Hi all,
Just a quickie had first FEC 12 days ago and so far hair staying put, although not exactly lovely to look at as told only to wash 2 x weekly. Does anyone know what the average time is for it to start to fall out and if it hasn’t fallen out by next treatment is it likely not to?
Hiya
I used coldcap. Mine started to thin about 16 days after FEC#1…it was coming out a fair bit for about a week, then stopped. Then pretty much every 3 weeks it has another little ‘shed’ then stops again. Consequently it has thinned out a fair bit and I have a very small bald patch on the crown of my head. Just coming up for chemo #5 (3xFEC and 3xTaxotere) so am hoping it can hang on in there.
Best of luck, hope it stays put for you.
Hugs
Ali
x
Thanks Bestie,
I hope so to. Its not that I am vain but I have a 2 yr old and 9 mth old little boys and the eldest got really upset when i had it cut (17inches) so I think he would freak if it all fell out. Although wouldn’t it be lovely if that was our only worry. I hate this horrible disease and cant stop thinking i wont see my little ones grow up. Still early days and scared as cannot find much positive info re triple neg.
Sorry to moan late on Sunday.
Take care
C
Hi zjlove
I’m also on FEC and using the cold cap. I had my 2nd FEC on the 27th Sept. My hair was ok just lifeless due to not using the hairdryer and hair products etc. However last Monday on the 1st October when I washed it and combed it afterwards you could have built a birds nest with what came out and now I dread touching it. My hair is/was quite thick so I can afford to lose some bit I am now in a dilemma whether to carry on with the cold cap or have it shaved off. There are some strands on my pillow in the morning but I really do dread washing it. It is my birthday today and I just wanted it to last until today. At the moment it’s not really that noticeable but I’m just sick of hair everywhere.
Love Angela
Hi C
Don’t worry about the moaning, we all need it sometimes. I think I posted on another thread you started about Triple Negative…I am also one of them!!! It is not all bad stats - I try not to dwell on that too much, just get through each stage as it comes. It is scary stuff, but I don’t think we are that much worse off than our HER+ buddies. Chin up gal!!!
Angela - Happy Birthday… I know what you mean, I was desperate to hang on to mine for my brother-on-law’s wedding in August (and that was the week it started shedding)…luckily it hung on so glad yours has too…
Love and hugs
Ali
x
HAPPY BIRTHDAY ANGELA.
Sending you birthday wishes. Gone are the days of wishing for a new pair of shoes!! Who would of thought that new hair or boobs would be top of the list. Thanks for reply I will let you know how i get on, I haven’t even looked into wigs, Does anyone know any good web sites?
Thanks again and just think this time next year your birthday will be perfect.
Thanks zjlove for your best wishes. It’s funny, last year it was the big 40 but I can honestly say that whilst I have had a fantastic day today I really cant’t wait for when it’s my birthday next year. Hopefully, all this will be behind me and I wil throw the biggest party!!
Good luck with the hair. I visited a local shop and looked at wigs when I knew I was starting chemo so that I could get my hair colour to match. Trouble was, I only really did it half hearted, think I was in denial so I made the decision that I will go back to the shop to look again. At the hospital where I have my chemo there is also a headstrong place which I should look at for ideas etc. I can cope with the treatment but loss of hair is a real issue for me. I feel I might as well have BC tattooed on my forehead!!
Take care
Angela
Thankyou Ali for your birthday wishes as well. Roll on to my 42nd birthday!!!
Love Angela
Hi zjlove
You should ask your chemo nurses what they think your chances are of keeping your hair according to the level of epirubicin you are on.
My chemo nurse warned me that the cold cap probably wouldn’t work for me as I was on a high dose of epirubicin (everyone gets a different dose according to their height/weight ratio). She was right. Mine started to shed about day 16 after my first FEC and I eventually lost most of it. I shaved it before FEC# 2 as it was so patchy it made me look sick.
They say it works in one in three cases so hopefully you will be one of the lucky ones.
Good luck x
Lola
Hi Ladies,
I just thought I would join in on this one. I chose to use a cold cap when I first started my chemo. However after my first cycle I started reading about there use and found to my disbelief that there was some evidence to suggest the use of cold caps could lead to scalp metastases. There seems to be only a remote risk, as one study which included 7800 women with breast cancer found that only 2 had a recurrence on the scalp. For me even though the thought of losing my hair was devastating, this very small risk was still too great. I decided that during my next and subsequent cycles I would decline the use of a cold cap. I actually asked my onc about this and he told me he knew nothing of it, yet the book I located this information in can be found on a lot of hospital wards (The royal marsden hospital manual of clinical nursing proceedures. 6th ed. p656). There is a recommendation in this book that that potential risk of scalp metastases be addressed and should be discussed by health care professionals and patients.
I hope this doesn’t worry anyone and remember its individual choice, I was just too frightened to continue with a cold cap. I hope they are successful for all who choose to use them
Take Care and Good Luck to you all.
Love Judy X
Hi there,
I thought I’d add my tuppence worth to what JudyG said in the above post.
My oncologist, here in Ireland, does not allow the use of the cold cap full stop. He said something along the lines of that although cooling the scalp during chemotherapy reduces the amount of chemo drugs reaching the scalp, therefore possibly reducing the risk of hair loss. It may also reduce the effectiveness of the chemo drugs in reaching the scalp and killing any cancer cells lurking about. Therefore, you could be at risk from a recurrance/metastasis. He trained in America where as far as I know the cold cap is also not routinely available.
Like JudyG, I hope the above doesn’t worry anyone either and like JudyG also said, it is down to individual choice but it is good to be informed. Even though the cold cap wasn’t on offer to me in my hospital anyway, what my oncologist said was enough for me to be wary of it.
all the best to all, xxx
Hello to everyone - this is my first posting - although I’ve been reading these forums for a while, since being diagnosed in July. I have been moved, inspired and humbled by the support that has been shown to one another.
I had a WLE, and two further re-excisions to obtain clear margins. I have no lymph node involvement and am starting chemo (FEC) on thursday as adjuvant treatment.
I have thought long and hard about the cold cap issue. I have considered the issues mentioned previously (ie cancer cells hiding in the scalp that might be frozen and not zapped) as I read a book by Deborah Cohen (Just Get Me Through This) and her (American) onc advised against scalp cooling for that reason.
However my onc said that this possibility is so unlikely , and that she recommends its use and wouldn’t if she believed it to be unsafe.
But I am aware of the discomfort of wearing it, the length of time after the chemo administration that you have to sit with it on your head, that it isn’t always successful, and that you have to be so careful with your hair if you manage to keep it that it all seems more trouble than it’s worth.
Don’t get me wrong, I am as vain as the next person and know I will look like a goblin with no hair but I know that if I should ever get a recurrence , I’ll always wonder if it was because the chemo wasn’t able to get to every cell in my body.
It’s the best time of year to be without hair, I’m off to choose a few hats tomorrow. And, it will grow back - I’ve been thinking what if chemo made your teeth fall out - or your face erupt in boils or a hundred worse things!
At the end of the day it’s an individual choice but I am going to cut short, cry, then get on with it. Not quite bald and proud, but trying to be!
PS I’ve signed up for a Looking Good Feeling Better workshop in November so once I’ve been taught how to draw on eyebrows without looking startled, I’ll be well away!!!