Lynzi, I hate my curly hair too. In fact most people I worked with didn’t even realise I had curly hair! I used to have Brazillian blowdries which are fab - could almost wash-and-go. Going to wait until my hair’s feeling a bit healthier. I think we just have to accept that we’re just not going to look our best on chemo (although my skin was LOVELY!) but great if you manage to keep your hair.
Loli - I took painkillers beforehand and had a hot drink while it was being put on and never really found the coldness too bad…
Hi Ladies,
So glad to have found this particular posting (hello Gill!)! I’m now 3 chemos in - another 5 to go. I’ve been using the coldcap to try and keep my hair.
I find the first 10 minutes the absolute worse as it really IS like shoving your head in the freezer!! the rest of my body goes into shock as it tries heating up to compensate for this. Always end up rolling up my sleeves and kicking off my boots and my legs go all jumpy.But after 10 mins or so I’m fine. If I do continue with the cc, next time I go, I’m going to take your advice Sandytoes and take pinkillers beforehand and sup some Hot Chocolate! (think I’ll make myself a flask up of it, the coffee in the unit last time was dire!!) I’m also going to ask about these paper doctor caps?
Thing is, I’ve lost a lot all from underneath (I had my past shoulder length hair cut to just below my ears about 3 weeks ago), and I’m losing it on the crown. If you didn’t know me, you wouldn’t think anything of it, but my (curly dark) hair has thinned drastically! I can’t put my hair up because it does look weird underneath. At the mo, I’m pinning my hair back on top (like a 5 year old, lol), because this is disguising the lack of hair up there. Thing is, I’ve another 5 chemos to go - will I hang on to it??!! Is anyone else losing it from the crown? (I’m wearing the smallest cold cap and it is definately touching my scalp when I’m wearing it). I just can’t bear the thought of wearing scarves and looking like a cancer patient!! (I’ve got Esmerelda, my wig - but, she’s. a. wig.)
I thinned alot on the crown to the point where I had to wear little headscarves - think gypsy-fortune-teller type look with fringe and hair poking out of the bottom - so wasn’t screaming cancer. However, this hair started growing back over the course of my chemo (I also had 8 sessions) and by the end of my chemo it was a couple of inches long. So I have some funny short bits but had my hair cut into a short bob and will keep it short until the short bits catch up with the long bits.
I had a few points when I thought it hadn’t worked and was going to give up but am personally glad I persevered. Also “they” (breast care nurse and Paxman) say that if you continue with it your hair grows back much quicker. I don’t know if that’s true but there was a lady on the May thread who said this was the case with hers. However, it really depends on how it is making you feel.
Make sure it is a tight fit - and you can always try leaving it on for longer (tip given to me by Paxman - they are great if you want to call them with questions).
i did loose quite a bit of hair on one side of my head, but it was underneath so pretty much covered by longer hair on top (this i think was mainly due to the way i sleep) But it has all grown back. I can see whispy bits where hair is growing back along my parting too.
i found that after each chemo i did shed, but each time seems to be getting less, after no 4 I had minimal hair loss.
i’d say persevere for now, esp as you don’t find it a nightmare to wear the CC, and i’d second the hot choc, its the only time i drink it (and they have it in the machine on the unit)
I’ve posted this before, but no apologies for saying it again…
I would check with the dept before taking painkillers as I was “told off” at my first chemo when I told them that I had taken paracetamol that morning - which I did cos it was a cold cap suggestion from here. Embarassing because the next q was what do you do - and I mumbled “I’m a pharmacist”.
They are paranoid about painkillers masking a temperature spike and having had neutropenia since, I don’t blame them.
Lots of people have been told it’s OK but I’d want to stay in the nurses good books. Incidently I didn’t find the cold shock any worse the other times without painkillers - in fact the first time was the worst because everything was unknown.
Hmmm, think I will persevere then, especially as you say Gill, you had minimal loss after no 4 (I’m changing to Tax chemos 5 - 8, isn’t that what you’ve been on all along?)x
Interesting that hair makes a reappearance before chemo finishes! but does it look like you have 2 different sorts of hair on your head? (Mine is dark and curly. Will I have a wad of grey straight hair plonked on top of my head? Altho I know I shouldn’t complain, I mean, what if nothing came back at all???)
And yes, more creative ways with scarves sounds like a great idea, Sandytoes! making sure of course that my fringe and hair at the back is plain for all to see, lol. So a toupe won’t be in order after all!
and also interesting that you also had 8 lots of chemo too but managed to keep hold of a decent amount of hair. I was worrying that I may have had to resort to a severe comb-over using ALL my hair from one side!! The cc is definately a tight fit, my forehead is full of ridges when they take it off, sooo not a good look! and my hair was full of ice last time they took it off too
Also, I agree as re clear skin - mine has never looked so good! No zits, no nothing. (just watch, I’ll have a major skin break-out tomorrow!)
And thank you, tis a very flattering picture - NOT, lol.
Alice Cliche, I’m seeing my Onc next week, so I’ll add that question as re taking paracetemol prior to chemo onto my long list of questions to ask her. My chemo unit have always told me that taking paracetemol after wearing the cc is helpful to eradicate brain freeze, so I can’t see that taking it before would make a lot of difference. But I’ll ask, just to make sure. Isn’t it funny how different health authorities have different advice and ways of doing things.
I think having 8 rounds (I also changed to TAX for 5-8) does mean more hairloss. I met one girl who looked amazing after 6 FEC with a thick head of hair and didn’t need to faff around covering up areas! I’m not going to lie - I do have shorter hair that came through so there are different length hairs but you can only see it along the parting as all of the other bits are under the longer hair…if that makes sense…? But that just makes it look a bit thicker as it poofs up my hair out a bit. I just straighten the short bits and whack on loads of serum so they don’t frizz up! It’s the same colour and consistency as my old hair I kept - I don’t have 2 completely different types of hair!!
I was allowed to take paracetamol as long as I knew I wasn’t neutropenic - so no temperature or feeling dodgy. But Alice Cliche is right - you probably should check with your unit.
Hi lovely ladies I’ve just read your posts and it has given me hope! I’ve just had my 1st chemo last week I’m having 3 fec and 3 t. Cc was ok 1st 5 min was not nice but managed fine wi it, just keep having nightmares last few nights i dream i wake up bald and all my hair is all over pillow. It’s really disturbing. I need to get a grip! Any1 that did lose hair when did this start i no they say 14 days + but just curious. I’m using simple baby shampoo and simple conditioner once a week on my hair apparently it is ph balanced so ok to use. It’s not too bad i use alittle almond oil to tame my unruly frizz and define the curls! Using a silk pillow case to avoid draggin of hair. Due to pick wig up next week just hope i don’t need it! Good luck to everyone pls do keep us posted on progress. X
I’m having my 1st Tax (of 3) tomorrow after 3 E and to be followed by 3 CMF so 9 in total. Everyone tells me they couldn’t tell I had lost hair but I have lost a lot underneath and behind my ears am quite bald. However I haven’t lost anything from the crown yet. I guess if it comes back a different colour or texture at least it will be underneath and might not look so weird? I bought one of those thick furry hair bands which I may start to wear to cover it round the hairline - may just about to pass it off when inside, unlike my hats.
I found I lost most on 1st and 3rd, don’t know why but may have to do with the amount of conditioner and dampness of hair (loads on 2nd). My hair loss is worst between days 10 and about 17, but varies a lot.
I was told by the nurses to take paracetamol before using the CC. If neuts were low they wouldn’t go ahead with the chemo anyway and one dose is not going to mask a high temperature for very long. The first time was definitely the worst as others have said, not knowing what it would be like. But having the gauze on the forehead on the 2nd helped a lot.
I actually (sadly!) enjoyed the cold cap - no issues at all with wearing it - maybe those cold canadian winters as a child are finally paying off!! Only had first FEC last friday so no ahir loss yet but i am washing it every 2 or 3 day - straight hair and it looks and feels awful after 2 days! using simple shampoo though - just have to wait and see!
Oh i did have it cut quite short hoping less weight might mean less loss!
Thanks everyone!
marina i was told not to wash for atleast 4 days after chemo. Try to wash your hair every 4 days instead of 2 as apparently the less you wash it the better?! Good for you if you enjoyed it! atleast it is not uncomfortable for you. Mine was waist length but had it cut just above shoulders if too short I’d look stupid as thick dark curly and frizzy hair! Wat a sight,
Filosofie Thanks for your input really useful to no. Mmh i may invest in the head bands it Will help front of my head as looks rubbish as not used straighteners!
Good luck and keep going with the cc! Your hair will fall out, look horrible, scalp will feel prickly, you can’t really comb it or touch it, no massaging of shampoo on head, you will have nightmares that it falls out etc! … BUT … by chemo 5 your hair will start to grow, fine wispy bits at first, your patch on the top of your head will fill in and so will any wide parting! A stretchy hairband will cover the bald patch on the top of your head. (happens to us all the top patch and possibly around the ears!)
No washing your hair for 48hrs after chemo! Use a satin type of pillowcase. Bob cut - best style. Wash once or twice a week, the less you touch it the less it falls out! Wash with cool water, no hot hair dryers!
I am just over 4wks post chemo 6 FEC. My hair has thinned but the bounce and shine are back! Onc is impressed!!
thanks coll. Hope you’re ok and feeling better. You 're advice is much appreciated. Day 11 for me today so far so good but just dreading this week as quite a few ladies have started losing around day 14. I’m so nervous! I need to get my backside in gear and collect wig this week - just in case! Speak soon x x
I’ve posted this rather odd picture of the back of my head, taken by me with my phone. I’ve had 3 x Epirubicin and am 11 days post 1st Tax. I’ve used cold cap throughout and even though it is very unkempt and not in good condition, you can see that I have retained enough hair not to need my reserved wig yet.
I had cold cap from the beginning, wash and condition my hair daily and my hair has thinned but now finished 3 FEC and 3 TAx and still ok. Seem to lose eye brows and lashes with Tax but hopefully will grow back soon.
well i’m sad to say i’ve lost most of my hair now. i’m due for next chemo tomorrow and not sure what to do with regards to the cool cap.
i think i’m just gonna go off the advise of the chemo nurses. i’m very thin on top and round the sides. most of the hair i have is at the back, strangely enough that’s where i felt the cold cap wasn’t tight enough?!
if i have as much as i do now tomorrow then i think i’ll brave the cold cap. although i’m worried about the bald patches getting burnt/frost bite from the cold.
i can’t get away with not covering my head now, gonna have to start getting friendly with ‘Beverley’ and ‘Zoe’ hehe
anybody got any advice??
wish i could show you all pics so you could see what it was like, it’s hard to explain.
Hmm, just shows how we’re all different. Lynzi84, how many chemos have you to go? It would be a shame to stop now if you are nearing the end of the treatment. Lots of people comment that their starts growing back before chemo ends, and that using the cc helps new hair come back quicker.
I’m now 4 down, so waiting to see how much hair I lose this time. Then I go onto Tax. I’m losing it on the crown, and underneath (longer hair on top disguising that to a certain extent, but my hair does look really thin. However, I think it’s better than being bald).
Filosofie, your hair looks great! No noticeable thinning on the crown at all. Really hope it’s stays that way for you!
Rainbow Dancer, I really hope by chemo 5 my hair does start to recuperate and that the hair on my crown starts to re-appear and fill up the gap up there! At mo, I’m pinning hair back so it’s not noticeable there (to anyone shorter than me, lol) think I will get some of those wide headbands you mention.
Kym x
it was only cycle #2 today and we decided against it. nurses didn’t think it would be worth the discomfort as so much has already come out. they said my dose of chemo is just too strong. i’m not too bothered as i’ve kind of accepted the hair loss now. although i think i will be very upset to see myself totally bald when it happens. mustn’t grumble. it’ll be worth it in the end and i have 2 good wigs and lots of hats and lots of lovely headscarves and accessories
thank you very much to all you lovely ladies for all your advise, best of luck to everyone else xxxx
