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FEC and Cold Cap - when do you start to lose your hair

35 REPLIES 35
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Re: FEC and Cold Cap - when do you start to lose your hair

hi Emily,
I'm using the cold cap although my hair is not as long as yours. Its probably just skiming my shoulders in a bob. My problem is its coloured blond and as I haven't been able to colour it my rots are horrendous and as I can;t straighten it it looks c**p too. So today am getting it cut into pixie style and will probably colour in darker with veg dye, maybe red ( was dark before).
I worried about being attractive to hubby, had mastectomy but hes been great, hes a leg man anyway, but really I'm not sure we give them enough credit sometimes, I'm sure he finds the whole of you attractive and although it does take some getting used to I found the easiest was of coming to terms was to just get on and think so I've got one boob, I'm still me, still the same person and our sex life really hasn't changed at all. By the way I'm not as young as you (i'm 46) but its the same no matter what age, the insecurities are still there.

Good luck with cold cap or whatever you decide to go with.
Caz

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Re: FEC and Cold Cap - when do you start to lose your hair

HI all, just been reading the thread. Im about to start chemo in 2 weeks. I was advised not to bother with the cold cap but after reading this I think it might be worth a go. I have long thick dyed red hair. Im so keen on keeping my hair as I always had short hair since the age of 16 and only just grown in long (im 29) I love it long to! I know I ll have to have it cut a little shorter but thats better then losing it and growing it from scratch again. If it doest work I will just have to accept it but it does seem to be a kick in the teeth after having just grown in after all these years! I have a mastectomy to so will feel even more unattractive to my partner. I worry so much about that side of things. Im quite insecure anyway let alone losing my breast and hair. Im hoping this will actually make me a more confident person by the end of it.

It would be nice to hear how some people have coped in their relationships especially younger women.

Emily

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi there

I havent used the cold cap with your chemo but I have with 4 others and kept varying amounts of hair some just thinned all over, some thinned at the sides and back where the cap finishes and one I thinned quite a bit luckily Ive got quite thick hair. Just thought Id add a couple of tips that Ive perfected over the last few years!!!!

Wet your hair just before the cap goes on, a good dip in the sink and wet the roots on top thoroughly, then a good spray of leave in conditioner I found a great GHD one, again a wide tooth comb lots of tlc, wash only if desperate! dry shampoo is great! and no hairdryer again unless desperate, keep your eye on your timings aswell, a little extra can help! When your finished, switch it off and sit with the cap on until its not stuck to your hair! and dont it wash for a couple of days afterwards.

A lot of hassle but worth it if it works!

Good luck Im using it for Epi at the moment, only had one so fingers crossed its worked again!

Sue xx

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Re: FEC and Cold Cap - when do you start to lose your hair

Thanks Tracy. I'm trying to wash only when really necessary. No styling products and a wide tooth comb. I've had a pixie cut so no tangles - you've given me hope. Thank you x

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Re: FEC and Cold Cap - when do you start to lose your hair

Pheebster

I wish you every success with the cold cap.

One thing I will say that I have learnt works for me, is that I really loose lots of hair when I wash it. I have now managed to reduce to a minimum the number of times I wash it. It just falls out in handfulls and gets so knotty when it is washed!!.

I am now half way through my 6 x FECs and can still keep going so far without scarfs etc, I am hoping so much that it lasts for the next three.

Good luck

Tracy

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Re: FEC and Cold Cap - when do you start to lose your hair

This is really encouraging. I used the cold cap last week and didn't find it half as bad as I expected to be honest. I found it excrutiating for about 3 minutes then I kind of forgot about it.

Am currently having regular nightmares about my hair falling out and waking up in cold panic! I am sleeping with a scarf tied on my head though and only washing every 3-4 days with olive shampoo from Body Shop.

Such early days for me but so glad it is working for your ladies. The Chemo nurse did remark how thick my hair was last week, so I am hoping that if I get major thinning I may still be one of the lucky ones.......

Re: FEC and Cold Cap - when do you start to lose your hair

Hi

I'm due to have my 5th FEC tomorrow and am still using the cold cap. My hair is dark brown and was thick previously. Hair is falling out and the condition is pretty awful but the thinning really only shows at the parting which has gradually got wider. However, nobody can tell except for me I think - helps being tall too!! Still bought some buffs and hats initially incase it got worse and I've also got a wig lined up just in case it does fall out drastically but I'm really hoping it'll last out until after FEC no.6.

Good luck to those trying to stick it out with the cold cap!

Sarah

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Re: FEC and Cold Cap - when do you start to lose your hair

ostrich

I have now just had my third FEC with the cold cap, and the hair is thinning, but definately only myself and hubby can tell.
I am going to continue with it whilst it is giving me good results.

With regards to getting wigs etc quickly, my local hospital said if I needed one they could get me one in 48 hours, so I have decided to just buy a few headbands and wait and see.

Tracy

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Re: FEC and Cold Cap - when do you start to lose your hair

hi Ladies, just reading this thread and intrigued to know whether you've got any further with your research Pheebster? Went to see onc yesterday and was told will be having 6x FEC. He said that the cold cap has a 50% success rate?!? I was sure it was lower than this. My hair (naturally and un-highlighted/dyed) is black and fine and I have suffered with spots of alopaecia over the last 10 years which all eventually grow back).

My hubby thinks I should go for the cold cap given what the onc said re success but he said he had no knowledge of the affect of alopaecia on it and I think he was over-exaggerating the success. Thing is do I go out and buy buffs/wigs etc just in case? Do they do refunds if your hair stays? Part of me thinks, why add to the chemo rubbish with having a freezing cold head during treatment if its going to either fall out anyway or at the least get thin and patchy? I'd rather just get used to the lack of hair and accept the coming loss than face the disappointment if it doesn't work. Who needs another kick in the teeth with this BC thing?

x

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Re: FEC and Cold Cap - when do you start to lose your hair

Blonde? I always thought red was the strongest hair type and blonde the weakest.....

Whatever way we turn this crazy disease has its own set of rules!

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Re: FEC and Cold Cap - when do you start to lose your hair

i asked the chemo nurse if it worked,she said it worked for a few people but they mainly had blonde hair?

Re: FEC and Cold Cap - when do you start to lose your hair

I don't want to sound negative but when I started my first chemo wearing the cold cap (I've now had 6) I was told by a couple of the chemo nurses that there is a small, but real, danger of not killing all the cancer when wearing it. Obviously it works by freezing the scalp so that the chemotherapy can't reach that area. There have been cases where people's cancer has come back in the scalp. As a consequence of this I decided not to use it as it seemed ridiculous to take that chance to keep some patchy hair. My hair started falling out around day 16 and I shaved it all off around day 25. I've got rather used to my new look and it's really not such a big deal. The wig is a bit of a pain to start with and was hot over the summer, but now I rather like how warm it keeps my head when I go out (which is the only time I wear it)! Check with your nurse/oncologist about their views of the safety of using the cold cap. I don't regret my decision as the hair thing is minimal compared to some of the other side effects!!

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Re: FEC and Cold Cap - when do you start to lose your hair

Pheebster

I can totally understand you worried about the chemo, to be honest with you the worry before number one is in fact the worst time for me. I was more worried before the first than the second, by the second one you understand how it works, and I think having experienced it once it makes it easier. Although obviously it is not a barrel of laughs!!

I think I am getting good results, I am into week 2 of my second FEC and using the cold cap, and still have a full head of hair, or at least this is how it looks to people, I know I have lots some. My hair is dark, medium length, dry,curly and dyed!!.

Good luck in your cold cap research, I too would be interesed to know if there is a type of hair it works best with.

Thanks

Tracy

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Re: FEC and Cold Cap - when do you start to lose your hair

Can I ask what type of hair people find the most success rates when using the cold cap.

ie: those of you who had good results, do you have thick hair / short hair / dark or light hair?

Just wondering if there is some kind of pattern for success with using the cold cap. Mainly because I am due to start chemo on 16th Oct and am naturally crapping myself. I am starting with 3 x FEC and 3 x Taxotere. I am putting all negative thoughts to the back of my mind and steaming in....i had two days of tears and nightmare scenarios last week and it took its' toll on me, so I am now going down the 'lets just get on with it' route!

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Re: FEC and Cold Cap - when do you start to lose your hair

hiya all,i wore the cold cap for my first FEC,but obviously it didnt work for me,started falling out day 14,washed it day 16 and loads more fell out,had knots that i couldnt untangle.so had to cut them out,got fed up with it falling all over my clothes,and in bed i kept getting hair in my mouth off my pillow.so day 19 had the lot shaved off,a lot better,gonna get a wig and some nice bandanas,,suppose it only works for about 10% of people i wasnt lucky enough to be one of them,but not to worry,it will come back eventually, take care Val x

Re: FEC and Cold Cap - when do you start to lose your hair

Hi all,I had 4xfec,4xtaxol.Still had a good head of hair using the cold cap with the fec but it came out in handfuls on the taxol.I kept the cap til the end which was sheer doggedness on my part as I hardly had a hair on my body let alone my head!
Good luck to you all,
Josie x

Re: FEC and Cold Cap - when do you start to lose your hair

Weird how mine has all gone - except the leg hair! Thought it had until I was sitting out in sunshine the other day and was aware of sparse but really looooooooooong hair - I think I've got teeny bits of fluff sprouting on head tho - just had 4th FEC - How you doing Ann - long time no hear?
All best and love to all x

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi Tracy

Keeping everything crossed that it works for you, I still have my eyelashes and a thin line of eyebrows which I can powder in I think the cold cap has helped save them. Leg hair is still hanging on and no 4 next Tues, looking forward to loosing them!!.

Good luck

Ann

xxx

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi All, just thought I would update you.

I am on day 21, as I have my second FEC tomorrow.
So far I have started to lose leg hair and body hair on about day 17, however so far so good with my hair.
I am only losing a few hairs a day which is probably the same as normal. I only wash once a week, and I keep it tied back all the time.

So far I am thrilled, but I guess it could still go after FEC number 2.

Thanks

Tracy

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi all,

I am now on day 15 and all is going well so far, hair is still ok - I know this week is a crucial week as far as my hair goes, so fingers crossed.

thanks to all for their comments, I shall keep you posted.

Thanks

Tracy

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Re: FEC and Cold Cap - when do you start to lose your hair

Crystal, that was another thing...the condition of my hair (even using a B**ts sensitive conditioner) was rubbish. My hair's really fine so I had to work hard to keep it in good condition at the best of times, let alone when I was stuffed full of toxic drugs...

Buffs are available online...a quick google search for buffwear should do it...and the official uk online shop has a vast variety of patterns and a slimmer ladies version for a better fit. They're also available in places like outdoor shops or motorcycle shops.

Sarahxx

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Re: FEC and Cold Cap - when do you start to lose your hair

Thank you all SO MUCH for your comments and helpful hints. They really do help, and I now realise that on day 12 after my first FEC, I still have ages to go to see if the cold cap has saved any of my hair.

Personally I think I can live with scarfs, headbands and things to cover up some of my head, I just do desperately do not want to wear a wig.

I have been doing all the right things so far I think, washing once a week in warm water, using PH neutral shampoo, and have also kept is loosly tied up so that if it does fall out it will not make such a mess!. Also my hair is really dry and frizzy and really needs mousse to keep it nice, so a pony tail makes it just about bareable.

Where do you buy buffs from?

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Re: FEC and Cold Cap - when do you start to lose your hair

Marita, like you I didn't go for the cold cap and started losing hair down below at about day 12 then on my head from about day 14. Like Ann I was able to wear a wide hairband and pull my hair into a ponytail to disguise the thinning for the last week. Buy yesterday (day 21, 2nd chemo) I washed my hair and lost virtually all that I had left...will be getting it shaved asap...it seems to go pretty quickly when it does decide to let go.

My Mum was given cotton jersey turbans when she had chemo and I've been wearing them in bed to catch the hair, but will keep them on for cold nights in the future. At the moment, like you, I'm just wearing buffs, but I have some scarves and hats too. I still can't imagine myself in a wig, but may pay a visit to the wig shop just to see if they do a turquoise one...

Good luck to all of you brave enough to do the cold cap...
Sarahxx

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi all,

I lost mine twice, the first time was the worst as I had waist length hair!! Cut it short and lost it all. But after the FEC it grew back. They put me on Taxotere and there it went again! I didn't use a wig, just used scarves and bandanas. Lots of different ones to choose from. Don't worry, you do get used to having little or no hair. Worst part was losing eyebrows and eyelashes, but they come back fairly fast.

Chebsy, how did you like Gambia? I lived there for 14 years. My kids have a Gambian Daddy. Had to come back to Belgium when this b.....d thing hit me.

love Maroke

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Re: FEC and Cold Cap - when do you start to lose your hair

Hair thinned quite a lot just before 2nd EC (with cold cap), then stabilised a bit, despite vigourous washing every morning (a girl has to wake up somehow!) and ignoring all advice re baby shampoo etc (sorry Anndi!). Got fed up with it thinning and asked my sis to buzz it down to a No 2, with a little TinTin quiff at the front and a mini-Mohican at the back. Tried wigs but...urgh, no, not for me. Scarves,caps, bandanas and Buffs are fine. I like them. Hair started growing again after starting Tax, but no sign of eyebrows or eyelashes yet!

Stopped cold cap after 3rd EC and weirdly, I don't seem to shed hair any more. I think the hair that's growing is the stuff I didn't lose getting a bit longer, not replacement growth. Still. It'll do for the time being. I didn't mind the cold cap at all, but make sure the nurse covers the tops of your ears - it's apparently very easy to freeze the cartilage by mistake. And it does extend your time in the chemo ward quite a bit.

Good luck!

L.

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi Crystal

I've just finished my last of 8 treatments last Monday (4 x FEC and 4 x Docetaxel). Used the cold cap throughout and still have hair although quite thinned but can get away with it if I tie it up. I did initially loose a fair amount around day 15 after the very first treatment but it eased off and since then it's just gradually thinned out. The initial lot that fell out has now started growing back.

Good luck with it - I wouldn't pretend that it's an easy option, but it's certainly do-able.

Cheers
Sarah
x

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi Crystal

Had my 3rd EC a week last Tuesday and have been using the cold cap throughout. I have lost massive amounts of hair since about day 17, but still have enough to pull back into a ponytail. There is a lot missing on top but no one can tell, not sure how long it will look ok for but it has gotten me through this far. You will probably loose a lot of hair throughout the best advice I was given was to have it cut into a long bob as I can wear a thin plastic headband to keep the front pulled back and tie it in a ponytail, this helps stop hair falling out throughout the day. The top ( monks patch ) tends to fall out first and everywhere else thins.

Some tips

Use a ph neutral shampoo Dove do one ( Tesco )
Silk pillowcase ( stops hair pulling )
Only wash twice a week ( luke warm water )
Use a wide tooth comb ( don't brush )

Hope this helps.

Take care

Ann

xxx

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi Crystal
I had 6 x FEC and used the cold cap throughout - hubby and I are retired so the extra treatment time was not a problem - in fact I used to fall asleep, tucked up in a duvet, whilst hubby read a book. Although my hair thinned significantly on top, no-one was tactless enough to remark on it. I got an NHS funded wig before I started FEC, just in case, but only used it on a "bad hair day". Oncology nurse told me at the beginning that the Paxman cap only worked in about 10% of cases in her experience, but I got lucky!

Liz.

Re: FEC and Cold Cap - when do you start to lose your hair

Hi Crystal

I had my FEC no.3 last week and have been using the cold cap each time. Despite the extra time time and the initial 10 minutes of discomfort I've found it OK. And I felt just like you in that I desparately wanted to keep my hair.

Unfortunately since no.3 my hair has been falling out considerably more than before which I'm finding quite frustrating/distressing. So for me, I'm in limbo as I'm not sure how long to stick it out with the cold cap. And based on what everyone says, maybe accepting the loss and wearing a wig (that will probably look much nicer than my hair at the moment which has gone thinner and all frizzy) might be a better option.

On the other side, I'm sure you've read some of the other threads with people who have used them and have managed to last out with just thinner hair - it's all a very personal decision- but I wish you luck whether you stick with it or not.

All the best, Sarah xx

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Re: FEC and Cold Cap - when do you start to lose your hair

Hello Crystal and others

I too am on FEC but didn't try the cold cap. First noticed hair loss down below after 14 days! 2 days later the hair on my head was falling out by the handful and getting everywhere. I was sweeping up more of my hair than the cat's so went for a number 4. The following evening - last night - I went for a number 0 'cos it was still falling everywhere and baldy patches appearing. (My OH did it for me and reckon I look like a proper West Ham fan now!!) I'm now much happier wearing a Buff. I also got a very cold head in bed last night so need to find something to wear over night if any one has any suggestions?
All the best with your treatment x

Re: FEC and Cold Cap - when do you start to lose your hair

hi Crystal - decided not to do the cold cap as chemo and travelling take long enough and results aren't guaranteed as you can see fro various threads. Hair started shedding ....and I mean shedding on 14th day after chemo - they stopped letting me on the furniture so decided to go for the all off shave. Quite a relief as hair seemed to be turning up everywhere.

So now I have less hair that my 8month old grandson - and have earned a new name - bit of a biscuit - Granny Baldy! It's actually a lot easier than I would ever have imagined. Didn't go down the wig path and have a great variety of hats - people in the village are used to me in hats - bought quite a few in Morocco a couple of years ago when we did the Plymouth - Dakar challenge - actually it was Boscastle to Banjul - but I digress.

Life is full of unknown challenges and it's good to feel you can stick two fingers up at the sh**e we are going through - becomes empowering somehow!

Halfway through FEC - Yayyyyyyy!

Love and good vibes to all xx

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Re: FEC and Cold Cap - when do you start to lose your hair

Hi Chrystal, I tried cold cap but couldn't stand it so stopped using it. I started to lose my hair slowly after 17 days, I found the worse time in the shower and it coming out, it has thinned out a lot now and I am due my 3rd treatment on Monday. I bought a wig last Friday and am quite pleased with it, so if the worse does happen give it a go, I wore mine on Monday and my sister thought it looked very much like my own, so don't despair there is alternatives we are all different so try it. Take care junieliz

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Re: FEC and Cold Cap - when do you start to lose your hair

Mine started to go a few days before 2nd FEC (without the cold cap) so think you'll probably have to wait a bit longer to see. I shaved my to a number 2 as it looked worse longer with bald patches than it did short. Like holly56 I'm very happy with my wig and although I thought I'd be devastated at loosing my hair it's not been as bad as I thought. I happily wander round the house as a baldy! Must admit though, that since I cut it all very short I don't think I've lost any/very much and I've now had 4 FEC and have a small covering all over so I look a bit like a dandelion.

I'll keep my fingers crossed for you that it stays put!

Nel x

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Re: FEC and Cold Cap - when do you start to lose your hair

HI CrystalT
I had 3 cycles of FEC and kept my hair throughout using the cold cap then I moved on to Tax and I lost the lot! although it was upsetting at the time Holly is right you do get used to it. I found it hardest wearing my wig the first few times, I felt deperately self conscious. I have little one's at school so doing the school run with my "new" hair was difficult, however everyone was super supportive and it's true you never had bad hair days!! Good Luck!

Re: FEC and Cold Cap - when do you start to lose your hair

I lost mine just before my second course about 3 weeks after treatment and to be honest I was glad to see it go as the condition of it was awful. I was also very happy with the wig I had got.
My hair is growing back now but I am still wearing my wigs as they look better than my hair and it is so much easier to get ready in the morning.
I hope yours stays intact but if it doesn't it isn't the end of the world and you do get used to it.
x

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FEC and Cold Cap - when do you start to lose your hair

I had my first FEC 10 days ago, and used the Paxman cold cap as I desperately want to keep my hair if possible.

10 days on and so far the hair is ok, however I wonder when people started to lose their hair. I guess it is far too early for me to know and I do not want to become over confident that it has worked.

Just curious to know when it would start to fall out?

Thanks