lynvee - interesting! Something else to google - AC America.
What does the AC stand for? Just googled and all I got was air conditioning!
Ah, there you go;
Thanks Steph - should have said, subsequently found out about it but still got the questions - why this type for me? etc etc. Let me know what answers you get.
Lynn
hi,i started e-cmf on 16th feb and seem to have had a similar experience to you -throwing up on the first evening etc.im now a week down and feeling ok.has anyone experienced an outbreak of spots?i normaly have clear skin but at the moment i have about seven huge angry spots on my chin also im experiencing breast pain in the unaffected breast bit like period pain.my treatment is the long haul with four epi then cmf on day 1 and 8 then 3 week rest.paranoia has visited today so it hasn’t been a great day but great to hear from people on the same journey xx
Hi Steph - Good luck with your questions tomorrow.
Lynn
Hi,
Everyone in my area has FEC unless they have positive nodes and then they have TAC. The C for cyclophosphamide is the same in each. They like you to have A or E as they are the big drugs that really kick C up the backside and then the taxanes are another group that is one of the heavy guys.This does appear to be changing a bit so I guess new research is pointing to other regimes and some oncs sit on their favourite while others move more swiftly. I was on epi/cmf because I am on a research trial. My friend on FEC had 90 mls of epi each time and was violently sick and I had 1000 mls on the trial and was never sick but had loads of other annoying side effects. I had cmf on days 1 and 8 and found the thought really scarey but my neuts loved cmf and were higher on the 8th day tests than day one. They were about 5.8 on day 8. The C gives you swimmers nose but they can control that by giving it slowly through a drip rather than hand injected, just takes longer. Fab my hair started growing immediately and had a pixie cut before I finished cmf, so swings and roundabouts
Wishing you all much luck with your treatments
Lily x
josieb - yes! I’m usually prone to a spotty chin anyway, but since the epi have had an outbreak but I think I prolong them my picking 
I had been clear up to then.
Also, from about the 3rd week after having the epi, both my boobs are very sore and heavy and although my period is due end of this week (unless I’ll now go straight into the menopause as I’m 49), they are more painful than what they used to be before a period. I’m unable to sleep on my front.
Lily200 - Are people always put on chemo where you are even if they haven’t got any node involvement? According to the info on this site, they are put on it if the lump is 2cm or more in size or if it’s an aggressive tumour.
lynvee - ta! I’ll take my scrappy bit of paper with me with the ?'s written on it!
Love the internet! You get far more info speaking to others in the same boat than with the gumpf you are given at the hospital.
Steph XXX
lynvee - I failed!
Every time I go to the clinic, I get the impression they all have very little time. I had to wait an hour to be seen and after explaining to the Registrar how I was after the 1st chemo, there didn’t seem much time to ask further questions. I could ask the nurses tomorrow at my 2nd chemo session.
At some point I will ask the doc at the clinic, after all, I’ve got another 6 sessions to go so will find out at some point and post it here.
Haven’t posted for a while as i have never felt so rough in my life. After relatively mild SE after my 1st Epi all of which were managable, my 2nd was horrid. My hair had thinned so much after the first treatment that the cold cap was really painful on the 2nd dose but i did manage to keep it on for the 3.5 hours. I was sick as soon as i got home from the hospital ( not sure how i wasn’t sick whilst having the chemo to be honest - but there you go ) and then felt dreadful for about 10 days sick, feeling sick, really teary wondering if this would ever end or asleep. I was told that my periods would probably stop and the early menopause start - well let me tell you i had the heaviest period of my life during this time!! I keep hoping that it was as it was my last one - but i know i am trying to convince myself and i don’t believe it.
My macmillan nurse said we would change the drugs next time for stronger anti-sickness. Going to ditch the cold cap in view of hair loss to date - didn’t work for me. So fingers crossed for a better experince next week. Have had a great week this week and have been wined and dined every day ( makes up for the fact that i have hardly eaten anything for the last 2 weeks and felt like crap most days including half term when the kids were off ) Have met up with friends and chatted. Realised i spent too long telling them how bad i felt when they asked me how were things going so decided to limit “bad” talk to 5 mins. Made me feel so much better. Am not even thinking about the CMF yet as my last Epi completely threw me for 6 on how rough i felt.
My neighbours aunt who was due to have 6 doses of FEC asked the question of her oncologist what was the minimum she could have. She said 4 so she has reduced her course to 4. I am having 4 Epi ( 2 down 2 to go) and 4 CMF ( weeks 1 and 8 counting as one dose ) This apparently is the “norm” for a grade 3 aggressive lump. Mine hadn’t spread into the nodes and after the lump was removed it was over 5 cm across. No family history or other risk factors.
Anybody got tips for what to drink? I seem to be drinking far too much juice which means i do not suffer from constipation if you get my drift…water tastes horid, coffee is good some days not so good others.
Lots of love
Wendy
X
Hi,
Steph yes our onc has been giving chemo to anyone under 50 although you hear of some people who are 100% hormone positive not having chemo or older people. He has a very high success rate, closing in on 90% I was told so I just do whatever he says. He said for a 2.3 cm grade 2 tumour with no nodes it would make a significant difference so I had lumpectomy, 7 months chemo on e/cmf and 15 rads. Now on tamoxifen. No-one can look into the future but for me having everything and thinking well I’ve done the best I could means I have no regrets. I think you just need to be happy with what you are given or speak up and ask the right questions as not all areas spend as much on BC as others. I am in a centre of excellence so we get a lot of treatment and routine checks and scans. Hoping things are going well for you and everyone else on this thread.Pearlysocks I had the cold cap and lost the top of my hair after one dose but not really from the others so they said it was not on tight enough. I stuck with it and wore big stretchy hairbands to cover the monks bald patch on top!! When it started growing after the last epi the gap filled in really fast and I had several haircuts before I got off epi. People who are rough on epi (in my limited experience on here) tend to find cmf much easier in comparison. Hope this helps
Lily x
Had 2nd epi last Friday 26th and this time wasn’t sick at all! Last time vomited all night, so this time 1mg lorazepam twice a day was added to ondansetron and dexamethasone and amazingly it worked. I really thought 1mg lorazepam was going to be too puny against the side effects of chemo, but apparently not and I slept all night.
pearlysox - disappointingly, my period started too on the day of the 2nd epi! I suppose now we’ll be wondering before each period is due whether we’ve just had the last one or not!
It sounds like we are having the same regime at about the same time, although my lump was 1.6cm, grade 2, but cancer found in one node.
Is it true that hair grows back soon after epi?? Does it grow back on CMF? Is there light at the end of the tunnel??
Oh well, it’s 11am, must get dressed and brush hair and then hoover up…
pearlysox I found well chilled sparkling water was very palatable as was lemon and ginger tea.Letting a slice of lemon steep in ordinary water can also help.Good luck to all of you.My regime was different [FECx4Taxoterex4]but se’s sound similar.Good Luck to all of you,
Valxx
to steph10
Hi
I had epi/cmf 3 yaars ago, I had 2 tumours measuring 1.5cm and 1.7cm with 2 nodes out of 33 positive. I had a right mastectomy followed by epi/cmf then tamoxifen. My first two i was sick then they tweaked my sickness meds and after that sometimes felt nauseaus but wasnt actually sick. My period stopped after the second chemo and has never returned. My hair started to grow back during epi and continued to grow during cmf. I started my chemo early feb 2008 and could go without a hat (didnt like the wig never wore it)by july albeit my hair was very short but i got a lot of compliments saying i suited it and have since kept it quite short.
Best wishes and take care.
Carolyn x
Thanks Carolyn 
X
Hi,
yes hair grows on cmf, thats why I agreed to the cold cap as the second half is much longer on 4 week cycles and I had dyed my hair (organic dye) and had several cuts before I completed chemo. I never wore my wigs either.
Really glad to read your sickness was sorted out so well. Long may that last
Lily x
hello glad you are doing well with your second epi i go for mine on 9th march.i had trouble with my veins and low blood pressure last time so going to drink loads of water beforehand and wrap my hand up in a hot water bottle (any more tips would be apprieciated).I was stuck at hospital for two hours waiting for my blood pressure to go up last timeand i fainted so i don’t want it happening again.i’m sure the nurses can’t wait for my return next week haha.Losing the lady garden at the moment but no head hair lost yet not even a strand the anticipation is unbearable.good to hear your hair grows back on the cmf cycle should have a head of hair when i return back work.Are you having rads as well? i’m having 3 weeks after chemo.Not sure about the who gets chemo debate-i had 2 tumours 1.5 and 2 cm was grade 2 with no node involvement had full masectomy and have got a breast tissue expander in stretching the skin ready for my boob job.My oncologist and surgeon both told me that my chemo and rads are due to my age (37)and are a precautionary measure.
Hi girls
I had epi as part of the Tact 2 trial 18 months go. This meant that I had epi every 2 weeks instead of every 3. I must say that each cycle was different. The first gave me the most awful sore throat, but still managed to take 2 grandkids away for a few days, then it was just the routine sore mouth - gums, thrush, the runs, awful taste and the ‘messed up head’. It was do-able and if I can do it (I’m a right softy) anyone can!
It’s a hard drug with super results and I don’t regret it for a moment.
I do remember though being told I needed chemo and I was so scared. Afraid to tell my family of my fears I went for the 1st chemo, sitting in the chair I just wanted to run,and I thought ‘well if little kids can do this so can I’.
It’s not that bad - honestly,
Mal x
hi,just wondering if anyone having the same chemo as me.i have had 3 epi,am having 3 tax and then 12 weeks of cmf(think these are given every 3 weeks) then rads.My first session was 23rd dec and i wont finish until the end of June.when I see what everyone else is having its usually only the two types of chemo-either fec and tax or epi and tax,just wondering why mine is being so long winded.I was told its because i am young(not that young 45) and they are throwing everything at me and never want it to come back.is any one else having the same.I was a grade 1,18 out of 20 lymph nodes/thank you jackie xxxxxx
i didnt have it but i think shazza aka smallstar had that regime you could maybe try sending her a personal message to see if she can give you the low down on it.
Lxx
You may remember I wondered why some areas have E-CMF as opposed to FEC. I managed to ask the registrar at last hosp appt and she said E-CMF is given here in Peterborough due to a trial done at Addenbrookes hospital in Cambridge. I think the 2 hospitals are linked as both are in Cambridgeshire and the mastectomies and radiotherapy is done at Addenbrookes, but chemo at Peterborough where I live. Will be a pain when I have radiotherapy to travel by train every day, but I hear it’s an excellent hospital.
So I suppose basically, it depends on what area you’re in. I didn’t ask about AC.
Also asked her if I should wear cold cap on CMF, and said I should incase for me, hair falls out on CMF. Damn! I was looking forward to not wearing it, but I’d prefer to be on the safe side. Also, a friend of mine who’s just completed E-CMF said that her eyebrows and lashes didn’t fall out on E but did on CMF - just when you think you’ve got away with it.
steph my lashes and brows didnt fall out till after i started the cmf too… however i dont think it was cmf that caused but the cumulative effect of the epi.
i found the cyclophosphamide really nasty… was painful getting it… like pins being jagged in my face and head… apparently i has quite an extreme reaction… but got dreadful dry eyes and dry cracked nose which i still have problems with even though last chemo was 4 months ago.