hi about to start Chemo on 19 October. I have medium length hair and if possible I want to try to keep it - my regime is Epirubicin which does I understand lead to hair loss but my question is - is it worth getting my hair cut shorter to help the cold cap work ?? any views ? thanks in advance.
hi i had 3 fec 3 tax i had my hair cut short it didnt really work for me thinned loads on top and lost a lot all over in the end i decided to shave it all off and i do belive it looked better than b4 and yet others with thick hair as got on ok we r all diff i got fed up in the end of sitting up there 4 so many hours just 4 my hair that might not work but what ever you decide i wish u well in your treatment laura
I used the cold cap for 4 fec and 4 tax.
during fec i hardly lost any hair, still using hairspray and tonging on my sons football presentation night.
my hair was shoulder length, I got the colour put back to the roots as knew I wouldn’t be able to get my highlights and a good trim before treatment but kept it longish.
during the fec it worked wonders however with the tax did thin, I never had to wear a wig or scarf as did have a lot of hair to start with and with keeping it longer you can wear it in a ponytail or hair band to disguise the thinner areas.
I found simple shampoo and conditioner to be the better option (not baby shampoo as it knots hair like mad) I also bought a good wide toothed comb and each morning would use this gently over the bath to catch the stragglers.
would also suggest a couple of headache tablets as a just incase but its not that bad, I used to fall asleep.
Good luck with treatment, Debbie x
Hi,
I used the cold cap during x 4 FEC and x 4 Docetaxol, 7 years ago.
My hair was / is very fine and I’ve always worn it quite short.
I was lucky enough to keep my hair throughout the chemo.
It thinned a little but only myself and my hairdresser(yes - I still had to have it trimmed regularly)could tell.
I was told at the onset that I should use only baby shampoo and not have my hair coloured during treatment - and that research had shown that the cool cap worked better if hair was shorter.
I was told that the cool cap had a 70 percent success rate at that time and I appreciate that I was lucky and there are no guarantees.
I found it very uncomfortable in that it gave me the worst “ice cream headache” ever (Debbie’s tip about the headache tablets is a good one.)
It was intensely cold and it prolonged the chemo administration time but for me, it was so worth it and (god forbid!)if I had to go through it all again, I’d make the same choice.
I hope this helps in small way for you to make an informed decision and I wish you well with your treatment, whatever you decide
Dawne
Hi,
I had 4 x epi followed by 4 x cmf last year and never lost all my hair although it was thin and very thin on top. I covered it with large stretchy hairbands and never actually wore the wigs I bought. Hair grows on cmf so I just had the cold cap for the 4 epis. Before completing chemo I had a hair cut and had dyed it with an organic treatment. As epi is a quickish treatment it means even with the extra hours you spend with the fridge on your head you still should get out after not too long. I had mine cut to chin length and I have been told that wetting the hair helps too. They did not do this to mine and I am not sure how cold that would have been. Take a scarf as the drips of ice slide down your neck occasionally and brrrrr. It feels uncomfortable for about 10 minutes, sometimes up to 20 and then I never felt it after that. I just got a pain in one spot on the temple and tried to stick my fingers on that bit. That bit of hair was last to grow back!!Take layers as you can feel chilly even if everyone else doesn’t. I often had a big cardy and wrapped it round me like a blanket.If you can put up with it, you will be pleased.It was important to me as a teacher as I would not have liked to go back in a wig and those that lost all their hair took so much longer than me to get a covering.
Lots of luck with the treatment and your hair
Lily x
i didnt use the cold cap… dont like the cold lol.
but i was in for chemo today and the lady sitting next to me has been having it for a few cycles and she has lovely long wavy black hair and looked quite thick to me and wasnt noticeable that she had any hair loss.
i know it doesnt work for everybody but if your really keen not to lose your hair its def worth a try and if you do get it make sure the top of the cap is fully in contact with your scalp as that seems to be the reason some people can lose a little on top if its doesnt have a close contact.
Lxx
Hi - I agree with Lily’s comments. I am 5 weeks into 6xFEC, using the cold cap. I thinned quite a bit on the first session but I’m told only I can notice it! I’ve got chin length bobbish, fine hair and it seems to be the long hairs on the top which have gone the most. After that first loss no more has gone over the second FEC cycle, but I am waiting to see if it is going this weekend which is when it went on the first cycle.
The cold cap is unpleasant but worth it. My hospital uses the Paxman cold cap which is connected to a refrigerant system to keep it at -5degrees. It is very cold for the first 15 mins then your head goes numb and it’s not so bad. At one point I thought I couldn’t feel it actually anymore and asked the nurses if it had stopped working - they said it was still below freezing, with ice showing on the exposed bits - my head was so numb I couldn’t feel it! My nurses put conditioner on my hair on top before putting the cap on - not quite sure why but I have icicles on my hair when they take it off! It does mean I have to sit there for 4 hours in the unit - 45 mins before the epi and 2 hours after, I’m often the last patient in the unit, and it’s difficult to have a good conversation with someone. I have a neck cushion as the cap is heavy and heat pads to warm me up. It all helps. As does a portable dvd player and films to watch.
I have gone from washing every day to washing once a week - as I found all my hair came out in the shower I decided this was a real factor to avoid. It’s amazing how my hair has gone from mega-greasy to achieving it’s own oil balance and really does not look too bad without the washing. I can’t use any hair products so it is a bit of a mess lol. I brush only once per day and try not to fiddle with it. When it is a real mess I use a scarf or headband to disguise it. I switched to a hard soap-like shampoo from Lush and Boots sensitive skin conditioner, but have just bought an organic aloe vera one to try.
I haven’t cut my hair, but am considering getting some layers put in to disguise the thinner parting. If I still have hair on the next cycle I will go to the hairdresser but will wait to see if it’s worth spending money on first.
Good luck with it and hope you keep your hair.
Helen.
Yes, a shorter haircut will be helpful. It will allow the cold cap to come closer to your scalp and thereby do its job more effectively. When I’ve used scalp cooling (more than once because I have secondaries) I had almost no hair loss around the hairline where there was a tight fit, but a bit more from the crown of my head.
Scalp cooling won’t completely stop the hair loss and it is definitely easier to make yourself look presentable with shorter hair.
Ways you can give it more volume:
*with your hairdryer nozzle concentrated at the roots, or
*use one of those hairdryers with a big round diffuser and short prongs that you twist about in your hair, or
*spike it up a bit with mousse or gel.
You’ll probably know instinctively which styling method feels more you and will easier to cope with. Play with the hair styling gadgets you already have before buying anything new. Maybe even borrow something from a friend.
Do use a good hair protector product if using a lot of heat or if you colour your hair (I do both). My favourite is Philip Kingsley Straight Hair. It appears expensive but is very concentrated so on a cost per use basis it is good value for money. The products is described as a heat activated gel rich in botanical extracts, that temporarily smoothes, straightens and tames curly or frizzy hair, contains UV protector and extends the life of coloured hair.
Don’t buy if you absolutely refuse to use parabens.
The website for Philip Kingsley products will tell you more. Philip Kingsley has more than 45 years’ trichological experience and is well respected.
Regarding the initial discomfort using the cold cap, consider taking a light painkiller or tranquilliser about 15 minutes before you start and wrap up warmly.
Hope that helps!
It is better to have short hair.Ialso just lost some on the crown.I used weleda chamomile shampoo and body shop grapeseed hair shine-no parabens etc to irritate scalp.I did not use a hairdryer much as it damages the hair (which can be slightly brittle) and have let it go grey (for now)as I did not want anymore chemicals in my system!
I had to have my hair cut to retain a style and the hairdresser said I had more hair than many of her regular customers (I did have a pretty thick mop to begin with)
The cold caps have often streched to different sizes so check they are a tight fit.I am luky in that I have large head(no comments!) so they had to find several that actually fitted.
Make sure it is on before the treatment starts and keep it on for some time after-the nurse should help you with this.
I had 4 Epi had hair loss very thin on top had to wear wig as i looked bald.I looked into the cold cap but found information that
it decreased the chances of the chemo working there by 5% onc nurse didn’t recomend it.i would say check out the internet on how effective it is before you make a decision.
On CMF now it starts to grow back as soon as you stop Epi it grew quite quickly for me.
Hope this helps.
I’m half way through my chemotherapy now - 4 EC and 4 TAX. The 4 EC have been done and im using the cold cap throughout.
I’ve actually been speaking to the people at Paxman. It works better if your hair is cut shorter (I had fab long curly hair which is now jaw length!). Make sure they dampen your hair down before hand, put a non-PH balanced conditioner on it (we use SIMPLE)and thenmake sure that the cap fits tightly on top and all around. Its important that the top of the cap is sitting flat on the top of your head.
With EC you have to sit there for an hour before treatment starts with the cap on and for 2 hours after treatment has been given. I always have a couple of headache pills before hand! The first 10 minutes are the worst then all of a sudden you don’t really feel anything.
I still have a full head of hair after 4 EC treatments - don’t get me wrong you still lose hair in that it thins out - but you still wouldn’t notice. everyone at the hospital always says Oh you’ve managed to keep your hair then!!. Another important tip Paxman told me was not to wash your hair too much - i wash mine once a week in tepid water ( i just lay back in the bath and let the water run through it) and be very gentle when washing it. No hairdryers or heat of any kind either.
My next 4 cycles of treatment on Taxol start in two weeks time and i’m hoping and praying the cold cap continues to work! I have to sit there for a long time with it on for Taxol though. Taxol takes three hours to drip through - so it’ll be about 6 hours in total but to me it’s worth it. Keeps me sane and stops me feeling like a cancer patient and I still see me (albeit a different looking me) in the mirror!
Good luck with it and let me know how you get on - if you want to ask me any more questions, please ask away.
Loopy xxx
Ladies thanks so much for this - I will get my hair trimmed and hope for the best. I will of course keep you posted. Good tips here about getting the cap to fit properly and that makes sense - thank you all. XXX
hi everyone,
I too am starting chemo next week - 21st - 3x FEC and 3x Tex. Where do I get a wig from? Also, I phoned MacMillan and they said that as I’m getting contribution based ESA, I won’t be able to get any help with the cost. Can anyone help? Feeling a bit lost!
Ses
xxx
I faced this problem when on FEC. I could not stand the cold cap, so when my hair started to drop, I gave in and looked into getting a wig. It appeared that the local PCT had decided that only “in-patients” would receive full funding, and that “out-patients” must pay for their own wigs. Funding of wigs is apparently a local matter and ot a national directive.
My onc. nurse snorted, said that so far as she was concerned I was in the clinic and therefore was an in-patient, and completed thew form. Sadly the people ordering the wig messed it up so I ended paying for my own.
However, two points - talk to the team and find out what local rules are, and talk to your hairdresser.
Apart from that, this link is worth looking into: wigbank.com/
I donated mine to them and feel they are well worth supporting.
Another point, If you do get a wig, go to your hairdresser and ask him/her to shape it on your head. The wigs tend to be too full of hair, and thinning can do marvels.
Completely agree that all wigs tend to need restyling on your head before you can achieve a natural, flattering shape.
NHS wigs whether supplied free or for a prescription charge, are of very poor quality if supplied by my local hospital. You are only offered a very limited range of wigs and they tend to be discontinued cheapies not general available to the public. So if you want a natural looking “flesh” parting and trendy new colour highlights, you have to bite the bullet and go private.
I can understand women not going down that route if they believe that current hair loss is a one off.
However, as I’ve got secondaries and have lost and regrown my hair several times, it was worth my while to buy nice ones privately. I recently had two of my original wigs that were quite long (to match my original hairstyle) restyled in shorter more modern shapes and got a new lease of life from them.
Wherever you get your wigs and however you fund them, here are some general tips:
*modacrylic is easier to look after than real hair
*you can wash modacrylic on the silk/wool/or"handwash" programme of a good washing machine if you like (I do)
*you can use non bio washing detergent and fabric conditioner intended for babies rather than expense wig products
*when you’ve pulled in the elastic to make it fit your head, you might wish to stitch it down so you don’t have to fiddle about with it again
*be aware that if there is a strong wind, loose wigs can blow off down the street if you are not careful (yes, I experienced chasing my wig and everyone around was pretending they hadn’t noticed and not attempting to help)
*something I haven’t tried, for those living close to London or Brighton consider Trevor Sorbie’s offer of free styling (though you pay for the wig). I’m sure someone else will recall the name of that charity and the website address?
Hope that helps!
From my own experience I would definitely say getting hair cut shorter improves the chances of cold cap working. I had very thick chin length hair. After one session of cold cap just before 2nd FEC hair came out in handfuls from sides (thickest part) but not on top. I think if i had had it cut short it might have thinned but not fallen out. However i also had 4 TAX. Hair was beginning to grow back at end of 4 FEC and then fell out again on Taxotere. I bought an |NHS wig. Did not find it very satisfactory although everyone said it looked good and amazingly people said it looked better than my own hair?! When i had real hair they said that had looked good as well! Were they being kind? Anyway my real hair was very curly. The first thing i was told we have no curly wigs. I had a short wig which didnt fell very secure and I had to hold it on if it was windy. After much research on internet found very good helpful site. Present wig is synthetic, curly, easy to look after and so far i have had for 10 months and it still looks good and cost £100. I am tempted to carry on with wigs. Cheaper and easier than real hair. I finished taxotere last november, nearly a year and still do not have a satisfactory head of hair. It does not necessarily grow back fast, it seems to be growing at least half the rate of before bc and is patchy as well.
Hope this helps in decisions. Good luck.
hi
Thanks ssoo much - this kind of advice is invaluable. maybe when I get one, I’ll post a photo!!
Thanks again
Ses
i have had 5 of 6 fec,i used the cold cap my hair has thinned on top but i just wear hats,the cold cap is bad for 10 mins then your head is numb xxx