Hi there
Due to see my oncologist next Tues and have read bits on here about being offered the cold cap. Just wondered if anyone had had it and it had worked. If it did why do you think it worked and what type of hair do you have.
Would be interested in anyones point of view on this, if it worked or not.
Thanks
Ann
xx
Hi Ann
Dont know if it has worked for me yet. Had first FEC last Monday. I have my doubts. It doesnt seem very scientific. Reminds me of old pictures from the 1920s when they first started perms. The attitude being well it may work but it may not!
I had mine on for half an hour before. It didnt seem very cold although there were ice crystals on outside. I never had a headache at anytime as others have said. They unhooked it before infusion - which took half an hour - for me to go to loo. Rehooked me - did infusion and left me sitting there with it on for 2 hours which they said I need because of dose I had had.
I have thick shortish curly hair. Apparently you know after 2 weeks. So I have that to come. There are no guarantees. I hope to collect wig next Tuesday. Unless hair comes out in clumps - which is does with some - it generally thins - which I have seen in some. And of course you can do nothing to it for fifteen months as far as I can see. No perms, No colouring and of course it wont grow!!
Hi Ann,
I have been on a number of different chemos. For 2 of them I was told it would definitely be hairloss so I chose to have the cold cap. On ECF my hair thinned but I kept a reasonable covering. On Taxotere I was told there was no point in using the cold cap - everyone lost their hair. Being a bit stubborn I said I wanted to give it a go so they humoured me. I didnt lose any hair from my head. I have fairly short hair. If you have longer hair I think it advisable to get it cut short. Otherwise it is difficult for the cold to penetrate properly. Make sure when the cap is applied it is making good contact all over. Things have changed over the years and when I used the cold cap it was very archaic to what is available now. We had icepacks formed over a polystyrene head which were kept in freezers. They were then pressed down around your head till they made the best contact they could. They dripped all over you as they thawed so you were swathed in towels and blankets. It was very uncomfortable initially but I had been warned once the scalp freezes you dont notice it any more. I thought it was worth the discomfort.
dawnhc
By the way I was told a couple of months ago by ONC that I would definitely lose hair as well on taxotere - so thought whats the point. However nurses applying cold cap the other day say they get good results in keeping peoples hair. Someone ought to tell the doctors me thinks.
Hi Ann
I used the cold cap when I had my FEC chemo last year. My hair is very thick and straight but I did have it cut into a bob before I started just in case I lost it.
I am pleased to say that I kept my hair but it did thin a lot, especially around the crown but you could hardly see it. As it is now 6 months post chemo I have just had it highlighted and where it had thinned the hair is now growing back quickly.
Don’t be alarmed if you do get some hair loss. I did but I kept the bulk of it. I only used to wash it twice in between cycles and did not use the hairdryer or any styling products on it. I used dove shampoo and conditioner.
I would certainly use it again but I hope I don’t have to.
Angela
Hi Ann,
I am using the cold cap, it does depend on what drug regime you are given to the results. I am on 4 x epi then 4 x CMF on The TACT2 trial, but this may have different doses again being a trial. I have had 2 doses so far and was told without the cold cap I would definitely lose all my hair with epirubicin. My hair held after the first dose until about day 18, when I combed my hair that morning there was about 60 hairs in it. I continued losing this sort of amount although my parting got wider rather than noticing the loss. Decided to have it again for dose 2 as I still had most of my hair. Very disappointed when about a fifth of my hair came out in the comb 2 days later. The 40 - 60 hair loss has continued so obviously it is gradually getting thinner but still enough to wander around without anyone realising so no hats, scarves, etc. I am on day 12 and I have an almost bald top to my head and the rest is very thin. The annoying thing is you cannot tell from the side or back of my head just the top. It probably means I did not get enough contact but they rammed it on my head and I had the chinstrap pulled so tight I had a job to open my mouth to drink even. I am still able to go out with just hair by doing a parting right on one side, comb over job and then wearing one of the wide stretchy headbands that are around. I have a black one to blend with my dark hair. People have commented how nice it looks ! LOL. I am not sure what I will do next if it gets much thinner. I had it cut chin length at the front going up to short at the back if you know that style, before I started as it was long. The short back is just the same interestingly, might turn my head round! When I go onto CFM my hair will start to grow again so thought maybe that will fill the gap again. Anyway good luck with your decision, it was the most important decision for me personally. By the way they advise people who get headaches or travel sickness not to use it. I have both and ignored this and have not had a headache since freezing my scalp, an extra bonus and it has preserved my eyebrows and eye lashes too so far.
Lily x
Hi Anndi,
I used the cold cap for 4 cycles of epirubicin,I was also on Tact 2 trial,and I managed to keep ny hair.It did thin on top quite a bit but I was very careful not to wash it more than once every 10 days-use dry shampoo from boots- comes in a can.also don’t use hairdrier on hot just a little waft on a cold setting.When using the cold cap make sure its on for a good hour before your treatment starts and I left mine on for 2 hours afterwards.It makes treatment seem longer but its worth it.Also my nurse used to lather my hair with loads and loads of conditioner before putting the cold cap on-you go home looking a bit like an oil slick!! I washed it off very gently when I was home with tepid water and NEVER rub your hair with a towel-always use a wide comb-affro one is good.After my second treatment I had my wedge style just cut shorter layers which looked bril-I’ve kept it that length now -everyone says how much thicker it looks than before-it soon started to thichen up once epi was finished…Had the wig fitting and its still in the box upstairs -never had to use it.Hope all goes well
Kattona.xx
Hi Ann,I had 6 x fec and used the cold cap…went a bit thin on top but it did work,have very thick curly hair and had it cut short,and made sure the nurse put it on tight to get the best results,had it on about 3/4 hr before chemo and left it on about same after i think (my memory is still fuzzy ,chemobrain methinks)…lots of hair came out,but still kept good hair covering…best of luck D…x…ps wrap a warm blanket round your shoulders,as you do get very chillyxx
Hi Starfish
Just to add a different side to the story - well you did ask!
I used cold cap for 1st FEC and it was on very tight, just like Lily describes. I began to lose a lot of hair from my parting and top about 2 - 3 days before my next treatment and as my hair style couldn’t have hid it I decided not to continue with the cold cap. I had my hair cut shorter before my treatment started but either the cap wasn’t in good contact with the top of my head or the cold wasn’t getting through - I do (usually) have very thick hair. Having said that the hair it did work on is still hanging in there even though I’m way over my 2nd FEC. I think the key is how good the contact is and if you do lose hair whether you can disguise the fact easily. Before I started chemo the BCN I had a chat with had just been on a chemo refresher course. The opinion now is that it does work in 80% of cases and that for best results spray you hair with water, so it’s damp, to get the best results. It does need to be on for an hour before and 2 hours after and any conditioner used I was told is to stop the hair sticking to the cap when they remove it - not for any styling issues! You certainly get cold so I’d pack some socks and ask for a blanket, as longden says.
It’s definitely worth giving a go because if it works that’s great but if it doesn’t you’ll soon know and therefore don’t have to continue with it for all your treatments. It will also be your decision how you feel. I personally hated the fact I couldn’t wash my hair so used to trickle water over it each day and dry it on a cold breeze from my hairdryer. I don’t think this harmed it, as most of it is still here, but I couldn’t have dealt with it looking different especially as I am at work between treatments. I now wear a wig to go out and have got used to it although don’t like wearing it for too long and cover up in the house with soft jersey hats/buffs. The upside of this is that my hair looks perfect every time - something it didn’t do pre-chemo!
Nicky
Hi ladies
Thanks for letting me know how you all got on. I really thought it didn’t work and was also painful but it doesn’t sound too bad, and looks as if the success rate is a lot better than I thought. My hair is long and thin but I do have a lot of it. Why do you need to have it cut with the cold cap?, or do you need it thinned out and short.
Was wondering how you have all coped with the chemo. I have always had a problem with veins and having blood taken, and althought I don’t know exactly how it all works ( see the onc on Tues ) I get the impression that you sit with a needle in your vein for a couple of hours. Not sure how/if I will cope very well. I keep worrying about it, are there any other options other than arm veins?.
Thanks a lot.
Ann x
Hi Ann
You sound a bit like me. Scared of needles!! Well I was so nervous before my 1st FEC that I couldn’t stop throwing up. How ridiculous and that’s before anything happened! Anyway treatment was delayed til the next day where they dosed me up with valium. It was fab… didn’t even know the needle went in, didn’t feel the cold cap and basically slept through it…marvelous. Next one 1st July so I’m having same again. So far I have hair but aparently it will prob start to come out next week. Deep joy.I’ve got my wig at the ready. My hair was very long and was advised to have it cut shorter so it wasn’t so heavy which I did.
Trouble is, if i keep my hair I can’t get my grey roots done…oh the dilemma of being so shallow and vain. Prob best to let it all go and wear the wig…???
As far as the chemo goes it’s not nearly as bad as I thought. Fit for nothing 3days, then really back to normal.
Good luck with it x x x
Hi Julie
I think we must have been seperated at birth!! I could have typed what you just did.
Have been having exactly the same thoughts.
Only found out yesterday that you can’t dye, brush, wash it properly until recovered from chemo. With my hair that means I will look like doc from back to the future for months, so the wig might be best.
Think you might have saved me with the vallium idea, never entered my mind to ask for something to calm me down it might just work.
Have been posting on newly diagnosed for a while title what should I do, would be nice to hear how you are doing if you fancy joining in.
Thanks a lot
Love
Ann
xxx
Hi Ann
Don’t know if you’ve read the thread - OK so who’s still got hair. There are some very amusing takes on the whole thing - at least we’ve all kept our sense of humour.
I know what you mean about not being able to do anything about/with your hair if it stays put. As I didn’t like mine before it started to fall out I was OK at letting it go but know I have to deal with the hair colour (or lack of!) when it grows back. Plus horror of horrors (for me) it could be curly - not a look I need to have right now - I’d look too much like my dear Mum! Guess I could be wearing my lovely highlighted wig for many months to come! By the way it’s brilliant as the highlights don’t grow out and it looks the same every day, just plonk it on and away I go. So don’t be too upset if the cold cap doesn’t work, there are ways and means of still being beautiful!
Chemo isn’t as bad as I thought either. Get the nurses to explain what they do, I assumed it was all given by IV but in fact mine is by syringes that go into the cannula they fit - which is the only slightly painful bit and even that isn’t too bad. You may be on a different type of chemo though but you can ask if you want to know more, the nurses are usually brilliant.
Good luck with onc appt and make sure you ask any questions you need to, it should help you get things clearer in your mind and not worry so much.
Bye for now
Nicky x
Hi Nicky
Can you wear your wig over your hair, that is probably a silly question but have wondered what happens as your hair is growing back.
Has been really windy the last couple of days here and I have started saying, it’s windy enough to blow your wig off!! I have visions of that happening in the middle of Tesco car park when I get mine. It’s funny but in my mind as long as I have hair I can feel as though I am normal but once it’s gone I’m worried that people will feel sorry for me, and I would hate that to happen.
Will check out ok so who’s still got hair, could do with a laugh.
I am really really hoping that I take the chemo in my stride, bit of a whimp when it comes to veins unfortunatley.
Are you at work or having some time off.
Love
Ann
xxx
Hi Ann
I still have got hair but it is becoming patchy and the rest has been cut short - about 1 cm all over. I didn’t wear my wig before this though. Having said that there is a lady having treatment at the same time as me and she has a chin length bob (hair that is rather than a person ha ha) and is losing her hair quite a bit on top but still wears a wig over the top. I guess it’s up to the individual. I personally wouldn’t have worn my wig if I still had reasonable length hair. I wear my wig when I’m out and about so I don’t get the sympathy looks. I keep my hair covers/ pull on hats for when I’m at home. I am really pleased with my wig (as I keep boring people with!) and it gives me a lot of confidence as I know it would be very difficult to tell I’m wearing one. The worst bit for me will be if my eyelashes and brows go - now that would be difficult to disguise - again see the aforementioned thread for details of our ‘research’! I have also worn my wig in my car with the roof down, at 60mph and can report that it stayed firmly in place so the odd gust in Tesco Car Park shouldn’t be a problem as far as I can see as long as the wig is pretty snug to begin with.
I think when the great day arrives and I’ve finished chemo and my hair starts to grow again I will keep doing the same thing until I feel happy going out without my wig. That could be the difficult part as my hair would be longer than it is now. I might be able to get away with some wide hairbands though as long as I don’t have any noticeably bald bits - time will tell.
I work part time anyway so have gone down to doing mornings only on my ‘good’ days. Unfortunately for me I’m on a long term, ad hoc contract so don’t get sick pay but the company I work for are great and I now have a laptop at home if I want to work extra but not go into the office. I must say wearing a wig all day is why I only do mornings, at least at home I can just cover my head up with something more comfortable.
Please feel free to ask any more questions, it definitely helps to have as much info as possible.
Nicky x
Hi ladies
Have just joined the thread. They say laughter is the best medicine so maybe we’ll have to start sending through jokes as well.
I put the cap on at the beginning and it only lasted a minute as I decided I couldn’t handle the discomfort. Well done to you girls who have persevered as it seems to work. One of the girls at my session on Friday was doing her last (6th) and was using the cap and has kept her hair, slightly thinned but it’s still there and she’s glad she did it that way. It’s worth trying it out.
If you decide against it there are some lovely wigs around these days and accessories too, and don’t feel too worried if you start to loose it - it’ll grow back. I bought a purple wig at a fancy dress shop but haven’t been brave enough to wear that one anywhere yet! My hair is very fine and straight anyway so am hoping, when it grows back, it might have a bit of a curl. Well, I say that now … I too have had the top down on the car and the wig stayed on. The piece of string I’d tied around my head may have helped …
My chemo hasn’t been as bad as I’d expected either. Very tired for several days afterwards but start to feel better then.
Ann, as Nicky said, make sure you ask lots of questions when you go to see the consultant and with the nurses too. I wrote mine down beforehand as knew wouldn’t remember everything at the time.
With regards to veins, like you I’ve always had trouble in the past with nurses trying to find one on me so I’ve found the best thing to do is make sure I’ve drunk a lot (normally something hot - I go for hot chocolate) just before I go, and also put my gloves on on the way. Seems silly in this warm weather but my hands are always cold anyway and it seems to work!
Best of luck.
xx
Hi there
Ive used the cold cap with great results for 3 chemos, my hair is long and thick, my trick is to go with wet hair and apply leave in conditioner just befor the cap goes on, especially on parting and fringe, and washing once a week , no straightners,hot hairdryers, over brushing, and no hair dye (my roots are around an inch now!!! rather roots than no hair)
lots of luck with it, its worth a go,
Sue xxx
Worked for me on my first lot of chemo which was FEC. Had the cold cap on for half an hour before and think it was 2 hour s afterwards. The actual infusion only took about 20 mins so could cope with that. After the first dose 14 day later hair did start to come out. But you couldn’t tell and I stayed like this for 3 months and still had loads of hair left. The next 3 chemos were a different story. The infustion takes 3 hours and there was no way I could have the cold cap on before during and afterwards as that meant about 5 hours of it. So said no. My hair came away on day 14 as predicted in handfuls. Am no wearing a wig to work and baseball caps at all other times. But my last chemo tomorrow. Thank the lor. So hopefull will have new hair growth soon…
Hi
I am using the cold cap and yes you do have to go through the pain barrier a bit for the first 5 to 10 minutes. This is very like brain freeze from eating a lolly too fast. I stick my finger in the helmet over the 2 small sore points I get above the temple, until it goes. That is the only part that bothers me and is why people give up very quickly. You just have to believe that this will pass and distract yourself. After that I cannot even feel that it is cold at all, especially the sides and back of my head do not register the cold at all and they have kept all the hair quite well. All my loss has been mainly on the top so I have a side parting and combover. Then I carefully hold this down with an extra wide stretchy hairband from H & M at £2.99. I promise I do not feel a thing after those first minutes and the final 2 hours is nothing if you can spare the time. I have free refexology during this time. I sit next to a lovely lady of 73 in a cold cap and she must feel cold more then me. She has not even thinned, lucky her. The chin strap is annoying as it has to be tight to try to keep contact with the top of your head, that is the only part I moan about. The bonus is I have kept eyebrows, eyelashes and it has cured me of any headaches throughout my treatment so far. Not sure if this is connected to the cold cap or not.
Good luck
Lily x
Hi Mebox Sue and Mandy
Still can’t decide what to do, I think I might get the wig and try the cold cap at least once.
Just wanted to say that you have all made me feel much calmer about what’s to come. I know it’s not going to be easy, but I don’t think we give ourselves enough credit for how strong we are.
Wouldn’t have believed it if anyone had told me that I would have coped so well so far, and still managed to crack a few funnies even on bad days.
Had a really good laugh tonight with a friend and her hubby about stick on eyebrows and nipples, about where they would end up on my face/body if you didn’t keep an eye on them!!
Has everyone gone for a wig similar to their own hair. I saw a girl tonight with a lovely blond bob and thought I could try that instead of my long blonde hair. But also want not to draw attention to myself. Decisions decisions.
Seeing the onc tomorrow afternoon to get definate treatment plan, one more step along the way.
Love
Ann
xxx