Thank you for the advice everyone, I just saw my son (he's 20) and he said that it wasn't really bad, just a small patch. I've brought a few scarves so if it stays like this I can hopefully just cover up the top but I will definately consider cutting it off because my scalp is so itchy and tingly feeling.
I'm seeing my oncologist tomorrow, hopefully she will be able to tell me if this is all of the hair loss I will experience or its just the beginning?
I used the cold cap for my firest 2 chemos but my hair also started coming out in lumps. I probably only lost about 1/3 but was fed up with founding hair everywhere in the house and my scalp was really itchy so I made the decision to shave it all off.
To be honest I was not that fussed about losing my hair to start with so it was no big deal for me. It was actually much bigger issue for my OH but he's now got used to it - I got him even to use clippers the other week to even it all out and he found it fun.He made a mess of it so I had to do the tidying up 🙂
Re your question - there's no telling how the cold cap works/not work for each person. Some people put up with the hair loss and cover bald patches with remaining hair/scarves/hats while others just shave it off.
It really is a personal choice how you manage the situation and I hope you find a solution that works for you. Just remember, the hair will grow back after the treatment x
I live in Melbourne but this forum has been very useful. I have just started losing my hair, I used the paxman cold cap system nearly 3 weeks ago, it was my first of 4 scheduled chemos. I'm devastasted that I've lost about 2/3 of my hair. I had thick long red hair and now it's nearly gone, I can see my scalp which I never knew was pink.
I guess what I'd like to really know is when does it stop falling out?
My nurses said that my hair would thin, they said about a 1/3 (I've lost alot more than that). Its been coming out since the 2 week mark after chemo, I washed my hair for the first time a few hours ago and it started coming out in clumps, so I brushed it to get the loose ones out and there are still more strands all the time.
Please tell me when this stops?
I don't know if I should just shave it off?
Hi Meadows - I have had 5 out of 6 chemo treatments and have also used the cold cap. I have kept almost all of my short hair, no actual bald spots just thinning. Although not pleasant I am so pleased I have used it - lost all my hair 5 years ago and did not want to go through that again. I feel that 6 days of unpleasant treatment is better than 6 moths without hair.
Have you looked at cancerhaircare.co.uk . It is a website about everything you need to know about your hair and cancer treatment. There is a good section on scalp cooling which I used to decide on whether or not to use the cold cap. You can get a booklet by email from the Lister Hospital about scalp cooling and it has a really informative section on how to treat your hair AFTER you have finished including when you can colour it. Really worth a read. Good luck. Marli x
Hi, I just wanted to share my experience of the cold cap. I wanted to preserve my hair but was warned that it was not guaranteed. I had my treatment at the Christie hospital in Manchester and could not have asked for anything better. I started my chemotherapy on 2 December 2014 and started the cool cap at the same time. I found the chemo absolutely fine but the cool cap experience was very unpleasant. Someone had said that if you can get past the first 10-15 minutes I would be fine. That was actually true but the whole experience of the cool cap was not pleasant. However, 18 March 2015 I had my final chemotherapy (6 sessions) and perservered with the cool cap. I personally am so glad i did; I was able to continue to lead a normal life. Although I lost probably 1/2 of my hair anyone who didnt know me would not have known. My hair did come out after every treatment, even up to the end but the worst was after the second treatment (Christmas Day) when handfuls came out in the shower. I used baby shampoo and conditioner, only washed it when I had to, usually twice a week and used my fig brush as a comb because of the wide teeth. Be warned what hair you keep is very fine, feels like baby hair and the ends are dead. I chose to keep mine shoulder length. I was asked if I would do the same again and yes I would. I am now waiting for my hair to grow back and that is why I came on here to get advice on when it comes back and when you can start to colour etc. Anyone any feedback? Hope this helps...
Oh thank you all for your comments.
Just have no idea what to do with this. Dont think any baldpatches as yet but hair very thin on top. For the first time yesterday felt rain on my head!!
Problem for me is my hair was so thick so looks so fine now, but I will not get it cut will just see what happens naturally.
May give the nurse on this line a call to as everyone seems so helpful.
You have all cheered me up a lot
Bless you x
I am so glad my post helped you. I hope you are doing well and that the cold cap is working for you.
Thank you so much for replying to my post.
My hair is coming out in handfuls If I run my fingers through it. I did have really thick hair but think I have now lost about 2/3 of it.
I have only washed my hair once a week and used johnson's baby shampoo and simple conditioner.
I did not rally start to lose my hair until about 17 days in but it is coming out all the time, falling out.
They used the medium cold cap with the small over it and there was a huge gap over the top of the inner cap both times. I said I have a big head which I do and sholud it not be a bigger cap but they said no. The nurse did say though at the end of chem0 2 that if I use it again she has changed my notes to medium and medium. But to be honest dont know if I will have any hair left at all by then. My hair is short just below my ears and dont think at the moment it could be cut, as when you touch my hair it falls out.
Husband thinks I should maybe just pull it out, but frightened to do this and think I will just wait to see if it all falls out.
I am so disappointed as I did try the cap and had great faith in it but just bad luck that it was not fitted or working properly.
This is my first post so sorry if I am asking something that has been explained elsewhere.
I had my first chemo and had the cold cap and there was a little hair falling out in the first two and a half weeks.
The last few days and after washing my hair with Baby shampoo and simple conditioner yesterday, masses of hair fell out in the shower and when I brushed my hair yesterday and today. I just have to touch my hair and lots comes away, it is not sore but my head has been tingling.
Problem was at the first cold cap treatment the two tubes were disconnected when I went to the loo and only one was reconnected.I noticed after about an hour after Fec had been administered that mey head was not rwally cold. The hospital were worried the machine might be faultyand are really sorry.
I had second fec today and cold cap was cold!! Everyone was checking it was working.
So I am wondering if the result of the first chemo is that I will lose all my hair or if the second cold cap might do the trick with the hair I have left.
I do have thick hair which is in a bob, it is coloured and so the grey/white or whatever roots are very visable now.
Having spent about 12 hours with the cold cap, I would love to keep some hair but have no idea if I will.
No one at the hospital had any idea.
If anyone has any thoughts would be great if you could reply
I am recently diagnosed ( early June) and had my first chemo session two and a half weeks ago and am due for my next one on 1st August. I need 6 sessions every 3 weeks then surgery then radiotherapy. I am desperate to keep my hair - I dont want to be a cancer 'victim' and having a bald head just fills me with horror. I read up quite a bit on the cold cap so I reckoned I knew what to expect. I had my long hair cut short - boo hoo- but from all the blogs and the nurses advice they say it doesn't work as well on long hair. The oncologist was a bit non commital about me wanting to use the cold cap but I ignored her negativity and went ahead regardless. The Macmillan nurses at the hospital were more supportive as were the staff and they helped guide me through ensuring that the cap fitted tightly and recommending that I wet all my hair and applied conditioner prior to the cap being fitted. I too was told to use a low PH shampoo/conditioner but my hairdresser recommended to me Nioxin which is low PH and for thinning hair. Also as my hair was highlighted it is also for chemically treated hair. I wash my hair twice a week in cold water and tend to just use the conditioner. I shampoo about once every two weeks and use cold water each time. Today was the first time that I noticed more hair coming out when I combed it - I use a large wooden wide toothed comb but its not too bad and I am keeping my fingers and toes crossed that it does not get any worse. I was also recommended to sleep on a silk pillow to prevent friction but I simply put a silk scarf around my head and sleep in this. If I can provide any more hints just let me know. Good luck to everyone out there.
Thank you Paula. I am going for the hair cut option. My hairdresser will think im nuts! Ah well Thank you for your lovely message xx
I know this is an old thread but when I typed in 'cold cap will it work?' I was brought to this page so thought I would share my story for anybody else that is looking. I was offered the cold cap during my 6 session of FecT. I found the following information helpful: Firstly I had my past my shoulder length hair cut very short. I only washed my hair when it really needed it, once a week with 'simple' shampoo. I didnt really know what I was looking for in the ph balance of shampoo's and so simple was the only one with 0% fragrance free on it so I chose that one! I didnt use cold water to wash my hair but I did have it much cooler than I would usually use. The first time I put the cold cap on I found it really uncomfortable, it made me feel sick and I couldnt talk and had to really zone out, I never thought I would be able to cope. I did not wet my hair before the cold cap, and it is really important that it is of a very tight fit. I had to wear it for half an hour before my chemo started and for half an hour after my last bag of chemo. It was changed every 30 minutes and don't be afraid to shout out if the nurses don't come to change it, they are so busy you may need to remind them! My hair started to fall out after my second chemo. I found it would shred about the 5th to 7th day after every chemo session. Don't be too alarmed!! It's a bit scary when you wake up and your pillow is covered (oh I used silk pillows as my hair didnt seem to fall out as much with them). I only combed my hair if it really needed it, having short hair meant I could get away with not having to 'style' it!! I used a very wide toothed hair brush and only used my hair drier on the lowest cool setting. I must admit sessions 4 and 5 were a real struggle, and I really thought of giving up BUT I knew it was helping my young children cope so i persevered and I'm so glad I did! People who did not know I was having treatment had no idea that I was. I even could have got away with not telling the children I was receiving chemo as they would not have realised the difference. The bald patches were about the size of a fifty pence on the side and back of my head where I laid and were only really visible when it was windy. If you are offered the cold cap I would give it a go!! IT WORKED FOR ME.
Hi there Tracy
Well done you, sounds like you have worked hard at keeping your hair. Your talk about 4th FEC, doe that mean 4 FEC then 4 Taxol because i think generally it is the FEC that contributesd to the hair loss. Will be thinking of you next week as you go for your 4th Chem.
Take Care Gilly x
Paula. Sorry that your unit weren't so thorough, there really is a lot of difference in support services and staff knowledge. Sounds like you've managed really well using the fillament, i hadn't heard of that until recently. Hope you are doing OK just now. G x
Sam. Hope the Hickman works for you, so irritating that you've got to go back next week. As you say Head Freezing is a walk in the park compared to having babies. G x
I did experience some head aches after cold cap and used Migrastick which was really effective (little roll on from H & B). This was just to reduce the number of drugs i was taking 'cos anti sickness & Steroids are a must for Chemo.
Take Care Girls Gilly x
The unit where i went used the Paxman system and i did lose a lot of my hair but it was long and thick. Didn't know to have it cut before!!!
The staff at the unit were very thorough with all the girls in prep for cold cap. Completely saturating your hair roots with a spray then using Simple Conditioner (due to PH balance) on roots. Cold cap on for 1 hr before and two hours after Chemo. I used to take towel while they wet the roots and warm cardi / wrap 'cos it is cold.
I had Neo Adjuvant Chemo and had very little time to research / get my head round the diagnosis before i was straight in for FEC/T Chemo.
Of the girls using cold cap the ones with shorter layered hair were the ones who retained more of their own hair but they also only combed it occasionaly and washed it weekly. I am still in touch with some of the girls and where the hair they lost is growing back through they have had it cut shorter now to get a more uniform look.
It is definately worth giving it a try. Good Luck and Take Care. Gilly x
The most important thing is to wet your hair completely before you put the cap on. This is to make sure that your whole scalp freezes before you start the treatment. This is single most important thing for that cap to do its job. I didnt know that before my first treatment, the nurse told me just to spray some water on my hair so I did and I lost about half of my hair after the first session. I knew how to do it properly on the second session and from that point I didnt loose even one hair. Not only that, hair that I lost after first session started growing back before I finished my chemo. It really works! Keeping most of my hair and not having to wear a wig, allowed me to keep working normally full time during the whole chemo which was really great as I really wanted to keep working but decided not to tell anyone in my workplace about my problems.
It works magic Suzanne.
Thanks Paula, that's very helpful.
Mine is terribly curly (& frizzy too), so the thought of loosing it & it coming back even curlier is horrific! I've just had the Brazilian Blowout done on it which not only relaxes the hair, but puts so much good condition into it - thinking that the best condition i can get it in now, the better! I've been able to put away my straighteners already. At least my hair currently looks pretty normal & means it won't be sticking up in all directions in between washes & after cold capping.
Any other advice during cold capping? Think I read somewhere to smoother conditioner on before the cap cap goes on?
Thank you for sharing your experience,
I'm starting my chemo on 6th December & i'm going to try the cold cap. I have very thick hair & asked the nurse if I should get it layered a little to ensure the cold reaches my head fully. She said that she advises i kept it as it was so if it thinned, it wouldn't be as noticable - she also said it would help keep my head warmer. Surely this conflicts with the principle of getting the cold to the scalp?
Any advice or suggestions?
Thanks, Suzanne x
I too am under the care of Wolverhampton and finished my chemo at the end of August. I used their gel cold cap with success. I had fairly short hair to start with and although it thinned, I kept nearly all of it. I never needed my wig but sometimes wore a cap purely for self confidence. I found all Staff on the Chemo unit at New Cross very professional and can't fault them. They should also refer you for a wig which you get free of charge. They use Will's Wigs who again were excellent. Good luck and message me if you want any more advice/information about Wolverhampton, I truly don't mind. I finished radio 3 weeks ago and now have 3 weekly Herceptin. Thinking of you xxx
Hi, I've just been told that I need chemo FECT-T and are desperate to try and keep my hair, this horrible cancer has taken enough already!. My hospital (Wolverhampton) offers a form of cold cap which is a one size cap which is kept in the freezer. I think there's gel inside which keep the cap cool. I spoke to the nurse on the chemo ward about the cold cap but she wasn't very forth coming and didn't seem that enthusiastic about me using it. I've read so many good things about the cold cap and definitely want to give it a go, I'm happy to pay for a different make if I need to. I'm interested in what type of cold cap people used to keep their hair whilst on FEC-T please. I've heard that the Penguin cold cap and Paxman system are meant to be very good. Did anyone use the standard gel cold cap and did it work for you considering that there may be places where the cap doesn't fit snug to your head? May thanks in advance for any information. I'm due to start chemo on the 29th Nov so time is of the essence. Regards Tracy XXX
Could not agree with you more........................I also make sure that i press the back of the cap flat to my head and try and make sure that all parts of the cap are incontact with my hair which i have had cut 1nch all round to enable the cold cap to work..........fingers crossed.
What machine instructions are you talking about as i will check that next time round have just started the Chemo and cold cap regeime so would like to make sure that they are leaving it on for the right time.........
I am another who has done 5 cycles of chemo, 3 FEC 100 and 3 T. (final T necxt week). I still have about 60% of my hair and dont need to cover up with anything although i do use a coloured cream that stains the scalp so the skin doesnt shine through. It wasnt that expensive, about £13 from Amazon and has lasted ages. Like everyone else i did lose a fair bit after cycle 2 but its been fairly even. I would definitely reccomend the cold cap, after 15 mins its nyumb, and i alsways atke painkiller sabout 2 hours before hand which helps.
Oh and my treatment is NHS so its still an option not just for private patients.
Hi, I was just googling to find out what I'm allowed to put on my post-cold cap hair and saw this thread. I had 4 cycles of EC and 4 of Tax (Docetaxel) and I still have hair! I did lose a lot though, and there was a time when I didn't think it would last the course, but wierdly I started to get new growth after cycle 6 or 7 and it stopped falling out. I last had it coloured before Christmas and it would seem that in 9 months its only grown about 2 inches so presumably hasn't grown at all during chemo. I had it cut every couple of months, increasingly shorter, as the hair got increasingly thinner and more straggly. I'm now a month post-chemo and I'm loving having sideburns again. My 'old' hair is shorter than I'd like and is prone to sticking up on end, but as a temporary condition, I can live with it. When I think of the other ladies in my chemo group and the way they had to deal with losing their hair, wigs in the summer heat, being asked to remove scarves at the airport, forgetting to put the wig on when answering the door etc etc. I don't regret the decision to stick with the cold cap.
Yes, it was uncomfortable but I timed the first 5 minutes and the discomfort had always worn off before the end. It also makes the chemo sessions much longer. For EC it was half an hour before then 2 hours after the infusion, sorter after for the Tax. I understand that the NHS don't offer it any more due to the time it takes the nurses to set it up and the increase in time, which is a pity.