Thank you so much for your answers. I was feeling down today but it looks like i may still have hope.
God knows why i am tugging my hair i just want to see if attached and then get upset if it does!!!Crazy i kniw!
Well my next chemo is Fri and i will persevere with CC as long as i have hair by then.
Thank you all soooo much xxxxx
I have had 3 tax and between week2-3 of first tax lost some round hairline but a few weeks later it Was growing back. My head is quite often painful and have thinned a bi but not hat noticeable to others.
Hi lavendersun, my scalp got sore and tingly before I had my biggest shed of hair, but then that was it. It kept moulting throughout but the sore tingly feeling went away, and the moulting was much less (still hair fell out every day tho). I agree with summer71 - don't pull it! I know it's slightly addictive ;-) but try not to. Perhaps wear a hair band to keep it out of the way and stop yourself from just seeing how many hairs come out if you put your fingers through your hair.
By the way, even though I'm talking about a big shed of hair, I kept most of it and people didn't notice that I had lost any unless I pointed it out to them thanks to changing my parting around and wearing Alice bands etc.
I know my scalp has had tingly moments but not really painful but if you read on some of the forums some ladies have said it hurt when their hair fell out so fingers crossed for you that the pain isn't too bad.
I think that the word tug and cold cap don't go hand in hand if I tugged my hair it would pull out for sure - if I've caught it in my scarf for example more does come out so just be really gentle- my chemo nurse said it would come out in clumps if the cc wasn't working and atthat point she says shave it off! She's very pro cc and recons it's a 50/60 percent chance it will work. I'm day six post fec2 and having been out and about today no one could tell the difference on my hair and I feel like the amount I have been shedding must mean I'd have none left but just goes to show how much hair we have... For now good luck xx
may i join in and ask a quick question please.
I am on TC chemo regine and using the CC. Today is day 17 of my first cycle i know peoplw say day 18 serms to be the day you will reslly start loosing. Today and yesterday my scalp along back hairline and some of top of my head is sore and tingly. If i tug hair around hairline i can tug it out. Im really worried and would like to know did any of you whi kept some hair during Cc treatment get tingly too oris thus def game over for me?
Would love some feedback. THANK YOU X
I recommend Faith in Nature - tea tree conditioner. It was recommended by the hospital and you should be able to get it in health shops or maybe Holland and Barrett. It's not a leave in conditioner, but it smells lovely and - so far so good - I don't want to tempt fate! it has worked for me ! (I'm 17 days post fec2 and havof still have a good head of hair).
The conditioner is for eyelashes and brows and I think it really helps. I'm still using it but only every 2/3 days and my eyelashes have never been so long!! Wish I had used it from the start as one eyebrow is alot thinner than it used to be but at least its still there. I know you can buy other eyelash treatments but I thought this was a good price (£11ish) and its lasted me since October.
Have a good weekend
Thanks all great advice Jus
I think the 'keeping my hair focus' it's partly having something to think about other than the BC and I think it's only when I'm bald that it will hit home that I really am living with this decease so I'll keep shedding around theplace like my dog and she how it goes!
Definately less shedding today than last two days though and not bad SE's off the fec so bring on round three.
Good luck ladies xxx
Lollo- is that malava conditioner especially for eye lashes/brows?
Lots of good stories here! My hair started growing back after my 3 FEC and during my 3 Tax. I had heand that if you keep it for FEC then you should be ok on Tax. I lost all other hair over the course of chemo though, including eyebrows and eyelashes, though makeup could help with those.
For me the shedding was worst after my 2nd chemo and then kind of levelled off, so I shed hair throughout but not as much.
I've been using the cold cap and so far had 3x docetaxel (T) and 2xFEC (still got 1 more to go).I have always had long thick wavy hair that I washed and straightened every day so the thought of losing it really upset me. Despite always feeling the cold normally I decided I had to try it and if it didn't work at least I'd had a go. I'm pleased to say that I still have virtually all of my hair left although it has thinned at the back but this is under the longer lengths of hair and not noticable, I think this is because the cold cap doesnt reach that far down. There is also a very small area on the top that thinned very slightly after 2nd docetaxel but it was because the cap wasn't on tight enough and that has started filling in and is about 3cm long now.
I had it cut into a shortish bob and dyed back to its natural colour before I started chemo. (I didn't want to end up with dark roots).
I use Simple shampoo and conditioner which is ph neutral (quite cheap from Wilkinsons and Home Bargains).I was told by the nurse not to use baby shampoo as it is not ph neutral.
I wet my hair thoroughly in the sink at the hospital and also take a small spray bottle to wet any bits that aren't completely wet then gently comb with a wide toothed comband then completely smother hair in conditioner. (I take my own conditioner).
I take a couple of paracetamol as soon as I arrive at the unit and take a flask with a hot drink to have ready as soon as they put the cap on. I also take a charged laptop so I can watch a favourite DVD (if you know the plot well you can dip in and out when the nurses come to talk/change drip/administer drugs etc without losing the thread of story). I busied myself setting this up in the first 15 mins of cold cap and concentrating on that helped to take my mind of the cold. This time is the worst but it does wear off and I it found bearable.
Because I always feel the cold I wear a thermal vest, skiing thermals under my jeans,thermal socks, a fleece jacket and take my own fleece blanket (some of the other ladies take fleecy dressing gowns) and a flask so I can have a hot drink whenever I want, rather than having to wait for the tea trolley to come round.
I take a hat to go home in and then wash my hair gently in tepid water after 48 hours. I use conditioner and dry it with the hair dryer on the cold setting. I use a round brush to hold the ends in place while I dry it but I don't pull the brush through my hair often. (At first I just let it dry naturally but it just made me feel a mess, doing the above and treating it gently made me feel better and because it looked like normal, more determined to keep going with the CC). I use a silk pillowcase and only comb it once a day.
I wash it twice a week and hair does shed but when I washed it everyday pre chemo I always had a certain amount of hair coming out so I don't worry too much as I'm probably only losing a little bit more than normal.
When I saw my consultant she said as I had kept my hair through the docetaxel I would probably keep it through the est of my treatment. There are some statistics on the Paxman cold cap website showing the percentages of people who have kept their hair during FEC and docetaxel that I found useful.
Although I know it doesn't work for everyone I thought it was worth a try. I went into it with an open mind. I prepared for losing my hair by getting a wig, hats and scarves, I also watched videos on utube of how to tie scarves and practised a bit.I prepared to lose my hair and thought that if I kept any that would be a bonus.
I hope that this might help a little bit and I know everyone's experience is different, even if it doesn't work for you it will grow back afterwards. It might also help to look at the posts of the amazing people on the forums who have lost theirs or decided to not use the CC who are strong supportive people with positive attitudes.
I hope it works for you,
i was told that because i was getting tax after the fec there would be no point in using the cold cap as tax makes your hair fall out.
i did not use the cold cap and just shaved all my hair off to a skin head but the hardest part was when i started the tax and my eyebrows and eyelashes came out, i feel that was worse than loosing your hair.
i would prefer to have no hot flushes than have my hair back to be honest as my hot flushes are a nightmare.
i dont know if this is true about the tax but thats what i was told at the hospital.
Hi Summer & Aml
I know the shedding seems neverending and for me it didn't stop which was very worrying. Like you I thought that I would be completely bald by the next chemo but it is surprising how much hair you have. Everytime I combed my hair I was shocked at the amount that came out but as my earlier post said I did keep about 30%. If you can avoid touching and combing then I would but I know that's easier said than done. I have been wearing my wig since before my second chemo as I didn't want to look any different to people and very few people have noticed even those that knew I was having treatment. Underneath the wig my hair was a real mess and maybe some would say why bother with the cc but for me it meant I was fighting to hold on to some kind of normality and a chance things would return to normal quicker which I believe they have. I will carry on with my wig until my hair is a bit longer and I am able to colour it. As I lost hair from everywhere else I'm sure I would have been completely bald. My eyebrows and lashes started to thin by my third chemo so I started to use a conditioner from boots which I think is called mavala and costs about £11. You brush it on every night and for me it worked and my eyebrows and lashes held on which was a real bonus.
I was 47 when i had my treatment my hair has always been really thick,like you i was upset about the effect of chemo on my hair. I used the cold cap and kept all my hair,It went a little thin around the edges where the cold cap didnt cover but most people didnt even notice. i lost hair from everywhere else so without the cold cap i would have certainly lost that hair as well. I also looked after my hair using a really gentle shampoo and not washing it for a couple of days after treatments.If you can stand using the cap i would definately say use it
Hi lol/Jlh and Jennifer
Good to hear stories and get encouragement
Did you find the hair shed more the days after chemo and then slowed shedding rate as mine is the worst now 3 days after fec2 and I'm thinking at this rate its going to be gone by fec 3 !
Im then onto docetaxol x3 - is that worse or better for hair loss. Anyone know ?
Great support from you all x
I had my second set of chemo in 2011 (2 x Tax and 4 x FEC) and used the cold cap throughout. My hair did fall out and thin but I could wear a hat with some wispy bits and used my wig if I wanted to look a bit 'posher'. I agree that it tends to thin more in the middle and top and leaves you with more around the edges.
For me it felt better than when I had Chemo back in 2004 and didn't have the option of the cold cap. This time I had some hair during treatment and I think it definitely looked normal more quickly after chemo had finished. Everyone is different and copes in different ways so see how you get on.
You have to make sure it is on very tightly to get the best effect. I got used to the cold and even fell asleep. Chocolate and a nice big blanket helped!
Hope it works for you.
Hi all you fellow cold cappers
Thought I would l would let you know my story with the cold cap. I had 6 FEC and used the cc with them all. Like a few of you have mentioned I just wanted to keep some hair so I would feel better and bit more like me even though I had excepted that I would lose my hair. I bought my wig, scarves and hats so I was ready should it happen. My hair started shedding about 14 days after #1FEC and kept on shedding till my last. I only coped with this by wearing a hairnet all the time so that I didn't have to look at the hairs everywhere. I probably lost about 70% but managed to hold on to a friar tuck look which when I wore hats I had hair showing. I dithered between the "shall I shave it and give up?" & "some hair is better than no hair" dilemas but as I didn't suffer any pain with the cc I carried on and now i'm glad I did. I finished my chemo in December and although most of my hair went I now have a fairly thick 3cm (at the shortest) crop with longer bits maily at the back. I treated my hair very very gently only washing it once a week at the most and used a gentle shampoo. I used a wide toothed comb to comb my hair and left it untouched as much as possible. It has come back much greyer than I hoped but at least it is coming back. Hoe my story is of some use to you especially if you are thinking of stopping the cc. I believe that my hair has grown back quicker as the follicles weren't damaged but unless I only cold capped half my head and left the other half we will never know. Good luck to you all and happy cc!!
Maybe its a bit early for me to say but had FEC1 on the 12th February. Due for FEC2 on the 5th March (next Tuesday). My hair is find anyway but I have noticed no loss at the moment. Can't do much with hair as have to use mild shampoo and conditioner and no hair products or dryer and straighteners as I usually use all.
Going to persevere with the CC.
Love and cuddles to all you great ladies
Thanks Swoot for positive feedback I hope the cap continues to work for me it makes life more normal feeling for me and my little ones
Aml46- we are obviously on the same chemo timings so good to hear your progress - just washed my hair very gently and noticed more shedding but reading others experiences this seems normal and hoping it slows up but good news is no clumps out as that's the point I'll reach for thehusbands hair clippers
Now got my mind thinking fec3 is halfway point so if CC gets me there I'll be chuffed.
Keep up the positivity
I completed 3 FEC and 3 tax on the cold cap and it worked really well for me. It did get colder the more chemo treatments I had, but my hair also started growing back after the FEC and filled in any thinning patches!
I know a few other girls who have gone through the cold cap successfully from the Younger Breast Cancer Network on Facebook. A really friendly group of girls with BC. Check out http://www.breastcancercare.org.uk/community/forums/younger-women/facebook-network-younger-women-diagnosed-breast-cancer for more info.
I had FEC2 yesterday as well with cold cap.
Hair has been shedding since i got home but i am hoping it slows down and lets me get to round 3 without needing wig/hats etc. we can only hope! xx
Hi ladies /meemoo
So I had fec number 2 yesterday and second time with cold cap -my chemo friend next to me and on the same cycle as me had given up as her hair was just pulling out so hadn't worked for her but I persevered. Felt colder than first time but probably due to thinner hair but I thought at least it's fitted properly pain went after first 20 minutes and the chemo felt much quicker and easier. Felt worse SEs from fec2 last night and was sick once but have been on school runs today and felt tired but able to carry on with being mum
My hair is still there- it is still coming out when brushing but I've stopped that and as yet no clumps out so it looks pretty normal.
Meemoo have you started yet? How's it been?
Anyone else out there using cold cap still after fec2/3?
Keep strong ladies xx
I used it once - but I was not told to get it cut first. I had 'big' thick curly hair, so I reckon it didn't 'get through' to the scalp.
About half fell out after about 2 weeks, then more fell out as I went through the chemo. I ended up with about 20% left - not enough to go uncovered, but it made a useful wispy fringe.
I cut off all that was left at about chemo 4 - and now, chemo 6 + 8 weeks I have a very thick 1cm regrowth showing.
Hi, I am using the cold cap, nothing ventured nothing gained was my thinking. I have only had one fec (2nd one on tues 26th) and so far it is all still there although i know it is still early days to be too hopeful!
I have a question though about what type of conditioner to use when wearing the cold cap, i just took some simple conditioner last time and absolutely plastered my head in it, the nurses kept saying i had put plenty on, but i just kept adding more, lol. anyway i have heard leave in conditioner mentioned a few times, is this a better option than normal conditioner?
thanks ladies, and i wish everyone all the best on this adventure far too many of us are on xx
Hi, I cold capped through 6 FEC-Ts and kept pretty much all my hair :-) Yes, some fell out, but most of it stayed in - I even got it cut during chemo to keep it in shape. I had a thinning patch at the top of my hair, but Alice bands, or clipping half my hair back kept it hidden. No one at work noticed, though I knew and I pointed it out to friends and family! I also washed it minimally, hnever blow dried it, used a silk pillow and cut it into a shortish bob before treatment. I used Naked shampoo and conditioner from Boots. From my experience, it's most likely to thin on the top of your head where the cap has the worst fit, but keeping the front of your hair longer,means that you can cover up any thinning patches easily. Once chemo is over, the thinning patches fill in very quickly.
I hope it works for you.
P.S. Sandytoes, it looks like someone above already mentioned your blog :-)
I used the cold cap and was really gratefulfor the opportunity.
I wrote about it on my blog with pics here: http://chemoforbeginners.com/2012/11/20/keeping-hair-cold-capping/
I really hope it works for you too.
you too are a brave one you know. i don't know how i would cope in your situation. it's my prayer that you have a good support network that rises up around you, and from the most unexpected places. i wish you a smooth ride as you get to grips with all this. i think i'm going to opt out of cold cap and "embrace my baldness" when it comes. a nigerian friend from church has shown me how to tie a couple of styles with a scarf...hope i can do it as well as she can!
all you other ladies, i wish you all well too. keep on going
Another good tip my chemo nurse said was to get a load of different ph neutral conditioners- I could not work out what was what ph wise so I just got a load from pound land?!? She said NEVER use the same one the whole way through or you will get a smell association with the chemo treatment which she says you don't want apparently !
Meemoo- I have a 5 and7 year old and I'm trying to protect them from any worries so again why i would prefer to keep my hair if the CC works it would be easier. I did show them my sentinal lymph node scar and bruising and said i had a Sore booby but i was having medicine to get better.They are too young to understand any more than that.
I was lucky with my first Fec and didn't feel too bad, just a little tired and I was fine doing the school runs but I have signed off work as I work with small children and my low immunity and their germs wouldn't be good.
good luck with the treatment and fingers crossed the cold cap works for you- Anything that helps get through such a difficult time has to be worth a go!
Im back in tomorrow to have checks before second fec on Tuesday. I'll let you know if my chemo nurse has any more advice as she is very pro CC - she did say the minute my hair starts to fall out heavily to shave it all off straight away!!
Thanks for the advice - I am sooooooo glad that the CC worked well for you. And thanks for the tips - do you have to take you own conditioner in or do they give you special stuff to use when you are there?
I have heard a few people say that if it's not on properly it does make a huge difference - I'm just going to keep on pulling it on tighter.
I think they use a 'chemocap' at the Bath RUH - I have only ever heard of the Paxman machine - hope the chemocap works as well.
I'll certainly make sure I have a hot drink to hand.
I started FEC-Tx6 in October and opted to use the cold cap - they had just been given the Paxman machine and I was the first person to use it. I had my hair styled shorter a couple of weeks before the treatment started so I could get usefd to a new look. I lost some hair on the first treatment, quite a bit of hair from the top on the second treatment but that was because the cap wasn't fitted tight enough. After that I lost very little, was never offered a wig and only bothered with a felted wool hat when going out in public on a cold day. The new hair is coming through quite quickly and evenly. The best tips I can offer are to use a really good leave-in conditioner and have a flask with a hot drink ready before you put the cap on. I found that keeping a mouthfull of hot liquid as the cap cooled down prevented me getting the sort of ice-cream headache caused by the impact of the cold on my sinuses.
I had my first FEC on 5th Jan and I'm going in on 25th Feb for my second. I gave the cold cap a try and found it no problem - it is cold but not so cold as to put me off using it. I'd like to keep my hair just so I can feel myself and not feel I need to tell everyone what I'm going through but if I lose my hair then I'm ready with a wardrobe of scarfs and hats ( and a wig!)
The worst part for me is tight chin strap but you can pull down on that every so often to stop the jaw ache. Most importantly at this point I haven't lost my hair and I cant tell if I'm losing more or less hair than before when I brush it. My chemi nurse says it is 50/50 if it works so good luck if you go for it and I'll let you know how my progress goes
Featherbird, I didn't use the cold cap, couldn't be bothered, but when I went on one of the breast cancer care younger women's forums after my diagnosis last year the question re scalp mets and the cold cap was asked. We were told that the jury was very much still out, there was no evidence yet to suggest there was an increased risk of this but no evidence yet to suggest there wasn't, just because there's no evidence doesn't mean there isn't a risk, and vice versa x
I'm new to this site. This has been so interesting to read all your comments and advice. i am due to start FEC the week after next with CC, and up til now haven't known any details. I hope you get on well with it when it happens.
Featherbird - there is a risk with some kinds of cancer, but not primary breast cancer. There is a study I found before and posted on the December chemo thread, but I can't find it now. Basically no evidence has been found of breast cancer spreading to the scalp after cold cap. The only people who had skin mets on their scalp also had extensive secondaries. If you have extensive secondaries then it can go where it likes. I think the question to ask is "what is the evidence?" then you find out if it is backed up by anything or is just an opinion. Then you can decide for yourself.
This is not the study, but the best I could with my current chemo brain.
I had my treatment 2 years ago. I did use the cold cap. it is quite uncomfortable for the first 15-20 mins. Try and have a hot drink then so that it takes your mind of the cap. I lost quite a bit of hair, but also kept plenty. I would advise wearing your hair up in a loose scrunchie in between treatments, as when i had mine down i would see loose hair and would pull it out with my fingers. When it was up it stopped me from doing this and less hair came out. I used to blow dry my hair with a cold hairdryer after washing. Go to a health shop and get there ph balance shampoo its better than baby shampoo. I had shoulder length hair it went a lot thinner on one side but looked ok when i put in scrunchie. Plenty of conditioner before the cap goes on, during treatment keep pressing the cap down to make sure its fitting well.
Hope this helps, good luck with your treatment.
The cold cap not offered her in the canaries either, when I mentioned it they seemed to not be interested because they said the purpose of chemo is to get rid of all the quickly dividing cells hence the hair fallout. If its not aloud to do this then there may be some cells left in the hair folicules, personally Id rathernot take that chance so didnt pursue it. Has anyone else heard this or are they just not offering it. Xx
Cold cap is not offered here in Calgary, Canada.
I heard about it via my brothers wife who is having Tx in England but decided against it.
I wonder if HJU lost her hair at the top but not the sides due to the top being not so tight?
Anyway, I haven't used it, but after three cycles of AC I am still growing hair mostly on top of my head, while it is practically smooth at the sides and back. I could probably sport a threadbare Mohican, but opted to shave it all and be smooth all over!
My choice. I am starting to feel quite brave about taking off my headcoverings in public places if my head gets hot. It's a speedy way to recover from hot flushes! I can't see it myself unless I catch sight in a shop window etc, so it doesn't bother me, and if it bothers other people, then that is THEIR problem!
Go for it Meemoo - I hope the cold cap works for you. Make sure you get the hair wet through and smothered in leave in conditioner before the cap goes on. Wear warm clothes because you can get cold and, most important, take a hat with you to wear on the way home because your hair won't be a pretty sight and you can't wash it for at least 48 hours post chemo. Good luck.
I had no option of CC. I just did not know what to expect. However, once I decided it had to go the hairdressers did an emergency appointment and then straight on with a scarf. The "wash'n'go" hair style was convenient and even slightly liberating. Showering and getting ready in the morning was easy, just a pat and on with the hat.
It is now growing back and its almost exciting. It really has not been that bad.
Best wishes to everyone
I was advised not to use the cold cap and from 3 people I have met in the flesh who used it they all lost their hair so I suppose everyone is different.
I did not use it as I was advised not to and at the time (nearly a year ago) the thing that I was most worried about was loosing my hair but if you do decide to use the cold cap and it works then great but if it doesnt work I just want to let you know that loosing your hair is not so bad and this is coming from a person who has had long blonde hair all her life. Having long blonde hair was my thing, it was what I was known for, I was terrifed about loosing my hair.
I finised 4 x fec and 4 x tax 5 months ago and my once blonde hair is growing in black and I have about an inch of growth.
All the best to you whatever you decide.
there seem to be lots of examples of where the CC has helped us to keep our hair. However, for a % of women it doesn't work. Before treatment I had thick, ginger hair and I was worried that if I did lose it then it might not come back ginger. I used the CC for my first 2 cycles of FEC100 and echo the comments about the first 10 minutes being the toughest. However, on day 2 of cycle 2 I lost all the hair off the top of my head but retained it at the sides - it just didn't work for me. I was very distressed when the hair came out as I really hadn't expected it to come out because of using the CC. So, I'm not saying expect the worst but do try and pepare yourself for some hairloss.
I finished my chemo at the end of October 2012 and now have about 1 cm of growth all over - thicker at the sides than on top. It is ginger! When I had no hair I did eventually get used to it and went scarf and wig free in front of close friends and family.
So, I would say, Go for it! You have nothing to lose in trying the CC and hopefully a decent covering of your own hair throughout treatment to gain.
I've had 5 out of 6 FEC and am using the old cap. Still have a full covering of hair although there has been a lot of shedding. I make sure I use organic shampoos and conditioners which do not contain SLS's or parabens and only wash my hair about every 5 or six days and then very gently. I let it dry naturally and try not to mess about with it too much. As far as time of wearing the cold cap is concerned my chemo nurse showed me the instructions that come with the caps and apparently the time for wearing the cap before and after chemo is dependent on the type of chemo you have and the strength of that particular dose. For instance FEC75 takes slightly less time than FEC100 and FEC-T will be different again etc. I certainly don't regret using the cap. Still have one FEC to go but don't look like a cancer patient. I'm a private sort of person and have only told my immediate family and 3 close girl friends whom I trust about my conditon. This is the way I deal with things and I'm getting through it better mainly because I still look like me. Just my way - wouldn't work for everyone.
I have had 6 FEC and am now 6 weeks from the last dose. I shed hair throughout but although it thinned a fair bit I had enough to never need wigs, hats or haribands. It is still shedding which is annoying as I thought it would have stopped by now but the new hair is coming through so it looks a lot thicker on the scalp than it did. It isn't in gret condition and as dying it is out for the time being, I am faced with more grey than I realised I had but you do get used to not having beautifully washed and styled hair.
As Maggie says, wash once a week with PH neutral shampoo, comb once a day and to add another bit of advice, buy a silk pillowcase as it stops your hair pulling at night.
The cold cap does get increasingly more painful as your hair thins but as others have said as long as you can grin and bear the first 15 mins it is bearable. As others have said, take paracetamol beforehand.