming or going that was only for the first three days though. After that BOOM! The side effects hit hard and most debilitating thing for me was the fatigue, oh my gosh, I spent 4 days in bed and slept most of it! Fatigue sounds like such a pansy word and we should invent a better one, cus the complete lack of energy as almost indescribable, I was that tired I couldn’t even read or watch a movie cus I was tired for even that! By day 10 the fatigued subsided to a manageable level, and by day 14, completely back to normal!
Taste and smells went for first 10 days too. Everything smelt too strong or just nauseating, couldn’t taste anything properly, so food had to become plain and simple for a while.
My only side effect at the minute is the onslaught of the dreaded hairless.
In my first experience , the first 10 days are tough, but I got my mojo back after that.
As already mentioned, remember , everyone will respond differently.
Ohh, and I had my first side effect during infusion, apparently it’s a new reaction cus there has been a slight change in the chemical make up in one of the chemo drugs ( can’t remember it’s name, but it wasn’t the pink one) I was told my chemo nurse that me and one other lady had responded in exactly the same way. The side effect was: feeling absolutely peed out ur head and having the most uncontrollable laughter! This lasted for forty minutes! I had never laughed so much in my life, so, as horrid as some side effects can be, this latter one I could definitely live with, to come out of my first infusion laughing, isn’t a bad way to start. Xxxx

Gadget Girl - I have been away for a couple of weeks since your post but wanted to thank you. It was exactly what I was looking for, and very relevant to my actual experience.

Fazo - Thanks to you too. I am on day 8 and have not been out of bed for more than 4 hours until today. I didn’t realise (till they told me at the hospital today) that coming off the 3-day steroid dose makes you fall off a cliff re tiredness and nausea. I expected to get a bit better every day so was surpised to feel worse on day 5-7. They have prescribed me 2 more days of steroids for today and tomorrow (which is why I am posting comments at 11:30 at night!) and even though I am sure they are bad for you I will welcome a couple of days’ break. Then it will be day 10 and perhaps I will get more normal, as you did.
Tina - thanks for your comments and you are right - they did give me the booklets, phone numbers etc and the standard advice about how to prepare. Setting up this “raw advice” stream was me asking for short, sharp input from people just ahead of me who are experiencing it right now, even if I don’t get all the SEs they did
Then I go and ruin it with a rambling message. Hey ho - blame the steroids!