Hi,
I’m startng my first day of epirubicin today, feeling quite anxious about how it will go, would be great to hear from anyone who’s been thru this or going thru it now…
Thanks
Kathy
Hi Tresillick, hope your first dose of Epirubicin went ok. I started my chemo end of December, same regime as you. Have got through my 4 epi and had my first CMF yesterday. Still going strong. Have a look at all the general posts about what people find helpful. The strong antisickness medication given for three days after the chemo treatments causes constipation and its important to get on top of that, so if you cant get relief with over the counter remedies get your GP on the case early on, you will be much more comfortable. I found it best to take the steroid and antisickness tabs early so as to get the night time dose in early, say seven am and seven pm. So as the steroids have to be taken with food I kept ginger nuts by the bed, woke early had a quick nibble and the drugs and water, then tried to sleep a little longer while they kicked in. My husband said it was like living with a hamster, all that crunching in bed, but it saved having to get up!! I have had some heartburn and mouth ulcers too its just a case of treating each ailment as it comes along. But on the plus side I’ve found on the Epirubicin having mapped out the first month I could anticipate that the week before returning for next treatment would be a good week when I could eat and drink and socialize (subject to an early bed time!) so was able to maintain some sort of social life. And rarely bed bound for a whole day, once only up to now. Fresh air really helps me and sucking fruity sweets helps me with the nausea. Good luck with it all and keep us informed as to how you get on. The CMF is supposed to be more constant for side effects but lower key, so hoping to get through that ok too. Its day two today and not feeling too bad, managed a good brekkie this morning and some housework mores the pity 
My hair fell out quite soon on the Epi. Get a good wig or bandanas as they will be your lifeline for a long time. I bought a long blonde one similar to my original hair, but have found it tangles like mad and have also bought a shorter auburn one, which is a real change for me and lots easier to brush and manage. So I ring the changes depending on where I’m going but rarely wear the long one unless I’m going out as its getting quite tatty at the back already. Not so much Pammie Anderson, more Waynetta slob if I’m not careful!
good luck with it all and ever onwards.
We will all get there.
I start my radiotherapy on 7th April, so bring it on. I will be thinking of you and hope you progress well.
love Carol.
hi ladies ,i was told to take the last steriod around 4pm ,did that last night and slept from 10pm till 8.30 am dont feel sick at all ,just dry mouth and heartburn ,had my first chemo on thursday ,how long does it take for your hair to fall out then ?xmargaret
i had epi-cmf last year… wasnt too bad at all didnt get much nausea… got some indigestion/reflux, constipation, dry gritty eyes and nose, and vein damage from the epi… and pink pee!
my hair started to fall out on day 14 (from my lady garden first of all) and by day 17 it was coming out in clumps.
the epi had a more noticable dip and then you feel a bit better in between but with the cmf i just felt a bit lousy all the way through after id had the first dose of it… i took a severe reaction to the cmf with pains up my face usually its just a wee bit of a tingling sensation like your going to sneeze.
altogether the whole thing wasnt anywhere near as bad as i had imagined it would be.
i got funny tastes in my mouth and found fruit jellies and fizzy juice helpful… went right off some things… like minstrels which tasted like stones and fruit which tasted like perfume also couldnt taste salt so oversalted everything.
good luck hope you dont find it too bad.
Lxx
Hi Kathy
I had E/CMF at the end of 08 beginning of 09. I had some nausea with the Epi along with heartburn and constipation. I found the CMF was so much easier with less side effects. Just remember that we are all different so you may not get the same side effects as the rest of us. I found that keeping a record of my side effects and how long they lasted was useful for the reviews that I had prior to the next treatment. It meant that if any additional drugs were needed to counteract the side effects I had them prescribed and ready to take home with me. I had definite taste changes and went right off chocolate and alcohol. I had less appetite on the Epi but this improved on the CMF (I lost a stone throughout my treatment). My hair started to fall out after the first treatment but started to grow again once I was on CMF. It took about 4/5 months to grow to a stage where I could go without my wigs.
I hope everything goes well for you.
Jennie x
Hi all
I had epi/cmf in 2007. I had a vomiting with the first 2 epi then they gave me different sickness meds (odansatron melts) and it settled down, sometimes I felt a bit sick. I had taste change but found ginger beer helped. My hair fell out on the 16th day after my first chemo. I felt better with the cmf and by that time my hair had started to grow again which made me feel better. I hated the wig I just wore hats and caps. I had gritty eyes and some bladder irritation with the cmf. Looking back now it wasn’t too bad. Just waiting on word for my tram flap reconstruction now. Another step along the path to normality!
Take care and my love to anyone going through chemo. Hopefully you will look back like me and say “did I really do that”
Carolyn x
Hi Kathy, just wondering how you went on with your first epirubicin as you havent been back on yet? Anyway hope you are surviving and not too bad and thinking about you. Chin up to us all and lets keep going (as if we have a choice )
I am five days post my first CMF and not too bad but queasy and tired. Have forced down a nutritious bowl of chocolate weetos (well, its all I fancy!!) but it was with skimmed milk so thats all right then!!!
On the question of hair loss which you mentioned I lost mine round about day 14, or should I say it was dropping out in handfuls and my husband shaved it for me. Felt better taking control as one or two of the other girls have said. Also it was starting to leave a trail where ever I went so it was time to go. Had a good old cry just before it was shaved off, but havent done so since.
Take care, let us know how you go when you feel up to it.
love Carol x
Oh thank you so much to everyone for your comments, ive found that there are less of us Epi-CMF gals on this site so its wonderful to hear from you.
First lot has happened and i managed to stand the cold cap, there was a lovely woman sat next to me on her 4th and final cap for Epi and a full head of hair, she talked me thru it until it went numb after about 10/15 mins, then its bearable…worth a try!
Just feeling sicky and tired and sleep is very elusive, weird when you feel so weary !
Definate taste changes, craving mango and ginger beer, still wont hurt to lose a few pounds!
Thanks so much to you all and all the best wishes in the world xx
Ah bless so glad you are managing reasonably well. I was never offered the cold cap, really hope it works for you Kathy! Good luck with it all and do keep in touch from time to time. I am struggling a bit with the CMF, think its the cyclophosphamide tablets rather than the injection, as didnt feel too bad this morning, then took some and have only managed a ginger biscuit yet today but am going to try some toast now as, bizarrely, usually feel a bit better when I’ve eaten!! Yes I think we are a bit thin on the ground on this regime compared to some - whereabouts are you based - I’m in Warrington.
So far as being wide awake and weary is concerned I usually struggled a little when on the steroids for the three days whatever time I took them, then “came down” a little after that. I have Piriton antihistamines for hayfever symptoms and they make me drowsy. So even tho its out of season I have sometimes taken one of those just to get me off to sleep. Perhaps you could ask if that would be an ok thing to do, as theyre available over the counter and cheap. Dont do it without checking tho, would hate to poison you!! and dont buy the modern “non drowsy” ones lol!! I think we just have to be creative to find what works for us - we’re all different. But be careful too and dont try anything without checking with the experts.
love Carol.
Hi,
good luck with your treatment. I had epi/cmf on the Tact2 trial in 2008. I used the cold cap for just the 4 epis and never had to wear a wig. I had dyed and had my hair cut several times before I finished chemo, which for me was a really important thing as not confident to go back to teaching secondary kids with a wig on. I did get a bald patch and thinning but the patch filled in really quickly and I covered it with big stretchy hairbands. I was not sick and did not even feel sick on this regime and no mouth ulcers at all. I did have a dry and sore mouth and had to take hundreds of thrush tablets for my stomach acid but nothing too nasty. Hope you get on really well. The second part of the treatment was much milder but hung around longer for me too. Then I realised that the tablets they gave me were making me worse and started dropping them off gradually. Steroids made my eyes blur and the focus go for a few days. It drags on a bit as cmf went to 4 weekly and had 2 doses in each month. I was worried about going twice but my neuts went really high on this part and seemed to like it for some mad reason. I also got the most perfect complexion on it and lost wrinkles and most of my grey hairs. My new hair is twice as thick and curly. A bit of an unexpected bonus but very welcome.
Take care everyone
Lily x
Hi Margaret, I have to have 6xFEC and have had number one, next one is friday. My scalp is very tender/sore and this morning, day 15 my hairbrush was full of loose hair I expect it to come out very rapidly now…
Take care
Anne x
I have had 2 Epi’s. Side effects have been manageable so far - no actual sickness just nausea and tiredness. But I go out for a walk most days and really find this and the fresh air help me.
I got a lovely collection of hats/scarves/bandanas etc which I wear much more than my wig, although I amtrying the wig today for a change.
Has anyone had tenderness in the mid-forearm? The nurse had troubel finding a vein and I have a feeling the tenderness is up the vein from where she was poking about. (She had to use a different one eventually) The arm is tender now but the chemo was 2 weeks ago.
I’ve just posted on the thread I started in Feb about anyone being on E-CMF!
Sandripples - sore forearm - most definitely. I’ve written about it on the other e-cmf thread; breastcancercare.org.uk/forum/viewtopic.php?f=25&t=25147&p=409640#p409640