USING THE COLD CAP FOR FEC

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Hi

I’m starting my first Chemo (3 FEC followed by 3 TAX) on Friday 8th August and am going to have the cold cap. However my ONC said that he didn’t know of anyone whom the cold cap had worked for that had been on FEC - could any give their opinion on this?.

I have been looking at some of the other discussion topics and have found the tips on how to handle chemo very helpful, I have typed them up and my husband wants me to put them on the noticeboard in the kitchen which will help him (AND ME!!!)

Thanks for help help on the cold cap

Scared

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hiya Scared! im avin fec chemo at the mo and altho ive decided not to bother with the cold cap, it was offered to me . my mate who i met in hospital when havin lumpectomy is trying it. i think it’s worth a go if you fancy it. this whole illness is a very unpredictable affair anyway isnt it? i think as long as youre aware that it may not work then you have nothing to lose. anyway, you could be the first one and prove him wrong! If he/ she says this to everyone then he prob puts quite a few people off tryin it anyway! You stick to your guns and go for what YOU want! best of luck witk it. Gill x

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Hi Scared,

I used the cold cap during my 6 sessions of FEC 6 years ago and it worked for me. My hair thinned a little but not obviously so.

I have to say it made my head really, really cold during treatment and gave me a headache for the first 20 minutes. Even though I had FEC in August, I had to wear a fleece, scarf, gloves and a blanket during treatment otherwise I would have felt really cold. I wore a sort of biggles helmet which froze my head to minus 4 degrees and left my hair with a covering ice when it was taken off!

However it is doable and for me it did work but you need to be prepared for the coldness of it.

Good luck and I hope it goes ok.

Wendy x

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Hello Scared

The cold cap didn’t work for me but there were other women having FEC at the same time who it worked for very well and who lost hardly any hair. They were very careful to follow other advice i.e. try to wash your hair only twice a week, comb only with a wide toothed comb very gently and - one women told me that she was advised to sleep on a satin pillow which she did and had a wonderful head of hair at the end of 6 FEC.
It’s certainly worth a try.
Very good luck.
Anthi x

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Hello Scared

I had my 6th FEC on 23rd July, and used the cold cap all the way through. Im 28 yrs old, and always prided myself on my beautiful long hair. I did not cut it short (as was advised). I felt that I could manage it better (not washing it often, not using hair dryer or straighteners), if it remained long. I had it cut to just below my shoulders instead, just to reduce the weight.

After my 2nd chemo, it started to thin slowly. Now its very thin, and I have almost, a bald spot on top. Saying that though, comments from friends are that they can hardly tell! I still look like someone with a full head of hair, be it very thin! I always considered myself to have thin hair anyway! But now, I realise it may have been thicker than I thought.

My hairs still coming out but hoping it stops soon. I am confident that I will not be going completely bald, and I wont need to shave it off!

My final thoughts are that it was worth it, although it has made having chemo, a very dreaded experience. If Im truly honest to you, I feel chemo would have been alot less painful, if I hadnt have used it, but then being a girl who loves her hair, it was worth the pain. I can say that now I have finished!!!

Just be prepared for extreme cold, which gives you a headache and makes you feel sick. Yes you do need warm clothing, no matter how warm the weather. It helps if they give you a heat pad. Also, you need a friend who you can chat to for england!!! Making the time go quickly is the key to sucess with the cold cap. Someone who doesnt keep you entertained is no good for a chemo buddy, especially when you use the cold cap!

Just to add, I washed my hair 3/4 times a week to start with, then tried to drop it to 2/3 times. On special occasions, I used the hairdrier and straighteners gently! And I gave up with the satin pillow. I never have hair on my pillow. It comes out when I wash and brush it, and just generally during the day. Be prepared to have hairs everywhere, if your hair is long, they end up in very private places!!

Hope this helps. Goodluck.

Anne xx

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Hi scared

I think the thing is to give it a go… there’s no harm in trying it the once: if you don’t like it, don’t use it again. If it doesn’t work, you’ve lost nothing. If it does work, then yay!

As for the tips for chemo - they work brilliantly!

Good luck
Vicky

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I used for 4 FEC and 4 Taxotere, on the FEC I had slight hair thinning, was still using the hairdryer and even tonged my hair to go on a night out, it wasn’t as good with the Tax but i still managed to fool everyone from the full extent of the thinning by wearing it in a ponytail. I never once had to wear a cap or scarf so never got any stares on school runs etc. Infact a rumour was going round the gossip school mums that I wasn’t having chemo.

I used simple shampoo and conditioiner, did use baby shampoo to start with but now hate the smell as it reminds me of chemo and it really knotted my hair, bought a wide toothed comb and every morning would gently comb my hair over the bath for all the stragglers to come out together, it was a bit upsetting at first but I was amazed at how much hair you can shed without it being noticeable.

I also had my hair dyed back so I wouldn’t be bothered with dyes and roots and had it cut to shoulder length with good layers to take weight out.

My onc and the chemo nurses were really impressed and noted the cold cap as being successful for me, my onc doesn’t usually offer the cold cap to taxotere patients but I was allowed to continue due to the good results with the FEC.

Its worth a try and if you dont mind the extra waiting in the chemo suite then go for it, I got used to it and when having Tax and herceptin the same day I would fall asleep wearing it.

Debbie

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I used the cold cap last year and it worked for me. My hair did thin out and my neighbour very nicely told me my parting was getting wider by the day, however it soon filled out again after the treatment was finished.

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I used the cold cap too and although my hair thinned on top (I could see my scalp), none of my friends remarked on it. The helmet is uncomfortable, and your body does get very cold. My Onc nurses wrapped me in a duvet, put a hot pad on my arm where the infusion was, brought me as many hot drinks as I wanted…and I used to fall asleep, often having to be woken up at the end of treatment. Funny thing was that my hair stopped growing during the 4 months of FEC, and when it did grow again, it was tight curls, just a la Kylie! Wonderful…just wash and go…no hair drier or hot brush. I used perfume free Simple shampoo.

When I was first shown around the chemo suite, before treatment began, the nurse did say that the cold cap only worked with certain chemo combinations, and then in only 10%, but I figured I had nothing to lose…except my hair! My bc nurse gave me a voucher, up to £120, to take to a designated hairdresser/wig shop, before I started FEC. I chose a lovely wig which was similar to my own short, blonde hair. Took about a week to arrive, and they called me in to have it styled, in a private room at the back of the shop. I was treated with respect at all times, although in floods of tears. Hubby tactlessly said the wig looked better than my real hair! I did wear it a few times, but didn’t really need it. Will donate it to the McmIllan Mustard Tree centre.

Give it a go…I believe that if you are going to lose your hair,it will be after the 2nd dose of chemo. I was terrified to wash my hair after my second dose in case it all came out in my hands like a drowned rat…but had to get lucky sometime, and only a few hairs came out…well, enough to plug up the shower drain.

Good luck with it,
Liz.

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Hi i used the cold cap for 4 fec and it worked. Yes its cold but i didn’t feel the need to wrap up but i never feel the cold anyway. The first time i put it on it was a shock for twenty mins then you get used to it. The draw back is having to keep it on after chemo finished. The first time i had to keep it on an extra 2 hours. but it didn’t bother me and the time went quick. The second dose they checked the amount of fec i had and said i only needed to have on an extra hour and half. I was so sick with chemo and the hospital thing i wanted to get home asap so after the third i took it off after an hour. Still no problems not even an extra hair fell out. Chemo no 4 was to be my last as couldn’t cope. When they finished my fec i was sick. Panic i think. All the build up. Anyway i kept cap on for half an hour and then needed to get home. I had had enough i didn’t care. My hair had an extra couple of dozen hairs a day come out nothing really. This just proved to me it did work and if i hadn’t used it i would have been wearing a wig. something i hated the thought of. I did cut my hair a bit shorter than normal. I brushed it the same as always. I did wash it once or twice a week. I used normal shampoo but warm water not hot and i blowed dried it every time on a medium setting… I must admit first time i didn’t want to wash hair in case it fell out but then i thought well i cant stop it so if it is going to fall out it is… so try it every bit helps. One tip make sure nurse soaks hair in conditioner first. This smell made me feel sick in the end and i took my own. I will never buy dove again…
HAVE A GOOD DAY. NICETO SEE THE SUN IS BACK AGAIN

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I used the simple polypropene helmet (rubber things kept in the freezer & changed every 20 minutes) - removing it a soon as the IV was taken out as I couldn’t be bothered hanging around and it didn’t seem to be an option here in Finland, anyway, where very few use it at all. It’s worked even at this reduced, failry comfortable level. Before chemo started I cut thick, waist-length hair to 1 cm to spare the pain of involuntary loss, but perhaps I needn’t have been so radical, because a lot remained and as it has grown it has covered my scalp so that a headband or sunglasses is enough to disguise thinning above the ears where the cap doesn’t grip (grew out white in front, dark at back so I’ve henna’d it dark red as I’ve done for years). I have only used shampoo on it about once a fortnight, conditioner several times a week, scalp massage and icy rinse each time, no comb at all, just fingers, no hair dryer. Today was my last of 3 TAX followed by 3 x FEC & I’ll laugh if it goes over the next weeks - but it’s been great not to bother with frightening the family with a shiny scalp (I was secretly dreading this as much as anything) and always having hair visible under a scarf or wide headband when I go out. I never wore the national-health wig at all.

Worth trying, I’d say - especially as I didn’t do the full ordeal and it still worked for me.
M-L

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I too kept my hair on FEC. It thinned a little at first and I had a slight bald patch on my crown which wasnt very noticeable.I had very long thick hair and cut it to mid back length.I didnt find the cold cap that bad.It did give me a headache but nothing I couldnt handle and well worth the effort - certainly on FEC…Good luck!

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I’ve recently read that there are some chemos that respond far better with using a cold cap than others. I’ve never tried it myself (have lost my hair twice) but the majority who have used it have said similar to the comments above that they have a baldish spot on the top of their head.

The chemos that are supposed to work better with it are:

Docetaxel (taxotere)
Paclitaxel (Taxol)
Epirubicin
Cyclophosphamide

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Hi guys

Which cold cap did everyone use the one straight from the freezer or the machine that keeps the temp constant?. I’m using the one from the freezer, just wondered which had the most success as I have been shedding lots of hair today day 17 after 1st dose.

Thanks

Ann

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Hi everyone,

I used the cold cap with FEC for the 1st round and it seemed to be working however by the time I was ready for the 2nd round (just had it ugh!) it had started to come out so I decided not to bother as it added so much time to the treatment and made the whole affair slightly more uncomfortable. But saying that if it had been working I would have carried on. Really a decision you have to make as it happens but go for it if it is working. I think it might depend on the type of cold cap used the one I had didn’t fit very well.
Good luck,

Bevy

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Hi Ann,

I used the machine that keeps the temperature constantly below freezing and only lost a small amount of hair ( which was good for me as I already had thin hair ). I noticed that every time the temperature setting rose above minus 4 degrees the machine kicked in to make the cap colder. Very cold but bearable.

I also had the problem of going off certain foods I’d eaten during chemo when I ate them afterwards and would suggest that people undergoing chemo, don’t eat their favourite foods whilst undergoing treatment.

Good luck you all.

Wendy x

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Hi Wendy

Thanks for that. I am using the one that comes out of the freezer, you can hire the one that you used but the chemo ward said that they had the same success rates. I am sure that being kept at a constant temp must be better than one defrosting, beginning to wish I had hired one as I have lost quite a bit of hair today.

Thanks

Ann x

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It worked for me on the FEC. Was uncomfortable and didn’t like it but it was bearable. I did lose some hair but no body else could tell. Kept my eyebrows, and lashes etc etc. But on the next set of 3. There was no way on earth I could wear the cold cap for 5 hours and said sod it. I am now sat here 5 weeks after my last chemo with about 3 eyelashes, more or less full set or eyebrows and an eighth of an inch of hair on my head and I hate my wig.

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Hi Ann,I used the one straight from the freezer.

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Hi Josyemarie

That’s made me feel better. Did you loose more hair after each chemo session?. I have lost quite a bit today, did you loose a lot straight away too?.

Thanks

Ann
x