Looking for some guidance if anyone has some please…
I am on epi and had my 2nd dose on Thursday. In anticipation of losing my hair I got it cut shortish once I had recovered from surgery. My hair has been coming out a little for 6 days now, but you would never notice unless you inspected my pillow/the shower! I have an appointment with my wig lady on Tuesday so that she can shave my head and fit my wig. I had anticipated that by Tuesday I would have lost more hair. However, I am now having seriously cold feet and wonder if I should enjoy having my own hair for as long as possible. Or, is it better to jump the gun and get rid of it before it starts coming out in clumps? Any thoughts from those who have been there?
Many thanks
Hiya
Firstly, I had a wig fitting whilst I had a head of hair and it was ok, so if you want to hold onto yours don’t feel you must have it shaved to fit your wig.
Secondly, I bit the bullet and shaved mine when my head became really tender and even the wind blowing through it hurt. Also I was getting more upset each time I saw it on my pillow/brush etc and found that actually being in control myself, shaving when I wanted to made me feel better.
Hope this helps
Cheers
Anne x
Hi
I have had my hair cut to below my ear and up the back of my neck in a bob, was past my shoulders before. I had a wig fitting with my hair, and got everything ready at home now for when it falls out. I am thinking of getting cut again, but waiting for it to start to fall out. I think it is each to their own as to when they get it cut short or all off. I think once my starts to fall out a lot will get it cut or shaved very short. Me personnally are keeping my hair til the last point possible while still all there. Not had a tender or sore head yet either, and think that is the sign from the posts I have read.
Think this makes sense. Brain not working too well … apparently chemo brain!!!
Take care
Dawn
x
Hi there
I appreciate what you are going through. I had Epi started back in March, now on CMF.
I think you need to do what you are comfortable with. I remember going through the same dilemma - will I let my hair fall out itself, will I shave it off, what if I shave it off and it wouldn’t have come out anyway!!!
In the end I think you will know when the time is right to act. I chose to wear bandanas and got everything ready in advance. Then by the end of my first cycle of Epi my hair was coming out, every time I had a shower I dreaded washing my hair. I came out looking like a teddy bear! More hair stuck to my body than my head! Also my scalp was so tender it was painful to touch.
It was at that point I decided to take the plunge. With sweaty palms and churning stomach I shaved my hair off. I agree with the comment that it felt better to be in control of the situation,to do it when you are prepared.
I had radiotherapy June/into July, started CMF four weeks ago and now no longer require my bandanas. I was really pleased at how quickly your hair grows back again - although it is very,very short at the moment.
All the best
Kitty
Hi
I have to say I haven’t had the courage to shave it off. I am an awful sight at the moment.Had my second chemo and most of it gone but a lot of stragglers.
I have felt the hair issue has been harder than anything- it is so public. On the postive side when I wear bandanas the few stragglers can be pulled out at side and makes it a bit more ‘normal’ looking.
I see both sides of the argument - it takes ownership of the situation by you deciding when the hair comes off - watching the pillow in the morning is woeful.
Good luck whatever.
MuddyXX
I had my hair cut short before starting chemo but I am not going to shave my head. I still have quite a bit of hair around the edges, Friar Tuck style, after 3 chemos and can wear my wig ok. When I wear scarves I still have a fringe and some hair at the sides and back, which makes me feel that it is a bit less obvious that the rest has gone (I’m probably kidding myself I know!)
I haven’t lost much, if any, body hair, either which I think is quite unusual - I keep wondering whether I am getting the full doses of chemo as everyone else seems to have lost all their hair before chemo 3!
Good luck with your decision.
Anne
Hi
I had my first chemo AC nearly 3 weeks ago - due for my next one on Tuesday. I used the cold cap treatment but alas it has not worked. My scalp was very tender for a week and since Friday really my hair has started to come out in clumps - I now have a big bald spot on the top and the sides are starting to come away now too. I have spent all day today thinking will I or wont I with my OH - I can wear a beanie with still a pony tail at the back but I suspect I am going to bite the bullet in the next couple of days - I am dreading it but will know when the time is right - I suspect if as much comes out in the shower tomorrow that will be the decider.
Everyone is different and the decision has to be right for each of us.
Take care all
Fiona
xx
Hi
I start my chemo tomorrow and have tried to imagine that I will be ok with the hair loss as we know in the scheme of things it isn’t that important but it is and I think I am kidding myself. I have very long hair, down to my bottom and can’t get the courage to cut short to lesson the shock as I know this does help some people. Will be using cold cap for 1st 1/2 of treatments (EC), but been told when I start the Taxol the cold cap will not work. Going to look at 1st wig tomorrow am b4 1st treatment. Feel so shallow about it sometimes but as someone said earlier it is the visibility of it. It took so long to grow (20yrs). Don’t worry about having cold feet surely that is natural and you are entitled to. I wish you well and support in which ever you decide, no wrong or rights, but yes it is bl**dy hard.
Take care and love
JulieL
Hi
My hair started coming out 2 weeks after 1st FEC and by 4 days later brushing/ washing/ touching it was making it come out and it was driving me mad. I normally wash my hair everyday and I felt horrible not being able to preen it like I used to. So much so it began to itch & mat a bit so for me it was such a relief when I got the kids to let the clippers free on it.
I went straight from a shoulder length bob to a grade 3 and surprisingly everyone - including the kids - says it looks quite cool. I’ve only got about 5% of it left but because its short it’s not so noticeable.
You have to do it when it feels right for you - you will reach the point when you just want rid, but don’t do it til you are ready. If you want to hang onto it then do because it’ll be a while til it comes back.I thought I’d be really distressed by losing my hair but I’ve surprised myself how well I’ve taken it. I see this as an opportunity to do something drastic with my hair which I would never have done before and knowing that I had no choice in the matter nobody would say “Oh my god, have you seen what she’s done to her hair!!??”
Every cloud ‘n’ all that…
Good luck, go with your instinct and let us know how you get on
Lol
xx
Hi
I was determined at the start that I would wear a wig - I was measured for one and bought it before my hair started falling out, but also had some bandanas and scarves waiting in the wings too !
My hair started to come out after my second chemo, each time I ran my fingers through it strands were coming out. When it got to the point that it was coming out everywhere, and blocking the plug holes, I decided to cut it off myself - in big chunks. Not a good idea - my husband came home from work and calmly suggested he shave it off for me. Yes, it was difficult, we both cried at the time, and it took a while to get used to seeing a bald me in the mirror. BUT, I can honestly say I’m used to it now. I never did wear that wig and just stick to bandana’s now. Look on the bright side, it takes no time to get ready to go out now, and we never have “a bad hair day” !
I don’t mean to make light of the situation, I know its hard, but you’ll get through it. Do what you feel best, and let us know how you get on !
sending you lots of love
Julie xxx
Hi Sinclair
I never shaved my head. I lost most of my hair 3 weeks after the first chemo despite using the cold cap but I kept a few long strands around my face which I used to pull out when I was wearing a hat or scarf and they looked quite nice.
Don’t feel you have to shave your head. You might be lucky and keep most of your hair so it would be a pity to shave it if you’re not going to lose it. Also you can wear a wig whether your head is shaved or not.
Take care
Love Anthi
Hi Sinclair
I have had my chemo (one lot before the operation and one after) and I’m now waiting for radiotherapy, my hair has fallen out to a certain extent, but to use the words of my eldest son there is fluff left. I haven’t had it shaved but got what was left cut really short, really close to my head by my sister who is a hairdresser. The problem I had when it first started to fall out was that my eldest son kept trying to give it me back as it used to fall into his dinner lol. I have a wig (youngest son has some evil plan for when I have finished with it) and serveral scarves and hats, although I’m thinking I might get brave enough to go outside the house without anything, as long as we get a bit of sun. My hair did start to grow back in between the 2 sessions of chemo.
Hope this helps
Sue
I shaved my head soon after I started looking like someone who had excaped a nuclear testing accident…it was a bit stragley… but first I made a beard and moustache to wear so that the children were not scared and I made an Elvis Egg…and a small nest. I have kept the nest and put a stone egg in it…I am curious to see what colour my hair will be when it grows back and needed a reference point. I am now so very used to my bald head…I LOVE the scarves I wear and the dead cat stays in the cupboard…I am NOT a wig person I decided…never even worn it properly!
I do get a bit of regrowth inbetween sessions but then I whip the razor out and give myself my summer haircut again…much cooler and less itchy!
Good luck whatever you decide. xxx
Thank you everyone. I cancelled my appointment to get my hair shaved as I do not need to push myself faster than necessary. I think I will know when the time is right.
Sinclair
1 Like
Hi Sinclair,
I think you did the right thing. The hair loss thing is hard enough to cope with as it is. We are all affected differently and like the ladies said - each to their own. I have had my hair cut shorter than I have ever had it and actually love it but couldn’t under any circumstances shave it. I am upset about the hair thing but dealing with it.
Hope you get on ok you never know, yours may just thin, are you using the cold cap?
I have used it twice now and my hair is thinning. We will have to wait and see if it works. lets us know how you get on.
Sending lol,
Tracy xxx
Hi Sinclair,
I agree you did the right thing and you will for sure know when the time is right for you.
Personally I had mine cut funky / spiky before starting chemo (kept a lock for reference for the future!) started to fall out about a week after FEC 2, the sore scalp thing was unpleasant (reccomend getting T-Gel, helps me still) Boyfreind offered to shave it for me there and then, thought I was ready but couldn’t do it, few tears, couple of days later he comes home and I hand him the clippers… do it. He did. I cried. Now I actually like it!
Lots of people comment now it’s growing back 5 weeks post last FEC (4) saying it looks cool and how it looks like I had it cut like this and wow it was comfortable on holiday in Rhodes for 2 weeks!! All the other girls sweated more than I did lol.
Never lost it completely but was bald at the back, could almost (kidding myself) get away with facing people and them not knowing, but had to back out of the room… could have pretended to be japanese maybe 
Good luck with your treatments… keep fighting
Nikki
Anyone dealt with scalp issues while hair absent? I thought mine was OK but now I have this big bald patch I find myself scratching miniscule white flaky bits off… (sorry if TMI)
Not sure what’s available to use. I expect my hair will all be off in a month as they are not going to let me cold cap any more (even with gauze).
mousy
Hi Mousy,
I had that problem had always had a sensitive scalp anyhow but when hair went it was like join the dots on the back and the flaky thing too!!! plus very itchy. I used T-Gel shampoo for scalp every day and it really helped.
Good luck
Nikki
Bizarrely my hair has stopped coming out…though quite sure it will start again when I least expect it! I did try the cold cap and found it an instrument of torture. My entire body was shaking after about an hour and a half and once I was sobbing uncontrollably I summoned up the courage to ask them to take it off. With all this cancer milarky I keep seeing how different we all are to things/treatment as I can not comprehend how other women wear it. Just as I cannot comprehend why I am violently sick after chemo despite the anti sickness drugs…!
Have a good weekend all and thanks again for sharing stories.
Sinclair
Sinclair
Can your chemo nurses not change your antisickness tablets as they do say you should speak to them if suffering from sickness as can try different types. I am no expert at all, as only had 1 chemo session so far, 2nd one next week (on FEC) but luckily have not had any sickness at all. You should speak to your cancer nurse or chemo nurse and find out.
Love
Dawn
x