Hi all, I start my first chemo cycle on 5th Feb of epirubicin every 3 weeks for 4 cycles, then cyclophosphamide, methotrexate and 5fluorouracil every 4 weeks for 4 cycles. 7 looooong months of chemo. Most people here seem to be on FEC and/or taxotere.
hi,
ive just come to the end of e-cmf, started 3rd july and finished 28th dec - you are right it is a long drawn out regime compared to FEC, especially the CMF - are you having it in 2 parts for each cycle? 2 weeks on 3 weeks off? This regime seems to be a favourite of the Christie which is where i had my treatment - where do you have yours?
The good thing about this regime is that the hair starts growing back after EPI - i think i was only eyebrow/eyelashless for about 4 weeks as they were the last to go.
I found the first 3 treatments hardley any problem at all, then midway the fatigue set in and had a slightly tougher time, but for my last 2 they reduced the dose and so was pretty much plain sailing to the finish line. it goes without saying that everyone reacts differently to treatment but your body also seems to react differently to each treatment. It did for me at least so i learnt not to have any expectations of how it would go with each cycle.
Best of luck with it, hope it goes as smoothly (and quickly) as possible.
xx
Hi, same here last cmf on 28 december, must say i found it easier than I thought I would. Main symtoms were 1st epi felt very agitated and a bit sickly. Told nurses and they put me on a stronger anti sickness. Like pixilot I was on same regimen at the christie, and hair soon started to grow. Other problem was the constipation but as soon as I was given movicol no problem
good luck with treatment , looking back now the time seems to have gone quickly, but I know whilst having it the time does drag
take care
xxx
i finished epi-cmf in november… my regine was slightly different to pixies as i was on the epi every 3 weeks for 4 cycles then cmf once every 3 weeks for 4 cycles so i was only on it for 6 months but was still a long drawn out process.
most people find the epi worse than cmf but if felt pretty naff more than epi… i like to be different LOL.
the epi caused vein damage to me quite soon after my first one… hair fell out about day 16… lady garden went first… legs were last to go… in fact they never really went just slowed down but lost hair everywhere else.
like the others i felt a bit sicky for a couple of days after the epi but then felt better, although much slowed down and tired but also had insomnia since about my 2nd epi.
i got dry eyes on cmf and worse heartburn and constipation but got excellent eye drops from chemo ward, omeprazole and loads of laxatives to help with these.
my eyelashes only actually fell out after id started the CMF and eyebrows became sparse but didnt lose them completely but both have grown back nice and healthy now… the good thing is under arm hairs have still not grown back… last time i shaved my armpits was in june!!! so there are some benefits LOL.
for me the time has flown by and although the chemo and side effects werent great it was way better than i was expecting.
btw my hair is just over an inch long and looks like a normal haircut and its now 10 weeks since i had my last chemo.
hope you dont find it too bad… and you know we are all here for you.
Lulu x
Hi there.
I too am just starting 6 long months on E - CMF. I had my first EPI on 19th Jan and am due the next one on the 9th Feb. I have had the odd day when i have felt quite rough but the tablets they give you worked well for me. I just never wanted to feel sick (i don’t do sick ) so kept popping them anyway !! Worst bit so far for me ? Dry and sore mouth - which whilst uncomfortable is managable. Haven’t suffered with constipation quite the reverse and have a huge stock of immodium. Overall it hasn’t been as bad as i expected and even my daughter said she thought i would have been alot worse.
Low immune point over the weekend and all my bones and body ached - just like doing too much at the gym - but fine today.
Take it all one day at a time as i found everyday was different for a different reason.
This week just waiting for hair loss… had the cold cap so hopefully won’t lose much from my head but hey like with most of this - that is not in my control!
I have 4 weeks of rad’s at the end of my treatment ( just when the kids are off school ) if it all goes to plan. I don’t want any delays on this.
Good luck Steph10 for Friday keep in touch.
Wendy
XX
Hi again, thanks for all your replies. My cmf will be given in 4 cycles every 4 weeks, I see Lulu had hers every 3 weeks which would shorten it by a month - oh well, it seems my hospital (Peterborough, Cambs) likes to drag things out!
Wendy - I’ll be trying the cold cap too which will keep me there for 2 hours after the chemo finishes each time, so arming myself with woolly jumpers, boots, tights under trousers, dvd player, mags, ipod and husbands heated gloves! I hope the cap keeps most of the hair until the end. I can’t see the point if it’s just going to delay the complete hairloss.
I’ll have to take a more recent pic of me here, as this one is just too darn smiley!
I didn’t find the cold cap too bad. I did take layers of clothing and the hospital friends ply you with toast and coffee. The only problem i had was the amount of saline solution given on the drip made me want to keep going to the loo. I think i went about 3 times -so you have to disconnect yourself from the system etc etc.
I had to have it on 45 mins before, the hour of chemo and then 2 hours after which i think is the norm. Trust me by the end of the extra 2 hours i was counting down the minutes as everybody else had come and gone and even the nurses were going for their lunch !
But it will be a small price to pay if i manage to keep my hair even if it just thins. I will be disappointed if it doesn’t work and i know for some people it doesn’t but i will just have to wait and see.Will know by the end of this week if i am one of the lucky ones.
My CMF is in 4 cycles of 8 doses. CMF in weeks 1 and 2 and then a break of 3 weeks before the next cycle.
Take care.
X
hi steph the 4 weekly cmf regime is the normal one where you get it on day 1 and day 8 like pearly and pixie did with 3 weeks off to recover in between.
however my hospital is always doing things differently to everybody else so i got a big dose of the cmf on day 1 then 3 weeks off… not sure what the difference is but both pixies hosp and mine said their way was best so who knows seeing they were both different lol.
hope your cold cap works… i never bothered with it at all, felt loosing my hair wasnt that big an issue for me personally compared to having cancer… liked wearing my scarves and hats… occasionally the cold cap doesnt work though so maybe a good idea to have a wee think about how you would feel in case that happens to you.
take care now
Lulu x
Lulu - yeah, I’m aware that I may go through the tedium and discomfort of the cold cap and find it all falls out anyway. I go for a NHS wig fitting on the 19th so shall get one in case.
Hi,
I had epi/cmf on the Tact 2 trial and got the long 28 week treatment, which I christened the marathon. I was advised to try the cold cap and never wore a wig once, despite buying 2 just in case. It was straggly and a monk’s bald patch on the top I covered with the very wide stretchy hairbands. The cap feels cold and can give you a pain in the head but stick with it because after 10 -20 minutes you can’t feel anything. Take a scarf as ice goes down your neck occasionally. I lost a lot of hair on one epi dose so they said the cap wasn’t down tight enough and practically sat on my head the next time!It started to grow straight after the last epi and I was dying it before I finished chemo as enough hair. Epi gave me constipation and I really had to count the days and take senna if no loo action each day. Then went to cmf and got the runs big time and found that worse actually. Funny that people who find epi easy are often worse on cmf. I found cmf kinder but going 2 weeks in a row made the side effects last longer even if gentler. I had a port put in as veins narrow from the start they said. Lots of luck and although I wouldn’t want another dose I honestly would not be scared. The first one is scarey but I skipped out after it and then a fog came over me 3 days later and went after 3 days and back to normal. Keep a diary of when side effects happen and you can really manage your days out and symptoms a lot better. You gets lots of good days in between so plan nice things if you can.
Big hugs and hope it goes well for all of you
Lily x
Had my first epi on Friday in the afternoon and sick as a dog all night. Honestly the heaving was horrendous! I felt reduced to an animal on all fours in front of the toilet bowl complete with stress incontinence and farting with each heave! Poor husband heard it all form the bedroom.
I had antisickness given via the cannula before the epi, but I don’t know what it was. I was so ravenous when I got home, I wolfed down a baked spud complete with skin (duh!) and tuna. 2 hours later began to feel nauseated and took an ondansetron but to no avail, the vomiting started at 10pm and continued to about 9am. Probably partly my fault, but will ask for advice and maybe have the meds in suppository form if poss. as it was bloody awful and don’t want to go through that again. Nausea now fine, just washed out and tastes are different; like early pregnancy!
Hi Steph, so sorry to hear you were so sick after your first Epi. I am about to go for my third one on Friday, then 4 cycles of cmf, with radiotherapy going on too in the second half of the chemo!
I have been more like you say early pregnant queasy rather than actually vomiting and found old fashioned remedies helped a lot, like ginger biscuits, ginger tea, and just generally eating what you fancy til you get over the phase. I did major weariness in the middle of the cycle with some aches and flu like feelings, but never bad enough to drive me into my bed during the day! I find I have a REALLY good phase for a good week before I go for the next treatment, hope you’re the same, as I can really eat what I like for the last week, and even drink a glass or two of wine.
The treatment seems to be passing quite quickly so far and all I would say is just be kind to yourself. I didnt go for the cold cap, lost all my hair around day 16, and struggled with that, but managing well now with lots of different wigs, bandanas and caps, and hey when you do feel like going out its so easy to get ready, quick bath, no shaving,( and I do mean none) and pop a wig on, I’m ready before Dave now which is a treat 
Trying to see to absurd side of it all, but everyone gets their low days and its always good to come on here and chat to people who understand.
Good good luck with progress and let us know how you get on. People were very kind to me on here and I really appreciate the moral support.
love Carol xx
steph sorry to hear you have been poorly… i had oral granisitron and domperidone and dexamethazone with my chemo and the dex and dom for nausea to take regularly… dom 4 times daily and dex at brekkie and lunch. felt more nauseated on cmf and took granisetron which is a bit stronger.
most of the anti sickness meds work by preventing sickness npot making you feel better when you are feeling sick… so take it regularly before you feel unwell and hopefully it will control it better… fingers crossed its only for a day or two and then you will be on the mend again.
Lulu x
Hi, everyone, I am on the 28 weeks Epi-CMF regine and now on the third cycle of Epi: feeling sick (not vomiting) from the day one to day five, and than bad taste, dried mouth and empty stomach for the second week, and gradually feeling better in the third week before getting another Epi injection.
99% of my hair has gone. I have constipation for three days of each cycle and need the anti-constipation pills and Glycerin Suppositories. I had infection during the first cycle and ended in hospital with pumping up IV antibiotics for five days, and since the second cycle I have been given an injection (Neulasta) to help my white blood cell recover.
The Chemo nurse told me everyone reacted to CMF would be different, but thinking of one more week in sickness in each cycle of CMF is rally scaring me a lot.
Thanks peeps for the well-wishing, it’s nice!
I’m now day 5 post 1st epi and beginning to feel more normal in that not so worn out. Tastes still strange, I seem to favour sweet savory food - ie baked beans with cheese on for breakfast. Also I seem to go from not being hungry to ravenous with not much gap in between. Having had the first 2 days on dexamethasone, surely the effects from that would have gone by now if this is the side effects of it?
pyz1971 - Poor you! Sounds like you’ve had a really rough time. Feeling nauseated for 5 days sounds like hell. I’d rather have violent vomiting for 12hrs and then no nausea or vomiting which is what happened to me. I can see if people feel sick and come to expect it with each cycle, you would come to dread them. Would lorazepam help to calm nerves and hopefully make it less unpleasant?
Hi, the Oncologist gave me the Ondausetrou and Domperidone for sickness, steroid (Dexamethasone), Co-danthrusae for constipation, Corsodyl for mouthwash and GCSF (injected by myself) for white blood cells (since I had mouth infection during my first cycle and my white-blood count was 0.1 for three days by test). Somehow I feel that all these pills could give me the sickness.
Steph10–Yes, I now like the sweet things even need to put sugar in my tea. I am glad for you that the SE of Epi is mild for you.
Take care,
^ ‘Mild’ at the moment but it’s my first one, hopefully it won’t get worse, but I’m not counting my chickens yet!
I have been keeping a diary and it is similar for each cycle so far. Take care, especially in the second week: washing hands, washing mouth and contacting as less people as possible – Epi suppress white-blood cells which to be the lowest in the second week – I was in hospital for five days from day-12 to day-16 during my first cycle due to infection.
Does anyone know how it is chosen as to what regime you get put on? I’ve got to have 8 cycles altogether and feel a bit hard done by when others here only have 6 on the CEF or whatever it is, regime! 
Is it the grade of cancer? Consultants personal choice? Area of hospital?
I’ll ask the onc this Weds when I go back to clinic.
Hi Steph - I’ll be really interested to know what answers you get - please keep me in mind. I feel exactly the same re the questions. I’m not sure what regime I’m likely to get but the BC consultant said she thought the oncologist was thinking of AC for me. When I posted here to ask of folks experience of it only person replied saying she had had it but thought it was a lot more commn in America than here.
Unfortunately She also said it was a harsh chemo, hence it left me with all the same questions you have!!!
I hope you get some answers that satisfy you and very good wishes with your treatment.
Lynnx