I was not going to bother with the cold cap as heard its only 20% chance of it working.Is this your experience? I have past shoulder length naturally curly hair.Start chemo on 21st march and the cold cap turned up on my treatment plan although i said i didn’t want it,but now im wondering!!
Did it help or not help you and what’s it like please? x
I tried the cold cap on FEC1 as I had a friend who used it years ago very successfully, and kept all her hair throughout chemo (though I don’t know what regime she was on). The first session wasn’t too uncomfortable - a severe headache for about 20mins was the worst part - but unfortunately before FEC 2 the hair started coming out in handfuls… so I didn’t bother again. Makes the sessions shorter at least. But worth trying, as I’m sure it works for some.
I am about to start chemo. I have been looking at cold caps. I would be in debt to purchase these but would do it if they worked… Any success stories out ther?
I was told that success rate is approx 90% if cap is fitted correctly. I had first cycle of FEC-T last Wednesday and tried Paxman Cap, don’t really know if cap was close fitting enough as wasn’t really uncomfortable. The lady next to me was on her third cycle and still had all her hair. Up to now I haven’t lost any of my hair, although I know it’s early days yet. I would say it has to be worth trying. Good Luck. Diana.
Hi, I’ve had the cold cap and will be having my 6th tch chemo & Herceptin next week and still have hair ! It did shed a lot after the first treatment but then stopped so it’s thinner and the texture is a bit drier and my curls went a little straight but I’ve just had it cut into a shorter style .good luck and it’s worth a try ?x
So far I’ve had 4 x FEC75, using the Paxman cold cap and haven’t lost any hair. It is important to make sure the cap fits snugly all over your head. In my first session, after a little while I asked the nurse to try a different size as I knew it wasn’t touching properly on the top of my head. Since then I have always used the same size combination and the only place I have suffered any loss is just in front of my ears - but I am the only one who can see it - even when I point it out to people they can’t see what I mean!
It is like sitting with a cold wet towel wrapped round your head. It’s not comfortable but it’s bearable and definitely worth trying.
I didn’t bother cutting my hair short, I just had a normal trim in December (I have shoulder length straight hair). I now wash my hair twice a week, using Dr Organic shampoo and conditioner (from Holland & Barrett) and blow dry it gently and use straighteners occasionally. I also use a hair oil so my hair is as silky smooth as possible so it doesn’t get caught when I’m brushing it or fiddling with it. I am finding that it’s ok to only wash it twice a week as it doesn’t seem to get so dirty. I assume that the chemo is stopping my scalp producing so much oil.
Also, don’t wash your hair too soon before chemo as they wet it and slather it with conditioner. It’s fine to wash this out as soon as you get home if you feel up to it. Bear in mind that you will end up hating the smell of that conditioner so don’t use your favourite - use one that doesn’t smell very much (Simple) or one you’re happy to never use again.
The Paxman website has lots of good information.
Good luck x
Hi, no no bald patches as they make sure the cap fits really snugly (I think I have an extra large inner cap and a large outer cap) . As long as the cap is tight to your scalp then it should be ok. I also ask the nurses to pack around my forehead and tips of my ears with pads as this stops any discomfort during the treatment . Some people also use an elasticated headband to go around the hairline to stop any discomfort 
Which type of cold cap will you be having? I know when using the Paxman cooling system, there are different sucess rates for different drugs. I am having 3 Fec100- (50 percent sucess rate) then 3 tax (75 percent sucess) I am due my final Fec next week and have a lot if hair but my parting is thinning. I was told that most hair tends to be lost between sessions 2-4. I hardly lost any hair after Fec 1 but gradually increased throughout Fec 2 , not looking forward to number 3!! Sometimes I wish I had just taken the plunge and shaved it off but if I can keep a good covering of my own hair, I will be happy. My hairdresser said that I have invested too much money and she has invested a lot of time in my hair for me to cut it all off lol , anyhow very best of luck whatever you decide to do xxx
Hi Debs it sort off worked for me had a small bald patch on top of my head where i didnt push it down properly and it thinned but kept most of my hair i would try it its not that bad xxx jackie
Hi Debs, don’t want to scare you or any other ladies who have used cold caps, but just before I started my treatment I met a GP who was going through chemo & was wearing a wig. I asked her why she hadn’t used a cold cap. She told me that it’s very rare but there are cases of women getting secondary cancer in the layer of skin which was frozen by the cap. I checked this with my breast care nurse and she said it’s true but very very rare. The GP told me she didn’t want to take the risk and I decided neither did I. So I’m now bald and glad I did it.
Dear all
It was so helpful to read all your views as I too have been agonising whether to try the cold cap when I have my first treatment next week. The oncologist and breast care nurse were encouraging me to give it a go but my hair, which is already short, has always been fine… So, I think it likely that, even, if I only lose some of it, I will feel bald! The other thing is that I absolutely hate headaches…So, I am beginning to swing against the cold cap? Would much appreciate any further comment as to whether this is sensible. I know it’s down to be at the end of the day.
Hello, Debs. I kept around half my shoulder length hair through the Paxman scalp cooler, two years ago. I had 3x Tax, and 3x FEC.
My biggest hair loss came when I started FEC, but I managed to cover up the thinning/patchy bits with a wide alice band, bandanas and baker boy caps. As I had some fringe left, and a fair bit around the sides, I could get away with looking relatively ‘normal’, as I was determined not to look like a cancer patient during treatment. I also saw this as a way of retaining some control at a time when I felt that the treatment was in control.
The whole regime of wearing the scalp cooler during treatment was pretty grim, but I grinned and beared it, as I was determined to at least have a chance of it working. Post treatment, I gave the jumpers and cardigans,hot water bottles and blankets I used to keep warm when using the scalp cooler, away to charity, as I felt sick just looking at them, and could not bear to wear them again, but at the time I just focused, and got through it.
I have to say that for me, the scalp cooler was pretty sucessful, and the 50% of hair I lost, two years post chemo, is now back to jaw length, and is nearly back to its former thickness. I am very pleased that I persevered, and would say that, in spite of its challenges, it really is worth continuing with it.
Hi Debs sorry you to hear you not been well, as for the cold cap I lost hair every time I had chemo 6 x fec my biggest loss was on the second one but what you must remember before chemo I bet every time you brushed your hair some came out mine did its only natural my hair went very thin on the top and I pinned my fringe up to hide it I combed it once a day and tied it BC I handled it as little as possible. how ever when the new hair started to grow bk it has come much much thicker then before, I finished my chemo in September at Christmas when I went out I couldn’t do much with it so I wore my wig for the first time I bought it in June as a back up ,as for any head aches take some pain killers about an hour before hand I did and I never got any head pains. I do hope you stick with it and when the summer comes and its too hot for wigs you will be glad you did too I know I was. Hope this helps good luck and get well soon. Yvonne x
Hello, Debs- hope you are feeling better today- I had two bouts of the most appalling stomach upsets during treatment, and was almost hospitalised because of them- chemo is extremely tough, isn’t it?
Thought I would bob in again, to agree with 2013yw- using the cold cap can be an ordeal, but I would do it again without question.
My greatest hair loss was during my final three FEC- I washed my hair just once a week, as advised by BC nurse, and ended up with a bath of hair soup each time, which I found very distressing- the end of each day was also the worst, as my long strands of shoulder length hair would scatter on the floor, and doing an end of day hoover up of my hair was frightful, but I was determined to persevere, and kept around 50% of my hair as I mentioned before.
Not everyone could cope with it, but if you are determined enough, you do get through the cold cap regime, and I really was so pleased I did.
I do also believe that it helps the hair you lose, grow back a bit more quickly. I do not wish to give the impression I was able to do without any sort of hair cover-up, because that was not the case- I had a number of balding/ thin patches, which I was able to cover up with wide alice bands, and bandanas. It then took eight months post chemo, before I felt comfortable enough to do away with the hair coverings altogether. Good luck with the rest of your treatment.
Hi Debs, really sorry to hear you’ve had a rough time and the cap didn’t work as hoped. I also find the misinformation so frustrating. Just had cycle 2 of fec-t with the pax man cap and the experience was completely different. During Cycle 1, I had the most pro-cap nurse you imagine who gave me loads of tips and my hair (straight, fine bob) has been relatively normal. Today although my nurses were fantastic, I had to be quite vigilant with the use of the cap. I requested a tighter fit and longer at the end. They listened and accommodated my requests but I couldn’t help but think if this was cycle 1, my hair wouldn’t have made it to cycle 2. I think there needs to be more training and reassurance. My original nurse said 80% works when it’s used properly. I don’t think I’m vain, it’s just nice to have a little bit of normality in the roller coaster that is bc!