Hi all, I’m due to start E-CMF chemo on Friday, and have been told that with the Epirubicin, the evil red stuff, that your head hair not only falls out but often returns a different colour and texture. Anyone had any expeience of this with E-CMF? Interested in hearing a big yes from another regimen, especially if it contains one of the chemicals in the E-CMF cocktail, and also interested in hearing of how people have felt / reacted to it on that E-CMF mix.
The Mother of one of my friends had a different regime, and her straight, fair hair (like mine) came back jet black and very very wavy, but she was on a different chemo cocktail. Looks a bit odd, as she’s in her late 70’s and now looks like a disco diva!
I’m just about to finish my chemo - same as you epi (with accelerated dosage, every 2 weeks) followed by CMF. My hair went within about 4/5 weeks of starting and it’s been starting to come back this last month but coming back very slowly,very thin (always had thin hair) and patchy but it’s early days as yet - I’m pleased with the progress and it looks to be coming back the same dark colour - I’m 50 and was worried it would all come back grey - not had many grey hairs so would have not been happy.
I managed chemo quite good - very knackered, not sick once but quite naseuas although the anti sickness tablets are great for that. I have had stacks more good days than bad days whilst on chemo. I have found that the CMF didn’t suit me as much as the epi which is strange as the CMF is supposed to be kinder
Good luck with the treatment - it seems at the start that it’s going to take forever but when you get to the end of it you wonder where the time has gone
Thanks Kelyn. I was actually rather looking forward to a change of hair colour, and delighted at the idea of it coming back thicker, both of which have happened to Helen’s mum. Am dreading the potential nausea and vomiting, since that has long been a feature of my illness, and I’m already on Buccastem, Metoclopramide, and domperidone (motillium). I know there’s a stronger one they can give, and that the dexamethsone is an anti-emetic steroid, but am still dreading it. I loathe being sick, and on top of surgery (mastectomy and lat flap recon) throwing up is incredibly painful. What did you have prior to chemo? I’ve seen on here that some people are reporting that their recons flared up during treatment - do you have anyy experience of this?
Many thanks for replying,
Angel.
I am also on E-CMF and started in May. I am 35. As with Kelyn I had accelerated Epi as part of a trial. My hair came out 2 days after my 2nd dose of Epi and beforehand my scalp was v.v.sore. My hair started to come back just before I switched to CMF. I am now about to start my 3rd of 4 cycles of CMF and my hair has put a real spurt on! I don’t think it will be too much longer before I can venture out commando! I was worried that my hair would grow back grey as that seems to be lots of peoples experience but my chemo nurses have assured me that only tends to happen to older ladies. I have always had v.dark hair and from what I can see so far my hair looks like it is a sort of peppery colour. It is also incredibly soft and a little wavy! One of the older ladies at my support group said that initially her hair came back totally grey, which was no surprise as she had been grey for many years beforehand. Anyway, once it had come through properly it changed colour and went brown! She hasn’t seen a grey hair since!!!
As with Kelyn I have found the E-CMF to be nowhere near as bad as I had imagined. My anti-sickness meds were luckily nailed right from the start, so although I have suffered from time to time with some nausea thankfully I have never actually been sick. I found I got progressively more tired as the Epi accumulated, a sort of fatigue that I have never experienced before. Since being on the CMF my tiredness has greatly improved, and the 3 week break after my day 8 dose is awesome! I have suffered with diarrhoea and a poorly tummy with the CMF though, but only generally for the first few days after each treatment. I have been given meds for this though which do help.
I wish you well as you start your treatment. Honestly you will not believe how quickly the time will go!
Take care and you know where we are if you need us,
Thanks Kelly Am really quite looking forward to having wavy/curly hair, and maybe a diff colour from its normal ordinary light brown…my Mum reckons I might come back bright red, as apparently there is very red hair on her side of the family - we’ll see! Am really dreading chemo, but a lot of it I think is due to my hideous response to the Zoladex injection last week. Saw GP on Mon and he says it’s a normal response, to howl your head off for no reason at all, is all hormones, and just to grit my teeth and get on with it. He said, when I complained about how c**p I felt, how non-functioning I was (am), “You need to take a step back from this. These treatments are being given to you to save your life, to stop you from dying. The next few months will be the worst of you life, but however bad you feel, you have to do it.” Great. Nothing like a pep-talk, eh? He prides himself on “being straight” with me, and I generally appreciate it, but I do wish he hadn’t said, in response to me saying, “Well, the Zoladex, the chemo, rads, and Tamoxifen all increase my survival chances to 89%, so that’s good,” “Yes, as long as you aren’t in the 11%.”
Anyway. I’ll let you all know how it goes - are we three the only ones on E-CMF? Everyone else seems to be on FEC and Taxotare (sp?). Onc said E-CMF was a standard chemo with few side-effects, GP reckons it’s an aggressive chemo - do you know anything on this score?
Hi! Angela.
I am also on the E-CMF tac 2 trial. I am off to hospital just now to get blood tests then 3rd cmf part 1. tomorrow
it will surprise you how quick it all goes in. It is better not to think of all the negative things and just get on with it. My husband has been through heart problems and cancer this past twelve years and I discovered I was worrying over things that did not happen, now I just take things as they come along (certainly did not think I would get this) just got to get on with it. Best wishes and good luck with all your treatments. Jeanxxxxx
I have just done all the meds for the 3rd CMF cycle and my hair is coming back already. It is sort of beige and very soft and fluffy. My husband said it is like cygnat fluff which is nice because I am a swan warden and work with them a lot- maybe there is some genetic splicing going on somewhere!!. do wonder what it will look like eventually, I am rather hoping for a trendy curly crop possbly white so i can wear bright red lippy and look cool and sophisticated. Hmmmm - maybe this is wishful thinking,…
Anyway - don’t worry I’m sure whatever happens you will look gorgeous
Love Swanie
Prior to chemo I had a WLE and some lymph nodes removed then they had to operate again to get a clear margin and take out all of the lymph nodes. I have finished chemo today - last one this morning and looking back on it it has really gone fast - although I do remember saying how slow it was when I was half way through!!! I have 3 weeks rads starting 1st October.
There are stacks of us on epi-CMF on this board although lately I have seen the majority going on a different trial to the one we are on. Listening to what others have said I think that our regime may have less side effects than others - my thoughts!!!
I think I would have hit the doctor with his 11% comment!!! you’ve got brill survival rates there - that seems very high to me and I would be delighted with them - mine where quoted as 75%. from here on in lady luck is going to be on your side
don’t you be worrying, there are loads of us on here that are on E-CMF. As with Swanie my hair is now growing back and I currently resemble a baby swan or chick! Its soooooo soft and fluffy! Yeah I defo think E-CMF is quite an aggressive chemo, I reckon I had it as I had so much lymph node involvement.
It certainly sounds like your Dr is a straight talking kind of guy! Sometimes I appreciate that but if I’m feeling a little over sensitive I prefer the softly softly approach. The stats he’s given you are awesome, I’ve been too scared to ask! I was told at the start but honestly can’t remember as I think I switched off!
Take care and I wish you well as you continue your treatment,
I started E-CMF on Monday doing the TACT2 trail but standard arm. I have suffered from the nausea but only sick the 1st night. Big tip is to try and eat plain salty food if you can, i think i got into the vicious circle of not eating because of feeling really sick then feeling sick from not eating!! You cant win. I have been taking my anti - sickness drugs religiously as hate the sickness. Feeling a lot better today and about to go out of the house. I used the cold cap but not holding out much hops as have a very small head so it did not fit so well. I am 24 and had a Bi Lateral mastectomy in July followed by auxiliary clearance at end of July. I have to heard that E-CMF is very strong and is meant to be easier than FEC as the Epi bit is only one drug and not a combination.
Kelly’s comments were great and very helpful. Good luck with it all and say do try to eat that’s made me a lot better today.
Good luck tomorrow and hope it is ok, sounds like we are at similar points in the treatment.
I finished e-cmf Tact 2 trial with accellerated epirubicin nearly three weeks ago. I was pretty scared about the whole chemo thing before I started treatement but my breast care unit and the chemo clinic (Buron on Trent)were absolutely brilliant. The epirubicin part of the treatment was unpleasant but do-able and I was grateful to be on the accelerated programme as it was over and done with very quickly. The first two bouts weren’t too bad but the third and fourth made me very very tired,to the point where I burst into tears at the chemo clinic and got told that I was expecting too much of myself and just listen to my body.
As for physical side effects I didn’t have much nausea and no sickness, probably due to the anti sickness tablets. I had a bit of a dry mouth but no serious ulcers - if they give you mouthwash as a preventative measure make sure you use it. I was given Difflam from the start and even on the cmf part my mouth wasn’t as sore as I understand some people have suffered. I think I imagined the side effects would be horrific so the ones I got were mild relative to what I was expecting. I had a bit of a set back when they switched me to cmf as I caught shingles after the first round and ended up in hospital with neutropenia. They cancelled the second part of that round and reduced the dose from there on and to be fair if it wasn’t for the tiredness I wouldn’t have suffered very much at all on cmf.
I prepared myself mentally for losing my hair as I was told it would happen long before I even had an appointment at the oncology clinic. I bought lots of hats and scarves and told myself it was only for a short time. The wig I got from the hospital was really nice and I’ve decided when my hair is back properly I am going for short blonde, which I would never have dreamed of before. While I was feeling quite low I got told I looked 10 years younger so there was an upside to it! I’ve got about half an inch of evenly growing black and white hair now and my GP told me last week that people are paying a fortune for a hairdo like mine!
I’m due for my radio assessment on Monday followed by 5 weeks of treatment which I am told is a doddle after chemo. and I understand that my energy levels should be something like normal after about 8 - 12 weeks. Can’t wait as I am fed up with starting to do something and having to give up because of tiredness.
I hope your chemo goes well. The time will go quicker than you imagine at the moment.
Thanks everyone for your comments, advice and support - it’s great to have it
First chemo has been horrendous. Even stuffed full of anti-emetics (buccastem, the andosteron (sp?) one they give you to take home, domperidone, and metoclopramide) I was on the point of being sick for a whole 7 days - really nasty and couldn’t eat, or take any of my nutritional supps because of it. Developed raging mouth thrush within 2 days, which was hideous and made everything taste too disgusting to eat or drink too. Then I got restless legs and arms, which meant I couldn’t get comfortable, or relax, just tossing and turning all the time and not sleeping because of it. Then the migraines kicked in - honestly, it’s all been a bit too much. Like a big black tunnel with no light at the end that I could see. The tossing and turning also aggravated the pain from my mastecomy and recon surgery. Got on the phone to the chemo nurse, who said the nausea might not be to do with the chemo - who cares! Just make it stop! Took forever to get her permission to start the anti-fungals early, then gave up and got hold of my GP (the straight-talker is on hols so I got the one with the best bedside manner and sympathy instead - he’s a gem, almost makes it worth being sick, he’s so nice!) who prescribed cyclizine as a better anti-emetic, and who told me I shouldn’t have been given the domperidone along with the metoclop as they both increase the speed of food passing through the digestive tract - explains why I was on the loo so much! The cyclizine helped, and they’ve also given me some valium to knock me out at night and stop the restless legs thing - the legs thing doesn’t even sound like a major symptom, but in reality it’s bloody awful because you just can’t settle at all, nowhere is comfortable, you get no rest and it’s exhausting. Now on day 12 from first chemo and feeling a less sick etc, just tired, and dreading the next bout. Oh, and I was expecting head hair to go first, not the downstairs lot!!! Started coming out on day 5! Is that fast, or normal?
Am really quite looking forward to having wavy/curly hair, and maybe a diff colour from its normal ordinary light brown…my Mum reckons I might come back bright red, as apparently there is very red hair on her side of the family - we’ll see! Am really dreading chemo, but a lot of it I think is due to my hideous response to the Zoladex injection last week. Saw GP on Mon and he says it’s a normal response, to howl your head off for no reason at all, is all hormones, and just to grit my teeth and get on with it. He said, when I complained about how c**p I felt, how non-functioning I was (am), “You need to take a step back from this. These treatments are being given to you to save your life, to stop you from dying. The next few months will be the worst of you life, but however bad you feel, you have to do it.” Great. Nothing like a pep-talk, eh? He prides himself on “being straight” with me, and I generally appreciate it, but I do wish he hadn’t said, in response to me saying, “Well, the Zoladex, the chemo, rads, and Tamoxifen all increase my survival chances to 89%, so that’s good,” “Yes, as long as you aren’t in the 11%.” 