Hi. I’m a regular poster on the tnbc secondaries thread. Sadly my wonderful mum has just been diagnosed with BC too!! Horrid disease!! She’s been told that Epirubicin is the way forward. Shes had her surgery, nd radiotherapy will be alongside the chemo. I’ve read all the Macmillan stuff but would love to hear how this chemo really is? We have lots of chemo experience (I’ve had 30 sessions now) but this one is different. Any tips? Thank you v v v v v much fr your help. I’ve tried to search old threads but it comes up with nothing.

Hugs to all

Sadie Xx Xx

Hi Sadie
Sorry to hear your family has been dealt a double bc whammy.

I am on epirubicin. Its one of the anthracycline family of drugs. It is given by injection through the cannula or port if you have one. Epirubicin is coloured red, apparently this is added dye to highlight the danger of those handling it.

Like all chemo, se’s vary for each of us. However epirubicin has a few guarantees. 1, definite hair loss, usualy starts about 12days after first dose; 2. Very high nausea effect so the chemo teams really do their best to help, if your mum can get Emend this is the best anti-nausea.

Epirubicin always gives me a sore mouth so i am vigilant with using alcohol free corsodyl 4times a day for the first week of chemo.

It is usually given with other chemo regimes, i am on FEC so get varying other se’s as well, but the ones i have told you about are directly linked to epirubicin.

As with all this stuff, the chemo teams will do their best to help us manage the se’s.

Hope that helps a bit.

Much love
Pixie xxx

Hi Sadie

Just to add to what Pixie has said, it also makes your wee red, just for a few hours. I drink copious amounts of water before (to help open up the veins) and afterwards, to help flush the horrid stuff out.
They put saline through the cannula first, steroids, and more saline whilst administering the chemo. I had a reaction to the intravenous steroids so had to have hydrocortisone.
I’ve had 4 sessions of EC and my arm is quite sore and swollen. I’m using a combination of heat and cold to lessen the swelling. The soreness does fade, but I have it on one particular point of the vein(unfortunately I only have one vein now which can be used.
I don’t wish to frighten you/your mum about the side effects, but if you’re like me, I wanted to know what they could be so I was prepared. I suppose I’m lucky in that I have had minimal se’s.

I’m also using the cold cap so I still have my hair (apparently it works best on fine hair) but when the cap is on it’s like hell!
I wish your mum minimal se’s during her treatment. You have each other - be strong.
Hugs and xxxx

Hiya Sadie

I had epirubicin for my primary BC in 2009 for 4 cycles followed by 4 of CMF… It was ok… I actually preferred the epi to the cmf… It made me feel really crap for about 3 days then a bit crap for a few days then not too bad till the next cycle… Had furry mouth but not sore. Had a funny taste and couldnt taste salt so added LOADS to food. a bit of indigestion so was prescribed omeprazole for that started with burning at the back of the throat and some reflux. Wasnt sick at all a wee bit nauseated the first few days but then felt better… I had regular domperidone 2mg four times a day and something else for break through nausea but dont think i really needed it much. My hair started to come out a bit on day 14 but was extremely painful before it came out… Felt like i was being stabbed across my scalp, was sooooo glad to be rid of it! My veins got fried and they were contemplating a hickman but managed to do it through cannula but was very painful and needed a heatpad while it was being infused… And if they do it slowly it does less damage… I really felt super tired and that was really my only problem… No mouth ulcers, no thrush, no achy joints, no breathlessness or palpitations. So i kinda felt i breezed through when i look back… However my family would disagree.

On chemo day i always went shopping with my sis after treatment as didnt feel too bad but later that night it would hit… Had my chicken curry on the friday after treatment… Yum yum!

Hope it goes well for your mum.

Love Lulu xxx

PS it makes you pee pink for a day after each cycle!

I also had Epi then CMF like Lulu and I too had much better time on the Epi than the CMF. Nausea was never too bad but I did suffer terrible mouth ulcers but chemo nurse gave me Gel Cair? which helped a lot. I also felt worse on the sat and sun after having chemo on the tues. Then was back in work on the following monday for the next 2 weeks and felt ok those 2 weeks. ( Only part time!) And like Lulu suffered with indegestion and reflux but again medication sorted it out quickly.
I am sorry to hear your mum has now been dx it really is a crappy disease and I hope she copes well with the chemo.

Jill x x

Hi. This is really helpfull. Thank you. I will pass it on… best be prepared!! It is much better to hear it from you that a list of maybes and might gets… thanks again.

Sadie Xx Xx

My wife is on EPI/CMF she has completed the first part of EPI and is now on the 2nd dose of CMF she had 4 lots of EPI every three weeks the CMF is split into two parts you have the first part via injection and a week later you go back and have the same again and also the first time you go they give you 42 tablets to be taken 3 times a day for fourteen days,4 weeks after your first dose you go back and start again this happens 4 times we are about to start number 2 next Friday (quite complicated)when you try and write it down.
The EPI (her words) was ok no bad side effects she had a drug called Emend for sickness (very expensive) and this really stopped all sickness etc make sure you ask for it. The CMF she seems tired whilst taking the pills but fine when she finishes them, she is even able to have a drink when the tablets are finished, and she has been able to work through all her Chemo usually 4 days a week and 1 working from home (her choice her company said do whatever you want)

Hi Kevinj, thx for your wife’s account. To be able to work through it is an indication of the effect it has on her. I had emend too for several of my chemos and it is magic!! I will defiantly recommend she gets some. Thx for your time posting and good luck to both of you. My mum will also have the cmf after the epi.


Sadie XxXx

Sadie i felt a bit more rubbishy on the cmf… It made me feel less poo but didnt have the up feeling afterwards like happened on epi… So for me although with the epi i felt much worse i did start to feel better again but with the cmf i just felt nafff all the time.

The CMF can be given in two lots over 4 weeks buti just had mine all in one go every three weeks like the epi… But many places give all treatment on day 1 and again on day 8 and then three weeks off.

oh oh. even the word makes me feel sick… I am going through chemo right now- just done cylcle 3 and i am dreadfully sick after it. Chemo unit cant get my anti sickness right so it is like having a vomiting bug and hangover every three weeks. I can’t even look at diluted ribena without waves of nausea coming on. x

Oh flower20, that is horrid. Have you tried emend? (aprepitant , maybe wrong spelling?).

Sadie Xx Xx

hi Sadie. No I haven’t I will ask about that thanks very much. I see your posts on other threads ans you are such a striong lady. I wish you and your mum all the strength in the world x

Hi Flower20 - what a lovely thing ton say. Thank you very much. The Emend is really expensive and you often have to make a fus…but im sure you can do that. Your level of nausea sounds horrid!! Good luck and keep us up to date. Hugs.
Sadie Xx Xx