Is there any of you ladies on the 4 x EPI and 4 x CMF cycle please ? I have just finished the EPI cycle yesterday and start the CMF on christms eve(whooppee !!!) they have said the CMF isn’t as harsh as the EPI but obviously different side effects, just wondered how you had got on with it, any comments gratefully recieved thanking you in advance !!!
that is exactly the regime I had followed by 15 rads and finished 31 Dec 2008. CMF was definitely much gentler for me but minor side effects hung around a little longer rather than fast and furious and over quick like epi. I had constipation like you wouldn’t believe on epi and the runs on cmf,although few other people have had that. I was very anxious about changing and especially going back twice each month. Strangely my neuts went up on cmf each time and I felt really well apart from the annoying trots. My hair started growing really fast and had to have 2 cuts before I finished it. The M (methotrexate) is weeny and yellwo,hardly makes it down the tube before they finish pushing it through. The F and C are much bigger so a longer visit than for epi. Not all hospitals give the cmf the same way. Some have tablets for parts or patients go on different days of the cycle. I went on day 1 and back on day 8 and had the same each time. I had a minor reaction to the cyclophosphamide which can give you swimmers nose. Nothing to worry about but onc made me have piriton beforehand iv and had to have it on the slowest drip or got a pain in my nose and head. If your nose starts to sting/ feel odd tell them and slowing the pace they push it through stops this. I also had to take a supplement while on this which they gave me.That was fine. I managed to stop taking steroids and had no nausea, so gradually cut out one tablet each cycle as they gave me more side effects than the chemo. Hardest thing on this one is the 4 week cycles drag on longer and I had to have blood tests before each dose so 2 each month. It was much easier for me and I hope the same for you.Good luck.
Thankyou so much Lily, thats so helpful, I’ve got used to the EPI now so feeling a little anxious about changing, I will definately bare o=in mind the swimmers nose ! they said the se’s would be more around the mouth, nose, eyes, I suffer from lichen planus in the mouth so not relishing the thought of any more ulcers and the sore mouth i’ve had with the EPI !! the thought o9f my hair growing back thrills me so thats something to really look forward to ;-)I’ve got 3 weeks of rads after and also the tamoxifen.
Thanks so much again, I feel much less anxious now
hi Belinda i had 4xepi and 4xcmf with my last chemo a year ago.
i had the whole dose of cmf on day one and none on day 8 like others had.
i actually found the cmf a bit more unpleasant than the epi… with the epi i felt crap then i felt good then crap again but with the cmf i just felt a bit naff all the time… no ups and not such severe downs but i think we are all different an some people prefer to feel a bit rubbish all the time than to have ups and downs but i preferred the ups and downs as i knew in my middle week i would feel pretty good.
i had even worse constipation on the cmf than the epi… 8 days or more without going… but as you can see from lily and me the side effects can be really variable.
i did also get the shooting pains up my face, nose and head but told this was rare… however have hard of quite a few people who have had this experience.
I have just finished (3 weeks ago)the CMF leg of my chemo…I was sick with both Epi & CMF…thank fully not constipated, but was slightly loose, but ok… My mouth was not too bad, it just felt dirty all the time, the mouthwash the hospital gave me really helped. I only had a couple of mouth ulcers per cycle that lasted a few days. my tongue felt like it was ‘raw’ spicy foods, which I love, I was not able to tollerate, my poor tongue couldn’t take it.
I too had CMF split, day 1 and day 8, I didn’t like the feeling of the Cyclophosphormide, my head was horrid, this was sorted by the nurse administering it much more slowly. I was advised that the Methotrixate affects your kidneys so drink plenty…this really helped, the chemo day & 2 days after, I was advised to drink 2litres of water, this really helped.
I didn’t have the nose issues that Lulu had, but my hair ha really grown so that is good.
the thing for me was crossing each chemo off, which helped get through it, keep your chin up lovely, and you will get through this,
love Jenny xx
Well, had my first CMF on christmas eve and the second dose new years eve, was quite anxious about changing but the nusre just chatted me through the side effects as each on e went in !! did get slightly giddy for a few secs with one and then my nose felt like it was throbbing abit in my sinus, have felt quite achey and a weird feeling in my tum, not nausea but weird, had to go in with high temp last monday, blood count very low, but thats the first time since I started and I met some lovely, lovely ladies while there, have felt ok for the last few days, have next lot on fri 21st but then I only have 2 treatments left, whoopeee, last dose should be 22nd april, good luck to everyone and hope things are ok for you all too
Really glad to find some more people on the Epi CMF regime as it seems like a lot of hospitals do the FEC regime. Just to let you know I am about same stage as you. Finished my 4 x Epi in November then had my first CMF start of Dec. I am now coming up to my 3rd CMF on the 26th Jan so should finish all being well on 2nd March. CANNOT WAIT!! Have promised myself large bottle of champagne then Don’t know how you are feeling now but I have found CMF a lot easier than the Epi. LIke some of the others I found the first week after Epi a nightmare but with the CMF I have found I have been able to carry on pretty much as normal. More tired in general but no where near the nausea that I had with the Epi. Also my hair is growing!! I am so happy, I can’t believe how much difference it makes but it is really cheering me up to see it growing. Got all excited the other day as my underarm hair was growing - mad. Anyway, I hope you are feeling OK now - not long to go
Yeah, I’m doing ok, my hairs started growning too, whoopee !! only on my head so far tho !! I was very very lucky with the Epi, I didn’t have too many SE’s really, quite nauseas for the first week or so but with the CMF, I feel different ! can’t put my finger on why, sounds a bit daft really, feeling of nausea is much less, but very achey joints, the 13 stairs to go bed or the loo seem like 113, but all good really, none of it nice but all very doable, I have met some really lovely people and the docs and nurses have been a blast we seem to have a really good giggle which makes having it done easier, hope you get on ok on the 26th you’ll only have 1 more after this, how wonderful is that, and i’ll only have 2 after fri!! yay
Well I am now resorting to some aromatherapy oil mix a lady at the cancer support centre mixed for me plus the hair stimulating solid soap from Lush - lots of desperated massaging of hair follicles in hope it may help!!! Seems to be growing just not very quickly and still not very thick but I am not known for infinate patience so guess I am just going to have to wait. My surgery is planned for the 2nd April so would just like to be comfortable without wig for then. Saying that I had to go into hospital for 3 days before Christmas and spent the whole time bald mainly because too hot to wear anything and no mirrors in room anyway so in my head I had a full head of hair
1.5more cycles to go - hooray. Got one next Wed and then 2 left. Am so buying champagne for after regardless of how I feel!!
Just wondering if anyone else is starting or has already started on EPI and CMF in March, as I start on this on March 24th?
Hi Sailingmungo I started EPI and CMF tues 15th March so just coming to end of first week!! Haven’t been too bad felt sickly Wed and Thurs but OK on Friday then woke up with sore throat yesterday and this morning. Do feel tired a lot of the time so lots of afternoon naps have been going on I think you just have to see how you feel day by day. Good Luck x x
Hi, I am also starting epi cmf in march and sailingmungo I think we are at the same hospital aswell, small world isnt it? I am doing 4 x epi 3 weeks apart then cmf at day 1 and 8 with 3 weeks between. Reading this thread it seems 1/2 the people say epi is worse and 1/2 say the cmf is worse so I guess its just a case of suck it and see. Wouldnt it be great tho if hair really does grow back early as if you dont lose it til week 3 or so and its coming back by week 13 how good would that be? Anyway good luck with treatment all and Ive saved this discussion to update when Ive started…Rachel
Thank you for your reply, good to hear off someone else that is on the same as me, there doesn’t seem so many of us on these forums.
Getting very nervous now will be glad to get started, nice to hear that you haven’t had too many side effects.
How long were you at hospital having your first treatment?
Best wishes Sue
Just posted a reply before I saw your message, thanks also, I start this Thursday at 10.30 been waiting for what seems like ages to begin, had WLE on 23rd December and Wider local excision on 20th Jan.
I have my wig ready, a hat, a headscarf and a hat to wear in bed! My family say my wig is nicer than my real hair!
All the best, and let me know how you get on
Best wishes Sue
Sue,Good luck for Thursday, Im 6 days behind you so please let me know how it goes for you and any handy hints for me (its all about ME!!!)Just had hair chopped really short today and actually it looks so awful I’ll be glad to see it go, reverse psychology you see…
Was in the hospital for just over an hour so not too bad They put anti sickness through then the EPI and then saline which actually lasted the longest!! when the EPi first went in had that feeling you get when you haven’t had adrink (alcoholic) for a while a bit woozy? but only lasted a minute they say its because it is cold. Felt absolutely fine whilst it was going in. Now a week later did have really sore throat at weekend but yesterday and today feel great again bit of headache but thats all (It is nice to feel good again for 2 days in a row! ) All the best for Thurs let me know how it goes hopefully your se will be minimal!!! Jill x x
Hi Tolliebelle and Rachel,
Thank you both for your good luck wishes,
And thanks for letting me know how it was it is reassuring.
Went for pre chemo assessment yesterday, the staff were all very kind and friendly which makes it easier.
Hope you carry on feeling good Tolliebelle and good luck for next Rachel, I will let you know how it goes for me.
Just come back from the hairdressers had my wig fringe trimmed and softened.
All the best Sue
Hi Rachel and Sue
Sorry Rachel didn’t see your post till had replied this morning. I got my wig today!!! Will let you know when I need it hopefully at least another week yet. Good luck Rachel for your start next week? Also hope your se are few!!
Best wishes Jill x
Hi Rachel and Jill,
Just had first treatment went very well, nurse was fab and all staff very friendly. Didnt feel anything whilst having the treatment.
Back at home sitting in the garden enjoying the sunshine, but abit apprehensive thinking will something happen.
Bestest wishes Sue x
Really pleased went well Fingers crossed you continue to feel well.
You next fingers crossed you feel as well after!!!