Hi first chemo today. I have been searching the forum for a thread/advice on how to look after the remaining hair the cold cap might preserve. I cannot find a specific topic for this but know there are tips as I have stumbled on them. Would appreciate to know what measures helped e.g. shampoo, washing hair, how often, etc. I have thick shoulder length hair, that I normally wash, rough dry and style with a heated styler. I know this might not be possible, how have other ladies managed?
Hi Susann
I have finished my chemo and I used the cold cap succesfully. I used only simple shampoo and conditioner. No other products of any kind; no sprays, gels etc. I washed it once a week, combed it gently and let it dry by itself. I had lots of hair at the start and I had it cut fairly short before starting treatment. Hair fell out throughout treatment but I never went bald, it was just thin. About half way through 6 treatments I did begin to wonder if it was worth it to be honest as you have to stay in the chemo unit longer and I found most people were quite negative about the likehood of success. It can work though, and it is up to you to decide.
For me I wanted some sense of control as everything spins out of control very quickly when you are diagnosed and hair seemed like one thing I could make a choice about. I also wanted to be able to catch sight of myself and not see cancer. When it gets a bit greasy in between washes (especially when they have smeared a handfull of conditioner on it at the chemo unit) you can wear a wide head band and act like that is your fashion choice!
About 4 months after finishing chemo I now have quite a bit of hair growing through and it is finally thickening up. One thing no-one told me was that you have to carry on treating it very gently after chemo. I started washing mine in my normal shampoo and great handfuls came out! As soon as I returned to the simple shampoo it stopped falling out immediatly. I can wash it more often now though and I am saving a fortune on expensive shampoo.
Good luck, x
Hi Susann
Whilst you await replies from your fellow users I have posted a link to the BCC ‘Hair loss’ publication which you may find useful:
Best wishes
Lucy
Hi again,
I forgot to add do not wash your hair on the day of chemo. This bit of info would have escaped me but a nurse (not the one who had been treating me) saw me leave and said “you do know not to wash it for 24 hours?”. I didn’t and, if I had been quicker leaving, I would never have known. Yes, you will have wet hair full of conditioner and you will need a woolly hat to get back to the car and it will look a bit of a state as a result. Also, if you are lucky enough to see any sun you need to wear a hat then too.
I am going to have it cut on Friday for the second time since chemo so now I am thinking it was all worth it.
More good luck.
I prob won’t be having chemo until late dec after my surgery next week, but good to know it works, will be making inquiries about it, but I have very thick curly hair, will it work for me??
Thanks Cressida for the information on your personal experience, I have found there to be scant information from any other sources on the hair maintenance aspect, which is fundamental. I don’t know if hospitals vary how they use these caps, but mine put the cap straight onto my dry hair, after the first one, my husband carried on the routine - I think I got through 5 altogether.
I share your view regarding some control, vanity does not really come into it, more about spitting in the eye of cancer - down but not out.
I am glad to hear your hair is recovering, I hope the same will apply by next Spring. 
Many thanks x
I’d say it’s def worth trying! I had thick hair, shoulder length. I cut it short to reduce the weight, got some of the Naked range of shampoo and conditioner from Boots, and didn’t use hair dryer or anything else till a good 4 or 5 months after last chemo. I lost a lot of hair on top, and it thinned out too, but with a bit of a comb over style and a nice wide headband it looked fine. Growing back thick now 
The cap is uncomfortable, and certainly not a pleasant experience- particularly the first ten minutes! Have a paracetamol first, and practise some deep breathing exercises to get through that bit…after that it’s just a bind to have to sit there with it on after the actual chemo bits done. And yes, a scarf is a good idea, you feel really cold. And the wooly hat to get you home! I didn’t know you shouldn’t wash your hair for 24 hours, I used to go home and soak in a hot bath! Ah well…
I’ve had cold cap for 3 FEC so far and i’m about to start Taxotere next week.
My hair has really thinned at the back and in the middle. I need to wear a hat to cover it. The best advice I can give is to brush out any tangles before you wash it. Most of my hair fell out when I washed it then had to try and comb out the matted bits when my hair was wet. Also try not to wash it too much-good luck
I’ve used the cold cap twice now and to most people my hair looks normal. However, it has thinned a lot. I have very thick hair which I had cut to a chin length bob before chemo started. I have avoided washing it as much as possible, and for 48 hours after chemo. I use a ph neutral shampoo and a wide toothed comb. I treated myself to a silk pillow case as that is supposed to help prevent tangles.
At the moment I plan to use the cold cap again in 2 weeks but I will see how much hair I have left. The shedding has slowed so there is hope. At the moment I’m working on the basis that without it I would have no hair by now so at worst it has delayed the hairloss.
Hi Susann,
I found this resource which has info on everything cold cap related…
Hopefully you’ll find what you’re looking for!
Hi Susann
I was a bit confused at first by your referencee to getting through 5 caps, then I realised there is a version of cold cap where you use a succession of caps. The one I had was plugged into a pink machine so did not need changing. I am sure you have realised by now that everything is pink. Its the law.
Everything seems to be different between units and doctors about every part of treatment. I have no idea whether one version of the cold cap is any better than another. I had my hair wetted and smeared in conditioner before having it rammed on. Whatever version you have make sure it fits tightly. Be annoying about this - you are entitled for them to take a bit of time making sure it fits tightly. Otherwise you risk bald patches. If you do get bald patches - use the good old wide headband.
I will let you know how my haircut goes - quite exciting to do something so normal to my hair!
Hi - I had my 1st FEC 2 weeks ago today Used the cold cap. It was hell for the first 15-20 minutes, then settled down. Had a headache throughout wearing it though. Will take paracetamol next time. Had to keep it on for 2 hours after the chemo has finished which is a bind. Remember to take a fleecy warm hat to wear afterwards! I was wearing a fleecy zip up top but was still cold - the nice nurse gave me a blanket.
So far I am shedding a lot of hair from “down below” (started yesterday) and underarms. And can pull out eyebrows with my fingers.
Happily no hair loss from my head so far. I had my hair cut short before treatment started, and dyed it fiery red. I was told to wash it very gently with Simple shampoo. No towel rubbing. Use a wide toothed comb. No hairdryers. Advised to wash it weekly, but have washed it twice weekly so far.
A lady sat next to me on her 2nd treatment had lost some hair, she had shoulder length thick hair, she was loosing hair from underneath at the back - maybe cos her hair was keeping the cold away from the hair folicles.
Hi I’m one of the Diamond Chicks - started chemo in June and I finished my last Tax 6 weeks ago. I used the cold cap - I absolutely hated it and found it one of the worst parts of the whole treatment BUT although my hair went very thin and I still used a wig for work - I didn’t lose my hair and I kept a thin even covering. Had my hair cut short prior to my 2nd treatment and I have just had it cut again. For me it was definitely worth it I now have a good covering of hair and it is thickening up well.
I am also using Regaine to stimulate hair growth and I have already coloured mine - I was advised not to use a bleach and to use only a semi permenant colour and to do a patch test first. I’m a can’t wait, won’t wait!! I’m not suggesting my way was right - but it was right for me
My hair loss was a major issue for me - the cold cap is definitely not for everyone but it was right for me and retrospectively would I use it again - you bet! I feel I’m really reaping the benefits now
You must make sure the staff use the right size cold cap; it should be applied to wet hair with conditioner and MUST be very tight to the scalp. It has to be applied for half an hour before chemo starts and has to remain after the chemo has finished - this depends on which chemo you’re having. My advise would be to make sure that the chemo nurse applying the cap really understands how it works
Good luck - and I know it seems you have a long way to go but honestly you will get there, this forum and my group has been my life saver.
Yvonne
Hi Yvonne,
I have commented on a couple of other hair loss threads, and am interested that you are using Regaine… do you think it works? I gave up with the cold cap after one use, as my thick frizzy/curly hair was falling out anyway and not being able to use a hairdryer or straighteners was more torturous than the cold cap! Unfortunately my hair all then fell out and has pretty much failed to return in 16 months since treatment ended.
If you think Regaine works, may be worth me giving it a try?
Hi I had Regaine recommended to me by a friend who had used it successfully for some hair loss associated with menopausal change. I then read an article by an American oncologist who said there had been no trials on the use of Regaine for women post chemotherapy so he couldn’t say it worked but he said there was nothing in the product to suggest it shouldn’t be used; he also said that generally hair growth was swift in women post chemo. I decided I would try everything possible to speed up the process. I can’t say definitely that Regaine has helped but I have seen a marked improvement in my hair growth in a very short space of time so I’m continuing to use it.
I bought it from Amazon - it was much cheaper than high street prices!
Yvonne
Hi,
Not sure anyone really wants to know about my haircut but I did say I would report. Four months on from chemo I decided to have it cut quite short. So, I had my head fozen for five months and now I have had it cropped almost as short as it would have been if I had let it fall out and regrow. All my baldy patches had filled in and the longer chemo surviving hair was getting quite tired. It did its job of getting me through. I’m still glad I did it, but I was fed up of not being able to style/blow dry etc.
Does anyone know how long you need to be gentle with post cold cap hair? Or with the new post chemo hair?
Nannabarb - I am so sorry your hair is not playing. I have read a bit about taxotere sometimes leading to longer term damage to hair; one of the reasons I endured the cold cap was my fear of this. I hope something comes up and works for you.
I have just had my 3rd FEC with cold cap and washed my hair today (chemo was Thursday) and a fair bit came out but less than last week so I am hoping I also keep the thin even covering I have and that the loss will slow down a bit now. It is not comfortable and the thinner your hair gets the colder it feels of course. The nurse told me that it works better on thinner hair as there is less insulation to the scalp - not sure if that is fact or just to make me feel better
I have three more FEC so will see how I get on - I hate my wig but I think a lot of that is the lady in the wig shop gave me such a lecture about not using the cold cap, she was really anti (guess it affects her buisness) that the stubborn mule in me says that I wont wear it unless I absolutely have to.
I am working mostly from home but did go in last week with my thin hair with minor baldie bits and everyone was very kind so was glad I didnt wear the wig - might have to be a scarf next time if it gets any thinner.
Hi Jayne,
Stubborn Mule is your friend. He will get you through.
Hi Jayne
i have spent you a PM
Yvonne
I haven’t posted here before but do feel very strongly about the cold cap issue. I had taxotere chem at the beginning of this year and was very anxious indeed about permanent hair loss (read about it on internet) so struggled through with the Paterson cold cap machine. And I did keep about 30 percenet of my previously very thick wavy hair - BUT - it was a real ordeal and half way through I had to resort to phoning the manufacturer of the machine to ask whether I would get permanent frostbite on my bald patches! They were very helpful and said that if I had bald patches or severe thinning I should use a paper surgical cap during the sessions to protect the scalp. They also said that the temperature of their machines would not cause frostbite though my breastcare nurse alarmed me by saying this could happen!
The most important thing about using a cold cap is to make sure it actually fits your head snugly. As my machine came only with small medium and large caps a perfect fit was not possible. I therefore lost a lot of hair at the sides but have nice bushy hair at the nape of the neck and kept the hair at the front but the chem damaged it and so it is quite brittle and straight.
Also important as others have said is not to wash it immediately (I did this once and wept as massive strands clogged up the plughole_). And to at least dampen the hair before putting the cap on plus using conditioner. The coldness works better on damp hair apparently.
It IS an uncomfortable process but I felt it was worth it as I kept enough hair to be able to get up in the morning, look in the mirror and not have to see a bald scalp. However I did wear a wig when I went out socially and definitely a hat or scarf otherwise as it was winter and cold.
Hair started growing back after about 10 weeks and all the bald patches are well covered and new hair continues to appear eight months after the last chemo. I’ve had it coloured and trimmed a bit but not really cut yet as I can’t bear to part with any of it!
It is so important for nurses on units to be trained in the effective use of the caps. Too often we endure a very arduous process of wearing a heavy cold cap for hours with not enough support or information.
Good luck to all of you!