Is the Cold Cap worth the pain

Hi guys,

I am due to start my chemo w/c 15th August and am obsessing over losing my hair. I have been told about the cold cap and am going to give it a go. Although I have just read the leaflets regarding this and it says you cant use hairdryers, straightners or hair colouring. Without these things on my natural hair I look like a scarecrow. Has anyone out there successfully used the cold cap and still managed to straighten, colour etc. hair. I am beginning to think I will need to resign myself to losing my hair completely. Would love to hear from anyone who has any experience on the use of the cold cap.

KellyM

Hi Kelly

I used the cold cap but I am not the best person to offer advice as it didn’t work for me. If you try it please make sure that the nurse properly wets your hair and coats in hair conditioner. My nurse was rather distracted and sprayed my hair with water and rubbed on some conditioner, then messed about for ages trying to find the right sized cap and getting it cold enough. By the time she had finished my hair was drying out and 2 weeks after having first chemo treatment my hair started to come out. I didn’t bother with it after that.

I do know that your hair condition changes as you go through chemo, even if you hang onto your hair it will be come dry. I believe you can use herbal hair colourants, but you have to be so gentle with your hair.

I wear a wig now after cutting off what remained of my hair. In some ways it was a relief as it was one less thing to worry about.

There is a thread on here about cold caps - might be worth reading it as there have been people on here who have had good results from using them.

Hi Kelly

I’d say give the cold cap a go. I didn’t find it painful, uncomfortable and cumbersome and it does increase the time you’re in there - HOWEVER if it works it’ll be worth it.

I felt the same as you about not being able to wash my hair daily, blow dry, colour, straighten - my hair was my pride and joy.
The cold cap didn’t work for me, mine started coming out in clumps week 3 after 1st treatment.

I totally understand where you are coming from with having awful hair in the meantime but BELIEVE ME when I say that you’ll appreciate your hair more after treatment as you wont have to grow it all back, it takes AGES, in 2 months I’ve had 1cm back from bald.
If your chemo regime takes 4 months, it’s totally worth having cr*p looking hair in the meantime, you can still hide it. Having NO hair makes me feel really unfeminine and horrible.

I’d say persevere, if it starts falling out then make a decision.

Hi Kelly
I used the cold caps. I kept having my hair cut every 6 weeks and kept it shorter than normal but i didnt dye it incase it went a strange colour!. At the end of 6 fec chemos, i was thin on top, but not enough to have to wear a wig. By the 6th i was glad it was over. Just keep warm when having the caps on & before they go on put a cold damp flannel on your head,i found that, it wasnt such a shock to the brain!!
Good luck & be postive.

Paulinexx

Hi Kelly,

I’ve had 4 rounds of chemo and have used the cold cap and although it has thinned quite a bit, I am still pleased with the result.

I have curly hair and usually use LOADS of products and hairdry it and would never go out without having straightened it. I haven’t used anything since I started using the cold cap though - and it is a bit unruly - but I just wear headbands and headscarves and clips.

Now that I’ve met quite a few ladies who have lost their hair and look fab in their scarves and wigs I am less scared about losing it (apparently TAX is the test which I start on Tues) BUT I’m still of the opinion that I would still prefer to keep my hair as a) I don’t think anyone would guess that I was going through chemo at the moment and that gives me a bit of confidence - I’d hate to have to field questions or pitying looks and b) if I keep it I know I’ll be able to start using products and straighteners etc a little while after chemo and it will start looking OK again. A few months of looking like a scarecrow with a scarf/nice hair clips etc v months and months and months and months of waiting for it to grow back…

Oh - and I don’t find it particularly painful. I’ve taken a couple of paracetamol before heading to the hospital and have made sure that I had a nice hot cup of tea when it was put on - but I haven’t suffered from the icecream headache and it’s just numb. I just forget about it…

For me - the worst thing is the association with chemo. I haven’t been sick and (so far, touch wood!) my side effects haven’t been bad at all BUT the weird thing is is that the thought of the chemo ward, the cold cap or the hospital food makes me feel really sick! Like if you were presented with a bottle of tequila or something that you once had a “bad experience” with when you were younger. Weird.

Based on my personal experience, I would recommend it…

x

Aww guys, thank you so so much for taking the time to respond to me. I am going to give it a go then. It is encouraging to hear it isnt too painful. Im such a big scaredy, and have a very low pain threshold. But once again many thanks for the tips, will have my flask of tea and hot water bottle at the ready, although my hubby would say “whats new there then”.

KellyM

Hi

There have been quite a few threads on cold caps and I have posted on some of them so sorry if I am repeating myself! But I thought I would share my experience. I would encourage anyone who wants to try and keep their hair to give the cold cap a go. It is NOT silly or frivolous to not want to lose your hair! I have heard some people talk about being bald being like a badge of honour for going through chemo - good for them, and I mean that very genuinely, but for me that is not something I felt. If there was a chance of keeping my hair I wanted to try it.

I was warned it doesn’t work for everyone, and that some people cannot stand it, so I was prepared for that. However I tried it and was very lucky. I had 4 EC and then 4 tax. I wore the CC for half and hour before treatment (wet hair first and put a load of conditioner on) and then 2-3 hours after. It was uncomfortable at first but not unbearable. The nurses at my hospital were fab and kept you plied with hot drinks and wrapped in blankets! And yes, it adds to the time you are there, but I reckoned a couple of hoursx8 treatments versus months of being bald was worth it! In about the second or third week after my first EC I did have some hair loss and thought “uh-oh, here we go” however it did not continue at that rate. My hair looked a bit thin at my parting but I just wore wide hairbands and you honestly could not tell.

I tried not to wash, blow dry or straighten my hair too much, I just wore hats and wide hairbands when it looked a bit messy. There are so many pretty, fashionable hair accessories in the shops now, I found I could easily cover some of my head without trying to look like I was hiding anything! I did dry and straighten my hair a couple of times when I was going out and wanted to look half decent, nothing disastrous happened! My hair did continue to thin somewhat during EC but never to the point where you would have been able to tell if you didn’t know me, if you know what I mean! It definitely stopped thinning on tax and I think the bits I did lose might have even started growing back. I finished in Oct and definitely had plenty of regrowth by Christmas. Now, the new hair is a few inches long and blending in with the rest of my hair (I had my hair cut in a very short bob before I started) and it looks completely normal.

I know I have been very lucky and am very grateful, I have felt like I have still looked like “me” throughout and you would never guess to look at me I was having cancer treatment. I very much admire women I have met who have just gone “s0d it” - my husband’s cousin for one, she tried the CC but just couldn’t be bothered with it. But I think it is worth a try - for me the discomfort was definitely worth it. So many horrible things were happening (needles etc) I thought hey, what’s one more thing!

Sorry for the essay - and for basically repeating Sandytoes!! (The smell of the conditioner they used makes me feel queasy too) Good luck Kelly (and everyone) and please feel free to ask anything else. xx

Hi Kelly

I used the cold cap with great results! I did lose some hair but no-one could have noticed and the pain really wasn’t too bad and only lasted a few minutes. Hot water bottles and blankets are essential though and make sure you have something to read or do whilst waiting as you will be there longer than those who do not use the cold cap.

Losing my hair was my biggest concern and it made the cancer experience much less traumatic as I never looked any different really.

Good luck!

My BCN said in their experience of using cold caps, 70% of people kept their hair.

I didn’t :frowning: But then I seem to like to be in the few percentage of people for catergorys such as getting BC before 50, the weird side effects I get, the cold cap not working etc - I just hope I stay in the percentage of people that dont have a return of cancer!!! That’ll do for me!

Good luck with it, chances are it’ll come out fairly quickly if it’s going to happen, don’t be hasty and shave it all off if not because some people lose quite a lot but then it stops and better to have some poking through bands/headgear.

xxxx

Me too … used cold cap and it didn’t work … have done 4 now and have mega bald patches but still got hair in some places … followed all the advice and even bought a silk pillowcase! Not gonna shave the rest off though unless I lose more before no. 5 … I have a fringe of sorts and hair at the back under my bandana …

Sallieannie - thanks for your detailed response on this thread. I was really interested as my oncologist has told me that I may well have held onto my hair during my 4 x AC, but that I’ll deffo lose it with my 4 x Tax, so I was very interested to hear that yours stopped thinning through Tax. I hope I have the same experience as you…!! Thank you.

Oh I hope you do too, Sandytoes! I have read on here that some people have been told it is the “E” in EC that is the worst for hair loss, others that tax is, so (as usual!) there is no concensus.

Good luck! And do feel free if there is anything else you want to ask. xx

Sandy toes, I haven’t used the cold cap but lost all mine during AC however it has grown back since being on tax. I’ve had 3 now and have over 1cm of growth, I doubt (really hope) it doesn’t start falling out again now. Bizarrely though eyebrows and lashes are thinning on tax whereas AC had no effect on them at all.

I would say give the cold cap a go. I am 9 days post second FEC and so far can still get away with my head of hair - it has thinned on top and I am losing a few hairs every day when I comb my hair - I think one of the main points has to be fitting the cap on correctly from the beginning. I don’t find it painful and yes, it makes my stay on the chemo ward a lot longer, but I just take some good mags to read, have a blanket and hot drinks.

I use Simple shampoo and conditioner.

Ooh and also I wrap a silk scarf around my pillow at night!

Hi kellie,
I have has 2 fec and worn the cold cap and I do still have a full head of hair (I had long curly hat I got cut into a bob before chemo) I do have some patches and I find because I am only washing it once a week my hair gets matted badly. I still wear a wig as my hair looks a frizzy mess but if I have this at the end of my 6 treatments I would be very happy. Totally agree with sandy toes comments about not looking like a cancer patient. Interesting comments about tax as my onc told me I don’t have to wear cold cap for tax although i can do to be sure!!??? She said my hair should start to grow back then.
Anyway good luck hon and let us know how u get on
Katie x

Sounds like it’s only my onc that thinks Tax is the worst for hair. But he also told me it wouldn’t work with my 4 ACs as I was having a dose dense treatment. So I’m hoping your oncs are all right! As long as mine is doing the right things to get me better, then I’m happy if he’s wrong about the cold cap!!! x

PS Katie - at my hospital there’s a list of the timings recommended by Paxman, and they include Tax on there so I’m deffo going to wear it - would hate to undo all of the work so far! The times are much shorter before and after the infusion - but Tax takes longer to administer, so overall you have to wear it for about the same amount of time. I’ve actually called Paxman a couple of times to ask them questions and they’ve been really helpful, so it might be worth giving them a quick ring maybe? x

Hi, i’m new to all this so hope you don’t mind me joining in ,i used the cold cap hair did go thinner ,used coloured mousse from hairdresser to keep colour,after chemo finished hairdresser used semi perm colour which was brill 6 months after chemo used normal colour , hope this helps

Hi!

Whilst I can’t speak for myself I can speak for my Grandma who used a Paxman scalp cooler in her hospital…

I used to go to the hospital with her and I actually tried the cold cap machine once and must say it was rather pleasant! It was a hot day and the cool liquid that flowed through the cap was actually quite refreshing and not painful in the slightest!

Initially we heard that scalp cooling was quite painful and had some doubts, but apparently it’s the ‘cold caps’ that are really cold and uncomfortable - not the Paxman scalp coolers.

Grandma was so thankful to her hospital for providing her with scalp cooling treatment as she kept all of her hair and as a result her confidence remained high during a very difficult period of her life.

When my grandma was undergoing the treatment she used natural moisturising products that were gentle on her hair and blow dried her hair on the cool setting - this seemed to work fine for her but I can understand how you’d miss your straighteners!

I hope this helps

Good luck with it all

Megan :slight_smile: x

Oh and here’s the link for the Paxman website - has some interesting info about the science behind the scalp cooling system and also some patient testimonials

paxman-coolers.co.uk/