Starting to wake up and look at the pillow in horror just incase, wont let my OH touch me head just incase, wont touch my own head just incase, dont want to shower just incase!!! When do you think i should see it happen if its going too? I had my first EC 5 days ago. Has anyone kept there hair on EC wearing the cold cap??? - to be honest I am not holding out much hope…
I have also started losing my sense of taste, which I was told to expec however didnt think it would go this quick. I havent really suffered any side effects yet, so should I just assume apart from tiredness that is all I am gonna get, or is the 2nd one usually when it starts kicking in?
Hi Lynne
I had my first chemo FEC 12 days ago & I have stil got all my hair (not using cold cap) I was warned that it may falling out in week 3…
I dread brushing & washing it.
The only side effects was tiredness, hot cheeks and yes my tastye buds are acting weird!
I think we have been lucky so far and may this continue!! when is your next one lynne - mine is on the 30th aug,…
got to say dreading it…
cyber hugs
mel
x
I know what you mean about dreading it - when they inject the C part of mine my nose stings like hell(as if you have jumped in a swimming pool full of chlorine)!! My next one is 5th Sept. I really really really hope that this is all the side effects we will get too!
I worry too about my hair falling out and keep wondering when will happen. Was told 3 or 4 weeks after first chemo and coming up to my third week now. Am absolutely dreading it. Not sure how I will react yet.
No side effects as yet to date to report, which is really good news, although am sure this will not continue throughout my treatment. Next chemo is on 29th August, think I am ok about it, but am sure as it comes round will start to panic and worry again.
I started E-CMF in May and had accelerated Epi as part of the TACT2 trial. My hair ‘properly’ came out 2 days after my second dose of Epi. Prior to that my scalp was v.v.sore, and like you, I was scared to even touch it! Mind you, I didn’t do the cold cap thing as I really didn’t fancy it myself.
The taste changes are mad aren’t they! Top tip though to stop that ‘jumping into a swimming pool’ feeling, eat or drink something whilst your chemo is being given. This is gonna sound mad now, but when I go for my CMF I take a cool bag with me with a ‘mini calipo’ ice lolly in it!! Oh, and some mint and fruit sweets too, although I never get around to having them! Soon as the nurse starts my chemo I get sucking!!! This totally irradicates all of those horrid tastes and feelings. The nurses are totally used to my mad ways now, and reckon its a v.g idea!!
Thankfully I really didn’t suffer too badly with side effects on the Epi, but I did find I got increasingly more tired as the chemo accumulated. Just be sure to take good care of yourself and ‘listen’ to your body,
Thanks for the tips Kelly.
Glad Im not the only one with the tingly nose. Does any one get the light headed semi drunk feeling? or is it just me>?>
Lynne - I dont think that I will handle it to well when my hair does finally come out, my daughter says she cant wait - she wants to draw & out stickers on my head oh yeh and try the wigs on. OH daughter & son have already been out & brought me some bandanas!!! Bless.
My hair started to come out a few days after my second chemo (EC). I first noticed it when I was straightening my hair one morning, and strands were coming out - I then ran my fingers through it, and more was coming out!. Eventually, my husband shaved it off for me after I’d had a go at hacking at it myself with the scissors (NOT a good idea!). Yes it’s not great, but you do get used to it, I promise !
As for other side effects, I was gutted to find I went off my daily cups of tea, and have cravings for stronger tasting foods, and especially tomatoes for some reason. I seem to have this awful permanent taste in my mouth, which can only be relieved by sucking on sherbet lemons, and drinking gallons of lemon barley water. Oh yeah, and lollies !
Mel, I can relate to the tingly nose and the light headed feeling - I suffered with both when I was on EC. Now on paclitaxol and gem, which I’m finding a little better to cope with - apart from my legs feeling as though they belong to a 90 year old !
Good luck ladies, and please don’t worry about your hair - as I’m sure you’ve heard a million times (I know I have !) - “It’ll grow back !”
I am on AC chemo - my scalp started hurting around day 14 - am now on day 21 and have lost probably half of my hair - OH gonna take the rest of tonight - arrrrrrrrhhhhhhhhhhhhhh (I too used the cold cap). Everyone is the same and we all have the same feeling of dread.
Hoping your hair stays put
Thinking of you
Fiona
x
I had my first FEC 8 days ago, and like you I am waiting for the hair to drop out!!!
and Mel I definitely have this semi-drunk feeling, I feel really spaced out!
Hi Lynne
I have had 4 EC chemo so far using the cold cap and have had very little hair loss just underneath has thinned and my hairline has receeded slightly but it is shoulder length and not noticiable, infact people tell me they would not know if i didnt point out the thinner bits. I have washed it every other day blow dryed it and straightened it, because my thought was while i had it i would make sure it looked nice.
I am debating whether to continue as it has to be on longer with my next 4 chemos of taxotere and the last 2 chemos have been hard due to vein problems so want to go in and get out as soon as possible, but if you can stand it, it has worked for me.
Good Luck
Rachel
Me too Lynne.
I had my first FEC 21st July, my hair started shedding exactly 3 weeks later, but JUST shedding - that’s all. I was in Cardiff for a family wedding and left quite a bit behind in the hotel room!!!LOL.
I get a good covering on the brush every day but you can’t notice it with the untrained eye!
I have shoulder length thickish hair, so I can wear mine up and it doesn’t look too bad at all, a bit fluffy and not in great condition, but bought some of that Aussie Miracle stuff for ‘Weak Hair’ - definitely appropriate for me!
I had my 2nd dose on 13th August and this week the hair loss has slowed down actually. I am wondering whether it might get worse again when I am due my next one as the 3 week thing seems to be common.
Don’t give up hun, it is working for me at the moment, and it was also my biggest fear - God we are a vain lot!!!
Thats wonderful that your managing to keep it, Ive just bumped into my BC nurse(went along with sis as once she told GP about me they said she should go get checked and everything ok thank god!!) anyhow, she came over and asked if I had started my treatment yet(were not close she doesnt call me much) so I said yes and due my 2nd next Wednesday - so she asked if I had had the coldcap and I said yes, so she said oh ok, well it will prob start to come out straight after your 2nd one…
My heart sunk and I figured well if she is telling me its gonna come out well then i should just wait for it! I said well I was gonna get my ahir trimeed this week(my hair is short and spiky) si it would be quite short again for the cold cap and she said she wouldnt recommend getting my hair cut at this stage…so more or less well theres no point!
I came out of there elated that my older sis was ok but also sad that the BC nurse had said that… I am trying my hardest to be positive right now but frightened incase it happens.
I wouldnt care i was sent home from work today to work at home coz I felt pants, I just happened to bump into my sister walking for the bus to go to hospital so i gave her a lift( wished I hadnt bothered now and I wouldnt have bumped into my BC nurse!!!
Anyhow, I guess I should try and do some work…
And yeah, I think I may play that Carly Simon song - your so vain!
Hi Ladies, new to the forum and sorry for butting in.
Just wanted to let you all know that even if you lose your hair, it’s honestly not so bad as you think it will be. I will admit I was more stressed about the hair than the mastectomy!! The usual reasons, vanity (had long red hair and loved it) pity (didn’t want people to stare / point / feel sorry for me) insecurity (didn’t want my 10 yr younger boyfriend to look at me and go yuck) But you know what, yes it is upsetting to begin with and watching it fall out is horrid, also the hurting scalp thing is unpleasant (it’s the same feeling as when you have had your hair in a ponytail for 2 long then let it down, but that only lasts a few days) but ultimately, it was kind of liberating! Plus saves a bunch of money and time!!
During treatments my boyfreind and I had our 2nd anniversary dinner. Sitting opposite each other over a romantic meal I gazed foggily (was a little drunk) into his eyes and and asked… “so, tell me something about me you didn’t know a year ago?”… he looked at me for a moment (also a little drunk) smiled and said “I now know the shape of your head, I didn’t know it before” … we fell about laughing!
Had 4 cycles of FEC, no cold cap, hair started to go about a week after the 2nd one and within a few weeks it was almost completely bald around the back but I retained enough of the side / neck hair and a bit on front up top to almost get away with it, so long as I never turned my back on anyone lol. Took to wearing baseball caps mostly, never was a scarf person personally. Within weeks of my last FEC it started growing back, and now 6 weeks post FEC I can get away with no cap, ok it’s short and if I put shabby jeans and a union jack t-shirt on I may get signed up to some skinhead society, but it’s ok.
Sadly however I have now started round 2 and moved on to Taxotere for 4 cycles, guess it will fall out again but I can cope with it now I know what I know.
Please don’t be scared of losing your hair, just remember, hair does not define us and most certainly cancer does not define us. We are who we are and we are each brave fighters in this battle and from time to time, we will have to wear the the scars on the outside.
Thanks for your lovely post … am getting ready for the loss of my hair. 2nd chemo next Wednesday, same as you FEC and as yet hair ok, but did notice this morning could pull strands out that were hanging below rest of hair … so presuming it might be starting. Am s**t scared about it, but got my wig and 2 hats to help all ready and waiting, but don’t think emotionally I am ready. Your post is so well written and made me realise (although I do know) that losing my hair will be ok, tough at the start, but hopefully once get used to it, I will be OK … here’s hoping.
I am so glad your sister is OK, that’s one less thing to worry about. Your BCN sounds a bit c*ap, mybe you need a trade-in…honestly if you feel you are not getting enough from her support wise you should say something. My BCN and Chemo nurses are just brilliant and i speak to them at least once a week.
You never know, the cold cap thing might work for you - I was gearing up for mine to fail dismally - I bought hats, wigs, scarves and even went to Tesco’s with a scarf on as a ‘practice’ run to see how many people stared and how I felt about it. Was not too bad actually…anyway hang in there, if it does happen you WILL deal with it, you CAN do it.
One of the trial nurses passed by me in the waiting room last time and commented how well my hair was staying on. I was wearing a baseball cap over my big bald patch. Unfortunately, after coldcapping my way through 5 chemos I’m going to have to wing it for the last 3.
On the very first chemo the cold cap was not hugging my head on the top properly so I’ve been on the “slippery slope” since, using bigger and bigger gauze patches, while the rest of the hair has just thinned. I feel certain that if I had used the other sized hat from the very beginning and known that the fit wasn’t right, I would be making it to at least chemo 7 or 8.
mousy, who would do it again (better informed) if, perish the thought, another bout of chemo was required…
Hi Dawn, course you are scared you have every right to be, and everytime I ran my fingers through mine I looked and for ages I truly believed I was going to be the first miracle woman to keep her full head of hair despite what the websites / doctors said…!!! Then it fell out and I was in bits about it but ulimately I am ok now.
You may be upset for days or weeks, you may get over it straight away, whichever way you need to deal with it is exactly the right way to deal with it for you, but you will deal with it somehow. We all have an amazing strength inside all of us, but that doesn’t mean we have to be strong every day, just enough to get through this an move on with our lives BC (beyond cancer)
Hang in there Dawn, and just think how cool you can be with wigs, there are some fantastic ones about… one minute long hair, one minute classic bob… fabulous choices mean you can be who you want each day, including wicked
