Good Luck to Red and Lella - fingers and everything crossed for both of you x x x x
Hi all again, I’m now on day 20 from 1st chemo and hair is falling out! Still no obvious bald patches, and it seems to be still firmly attached to front, back and sides of head, but with a gentle tug to the top of my head and back of the neck, about 10 hairs come away each time. I’ll reckon I’ll eventually have a bald patch and look like Friar Tuck! I go for the 2nd chemo tomorrow and will certainly wear the cap again, I just hope it won’t dislodge a load of hair when it’s taken off to leave a patch!
I’ve been for a wig fitting, but not bought it yet. I’m told I can phone up and the wig can be delivered quickly to the hosp. for collection should I need it, so now in a bit of a dilemma when to do so!
I may lose enough hair to want to wear the wig in public, but maybe I’ll keep enough to be able to not wear headscarves and stuff in doors which I suppose will help me feel more normal.
Keep us posted Red and lella X
Hi Ladies
I have just completed chemo had my last one yesterday, hyped out on steroids today but so relieved it is over, I have posted before about the cold cap and have used it throughout treatment, please don’t despair if a lot seems to come out especially from the 18th day roughly into two weeks of the second cycle, persevere it is worth it.
It will slow down if it’s shedding all over hair does thin but I do have a good covering and a don’t need to wear my wig or scarves, yes I know I still have to go through this cycle and I could lose a bit more, but for me the whole thing as been worth it, only wash hair once a week and comb through gently once a day (basically forget it).
good luck
Ann x
Ann/angels12 - thanks for the encouragement, I’ll persevere, you’ve made me feel a lot better. I wonder if people give up too soon. I can see how they would with hair dropping out all over the place.
Hi Steph
I’m on day 17 now. After some hair fell out 2 days ago I didn’t sleep all night as was so worried that I’d wake up to a pillow full of hair.
Today I’ve noticed more falling out but in 2/3 strands at a time. I have followed advice on this post and not washed or brushed my hair - very glamorous but I don’t care!
I’ve got thick hair in a shoulder length bob so hope that even with thinning it’ll be ok. Have a wig & scarves ready but would give anything not to have to wear them. I had bilateral mastectomy with reconstruction 7 weeks ago but the hair loss is upsetting me more.
Got 2nd dose next Tuesday so am living in hope.
Lots of love & hugs xx
hi all, just got home after being admitted to hospital. kept feeling rough with throat n cold n went t see if theyd give me sum antibiotics but they did a blood test n apparantly i was severely neutropenic only 0.1 so was dangerous so kept me in wed n thurs n gave me antibiotics n injection 4 white cells hav gon back up tday so said could go home but day 16 tday n woke up n wenever i moved or touchd my hair it was everywhere was just the last straw so laid amongst it and cried reading this will hope it settles a bit, back on thurs 4 round 2 if bloods ok . rozita xxxxxx
Hi Rozita
So sorry you’ve had such a rough time - Will be sending you positive vibes for Thursday. Lots of love & hugs xx
Hi Rozita
Just read your post…i was in the same situation as you at New Year. I was in hospital with low bloods and infection, and my hair was all over the place…i cried like a baby!
Just wanted to send you some hugs and support…
All the best for Thursday…will be thinking of you…xx
Hi rozita hope you are feeling better.
On the cold cap front have lost more hair with TAX than with the FEC. Still have a decent covering though and can be disguised with a clip. One more to go so that will be interesting. I have found a real hair piece that you put on the top of your head attached with three clips and your hairdresser can cut it to your style. Think I will invest in that (only £70) rather than the hair system I was thinking of.
Hope all is well for you fellow cold cappers.
Elle x
I’ve just had my 4th FEC and am looking at another 12 weeks of weekly Taxol. (My onc treats at a lower dose over a longer period to reduce side effects). I still have a good covering of hair - everywhere! Arms, legs, feet. Even that little whisker that grows on my chin has made a reappearence. It is receding a little above my temples, and is quite fine under my armpits, but basically it is hanging in there. I never expected to be a woman that hung onto her hair as I was worried about my hair thinning before I was even diagnosed (I have an under active thyroid). However, obviously I can’t put my hair retention down to the cold cap alone. Jane Plant (author Your Life in Your Hands)) reckons juicing is the answer to keeping your hair, and I try to keep up with that. I also take lots of supplements as prescribed by Dr Callebout (an alternative practitioner) one of which is used to treat aloepia in Japan (prescription only). And of course I have been exposed to a lower dose of drugs so far. So I don’t don’t know which part of this cocktail is working but I intend to keep at it all - 12 more cold cap sessions!!). I wondering if anyone could tell me at what stage body hair usually goes?
I kept about a third of my hair on my head through using the cold cap and by using dry shampoo. I consider that a result as I have 8 chemos! If you wash your hair it could fall out quicker. I know it sounds awful, but stick with it and lovingly care for it. My body hair fell out after about the third/fourth treatment but as I see it I didn’t have to shave my legs as often! A year on everything is back to normal but because I’m on Tamoxifen, my metabolism has slowed which just means the hair grows slower so I can live with this. Hope all goes well and hang onto that hair!!
hi all, so much 4 th cold cap so far! i cant beleve how quickly u can loose lots of hair. it started coming out on fri in hospital but on sat i washed it and it was all matted at th back my daughter n i just watched it cum out in clumps when we brushed it. everytime i touch it i get handfulls n more matted clumps yestoday. wondering whether to wash it again today bcos looks so awful curly n stuck to my head. im a hairdresser n feel surely if its already loose then brushing n washing shudnt alter it just bring it out sooner i suppose. it must be follicle that it effects bcos its dead once it leaves the scalp. my head is very sore to touch it has mainly cum out underneath now bob length n have a patch at one side. thought id have another go at the cold cap anyway but has anyone else experienced this n will it settle down or do u think im gonna loose it. wht with my blood levels i think theyv hammered me with a strong dose 7 to go!! rozita xxxxxxx
HI Rozita
Have you just had your fourth cycle with the coldcap and what regime of drugs are you on ?
I finished my sixth cycle a week ago and I used the cold cap throughout treatment (3xFEC and 3xTAXOL),
I started to lose hair around the 18th day and this continued to two weeks into the second cycle, it was shedding all over but didn’t come out in clumps, it eventuallly slowed but obviously continued to shed more than it normally would somedays it was relentless and I would find it stuck to clothing. in food ect,
I never found it on my pillow but would brush it gently through once a day and that’s when I would lose, I only washed it roughly once week and basically forgotit in-between .
I am now still left with hair and although it is thin I do have a decent covering, it as thinned out all over and is thinner on the ends, i normally have thick long hair,
I do hope it works for you and carry on with it. i’am sure it will slow down
Ann x
Hi Rozita! and all! I wondered how you were getting on and it sounds like you’ve had a rough time 
I had my 2nd epirubicin last Friday so that makes it day 25th from the lst cycle and I’m going to order the wig I tried on a couple of weeks ago. The stupid cold cap doesn’t fit snugly on top of my head, therefore the hair’s quite thin there now and wadges of hair come away if I run my hands through it. It’s still quite well stuck to front, back and sides, so am not giving up on cold cap yet. I tried putting a brownish coloured eyeshadow on the bald bits which do help to cover up a glaringly white scalp. What I could do with is a toupee really, rather than a full wig!
I agree with Roz in that if the hair is loose, it’s going to come out sooner or later anyway, so not brushing it just delays it eventually falling out at a later date??
I wonder if the Paxman system is being improved all the time, it’s just that we get stuck with out of date machines with the NHS? >
hi all, thnx for ur comments ann just had 1 chemo got 4 EC then 4 TAX. going for 2nd chemo thurs just hoping bloods ok tmoro they were great in hospital n mentioned maybe injections after chemo 4 white cells but on last day got a rude doctor who just stuck her head in doorway n said ur not netropenic anymore u can go home as long as uv not had a temp inlast 24 hours (which i had n she obv cudnt b botherd t check anyway) n left. didnt say about bloods or injections so will find out when i see onc on thurs. today feel so fed up with everything going wrong feel amess n just told my boyfriend t stay away n gave him grief. think ill just eat n wallow. is it 2 early 4 adrink!!! aaaaaaarrrrrrggggghhhh thts better rozita xxxx
Hi Steph
Your unit should have different size caps to get a better connection with your scalp ?
I know here in colchester they have blue and red ones
Ann x
The 3 sizes available were tried on my head and the smallest one fitted best, but I think unless it’s yanked tightly down, there’s still a small gap between my head and the cap. What it needs is a wide strap that goes all the way around the top of head and under chin (like a form of torture). It seems the chin strap isn’t enough to bring it down tight enough - not on my head anyway!
ROZ! Hang on in there! hugs, etc XXX
Ive been using the penguin cold caps (my hospital “dont do” the cold caps at all, so Im having to hire in the caps myself, pay for them and my sister puts them on + takes them off) and they seem to be more adjustable than the paxman type, with 2 straps that go over the top (just as Steph feels she needs) which makes it really hug your head. Ive now had 5 out of 6 taxotere and really havent had any noticeable hair loss at all, fingers crossed it will be the same after the last one next week! I lost all my hair 4 years ago when I first had chemo, and know exactly how it makes you feel.
Ive read success rates of between 20% - 90% with the cold caps, so very variable. I do think some of the success is also due to how long you keep the cap on after the chemos finished : I keep it on for …wait for it … three and a half hours! (I go home with it on and carry on there)
Someone needs to hurry up and invent a system that is cheap, easy to manage, not uncomfortable and works!!
hi all, had 2nd chemo on thurs had quite a lot of hair loss b4 but still went 4 it. the pain th first few minutes nearly put me off tho n was told i cud try an extra hour so 3 n half hours. but just washd my hair after a week n was all matted again cud hardly get th comb or brush thru tht mite have t cut it. cried lots n filled my table with hair v fine now see wat happens next time …rozita xxx
KatieFizz - a pity my hosp doesn’t do the penguin type then. Obviously someone in the designing of it realised it needs the strap that goes over the head.
roz - you’re just about a week behind me. I had my 2nd chemo a week last Fri and hair has thinned out all over, but now have quite a bald patch on top of head like male-pattern baldness, and have got to the stage where I don’t want to go out without a wig. The remaining hair on top is so easy to pull out, it’s only a matter of days b4 it all goes. It’s the WORST aspect of chemo. It makes you think twice about going out. If this carries on, I’ll look like Mo Mowlam or worse - Max Wall!
I wish I’d hired the penguin cold cap. I don’t think it’s worth it now as the damage has already been done. I have 2 more epirubicins to go and then 4 CMF on which, I am assured, hair grows back.