Due to my increasing bald patch on top of my head, I felt quite fed up the past few days, but yesterday hid patch quite well by daubing brown eyeshadow on scalp and doing a comb over. Just thought tip might be of use for others with patches.
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.
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
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!!
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
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
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 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? 😠
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
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
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!!
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?
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.
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
So sorry you've had such a rough time - Will be sending you positive vibes for Thursday. 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
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
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.
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).
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
Good Luck to Red and Lella - fingers and everything crossed for both of you x x x x
Hi - I'm so pleased I've found this forum. I had my 1st FEC just over 2 weeks ago and tried the cold cap as the thought of losing my hair is unbearable. Saw my oncologist yesterday who was pleased to see me sporting a full head of hair as he said without cold cap I would have started to lose hair.
However I have just been sobbing inconsolably as I have just run my hand through my hair and quite a lot fell out. Decided to look for posts on hair loss and was so relieved to read about you ladies who have lost some hair but not all, so will continue to keep everything crossed.
Liked advice of not washing or brushing hair too regularly - will have even more time on my hands now as I usually spend hours washing, blow-drying and straightening. Don't care if I look like the wild woman of borneo as long as I can keep my hair.
Love to everyone xx
I had my first chemo last Thurdsay 18 Feb.
Had the cold cap 1/2 half hour before and 45 Mins after.
So in total had on for about 3 hours.
It was not to bad to start with but the cold was beinging to effect me but the tought of losing my hair was to much. So i did not take it off.Fingers crossed
K, Thanks for the information,
I too have been using the cold cap, I have my last chemo on wednesday, had thick hair to start with and I would say i have lost about 50% of my hair, but at the moment I don't need to wear my wig or scarves,
I will see what hair I have left in a few weeks time and hopefully will be able to leave it to thicken up.
Steph 10, good luck with the coldcap.
I'm on day 17 and hair is coming out at the base of the skull area around my neck. I'm not surprised as the cold cap didn't come down that far and that area stayed warm. Doesn't seem to be coming out elsewhere on head yet, so I live in hope...
I thought I'd add my friend's experience of using the cold cap. Her hair is (was) 4-5" long and very curly, but the nurses didn't suggest she get it cut shorter before her first cold cap session - just that she needed to dampen the hair and smother it with lots of conditioner. She used the Paxman cap but said she barely felt the cold on her head... it was a little cool, but not the extreme chill she'd been expecting. Unfortunately, she lost most of her hair on day 18 after first cycle and, in hindsight, thinks she should have cut her hair short (to 2") beforehand. But who knows, that may not have made any difference.
For those ladies considering hair systems, you might like to have a read about feedback from ladies who wear them due to alopecia. Alopecia UK run a good forum. In short, Whitecliffs have very poor reputation, so please do your research throughly before parting with ££££. There are a lot of unscruplous companies cashing in on vulnerable women seeking hair replacement... but there are also some great ones.
One of the wig companies recommended on that forum is based in North London, and they've just made a fantastic wig for my friend. We met them on Monday and she received the finished wig yesterday. Pricey, but absolutely stunning quality hair. They picked the most beautiful colour hair (top quality european) and copied her style from photos she left with them. We're going back in a couple of weeks when she's feeling stronger (had her 2nd FEC on Tuesday) so that they can tweak the wig a bit, as the front needs a bit of thinning and shaping to make it perfect. But really, it is so incredibly close to how her bio hair looked (and a nicer colour!) that no-one would ever know.
I looked into the hair-enhancement systems too before I started chemo and was quite impressed with them as the results really do look fab. I also know someone who uses it (lost hair due to stress, not cancer) and she looks fab all the time!!
I went to a place in Birmingham (Whitecliffs) - its tricky because it is a business and they are selling to you, but this company is endorsed by the doctor from daytime TV (is it Chris someone?) and also by a childrens cancer charity, so my gut feelings was that they are an ok company, but obviously its down to us as individuals to decide. In the end I didnt go with that treatment - I spoke to a tricologist who advised against those systems as she said it can damage the hair follicles as they are glued (or suckered) onto your head. In the end I went with the cold cap, which (touch wood) is working very well for me. The hair enhancement system was going to cost about £800 for 6 months, £1500 for 12 months, you could pay monthly>
Anyway, just a bit more information for you which I hope has been helpful, but more likely to just be more confusing for you & give you something else to think about!
Good Luck with whatever you choose, and with your treatments,
There are a few places that do this technique. Manchester, Liverpool and Hemel Hempstead. I am sure there will be more out there but haven't managed to find any others yet, although I can go to any of them as live in the Midlands but originally from Liverpool so was thinking of making a visit to my mum and doing both the 2 up north when my treatment is finised. Look at this website http://www.hair-solved.com. This is the one I first looked at. I don't think they recommend normal hair extensions because of the weekness of your hair and all its been through. This sounds a much easier way to do it and the video is quite impressive. Thats why I thought I would do each salon so I can compare as don't want someone just out of college messing about with it. Haven't gone through this to make a hash of it now.
Am washing my hair weekly like you and do hardly anything to it hence looks awful.
Hope all goes well next week.
I too have completed 3 FEC, I am now on Taxol and have my last one next Weds,
I have been using the coldcap and have noticed a significant ammount of hair loss from the second cycle of Tax , it as really thinned although I still have a fair covering, but hoping that it will hold out till the end of next cycle, which will be the last
Have you been washing your hair weekly,? I left mine for a few weeks and washed it last thurs and I lost loads, I don't know whether that was a good thing or not , any advice would be grateful, ellie that technique sounds interesting do you have any details, I was thinking also about a weave or extensions if I have any left by the last cycle.
thanks Ann x
I am a day away from my second TAX and have to say have lost more hair this time than with the FEC, this may be down to the cold caps though as they do come in different sizes and I get given whatever. I will press very hard on the top of my head tomorrow. I was reading a very interesting technique called hair enhancement which covers your head with a matted fibre and they pull your remaining hair through then thread hair extensions into it. It can last up to 18 months and you can wash and style as usual, I have emailed several places for rough costing but think it would probably be quite expensive however may be worth it to allow my poor little thin bits to recover and 18 months of good hair days might be nice after walking around with a birds nest on my head which isn't a good look. I have also ordered a trial size of a fibre hair thickener (sucker for infomercials) has anyone tried that. Will keep you posted of hair developments.
p.s. I did go completely bald absolutely everywhere else, except for eyelashes and eyebrows which didn't go. This was most odd, and it has all now grown back, unfortunately!
I think I posted earlier on this thread, but just a word of encouragement for you all out there. I had 4xFEC and had the cold cap each time and kept my hair. It did fall out every time I brushed and washed, particularly on cycle 1, all over, but most noticeably from the crown and one particularly odd spot over one ear! I didn't have to wear a wig or scarves except when it was cold or to cover up the manky greasy hair from where I didn't wash it except once a week.
The cold cap (I used Paxman) doesn't work for everyone, but it did work for me and I would always suggest you give it a go.
Now, 8 weeks on all the hair is growing back, I can't see my crown or the bald bit over the ear at all and there are lots of little hairs. It's grown back exactly as before - same colour and just as straight (boo - I wanted curly hair for a change!), maybe a bit more grey in it, not sure about that.
Hi Steph, as you know from my previous posts I managed to keep all my hair with the Paxman cold cap, and it was strange when I realised one day that the hair from the rest of my body had dissapeared! It was a well weird experience! I wonder how long it takes to come bacK? I wouldnt mind it staying away for good:-) ha ha xx
I think chemo would be much more 'doable' without the dreaded hairloss. I feel so well 10 days post lst chemo (although I realise the chemo could gradually make me more and more tired as it goes on), that it's becoming almost unbelievable that I will certainly lose body hair. This must add to the shock when it actually does happen. There's no getting away from the hair loss and therefore a constant reminder you are ill when it could be possible to forget it for a while.
I have been reading all the posts with interest. I tried the cold cap (freezer variety) and didn't find it too bad. The nurse very kindly gave me gauze to wear on my forehead and both ears and it really helped the brain freeze. I am only on day 17 after my 1st FEC so know it's early days but still have a full head of hear. I expect after the next FEC will be the moment of truth. If it doesn't work I am resigned but think it's worth a try.
One thought for those of you who have thinning hair or patchy hair - there are some marvellous wide headbands that might hide the thin bits. Has anyone tried them?
Good luck to all cold cap users! I wish i had cut my hair short before i tried it with my first FEC, instead of going in with my thick curly hair and expecting it to work.
I think the cc is brilliant if it works..how i wish i had cut my hair, as mine departed a long time ago and i hate it..
All the best
OOOh, thats a shame, theres nothing more comforting than a lovely hottie with a cosy fluffy cover....keep warm n freeze that precious hair 🙂
I am on day 13 after my third FEC and still have a very full head of hair. I had it cut pretty short and do very little to it - wash it very gently once a week, but don't even brush it. I have lost some hair, keep finding them on my keypad, but nobody would notice except for me. So the cold cap has worked wonders for me so far. I will switch to Tax for next three sessions, and my onc says it is slightly milder on hair than FEC, so fingers crossed.
hi all just been reading thru the column n wondering how everyones duin with th cold caps or not! had ist EC on thurs 11th n had th paxman cap yes was awful brain freeze 4 about 20 mins then just uncomfortable tht th straps under th chin were bad must have looked like a chipmunk haha it just gets better dusnt it. hoping 4 th best but under no illusions told not t wash 4 48 hrs thn just once a week so have resorted t just scrunching what curl iv got n going 4 the wild look around the house instead of ghd straight aaaahhhh missing them already!!!! have got a fab monofilament wig better n longer thn my own so will wear when going out, but when tried it keeps slipping tht wud try grips as long as dont show but has anyone got any other tips? good luck maisie 4 ur session think u said 17th! rozita xxx
Hi there ladies;
I thought I would add a comment to this forum; as I did initially want to try the cold cap; but like someone earlier said was dis-coveraged! - however - if I was again back at day one I would have tried it! I am now nearly finished my chemo; only one more to go!! - I went last month on the look good; feel better workshop; which is brilliant, and I advise anyone not already been to go! Anyway two ladies that had already had 3 x FEC had used the cold cap, and yes their hair was thin, but it is still there, unlike me who is bald and wearing wig/hat constantly! I cannot even bear to see myself bold let alone my husband/kids! - I wish I'd given my own hair a chance!
hi rozita was due to have chemo day b4 you, but has been delayed till next wed 17th because of scan appt ,wasnt very happy but cant do anything about it .good luck for thursday.xxx
hi all, hav just been to assesment today n hav been measured 4 cold cap. had nightmare with bloods wouldnt part with much. hopefully better veins on thursday. wont let me take my hot water bottle viruses n stuff, will will just wrap up. rozita xxx
hi ,im starting chemo on 17th feb im booked in for cold cap its good to hear that its not to uncomfortable , im taking a good book to read as ive been told its a good 2 to 3 hours extra wait , but if you get good results im sure its worth it .! will keep you posted chris. xx
I found the lack of support for the cold cap quite off putting too, but i think its because they do not want to give ladies the impression that it will definately work for them, I do seriously think it depends on the type of hair you have and the success can be very hit and miss. However, I do think they could be a bit more encouraging! I am so pleased I kept it up, every session I swore I wouldnt do it again! But now I am at the end of chemo I am so pleased I did.
Good luck and I hope it is sucessful for you 🙂
Had my first chemo of epirubicin on the 5th Feb - last Fri - and tried the Paxman cold cap and it really wasn't as bad as I thought. As someone else said here, it's uncomfortable for about 10 minutes, after that it's all numb and you can't feel anything. The chemo room was very warm but I wore a thick jumper, jeans and boots and kept my coat on for the duration and I'm sure that added to the 'comfort'.
The nurses covered my hair in conditioner to stop ice forming causing my hair to stick to the cap pulling it out when the cap's taken off. The cap was cooled down for 3/4hr before it was put on, I had to wear it for 3/4hr before given chemo and then wore it for 2hrs after chemo finished. Boring and tedious but watched 'Rain Man' on my portable DVD so bearable. I usually wash my hair 2-3 times a week as it gets greasy, but now only combing it once a day and will wash it only once a week. Already it's plastered to my head and looking pretty manky - at this rate it will be a relief to wear a nice clean wig!
Trouble was, I get the impression from the nurses that it isn't really successful. There's no comments from them to say that yes, some people save at least 50% of their hair, more like 'Well give it a go, anyway' which doesn't inspire me with confidence, but I'll use it again next time - that's if a load hasn't fallen out by then!
I had my hair cut short last week (which was a low point) in another attempt to hang on to it.
Hi, I'm new to this forum. I had my third FEC on Monday and have been reading this thread with great interest. It is very reassuring as I have been expecting every week to be my last with hair. Now I feel there is hope. I have been reluctant to book social engagements too far ahead wondering whether I will really want to go in one of my ludicrous wigs or in a turban with penciled brows. Maybe a DVD at home would be more fun. I have been using the cold cap and so far it has helped. I had quite a bit of shedding to start but it has slowed now. I decided not to brush it for as long as possible after my last treatment and am quite enjoying sporting the wurzel gummage look at home. I will probably wear a hat for the school run tomorrow.
Reading this thread makes me wonder if keeping the cold cap on afterwards for longer works better, although by the time treatment is over I can't wait to get out and get home.
I am also interested in when people lose their eyebrows and eyelashes. Mine are still hanging in there but obviously the cold cap isn't going to save them.
I have one more treatment of FEC and then 9 weeks of weekly taxol.
Hi, I recently looked into this as was also dreading the hair loss in a big way. I was ready to start the cold cap, but in the end it wasn't booked in properly for me. However I've been told that it would only work with the first part of my chemo and then when I change type of chemo onto the next stage it wouldn't be available anyway, so I would lose my hair in the end anyway. So all my worry and research about it was really a waste, because it would've only lasted for the first lot. I've now found a perfect wig and just waiting for the 'fall out'. Good luck wich whatever you decide.
Got through second treatment on Thursday - decided not to use cold cap, by then I had a very thin area on the top of the head, so was close to the point of no return wearing wigs/scarfs anyway.
I was greatful for this decision at the treatment was harder than last time as my veins were very sensitive and onc had decided to give me an extra litre of saline afterwards. My arm still feels quite tender.
But, having changed my medication I am pleased to say that I have had no nausea at all. More tired at this stage than last time - I think that is the Lorazepam so I may drop that during the day after today.
Speak to you soon
Chris x x
Chris - good luck for tomorrow
Hi everyone, thanks again for the encouragement and advice.
Hair visibly thin on top now - can just about get away without wig/hat but won't last much longer if it continues to fall out at this rate. Still haven't decided whether to use cold cap tomorrow - doesn't seem so much point, but I expect I will decide when I get there.
OH away at the moment - it's a race to see who will have the most hair when he returns on Saturday!
Katie - thanks, I had been feeling as if I was been the devil and deep blue sea on this - think I prefer your way of thinking.
All the best