Hi everyone, I’ve been mulling around since I was diagnosed in August but now feel I need some support/advice with the good old hair situation!
My first fec treatment was 6/11 next one is Monday. I decided against the cold cap after the nurse basically told me it wouldn’t work which reduced me to tears as the thought of losing my hair was/is a major issue, I had long brown thick curly hair. I decided to have it cut short before my first chemo to try and take some control if that makes sense.
On my first fec I had a different nurse who was really positive about the cold cap and basically said that if my fear is losing my hair then why not give it a go as she has seen really good results. I gave it a go and it was ok. Day 16/17 my hair started falling out and is gradually increasing, it is falling out evenly at the moment whether that changes I don’t know.
What im struggling with is my scalp it is so painful, even when the wind blows it really hurts, I can’t bare anyone touching it. My anocologist said she wouldn’t have expected my hair to fall out as much as it is. I’m starting to think whether when my wig finally arrives I should bite the bullet and zap it off just to try and relieve some pain and then I suppose there’s no point of the cold cap! I’m finding the whole hair thing a real issue, I don’t know whether to stick it out with the cap or just get rid? I didn’t expect the sore scalp and it’s not very nice when we find my hair in the cooking, it’s all over the house!
Nicola welcome and sorry to hear you are struggling I can’t advise re cold capping but I am sure one of the lovely ladies who are will pop up soon to offer advice x hugs ? to you x
Hi Nicola I am one of the ladies from the October thread. Funnily enough I have been posting about cold capping this evening too - I am afraid I don’t have any answers but can share a similar experience and am considering what is best to do next.
I am two cycles in. Apart from a huge headache and a small bit of scalp soreness my first cycle was fairly uneventful hair wise and I didn’t loose any. But I have also been very slow to loose hair elsewhere compared to others.
However after my second cold cap (which I had on for 4 1/2 hours due to delays during chemo) I have had more issues. My hair has been falling out a fair amount (which is quite normal if I chat with the other ladies) but my scalp is also very sensitive. I think it gets fairly sensitive anyway during chemo but I am now concerned about a potential cumulative effect if I continue to use the cold cap. I have been googling but not come up with much so next am planning to take a good look through the forum to see what others who cold capped might say. You can easily jump on an earlier thread and ask advice from the more experienced ladies so I will probably do that.
The hair loss does mean that I am no longer happy to go out in public with what’s left and wear a turban or scarf and yesterday I got my beautiful wig which I love. So I am not really keeping the hair for show but rather for my own psychology about having no hair and in the hope that I might get back to having hair quicker.
Hope my experience helps and happy to share any advice I gather from other ladies.
R
Hi Nicola & welcome to our group.
My hospital doesn’t cold cap so sorry I can’t help you. My hair started coming out on day 16 and I’ve just had my 2nd chemo and now have a few wispy bits left. I too went from long curly hair, to a bob to a choppy crop - very funky & knocked years off me apparently!!
So far my scalp has been ok, but I did wonder about looking after it once I had lost my hair and received some good tips from our brilliant ladies here.
Good luck for Monday xxx ???
I am also not cold capping so dont know if my experiences are valid for you.
My hair and scalp hurt dreadfully, as you say, just the smallest touch to the hair was painful/uncomfortable. I had gone for a short cut so only really any length on the top.
It did stop hurting, but that was literally just before it all started falling out?? Not great.
I have shaved so only got a small amount to lose, but it still everywhere.
Underarm seems to have gone, legs well on there way, but the lady garden is hanging on in there! You’ve got to love a trier!
This whole experience of losing your hair I think is possibly the worst aspect of chemo. It is so unpredictable, everyone reacts differently, and no one can really tell you what is going to happen. And then you throw emotions into the mix.
But the hair loss is temporary, we will return to our glorious best over the coming months.
Jc I am taking Tesco indigestion chalk tablet things for indigestion like rennie but cheaper lol and they do help
I have to bath rather than shower due to having a Hickman line but I throw in some Epson salts to keep away any aches and pains x
I have completed cycle 3 armpit hair gone. head bald apart from a few stubbirn strands . Leg hair I had shaved prior to chemo and it hadn’t really grew back … lady garden gone yay silver lining and all that lol x
I am actually ok with hair loss as I love my wigs and you tube great for scarf tying
Wishing you all s lovely day with minimum side effects x
Hello ladies, thank you for all the tips re looking after the scalp.
Nicola, I always had short hair and still found it it depressing when it started falling out so can’t imagine what you must feel with your beautiful long curly hair. I shaved my hair yesterday to no 1and it was liberating! I feel much better like this rather than with clumps of it in the shower, it falling into my soup and falling out from the hat. I’m even brave enough to take my hat off inside in public places and enjoy strangers gaping at me or some others trying to take their 50p big eyes off my head but they can’t ? I’m soo irresistible ? for once ?
I don’t cold cap, but my scalp hurts a lot
Ha thanks Lesley. It’s funny we wish all the other hair to go but can’t let go of our hair even though we can cover it up. I’ve seen on other threads ladies who have suffered with painful scalp and they all said it felt better once it was off. I’m going to see what happens in the next few days, hopefully my wig will have arrived which may make me feel better xxx
Thanks ladies for the info, I think I may be turning the other way where I want it off rather than stressing myself out trying to save it! Who would have thought this time last year that this would be our dilema! Crazy. Xxx
It’s raining here today but, still I must walk my crazy pups xx if you have a minute to spare, you might want to have a look at my Instagram account: toshi_thevizsla ? I love my dogs ??
Beautiful day here too.
Hubby and son have gone off to rugby training so have had a nice long shower and pamper. Why I am pampering what have now turned into Neanderthal legs I will never know. ?
Think it may be Susan’s turn to go too
Nicola, I’m from the oct thread I’m cold capping and had chemo 3 on 14nov. I completely understand your dilemma I too had long curly hair before all this. I had it chopped to a short cut probably 3-4 inches long. The first cycle for me saw the worst scalp pain and I did lose a lot just before chemo 2 and then between chemos 2-3. It mainly seemed to come out of the top and more to the left side of the top. You can see my head and I did wonder about what to do. At the beginning I found the weekly wash quite difficult as mine really only came out when I wash it and did wonder if I’d be better off just letting it go, but we are really lucky with curly hair it hides a multitude of sins! I find that wash day is the day it looks the worst. After that I find it starts to stand on end a bit and covers quite a bit where it’s thin. My family have said that they have seen people whose hair looks worse (re thinning) who aren’t having treatment. So I’ve been proudly displaying mine and trying not to worry too much. It has been sore for a few days each cycle but not as bad as first cycle. Obviously it is up to you what you do, but at the moment me glad I haven’t given up. A lady on an older thread said to me that it will thin quite a bit and people often give up too early thinking it hasn’t worked but keep with it. I’ve decided I’ll keep on cold capping until either i finish treatment or they tell me that I can’t. Oh by the way, I still have quite a bit of lady tuft, underarm hair and leg hair. I was never really hairy to start with and although it has all thinned I don’t think anyone would know (not that I proudly display it to all and sundry)! Sorry long post but wouldn’t want you to give up too early I guess you just have to weigh up if the pain vs hair! ?
Meesh thank you so much for the post. I am just one chemo down and wondering how successful the cold capping has been and whether or not my hair will just suddenly all fall out and at what stage I give up trying to keep it. No movement yet but expecting next wash to be the telling one.
Hi Nicola, you will find that it will thin. I’ve been washing mine once a week (which as a curly I don’t find too bad) and Comb using a wide tooth comb (although as a curly girl I assume you already do), day to day I just fluff it with fingers (another perk to be curly). Just before chemo 2 I had 2 big handfuls of hair come out when I combed it after washing and it was thin on top but not too bad. The week after that it still had conditioner in it from chemo and was matted and again I lost about handful and a half. As I said the top is worst you can now see my head, mainly the left side. Back and sides and fringe whilst they have thinned a bit there’s no visible difference. The funny thing is you don’t realise how much hair you really have until it all starts to come out and I keep thinking where’s it all coming from! If I was 6ft no-one would probably know I was balding on top, unfortunately I’m only 5ft 2 ?
Hi otter, good to hear you’re doing well after chemo 2! Bet that delivery man got a shock, mind you he’s probably seen all sorts of things! Good job it’s winter as there’s no need to walk round Tesco without a hat in winter. I wore my hat when I went out today as it’s day prior to hair wash and usually looks pretty rough today. I am going to wash it in a bit though as I have my Nan’s funeral tomorrow and it usually looks better the day after a wash. Not looking forward to seeing the rest of the family tomorrow, not sure if they know about my bc or how they’ll react.
Thanks Otter, she was 95 and lived on her own until a month or so ago. She was as tough as old boots I hope I have inherited just an ounce of her grit to help me get through this. I’m glad she’s not suffering anymore. Sorry about your mum it must be hard without her, but I know what you mean about being glad she doesn’t have to see you go through this. I wish my mum and dad didn’t have to go through this and my decision to cold cap was mainly for them.
My mum was diagnosed with BC 3 years ago and had a WLE and then a MX but no lymph involvement. Her identical twin sister had a WLE 7 years ago… but although my TN could be genetic, mums and aunt’s wasnt.
Mum has really struggled with my diagnosis but I dont think I realised how badly until just before chemo. It was then I realised that she was in total denial of my treatment plan.
After my pre-chemo check, I spoke to her and she said ‘Is it really going to happen, haven’t they changed their minds yet?’
I have felt guilty that I maybe haven’t looked after her as well as I should but I was concentrating on looking after myself.
Mum & Dad are 250miles away, my son 60 miles away and only my OH locally. Mum had a hip replacement when I was having my WLE and axilla clearance.
But once I realised that she really wasnt dealing with it we had a really good talk and thrashed out a lot of stuff, most of it not necessarily to do with the BC.
She seems a lot better about everything now, and it has made things easier for my dad as well. I think now they have seen me come out of the first session of chemo positively they feel more comfortable with the journey ahead.
My son has also had a hard time of it. His girlfriend’s mum was diagnosed with pancreatic cancer in February and 16 weeks later we were attending her funeral. I found my lump 2 days later.
Both my son’s and girlfriends first reaction to my news was that I was going to die as well. But I didn’t tell them until I had had a definitive diagnosis and treatment plan, so I was able to dispel that myth! I’m not anywhere anytime soon. Because they have seen me take a completely different path to A’s mum they know that I’m not hiding anything from them and they are as positive as me!
It’s hard to look after yourself and look after your loved ones as well
Lesley ???For you. What you find on these threads is that we have all been so busy looking after everyone else we have all taken our eyes off our own health till we’ve all had the rug pulled out from under us with diagnosis and had to put ourselves first while on this journey, it’s hard as it’s our natural nature to take care of everyone else first. Robin Roberts who is an American anchor woman is a tn survivor and she in her words ‘hit it like a warrior’ thought it was a good phrase to have and it’s on a post it note next to my kettle along with other positive quotes ??shi xx
