hello again lovely ladies,
i seem to be asking so many questions lately,
i would like to know your views on the cold cap, and did it work for you? i have over the weekend to decide if i want it use it for my first FEC which starts on tuesday,
do i put myself through the pain, just to still go thin and bald patches,is it worth the pain for when you have finished all the chemo? as i may still have some hair when it starts to grow? ohhhh i dont know what to do
thankyou
4 lots of fec, 4 lots of tax…kept ALL hair with cap. Run a search in the forums search box and you’ll see lots of other threads about this, with good advice on how to make it work.
Best of luck xxx
Ah, found it! I was just about to ask where the search box is, only to notice it lurking in the top right of the page. (VERY interested in the subject myself.)
Hi Donna,
unfortunately cold cap didn’t work for me, tried it for 1st 2 of 6 FEC, hair began to fall after first 10 days very slightly, by 2nd FEC was falling out quite a lot but we gave it another chance but to no avail, ended up ditching the cap and shaving remaining locks. Hair has now grown back to a length that I am able to go out minus wig (last FEC 16th Sept)
Choccie…& all.
SEARCH box
NOT the one that’s top right. Click on ‘forums’ just above and to the left and a different search box appears centre of page over the threads. Think you need to use that one.
xx
Hello
Can only speak from my experience which was - after discussions with Consultants and reading all I could, with my type of cancer, & knowing how much of the head was cooled , I was happy that I wouldnt have regrets later (ie I was convinced there was minimal greater risk of a recurrence using it).
Then i knew there was a risk of feeling a bit grotty with it but gave it my best shot and managed to tolerate it all the way through. The first few sessions were a breeze , last few a bit more challenging - probably best not to ask !!! and it is a different experience for everyone. I think this is partly due to many different factors - how cold / warm you are at the time, the fit of the cap etc. I realised at the LAST session that the ones I used came in more than one size and it was when I had the large one that the symptoms I found hard to bear came on . so do ask exactly what the caps are like and make sure it doenst come right down your forehead over your eyes almost , as mine did a couple of times !!!
even with a not so well fitting cap I only went thin on very top of the head. Most of the hair loss was after first session , on days 15 - 20 about, it came out in very small amounts, I couldnt resist pullling it !!! I think that was cos the scalp was slightly irritating . but that passed off and never happened again. although there was very gradual loss , and also I think some breaking off the hair as it got weak and out of condition.
Its easier dealing with this in winter as lots of people wearing woolly hats etc I found it hardest on smart occasions , indoors, but found a very light , lacy , black number in H & M which saw me through , for 2 months and over Christmas when hair was a couple of inches on top , left the hats in the drawer - freedom and relief.
My hair is a bit weird at the moment (FEC finished Oct 12th) - the regrowth is VERY wavy, strong waves, and various shades of grey, through to dark (brown I think) at the back. It was salt and pepper before but much muchlighter now, some almost white. But its OK - I"m here , over most of the chemo SEs, and kept hair around my face and down neck , all through. Lots of people shave their head as soon as it begins to come out, but I wanted to keep mine - maybe being older. Younger ladies can look so attractive with no hair - but not me. I was glad what I did , but everyone is different.
Wishing you a comfortable ride, it feels much better when its started and you can tick the sessions off. Keep reporting any side effects ASAP and take the meds they recommend - that way you minimise feeling off colour. The chemo nurses are always lovely , you feel cocooned !!
Kirsty
Hi there.
I found this a difficult decision. When I was first diagnosed with BC in October the first thing and the thing that terrified me the most was losing my hair! However, after speaking to the chemo nurse and seeing the cold cap I thought again and decided not to go for it. I got the feeling though at my hospital that they do not encourage people to use it and would only talk about it if people asked. I just wanted to say that now my hair has gone (21 days after FEC1) and I’ve been wearing my wig to work (never in a million years would I think I could do that), I am glad about the decision. I won’t lie and say I’m ok with it, I’d much prefer to have my hair back, but it is doable. I bought myself a good wig close to my hair style and colouring and (working in a secondary school with all those teenagers!), only the people who know I have BC have said how good it looks, others don’t give me a second glance. I wear scarves at home as I’m glad to take it off at the end of the day - bit like wearing a pair of high heels all day and you’re glad to take them off.
Hope this helps (don’t want it to change your mind or anything about CC as lots of people have used it and been successful) but just wanted to let you know my experience.
Good luck in your decision-making!
Rachelx
I’m not in any hurry to make my mind up, but I’m definitely having my long hair chopped off on Monday to a short crop so that if I do go for the cap and it works, brilliant, and if it doesn’t, then I won I won’t be clogging the place up with miles of hair, just inches.
Also as I’ve just very recently had surgery I won’t be starting chemo for a few weeks, so having a nice hairdo for a little while will be quite nice and will give people the chance to get used to me without my trademark plait.
littleprincesses.org.uk for anyone who has long hair and gets it cut short before chemo - lets someone else make use of the hair rather than putting it in the bin.
Exactly what I did Chocciemuffin. Good idea. Although my wig is slightly longer than my pre-chemo hair cut, it does look very similar. Also when mine all fell out in the shower I could not believe how much hair was on my head, I was glad I’d had it cut shorter. (This wasn’t as traumatic as it sounds - I was sooooo cross with my hair because it was falling out in my coffee and I found a hair in my chocolate cake that I’d made - that I was actually relieved it had finally gone and I’d got that bit of my BC ‘journey’ out of the way).
I’d like to find another word for ‘journey’ I hate it and am sick of people saying ‘how well I’ve done on my BC journey so far’ - sounds like I’m on some kind of extended holiday - any ideas??
Hi It felt like a CHALLENGE to me, so ‘BC Challenge’ is the name i give it - but … such a big challenge and an ongoing one I think, that the only way not to be overwhelmed was / is , to split it into smaller challenges . At one time it was as small as getting to the end of the day. Now , after op, chemo & rads its getting back a life - getting a grip , and making decisions about how to spend time, not simply drifting.
sounds cheesy to say cancer can be a “wake up call” but there has to be positives out of it, and doing what you want in life , making the most of things - that has to be a good thing.
BC Challenge would have the same abbrev. as this website and organisation though = BCC - maybe not a good idea !!! I see it as my challenge though - doing best I can to overcome ‘it’, as much exercise and good food as I can without becoming unbearable to live with and a misery over it !!! and grabbing opportunities not saying “yes but …”. Bit of navel gazing here but asking what we could call the stuff we are all dealing with started me off.
My Mum had vascular dementia and in that world , the “dementia journey” was often referred to = it grated with me then too. We must lack a word to describe the whole , wretched business of a life changing illness that presents us with hurdles in all areas of our lives.
Back to the dictionary ! Kirsty
I can think of lots of words that would fit, but the mods would tell me off if I used any of them!
Hi Donna
I have used cold cap and it has worked for me ( I have done 5/6 of my chemo 3 FEC and 3 Tax).
My hair has thinned a bit but no one except me has noticed.
It is cold but 10 minutes in and the scalp is fairly numb. I’d echo wise words elsewhere and make sure the cap is a good fit.
I wear scarves when cooking and cleaning and wash my hair just twice a week. I do shed hair after washing and find strands on my clothes a lot but it has made the whole thing a bit easier.
Good luck whatever you decide to do.
Sue
I thinks it’s down to personal choice. I’ve had chemo twice in the last eight years and the first time round I used the cold cap and kept a full head of hair. However by the end of the course I was thoroughly sick of the whole rigmarole and decided it hadn’t been worth it so this time I didn’t bother. I found it nasty, painful and nauseating. You know the brain freeze you get from eating too much ice cream, imagine that but multiplied by a thousand. However, most people seem to tolerate it well and it does seem to work so it depends how much you want keep you hair I suppose.
Good luck with it and let us know how you get on.
Hi everyone,
Had first chemo session yesterday C+tax and intended to have the cold cap,but onc nurse forgot and so did I until after the C had been administered. Had it on from then onwards, but I’m doubtful it will work after the delay. I found it bearable - the weight of the cap being worse than the cold.The most heartening thing was to see another patient looking fabulous in a wig (I only knew it wasn’t real as it was identical to the one I’ve bought), which she was wearing with a wide headband that matched her outfit. It really cheered me up.
loula