I know this has probably been asked a million times before, but I was wondering who is using or has used the cold cap during chemo and has it worked. Is it uncomfortable. I have been told that I will probably be having FEC, and wondered if it works with this.
Thanks.
I tried it for 4 AC, didn’t work for me but it has for some xx
Hi stargazerlily,
I had x 4 FEC and x 4 Docetaxol back in 2002 and the cold cap worked for me.
It was intensely uncomfortable and prolonged the time I was in the chemo suite but for me it was so worth it to keep my hair.
My hair thinned a little but only me and my hairdresser could tell and
I still had to have my hair trimmed as normal.
I was told to use only baby shampoo whilst undergoing the treatment and not to have my hair coloured.
2 other ladies who had their chemo alongside me also had success with it.
I know it’s not for everyone but I’d try it again if I had to!
Good luck with your decision and ask away if there’s anything else you need to know
Hi Stargazerlily,
i am trying the cold cap - just had one session so far, for use with Abraxane chemo. I have had EC and Tax previously and didn’t bother about the cold cap, just accepted losing my hair, but this time round my oncologist suggested trying it, and as I now have what i feel to be normal looking hair after losing it all in August 2008, I am happy to try.
I found the first session quite difficult in terms of sorting out which size to use (it has to make good contact with your scalp all over, and therefore be quite tight, but then trying it on is quite painful and feels as though they are pulling your hair out anyway!). Anyhow, once all that was sorted, the process was not as bad as I had feared.
I had all my hair generously covered in conditioner to make it nice and slippy for the cap to go on easily. It is incredibly cold - between -4 and -6 degrees, and even though Abaraxane is administered quickly, I still had to wear the cap for 2 hours, plus the extra time for it to thaw enough to be removed afterwards!
At the start, there is no getting round the fact that it is very painful, particularly on the top of your forehead. However, after about 15 minutes the cold is so intense that your head goes numb: I had a pillow behind me, but couldn’t feel it at all. It does make you feel cold within yourself too, but the staff were very good offering blankets and towels. I have had frozen gloves before for use with taxotere, but the cold cap is, for me, a lot easier to cope with.
It is interesting to hear that you were told to use baby shampoo Doxey, as the Paxman leaflet that I have been given specifically says not to use baby shampoo as it is too alkaline!
I am washing my hair as infrequently as possible, but as it is only short and fairly thin anyway, I am managing quite well not bothering with a hairdryer or other heated styling aids, although I do use a little matt paste to give it some body.
Leaving the chemo suite with hair coated in semi-frozen conditioner is an experience, especially as the advice is not to wash your hair for at least 24 hours afterwards (advice which I ignored). I think next time I shall gently shower it off at the hospital before I leave!
Best of luck if you decide to go for it,
Jx
Hi geewhiz (and all)
How times change eh?
I was specifically told to use baby shampoo and I didn’t have to cover my hair in conditioner prior to use.
I too had fairly short hair but dried it as normal with the hair dryer.
The other 2 ladies who used the cold cap alongside me had longer hair than me, just below the shoulder.
Good luck !
Hi Doxey,
I think it is like all things, and has “flavour of the month” approaches! I’ve read all the current leaflet and will try to stick to most of it, but I get the impression they are trying to cover themselves, and I don’t really understand the value of some of the recommendations. I am definitely not going to spend 24 hours with my hair coated in conditioner for a start!
Very glad to hear that it worked for you and the others you were with - fingers crossed for everyone using it now,
jx
Hello SGL,
I’m using the cold cap. I’m having 4xAC and then 4xPaclitaxel. And am currently 10 days on from AC3.
I haven’t found wearing it a problem. I’ve popped a couple of paracetamol first and don’t even get the ice-cream headache that people talk about. I’ve had a bit of thinning, but it’s been evenly spread, so no bald patches, and I am delighted with the result. I feel really confident going out, meeting friends and family etc without looking like I have cancer. However, my oncologist says that the real test will be with the paclitaxel, but I’m still going to give it a bash. I have to say that I’m not as scared of losing my hair now as I was at he beginning. I went on the BCC Young Women’s Forum A couple of weekends ago and there were girls in their late 20s and early 30s who honestly looked amazing in their range of wigs and funky headscarves. There was also a girl who’d just finished chemo and used the cold cap and had a full head of blonde hair. She said it had thinned, but to me it looked like a normal head of hair. There was also a girl on the same regime as me, but 4 days ahead, and she’d lost all of her hair - so that was proof to me that the cold cap had been a success for me so far.
Do you know what chemo you’re having yet? If you’re on the same as me let me know and I’ll update you when I move onto the stronger stuff!
Xxx
X
Hi SGL
I had 6 FEC finishing in March this year. I used cold cap. It’s not nice but then neither is chemo, so you’re talking about degrees of crapness. If you try it, give it at least 10 minutes, so you can see if you can stand it - you do get a bit more used to it.
My hair looks normal now. It is a decnt length (neckline)as I had some long hair left. The hair on top had thinned to the point that I wore a beret in Winter and a baseball cap in summer (but with hair showing underneath this would have looked like choice rather than necessity). The thinner bits have now filled in with short hair (an inch and a half long). if I hadn’t used the cold cap, all my hair would be that short - and i don’t have a beautifully shaped head.
I used Simple conditioner (and shampoo when washing my hair) and brushed my hair as rarely as possible (once a day). Once chemo was finished, I used caffeine shampoo C1 (from Boots) and my hair started thickening nicely.
Worked really well for me through FEC and Tax. Hair thinned a bit on top where contact wasn’t so good. I cut my hair really short. My chemo unit doesn’t use conditioner - different type of cap maybe? These were the type that have to be kept in the freezer and changed every 20 -30 minutes. It was tough though and towards the end I started to really dread it and was even sick a few times, I think from anxiety, so not sure I’ll use it next time.
Hi
I am another one who it worked really well for. It shed pretty badly after the first one but then the chemo nurses said to leave it on for 3 hours after chemo was administered and although it put a lot of time onto my time spent in hospital it did reduce the shedding. mY thoughts were that it would take a lot longer to grow back than the extra hours spent on chemo ward. I had a couple of patches where it did not sit tight enough at the back of my head but this has now all grown back about an inch and a half already am now 7 weeks past my last chemo and have been using Alpecin and Lush bar and it is thickening up very quickly. It is tough but get past those first 10 minutes and it is doable. Nurses soaked my hair then put dove conditioner on it before applying cap. I was told that it was ok to wash as soon as i got home and i did every time, never used hairdryer but did straighten it a few times if i was going out somewhere special.
Sal
Hi everyone-I am in the middle of 6x FEC and although my hair has thinned I still have a good covering all over - in fact people who didn’t know thought I hjad it cut for the summer:)
When they call you in take some painkillers (don’t do it i the waiting room in case it wears off)and then wet your hair and apply loads of conditioner all over (i used simple products) by the time they are ready the effects should kick in and make it a bit more bearable-the first 15 mins are the worst - after that you are just numb but if you can chat to the nurse or someone can sit with you it makes it a bit easier.
The fnal bit of advice is to try and keep the conditioner on til the day after chemo -it feels awful but the less tampering you do the more chance you have of keeping your hair,it does tend to start shedding between week 2 and 3 but if you only brush it (or style it with your hands)when necessary it stands a better chance of staying there!
It’s not easy but give it a go -you never know until you try.Please feel free to pm me if it helps
good luck
Marie xx
Didnt work for me … I had fab thick glossy hair and now have bald patches and very thin… am still using it on the advice of paxman who supply the caps but have to wear wigs or hats or bandanas … it looks a real mess with so many bald patches and it just drops out when you touch it. I only wash it once a week using the shampoo I was told, have a silk pillowcase and never ever brush it. I am on EC and was told I had no chance!
Oh, and I leave the conditioner on for 48 hours after chemo!!!
wow, thanks for all the replies. I think I will be having FEC, thats what the BCC helpline said when I rang them and told them my situation, but I guess that could change. I have no node involvement, but are Her2postive. I was wondering whether it was worth trying it, but after reading so many success stories it seems worth ago. I agree, in that a few extra house in the hospital is worth it as it will take along time for my hair to grow back, but we are all different, and what bothers me ie hair loss might not bother others and vice versa.
I have my appointment on Weds with the Onc, so should have some idea what I am having and when etc.
SGL xx