Michele - DO NOT PANIC! I lost what seemed to be an awful lot of hair during Rounds 1 and 2. During Round 3 it still came out but slowed down and continued to do so for the rest of my treatment. I too, have thick hair and although it thinned in soon grew back after treatment.
I did, however, only comb it once a day with a wide tooth comb and only washed it once a week where possible.
Cold capping is an ordeal but I had lost my hair 6 years ago and did not want to do so again. It made me feel so much better keeping my hair and was worth the 3 hours cold capping. Good luck. Marli x
Advice please - on day 19 of cycle 1 I started to lose what looks like an enormous amount of hair. This has continued and I'm now on day 3 of cycle 2. Luckily I have thick hair so it's not showing at the moment but I don't know if this amount of "shedding" is what most of you have experienced and that it might slow down OR if this means that the cold cap isn't working for me. I'm attaching a photo of the loss this morning. It seems to be coming out all over rather than in patches.
I'm tempted to persevere in the hope that this will slow down. Has anybody lost this amount daily for it then to slow down?
Hi Tina, I've commented on cold capping before and I know it is absolute torture, but I am now five and a half weeks post chemo and despite thinning and losing about 60% of my hair I am still pleased I persevered. I cannot believe how fast my hair is growing and I have now ditched the hats I was wearing to cover thin patches as I have about an inch of new hair all over plus the old hair that was left. I had a very thin patch on my crown you could see the scalp through but that is now gone. I wouldn't say I have a style and my hair is far from the long blonde it was before but it's there and that makes me feel better about myself.
It's not for everybody and it's incredibly disheartening when you have that initial big hair loss. It did slow down although not stop altogether but by cycle 6 it was coming back. The nurses said that had I not done it I would have lost the lot!
love to all still having chrmo
I had the same thing happen to me and it scared me too. However, that was the worst of it. It slowed down and didn't shed like that again. I also think it was partly due to me having thick hair and not pushing the caps down tight enough the first time. I am happy to say I had my last round of chemo this week, and have kept majority of my hair. It has shed, but only I can tell. I hope you continue to use the caps and they get better for you. Be gently with your hair in between.
If headbands don't work, then you may want to try form sheets. The form sheets are the kind kids use for arts and crafts, a little thicker than paper, and you cut a half moon shape to cover your forehead. I used wig tape to stick it on my forehead and it worked great! Hope this helps
Think I would try not to touch it if possible Tina. My hair is short so a gentle comb made it half way presentable but if it is long I would wear a band or gently tie back. It's a bit like having a zit - can't keep our hands off it. lol Marli xx
Tina - I think the nurse might advise covering it with a bit of gauze, but use the minimal size. Perhaps make one at home to just cover that bit. Marli x
Tina - well done for getting through the 2nd one. Personally , I didn't wash mine the same day and only washed it once a week , not really rubbing it more a slight massage of hair. Followed with a wide tooth comb and air dry. Used a satin pillow case as this stops hair being dragged. Used a wide band or buff to stop hair falling all over the place. By 3rd treatment it DID slow down and still followed the same routine.
I have very thick hair and even I thought I was going to lose the lot but it is surprising how much we have.
Stay strong and don't panic. You are doing so well. Hugs Marli x
Hi I understand totally, I'm going for round 3 on Tuesday and on day 13 after first round lost a lot, but it's totally slowed down, I've got no hair on my arms or legs, but that's a good thing. But I so understand about how you look and feel. I don't want everyone to know so if I can keep what's left of my hair and live in baseball caps until the end at least i'm not branded a cancer patient by everyone who sees me. I live in a small town and really don't want everyone looking at the "bald lady" when ever I go out. People keep saying to me it's only hair but I think it's the last part that tells everyone what your going through so at least if I can stay away from wigs I still feel a bit normal. Good luck.
I have had 4 fec chemos and still have most of my hair. The cold cap has worked so far for me and my hair loss has reduced over time with the first cycle being the worst.
With the cold cap make sure it is touching everywhere and particularly the top of your head. Wherever it isnt touching it isnt working so dont let them turn it on until you are sure it is a snug fit. The machine needs to be between 4 and 7 degress and you can unswitch it briefly to go to the loo. The red one is the one that affects hair and is given first and then there is a set time which I think may be two hours after where you need to keep it on. Next time I am going to try and find something waterproof to put around my neck so that my wet cold hair does not make me colder. I also take gloves and a hot water bottle as I hate the cold and am a bit of a princess! Anything to make myself feel better as it is a bit of a long wait to take the cap off. Worth it though.
I am not washing my hair very much - twice a week - but it has got dryer with the chemo and it doesnt seem to mind. Sometimes I wash just the fringe and try to comb as little as possible Iam also using something called luxe oil by wela that i smooth on to my hair before i brush or wash it. I have also used my straignerners! oh horror! But only on special occasions and it made me feel a lot better to look like my again. I don't use the hair dyer but let it dry naturally.
I wear a fetching pink hair net in bed and have silk pillowcases to stop my hair pullingif any of it dare escape from the hair net and also use a shower cap.
Strange but the hair that has stayed is still growing.....
Laura I had a similar experience to you. The first 10 minutes were unpleasant but do-able. I actually didn't find it as cold as I thought I was going to. When they took it off, I didn't have ice on my head but it was very cold and wet to touch. I think they had let it cool down whilst still on.
I'm on day 14 after my first cycle of EC. So far, touch wood, no shedding and in fact I seem to be losing far less than I did before chemo - however I'm not counting my chickens and this could be the calm before the storm!
One thing I did do, which helped tons, was I found a scrap of sheepskin material (no idea where it had come from but found it around the house!) and I threaded that under the chin strap and could keep pulling down on that. I did look like I had a Tutankhamun beard but it was worth it as I found the strap the worst bit.
Laura - I did have ice/frost most times but it does depend how long the cap was left on after it is switched off as it does defrost quickly. When I had my first cold cap I was surprised I could bear I asked the nurse if the machine was working . After checking the temperature she assured me it was. You can always check the machine your self, I think it should be -5 degrees. Also check that the cap is the right size and check if you can't feel the cold especially on the top of you head.Make sure it is damp all over and plenty of conditioner. I wrote the sizes of my cap and cover in my book to remind me when a different nurse asked what size I used.
Keep at it - it is worth it. Marli xx
Thank you for posting. Your reassurance helps. It's such an anxious time having the chemo without worrying about if the cold cap is working. Thanks again x
Sue, please don't panic. I lost what seemed to be a lot of hair at each wash for the first 2 rounds of chemo. From round 3 it slowed down. Be gentle with your hair, try to wash only once a week and pat dry not rub. Sleeping on a satin pillowcase is useful as it does not snag the hair.
My Paxman machine had a chart hanging from it which tells the length of time needed depending on your drugs. Perhaps you could ask the nurse to show you so that you are reassured - and she can be reminded.
i used a powder to help disguise the thinner parts of hair (although they were not really very big - had no sideburns) . I bought it from Amazon for about £6 and it was really good, lots of colours available. Then passed it on to someone at chemo. Good luck .Marli x
Hi thanks for posting this. I'm havng same regime as you and on 2nd FEC on Thursday. My hair started to come out yesterday in what seemed like 'handfuls' and I'm worried the cold cap hasn't worked. I have one very small bald patch on the top of my head. I don't have a lot of confidence in the process- I was first told I'd need the cap on for 2 hours after chemo, then another nurse said 1.5 hours and eventually they left it in for only an hour after (as well as prior and during chemo).
i will continue to use cold cap unless I wake up tomorrow and it's all fell out!
I understand, I had my first and 13 days after starting losing about 50%-60%. My hair was very think and I felt that because of that it didn't get cold enough, now it's thin. I've had my 2nd chemo and just waiting to see if I lose any more. Like you I understand my first treatment didn't seem cold and the chin strap was terrrible. My second treatment was freezing could be that my hair was thinner and hope that it will work, now I'm just waiting until next week to see if more falls out...
Hi. I used the paxman cold cap during chemo in 2014. It worked for me and I washed and blowdryed my hair every day. My attitude was that if I had hair it had to be functional and look nice else I might as well wear a wig. I used simple shampoo and conditioner. I did thin on top and if you click on my picture you will see my hair progress. I usedBastille dry shampoo for brown hair to cover the thinning patch on top. Towards the end of treatment if your hair is thinning get them to use a smaller cap so that you keep contact on the top of your hair. X
Hi guys..l. Think it's best to use what you feel happy with. I always conditioned with simple conditioner, was easier to comb after washing. Tried to keep it to once a week. I was advised not to use baby shampoo!! My McMillan nurses words were 'if it can get rid of cradle cap it's not good for your scalp and folic,es' do I avoided,
my hair is growing fine now, I lost about 60%. But had very thick hair to start with. Xx good luck
A friend sent me a whole lot of instructions about how to keep your hair during chemo which Included not to use use any products other than mild baby shampoo, so that's why I stopped using conditioner. TBH I don't suppose it makes much difference though. I think it's the cold which makes the difference. I also used a tangle teaser brush, which I think pulls your hair a bit less, and I held my hair at the roots while brushing, to avoid pulling it. On some of the worst days (days 13-18 after the FEC), I didn't brush it at all, just put on my hat! X
Hello, I thought of adding my experience of cold capping. I have just finished my 3xFEC and 3xT a week ago and have lost about 40% of my hair using the Paxman cold cap. It honestly looks fine, as it was quite thick before, so if I put some mousse in it and blow dry it you now can't tell at all that I've just had chemo, I have friends with less hair than me who don't have Cancer. The hair did seem to come out in alarming handfuls during the 3 FEC cycles, so I thought it wasn't going to work but then the loss slowed down a lot during the T and is now not coming out at all any more and is also growing back well. For me the cold cap has been very worth doing. I have a wig but only had it on it once or twice.
Before I started chemo my oncologist said that he did not recommend the cold cap because I would lose my hair in any case but when I saw him again recently he apologised and said that he would stop saying that to new patients as he has revised his view following the evidence of my experience. The nurses at my unit were very kind and supportive. One of them was an ex-hairdresser and she took charge of the cold capping, making sure the conditioner was covering all over, and the fit was good. I left the conditioner in for 24 hours after each treatment (wore a hat) and then only washed hair with baby shampoo, no conditioner, no blow drying, every 3 days through treatment. Hope this helps anyone considering the cold cap. I would definitely recommend it as although it's uncomfortable and means the chemo process takes longer it means that I will be able to feel back to normal more quickly and not be so self conscious when I'm out and about. Fiona. X
I fear i have sinned.....ive gone and washed my hair! I couldn't stand it, it was itching like mad but apparently i now know its the hair follicles changing,cos its still bloody itching! Its only day 9 and I'vewashed it twice. ... must stop xx
Hi Tina.... I used simple sgampoo and conditioner throughout but did also use a few strays of the Aussie leave in conditioner when first bombing after washing..... As by time I talked it gently the comb needed something else to help it through gently. It hasn't done me any harm! I list about 60% and now 6 weeks post last session my fair feelsxsoft and is def growing again! 👍🏼☺️
Tina - try to read the information on cancerhaircar as it will give you lots of information and advice. get the booklet from The Lister Hospital about scalp cooling and it tells you everything you need to know.
Yes , I finished mine a year ago and after 6 weeks my hair started to get back to normal. It did continue to shed for those 6 weeks but don't panic. I lost the most hair during the first 2 cycles and then started to slow down although it did continue to shed. I wore a scarf or band when cooking.
I bought a satin pillowcase to sleep on as it does not pull the hair. As for washing it only washed it once a week , very gently and patted dry and only used the hairdryer on low setting for 2 mins. Use a wide tooth comb to tidy it up.
You do need to use a band to stop the cold - it worked for me. Tolerated it quite well. It was worth it for me. Maril x
Hi guys..... Just popping in to tell you I didn't use headband my cap was fine without. It worked for me. It was uncomfortable for first 15 minutes but I coped with it. Lost about 60%. Also my onc nurses had been on refresher course fir Paxman and said its ok to wash hair soon as home after cycle if you're up to it..... I did which made me feel better! Get rid of conditioner and cap smell! Xx Tina
Yes ive bought 2 further headbands to try, no way im wearing it without next time. I wonder if a silver blanket would help. Have you finished yours? How long did you leave before washing it afterwards? Ive only rinsed the conditioner off and not washed yet,just wearing caps and headbands. X
Hi Tina - well done on trying it and sticking it out.
I used a towelling band that they use when having a facial (think it came with a Sanctuary set) and it was not too thick. Put it over my ears and around my hairline. You could use a stretching hairband if it is double thickness.
I took 2 paracetamol about an hour before the cap was put on and used gauze under the chin strap. Made sure I had a scarf under the pipe at the back because that was so cold .
Wore plenty of layers and even had a blanket , as well as plenty of hot drinks. I had to wear the cap for about 2 hours 45 mins. After the first 15 mins it did not feel so bad.
It is worth it for your psychological and emotional well being if at all possible.I found I was much happier this time because I had hair.
Good luck next time. Marli xx
tips please, had 1st cap yesterday, not good, cried!, intense pain across my forehead the whole time. The headband i took was too thick so nurse tried to wedge gauze underneath. When it was taken off lots of nurses came to look because I had a bright red forehead! They'd never seen it before. So....a normal headband. ....will this prevent that next time? Tina x