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
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
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!
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
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
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
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
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
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.
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
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
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.
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
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
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?
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
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
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
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
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