So yesterday. I met w its my oncologist who nicely informed me that I will experience hair loss with the chemo I’m having, I kindly told her I’m going for the cold cap - at which point she pointed out all the negatives!
I look at my diagnosis that now I’ve had my lump removed and nodes 1 clear out of 2 that the cancer is gone- the chemo, herceptin and hormones are just to kill off and prevent anything nasty lurking and I’m grateful at that.
But is is so wrong for me to want to keep my hair? My dad and my other half keep telling me I’m making a big deal ( coming from two practcially full baldys!) but it is too me!
All I get is its only hair and will grow back!
It’s been bad enough going to appoints in other departments of the hospital and having your arm rubbed and the Aww poor thing comments cause they’ve read why I’m their! - I chosen the people I want to know about my situation and if I wanted every man and his dog to look at me feeling sorry for me I’d wear a neon sign to announce it or even better put it on my status on facebook! - am I being over dramatic? X
Sazza
I am so very glad to read your post because like you i want to try and keep my hair yet unfortunately for me i am having treatment at a hospital that does not offer cold cap. Yet it is routinely offered at 3 other local hospitals without problem. So just because i am attending this hospital i have to accept the fact that in will be left bald and traumatised very badly by this. Once my hair is gone it will never return the same as i have long hair so i have decided to hire cold caps and bring them to the hospital myself yet i have had the BC nurse and others warning me about the dangers and that i risk scalp a given and brain metts
This is bloody ridiculous as they are routinely using it now in so many hospitals as long as the drugs being are compatible.
Loosing your hair iand being left totally bald is a massive loss and its worth fighting to keep it you can and that is what i intend to do.
Tricia
Hi Sazza, by all means try the cold cap and see how you get on. Different people react differently to it.
I tried it for first 2 chemos but couldn’t get comfortable with it (especially the big pipe at my neck) and my hair was coming out anyway.
Having said that I’ve known many women who have persevered with it and ended up with hair that looks ok - albeit thin and patchy but they have managed to cover it up and look normal.
Hope the cold cap works for you x
Hi Sazza. I am day 21 of first fec-t cycle and used cold cap. So far I have had a little hair loss from the ends, but otherwise still there. I was discouraged by oncologist also about using cold cap but when I went for the chemo information session the nurse was very encouraging. I have bought a wig and some scarves just in case but so far so good…though I know I have a way to go!! I too have had surgery already. My main motivation for trying it was my eldest-(8 year old), who seemed a bit freaked out about me losing my hair. If I do, so be it, but at least I gave it a go. Am hoping I have stubborn hair follicles. I will let u know how I get on but I say go for it if u want to, good luck.
I’m definitely hoping to try the cold cap, I’m having my hair cut shorter as its passed my shoulders now and my friend is colouring this week - hoping that the fact I have thick hair any hair loss won’t be too noticeable - I was planning on clip,in hair extensions if needed. Having said this ive got a wig and a large head band on order just incase - I’m one of those that hates a cold head in winter so not sure how I’m gonna cope! X
Thanks guys I’ve got the pdf form the cancer hair care site, and have been on paxmans site too as that’s the cap they have.
Had my hair cut to shoulder length and a few layers so hoping that will help- my hair was getting too long anyway- seems a shame I keep,going on a grey hair hunt- seems so trivial!
Bought a fabric headband takes back to my school days, with a bad perm!
Got my first session on Wednesday next week- going for bloods etc Tuesday. Nurse asked if I want the cold cap, and with ever nurse I speak to they all seem to be set against it, and was annoyed no one had sorted my wig voucher out! - hoping can cram that in this week! Fingers crossed I won’t need it!
Hi there! I’m a year (yesterday actually!) since I started my chemo (finished 1/10/14) and I used the cold cap throughout my treatment. I almost gave up 10 minutes into the first session as it was more painful than I anticipated, but the lovely nurses encouraged me to keep it on and assured me that the pain would dull - and it did. It was uncomfortable there’s no doubt about that - but manageable. In the leaflet it shows a lady finishing her treatment with a full head of lovely hair… That’s not happening! I couldn’t believe how much hair I lost - yet still had a reasonable covering on my head. It seems to go mostly over the top, so a wide stretch headband was my friend for a number of months! For me it was about being able to walk in a room of strangers and not have their first thought about me be ‘cancer patient’. Their first thought instead may well have been ‘weird choice of headwear’… But that’s fine!!! Once treatment was coming to an end and my hair started growing back (about session 5) I was in danger of getting a full on mullet so I went and had all my longer pieces cut off into a ‘pixie’ style cut. Not my first choice of hairstyle but it was amazing how many people commented on my hair and just thought I’d gone for a dramatic change - they hadn’t even realised I was going through chemo. It’s very much personal choice and I really do admire people who cope well with the hair loss - but for me using the cold cap meant one less emotional trauma to deal with. Good luck on your journeys - you’ll get through it and you’ll be stronger and braver than you ever imagined… If a little cooler round the head area!!! Xxx
Ps. A tip… If you are using the cap, don’t use your favourite conditioner … You’ll never be able to stand the smell of it again once you’re finished!!! Xxxxxx
My advice is go for it, it doesn’t work for everyone (it didn’t me) but anything is worth a try and your hair is such a personal thing and a big part of the persona you present to the world regardless if you have breast cancer or just a spotty face.
I don’t understand why some onclogists try and deter you from trying it, mine was brilliant and offered it up before I could ask (I was prepared to go in and beg rather than face losing my hair), she did point all the negatives, that it may not work and that I would definatley lose my hair around the 4 week mark, in the end about 75% fel out in one hit at about 3 1/2 weeks despite two goes with the cold cap so I ended taking the decision to just shave the rest off as I hated waiting fo the rest to fall out with every stroke of the hairbrush.
Having the cold cap itself wasn’t a bad experience either, although very (very) cold, I oddly found it amusing, don’t get me wrong the brain freeze can be uncomfortable but the expressions on the face of the person accompanying you tying to decipher what you (the most drunken/sober person they’ve ever probably clapped eyes on) are trying to communicate raises a chuckle in what is usually a very draining afternoon, especially for the chemo nurses!
Good luck xx
Good luck to those using the cold cap
I personally couldn’t face it and chose to cut it all very short before it eventually fell out
My wig is lovely, very comfortable and I’m 90% happy with it
I must confess I just go bald at home, and don’t bother with hospital visits but I’m getting more and more comfortable
I should also add I’m generally quite a vain person, I’ve had long thick hair all my adult life and I sobbed when it fell out but you kind of get used to it.
I’ve just had found 4 and it’s starting to grow back ever so slightly but fine baby hair is definitely growing x
Don’t be scared of being bald, it’s only temporary and not as bad as you might fear x
Hi, the whole hair loss thing is very personal but the patients decision should be respected regardless. My choice was to see what happened as a friend had the cold cap which extended her treatment time, caused pain and she lost it all anyway and had a wig. I chose to shave my head on the day of FEC number 2 as it was patchy and looked ridiculous and I have got by with using normal scarves and tieing them around my head rather than buying chemo scarves and hats which makes it look more obvious. I am now on Docetaxil with two more to go and my hair is starting to grow albeit fluffy stuff! Go with whatever you’re comfortable with, the way YOU feel is what matters.
Great thread ladies. I would definitely recommend cold capping
The fit is very important so take time doing that. I had a total of 3 x 3/4 weekly fec followed by ,11 weeks of weekly taxol. 14 cold csps of around 3 hours each. If I can so it, you can too! I probably lost around 50% thickness but all over
I coveted thinning scalp with comb over. Clumps did come out after first chemo but the no more. Eyebrow and lsshed departed about weeks
Had my first session today, the cold cap was horrible! I hated the squashed face feeling and thought I was gonna ask to have it removed but no I stuck it out- I just regularly put my fingers under the chin strap to make it more bareable - hoping it works. It helped taht my first session I had a nice lady who was also on her first session and we had a bit of healthy encouragement to keep going - got told we looked like jockeys- if only we got paid as much as frankie detoury to wear it - will keep you post how it goes xxx
Well done sazza - I forgot to say I always took tramadol half an hour before capping, made it much more bearable. And a bit of soft gauze under the chin strap - put the strap in the boney bit not underneath.
My friend thought I looked like a skydiver in mine!!
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My middle daughter came with me to my first chemo where I tried the cold cap. We share the same sense of humour and spent most of the time giggling. When we are together we are like kids. It certainly passed the time. The cooling cap is not for me as I left the hospital with the beginnings of a migraine. It took a couple of days to get rid of the migraine and have been deeling really well since.