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Calling all Cold Cappers!

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Re: Calling all Cold Cappers!

Hi
carol like you I took cap off straight away and had icicles stuck to my hair! I was not given correct advice and cc not fitted properly on first chemo session so lost 80% of my hair! baldy on top and crown!! But 16 weeks post chemo I no longer need my wig hair is in a very short bob! My hair is very thin (baby hair) but is my hair!

I wore a fine Hairnets at night and also slept on a silk pillowcas! My hair did continue to shread upto 10 weeks post chemo! And only thing now is its all coming back unevenly! But getting there!
im now using Nioxin shampoo and conditioner and it appears to be working for me!
wishing you all the best with your treatment
Norms x
Member

Re: Calling all Cold Cappers!

Hi Trish
I slept post cold cap for the first 48 hours afterwards with nothing on my head, the conditioner dried hard and so was not messy. It was not a great look!! But worth it in the end.

They gave me a 'sleep cap' which I didn't use - apart from looking hilarious, it also pulled my hair on the pillow and I felt better leaving the hair loose.

Best of luck with the CC - I Found all the nurses at Lister very supportive and encouraging when I was using the cc. I was quite stressed most of the time while using it and they were understanding and patient in what is a very hectic chemo suite - however, I know that not all nurses in every hospital are as good as mine, so do make sure you are happy with the fit of the CC and don't be afraid ask questions and query things - it could make all the difference to the overall outcome at the end of chemo. Will be thinking of you - and everyone else going through the CC and wishing you all well.

Fingers crossed for you! XXX Smiley Happy
Member

Re: Calling all Cold Cappers!

Hi Trish
I just want to echo what Mejane said about correct fitting cap - the first time I used it i now know it was way too big. When I used it the 2nd time it was much tighter - and excruciating when it was switched on! However, the damage had already been done at the first session and I lost my hair so it really is important to make sure it fits.
The conditioner they used on my hair was a spray - very light as you don't want anything too heavy, so by the time I went to bed it was dry (I also slept on a silk pillowcase - we deserve a bit of luxury going through this!)

Also, leave the cap on for 10 minutes so that your hair defrosts - I took it off straight away the first time and and had ice in my hair, and ripped out a few strands!
Good luck with your treatment - and the cold cap - I hope it works for you.

Carolx
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Re: Calling all Cold Cappers!

Hi MJ

Really useful post thanks, I start my first cycle of TC on Friday and will be using CC, I have my pre chemo assessment this afternoon so getting prepared, and a little anxious.

What did you wear on your head after chemo at night if hair full of conditioner? I bought a soft turban thing yesterday, I've read it's best not to cover hair too much when home as heat not good, obviously won't be using dryer or straighteners for a while....

Thanks

Trish
Member

Re: Calling all Cold Cappers!

Hi Jan
The very best of luck with the cold cap! It worked well for a lot of ladies on here and I am now, over 4 weeks post my last chemo, so pleased I persevered with it.

The hair needs to be quite wet rather than damp, though not to the point of dripping, it then needs to have been coated in conditioner. I used one supplied by the hair care charity at Lister hospital, who were so supportive all the way through my treatment. It was a natural tea tree Conditioner. When I started using the CC, I was shown by the nurse how to do my hair, they combed it straight back from the head, with no parting. Some people I know have left the parting in, but for me, the combing straight back really worked.

Remember the first 20 minutes are the most uncomfortable, after that the head seems to adjust to the coldness of the cap and it becomes much easier. I just gritted my teeth and put up with it - anything was worth it, if it meant keeping my hair.

Make sure the cap size is right for you - the nurses will try on different sizes to make sure they fit properly, if in any doubt, tell them you want a smaller one if it feels loose or ill-fitting. The key to the cc working is it being correctly fitted and as tight as possible. If the chin strap is too loose it won't work as well.

Have a hot drink once you are set up in the CC to keep you warm and I also took a throw in with me as you can feel cold. I also sleep on a silk pillowcase which helps the hair at night, it doesn't pull on it during the night. I am stilL sleeping on it now!

It is a good idea to keep the conditioner on after the CC/treatment for 48 hours if you can bear it, just leave the hair alone, don't even comb it out, let it settle down and wash it less frequently than normal, I washed mine twice a week, sometimes less. I wore a cap around the house and when I went out, just adopted a much more casual style called 'the wash and go look'!!! I would recommend that you don't use heat on your hair, so hair dryers, straighteners or tongs etc. These should be banished to the cupboard! Wash hair carefully and don't massage the scalp, rub hands together to make a lather, rather than scalp!

One more thing, be aware that everyone I know who has used the cold cap does lose some hair, the hair charity told me to expect to lose a third of my hair, though I don't think I did. It just thinned a bit all over and at no point did I need to cover it or wear my wig. Best of luck with your treatment Jan. If there's anything else you need to know, just ask. Smiley Happy xx MJX
Member

Re: Calling all Cold Cappers!

Hi

I am going to try the cold cap. Can anyone give me any tips as I really, really want this to work! I hear you have to damp hair and smother with conditioner. Do you keep parting as it is, or should yoU comb it all back. Any tips on what to wear on head when sleeping with the conditioner still in. I'm not going to wash it for 48 hours after wearing the cold cap.
Thank you everyone for all your positive comments Smiley Happy
Member

Re: Calling all Cold Cappers!

Hi Cybele, It sounds to me like you are the sensible one, although I can see that going to the hospital every day again could feel a bit like being caught in a trap. The sheer grind of hauling yourself in there every day will probably affect me in the same way when my rads start in a couple of weeks! Smiley Sad

Since coming out of hospital on Thursday evening, I have absolutely nil energy, by that I mean I can't even walk up the stairs without getting breathless. Even changing the beds today was a performance in itself - I had to call for assistance! Puffing and blowing just changing a couple of duvet covers seems ridiculous and totally pathetic to me, coming from someone who, before treatment started, was fit and active - and at least a stone slimmer! Smiley Sad

Today I was supposed to go to an old school friends birthday party in the garden, but couldn't face the idea of actually getting there! Then havng got there, having to socialise and act as if everything is hunky-dory when it ain't!! Smiley Sad

Partly I think it is my total lack of energy and general weakness is down to the respitory infection that put me in hosptial, but it is still getting me down big time!. The thought of having to glam up my catweezel type locks - as well as put on something a bit glam-ified, put me right off going to this 'do' today - and I'm fed up about that too.

So, I am sitting in the garden - that so badly needs attention - thinking I should have made the effort to go today. Everyone I know was keen to see me, but the sheer act of getting ready - and then thinking someone might say something sympathetic and send me into floods of post chemo tears was just too much of a risk. So no party for me! Smiley Sad

Like you, Cybele, when I start rads, if past history whilst on chemo is anything to go by, I am bound to lounge around during rads and probably feel guilty too! I've spend almost the entire time during chemo feeling guilty about something, beating myself up about having to stop working for a time, beating myself up for not having any energy - you name it, I feel guilty about it! I suppose I am normally quite driven, I have never been ill before my lumpocomy in November. It's been 8 months of absolute blo.... hell!!!! Smiley Sad people say 'just do what your body tells you'.... that's all well and good, but if your mind is clear and active and is telling you just the opposite, it is a constant battle..... Grrrr..

Now I understand what post chemo 'melt-down' is, having been so positive all the way through chemo, just gritting my teeth to get through it, I now find myself on a bit of an emotional roller coaster - but the low energy and feeling worse than during chemo, is really getting me down most. I'll be 2 weeks post FEC6 tomorrow and I am SO hoping things will start to improve next week.

I had to cancel my rads planning meeting on Friday because I felt so ill, so this has now been re-scheduled for next Friday, with rad's starting the following week. Then three and a half weeks of being back in the jail that is hospital, that takes over everything. I can quite see how your mood has slipped back, Cybele..I am expecting to join you there in the near future! I will have an hours drive each way to Mount Vernon hospital every day of rad's, i'm not looking forward to that bit either!

Anyway, I have ranted on long enough now....ranting on the CC thread about nothing directly relating to the CC, just a general all time moaning RANT! Smiley Happy !!!!! The sun has come out now, so let's hope it starts to work it's magic....

It's amazing how the ability to rant into cyberspace has such a therapeutic effect, to people who have been there - and know what it feels like.

Best of luck with everything Cybele - and the end of your rad's which will soon be here. I am sure that once they are over you will once again regain your post chemo Aegean 'spring in your step'- not long to to go now! Smiley Happy XXX
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Re: Calling all Cold Cappers!

Mejane,

really sorry to hear that you ended up in hospital again after the over-enthusiastic gardening - that must have been very upsetting indeed, after just being set free from the chemo ward...

It is indeed a cautionary tale: I've been beating myself up over not doing enough - I'm halfway through rads now and all my newfound post-chemo energy has disappeared again - but maybe that's not very sensible.

Rads is a breeze compared to chemo, but I'm starting to feel hopsitalised again, having to go there every day. It was so great after chemo not having to go there at all for a few weeks. Still, only another 7 days of rads, and then I'll be turned loose with my prescription for Tamoxifen...

I don't know, I just generally feel that I should be doing more, bouncing back, getting on with my life, but all my mental energy has gone. Am spending most of my time lying about reading. My OH thinks it's post-treatment depression, but I'm still having treatment!

I don't think it's the rads, maybe it's just a reaction to the intensity of the last 9 months since diagnosis. A couple of weeks ago I was feeling great, now I just seem to want to stop and not to do anything at all. This is NOT GOOD.
Member

Re: Calling all Cold Cappers!

Hi Border Collies!

Your advice re. Hair colour post CC is really helpful - thank you so much for taking the time to respond in such detail. The delay to my response was due to my being admitted to hospital for 3 days with a bad respitory infection which set in 8 days post FEC6. Having finished FEC, I then went totally mad in the garden far too early and made myself really ill - temperature of 40 degrees! A cautionary tale to anyone reading this - do not get too over enthusiastic at the end of FEC and take time to recover properly - exactly the opposite of what I did!

I went to H and Barrett yesterday and found a light ash blond Naturetint which I will try, but will leave it until several weeks down the line before using it. I will steer clear of Daniel Field after your experience with it, Border Collies. I was originally a brunette but started going grey at 30 so have been a bottle blond/highlights girl for many years. I think it sounds like I'd be better to stick to a block colour like nature tint - when I pluck up the courage to colour it at all, that is! Smiley Sad

I can put up with white silvery hair for a few more weeks, but am not quite ready to adopt it as a permanent 'new look'! Friends have said that they like the colour of my natural hair, but I think it's really a case of buttering me up!!! Also they are more than likely trying to boost my confidence after chemo, knowing I am someone who always has taken care with my hair And would never normally be seen dead with any kind of roots! Anyway, I will hang in there for a few more weeks, with hair that I think looks like a cross between Catweezel - and the Wild Woman of Borneo!

Thanks again for your advice, Border Collies. I will report back via this thread in a few weeks, after my venture into the world of Naturetint! Smiley Wink xx
Member

Re: Calling all Cold Cappers!

Mejane - Congrats on getting FEC behind you. I cold capped like you and kept my hair although it did thin quite a bit. I'm now nearly 11 weeks post chemo. I'm a natural blonde and have always had high and lowlights put in my hair to disguise the odd silver thread that was appearing. Like you all my regrowth at present is silver although I'm told that this is just the baby hair coming through and it will eventually change to normal hair and the colour may change too. I certainly hope so.

At 9.5 weeks post chemo I bought a Daniel Field natural hair colour called Pale Blonde hoping it would just cover the grey and blend in with my natural colour elsewhere. Wrong. It covered the grey all right but I turned out a cross between copper and ginger - nothing like the pale blonde on the packet. It looked awful and despite my OH suggesting that it didn't look too bad and we'd get used to it (he could see I was about to have an emotional melt down over the awful colour) I decided it had to go and rushed out and bought ColourB4 which took all the colour out again. Thus I'm still blonde with grey grinning through and now my hair dresser is back from her hols I'm going to get her to do it properly for me.

I think if you are dark then Daniel Field is fine. I know Jayne.M. used one and was pleased with the results, but I used the palest blonde from Daniel Field and it was horrible. I do know that you cannot have highlights for something like six months post chemo but you can use a natural block colour with no ammonia, peroxide, parabens etc. like Naturtint at around 8 weeks. Some do it sooner and take a chance. I put one in and used another to take it out again and my hair is still hanging in there and looks ok apart from the ghastly grey.

My hair shed until 7 weeks post chemo so I didn't put anything on it until I felt that it had completely stablised. I think we are all different, but if you are blonde I would steer clear of Daniel Field unless you fancy going ginger!!!
Good luck.
B
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Re: Calling all Cold Cappers!

Hi, Wendy, Thanks for the suggestion of the cancer haircare at Lister. I actually had chemo at Lister and Jasmine and her team were hugely encouraging with the CC - and generally a great support To me. They only had two cold caps available and so during my treatment I only saw one other girl using the CC the entire time I was Being treated.

I have decided to live a little longer with my not so attractive greying roots....I've had them since January, so another few weeks won't make any odds! Smiley Happy xx
Member

Re: Calling all Cold Cappers!

Hi Cybele,

Glad you are feeling so much better 6 weeks post Feccin' FEC!!!!! Dead jealous is what I am! Smiley Wink

Yes, I agree about the emotional roller coaster...I'm so pleased to be rid of FEC, yet I do have up and down days and can get quite emotional and angry with myself as my energy is just non-existant. I am impatient to get going, do things and get back to normal, yet I tire so easily and then get annoyed with myself. Obviously 6 days post FEC 6 I am still going to be struggling with energy, but being quite driven, it is hard to just 'do nothing' and I have never been one to sit around. Grrrr... Smiley Sad

Part of my impatience is due to the fact that we have a large garden which requires a lot of maintenance and even with someone who comes in to help once a week, it is hard to manage it. I suppose trying to work out in it 3 days post FEC 6 is not very sensible Is it!!!? Hence today I am suffering for working out there when I'm still not up to it. Steroids are indeed wonderful things! Smiley Happy And boy, am I paying the penalty today! Smiley Sad

I can't wait to be 6 weeks post FEC like you!!!! I know I just need to be more patient with myself And give myslf time to recover properly. Like you, I am going to leave my hair alone for a while just to make sure it doesn't try to do a last minute disappearing act!!Smiley Wink Okay, so I have head full of silvery grey hair, but at least I have hair...the bottle blond will just have too wait in the wings for a while longer.....MJXX
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Re: Calling all Cold Cappers!

Hey Mejane, congratulations on finishing FEC - great feeling, isn't it? Although the few weeks after you finish tend to be a bit of an emotional roller coaster, so be prepared. On the December thread many of us found ourselves having a lot of wild bouts of weeping after we'd finished - it's a strange time emotionally, that's for sure. Feeling absolutely great now, though, and rads is a walk in the park after chemo (touch wood!)

I'm now 6 weeks post-FEC, and finally beginning to believe that all my hair is not suddenly going to fall out as a post-FEC surprise. I haven't tried colouring it yet, and am inclined to leave it alone for a good while, just in case...

BTW, somewhat belatedly, thank you for your very kind words about the blog, which were much appreciated. Looking back on chemo now with a little distance, I'm astonished that I managed to write a blog post every single day for 134 days of feckin' FEC.

Steroids are wonderful things...
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Re: Calling all Cold Cappers!

There is a very good website called cancerhaircare think it is run by Liste hospital and very useful wish I had found start of cold capping. Think they recommend after 3 weeks if hair is healthy. Left mine about 5 weeks and was fine.

Wendy x x
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Re: Calling all Cold Cappers!

Bump
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Re: Calling all Cold Cappers!

Have finally finished round 6 of feccin' FEC chemo ! Cold cap has worked very well, I am pleased to say. Hair still hang in' in there, so to speak!

Can anyone a bit further down the line advise me how long you waited before colouring you hair after chemo?

I am only 3 days post my final FEC and am expecting to need to leave my hair alone for a long time yet, to let the chemo out of my system, but any advice you have would be really appreciated? I suppose I'm just concerned that having gone through cold capping, which anyone going through it will know can be uncomfortable, in my eagerness to get back to normal, I don't want to now rush into putting colour and blond highlights back in, only to have the hair fall out now!

I am thinking of using Daniel field colour, has anyone used it after CC and if so, how did you find it? Any feedback or advice welcome!

All the very best to anyone starting out on or who is mid-way through using the CC - from where I'm sitting right now, it has been SO worth putting up with it to now be out the other end at long last.....and a grateful deep-sigh-of-relief kind of goodbye to feccin' feccin' FEC!!! Smiley Wink xxx
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Re: Calling all Cold Cappers!

Typographical error. Planty should read PLENTY once called Bounty. Really should proof read my posts!
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Re: Calling all Cold Cappers!

Littlescoot - I was told to was 48 hours before cold cap and not until 3 days after leaving in all the leave in conditioner. It's not a pretty sight but it does work. Make sure your hair is thoroughly wet right through to the roots before you put on the conditioner and then the cold cap, and make sure the cap is fitting snugly all over your head. It's all a bit of a performance and not pleasant having this gungy hair afterwards. Don't blow it dry or use brushes, tongs, straighteners etc. Wash and rinse in cold water and sleep on a silk pillowcase. I actually just pulled a silk nightie over my cotton pillowcase as I was too mean to go out and buy a silk one that wasn't going to match the rest of my bedding. As I say, it's all a bit of a palavar but the end result is that you have hair, albeit somewhat thinner than it was before, but you don't look very different. I didn't tell anyone but my family that I had cancer and no one has noticed anything. Also if you get thin bits by using the cold cap your new hair will grow through so much faster than if you had gone bald as even though you may have lost some hair the hair follicles will have been protected somewhat. If you get a thin area don't let the nurses suggest you give up the cap because the cold may harm your scalp. Cover the thin area with a piece of "Planty" kitchen towel, the sort that doesn't dissolve in water, or use a surgeon's paper cap and then put on the cc as usual. In some hospitals nurses encourage you to give up as it makes less work for them. Don't. It's your head and your hair. I used kitchen paper and have come out of it with a complete covering of hair. I wish you all the best with the cold cap and your journey through this awful disease.
Member

Re: Calling all Cold Cappers!

Hi Littlescoot - I was advised before starting using the CC to wash hair between 48 and 24 hours prior to using the CC. I was also advised to leave hair alone afterwards for at least 48 hours, that means even tho it's grungy and yuk, don't comb it, brush it or anything, just leave it as it is and stick on a cap or scarf over it. Then forget about it for 48 hours!
Sleeping on a silk pillowcase also helps to stop the hair from pulling from the root. Best of luck with using the CC and also with your treatment too. I was scared to death before having chemo, but whilst it's something I'd rather not be having of course (!) it is not half as bad as I expected - and is do-able. MJ xxx
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Re: Calling all Cold Cappers!

Hi everyone,
I'm starting chemo next fri (10th) and will be using the cold cap Smiley Happy. Since having my hair cut into a short graduated bob ( and thinned out by about half last week, as I had too much hair and this will hopefully give the cc a better chance to get to all my hair) I now have to wash my hair twice a week instead of once.
Can anyone tell my how clean or greasy my hair should be on the actual day of the cc. Should I wash the day before so its clean and soft or wash a few days prior to cc so it's flatter and greasier ( oh doesn't that sound delish!)?
many thanks Smiley Happy LS xxxx
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Re: Calling all Cold Cappers!

Cybele - thanks for your feedback, we have both been very lucky with the CC, I am keeping my fingers crossed that it will 'hang in there' post FEC6 which will be in a couple of weeks time. I am a cycle behind you I think.
I agree with you that there is almost certainly some genetic element involved between those people on the CC who keep there hair - and those that don't. l too remember several elderly uncles in their eighties with thick white locks, which as C says is unisual - I hope I have their same tenacious hair too! Also key to it working is the cap has to fit snugly and be as tight as you can bear it! Smiley Sad!
On my earlier entry on this thread I also meant to mention that I changed on FEC 4 to a smaller outer CC hat size, but have retained the same outer hat all the way through, ( same big head, just less hair!) but with a smaller outer hat size it has made the whole thing tighter over the scalp and hopefully will get a better result.
As far as other FEC SE's, go, unlike you, I have been fairly lucky with SE's of FEC. The sickness meds have worked for me mostly, I do get very tired and sometimes in the first 5 days or so have an almost indescribable weakness, a feeling of total exhaustion, one minute I am on a steroid induced high, the next minute almost coma-like, all very bizarre, but always resulting in having to Stop what I'm doing and lie down. Then I might read something, see something or someone and without warning feel really emotional for no apparent reason. And then there's the EATING...the steroid induced greediness, the grazing on crisps, nuts and chocolates, all figure in the first 5 days of my FEC Survival guide....I had thought I might lose my appetite and shed a few pounds, but NO! I have put on about 7 pounds since FEC started and will need to do something about this before too long.
A cold-cap wearing Betty Bunter lookalike I will turn out to be if I don't exert some WILL POWER in the Food department VERY soon!
Great to hear that you are feeling so much better now, Cybele, I am counting the days till the end of Feccing FEC too. Thanks again for your great blog, it was highly entertaining and really made me laugh, a great source of encouragement. XXX
Member

Re: Calling all Cold Cappers!

Just caught up on this thread after long absence - great job, Mejane! It will be an inspiration to everyone wondering about whether to use the cold cap.

I am now 4 weeks post FEC 6, having used the cold cap, and didn't have any significant hair loss. I've just been to the hairdresser and had it cut for the first time since before chemo, and my hairdresser said it was a little thinner than before, but there were no bald patches at all.

During chemo I washed my hair once a week with Simple shampoo, didn't use a hair dryer, and just left it completely alone.

I've obviously been incredibly lucky! Like Mejane, I was holding my breath all the way through chemo, conivinced that at some point it was just all going to fall out at once, but it didn't. So Mejane, I reckon if you've got this far, you're probably ok.

I'm inclined to think there may be some genetic element involved for those who do keep their hair, as well as the effect of the cold cap - I have several paternal uncles in their 80s who still have full heads of hair, which is unusual, so I'm wondering if my father's family have particularly tenacious hair!

I had a pretty rough time with the chemo otherwise, and keeping my hair was the one cheering element in a very dark few months. I found the pain from the cold cap much harder to bear towards the end - but that may have been because I was so generally traumatised by all the other problems that occurred.

Now I'm 4 weeks post FEC6 and starting to feel so much better, and finally believing that it's finished, that I don't have to go back to the chemo ward anymore - it takes a while. When you're in the middle of chemo it feels like it will NEVER END - but it does. You will get your life back...
Good luck to anyone who's about to embark on the cold cap - it really is worth giving it a go.
Member

Re: Calling all Cold Cappers!

Hi Jayne, that's really encouraging to hear how your hair is post FEC 6! It sounds like we both feel the same way about the CC and want to encourage others to use it.
Like you, I am keen to return to a degree of normality as soon as possible after chemo and am hoping my own hair holds out like your has! I am not keen to be wearing a wig over the summer months either, so am keeping my fingers well and truly crossed! I'm cautiously optimistic, but will wait till I'm at least 3 weeks post FEC 6 before popping any champagne corks! I am going to use Danial Field veg dye too when the time comes - thanks for all the advice and feedback. Best of luck Jayne. XX
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Re: Calling all Cold Cappers!

My profile picture shows my hair now, I finished 6 X FEC in January - all the thinner bits have filled in with new hari coming through, I have been able to colour it (using Daniel Field veg dye) and am back to washing it most days and blow-drying. It has really been worth using the cold cap as I feel I have got back to looking 'normal' very quickly and the wig has never been worn! My hair continued to shed until 7 weeks post the last chemo then stopped suddenly and has been fine since. It is still soft and babylike but no-one would know I had been through chemo.

Good luck MJ for the rest of your treatment and to anyone starting out wth the cold cap.

Jayne x
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Re: Calling all Cold Cappers!

Hi, having started this cold cap thread a while ago, I thought I'd give anyone interested in the CC a general update on how the Cold cap has been working for me - so far! I remain cautious of course as you can lose hair right till the end of chemo and beyond for at least 6 weeks after finishing chemo.

My treatment comprises of chemo (FEC 75 x 6) for adjuvant BC, I had a lumpoctomy and SNB (no nodes affected) in November. I am now 2 days post FEC 5 - with just one more fec to go on MAY 20th, then goodbye to feccing FEC Smiley Wink !

This update is really aimed at anyone thinking of trying the CC - or wondering whether to continue with it. I say this because you do lose hair throughout the treatment, even with the CC, some more than others and everyone is different of course..

After FEC 2 I lost quite a bit of hair from the crown of my head and thought this was it! - the beginning of a major shed and I considered giving up. But fortunately this proved not to be the case for me. I was encouraged to stick with the CC, mainly because of this thread - by the ladies who responded on it (Cybele, Sanytoes, to name name but a few). Thank you ladies.

Like many ladies have described on the forum, after FEC 2, even on the CC, I also had a sensitive and painful scalp in the area that I shed hair from the following day, so recognised beforehand the sympoms so expected that the hair would probably fall from there - and it did. Still there was enough coverage there to encourage me to persevere. I had read that some people became very thin on top, sometimes bald on top, so I was prepared, if very upset, for this also to be the case for me. Hence starting the CC thread, other ladies a few cycles ahead of me really encouraged me not to give up.

After FEC 2 hair loss settled down a lot and whilst I continue to lose hairs when I wash it (about every 6 days) it is only a little more than usual. I have stuck rigidly to the instructions I was given at the start, leave the hair alone basically, let it dry hair naturally and use no other hair products. I have adopted a more casual style and have got used to leaving it alone, it has continued to grow, if a little slower, during chemo and I have had to have the fringe trimmed, but left the rest of it alone. Whilst the hair on top is a bit thinner, it is enough coverage and is even a bit thicker than after FEC 2. I say all this with some caution, with at least 6 more weeks to go before the hair stablises.

So, if you are about to start treatment and you are considering trying the CC, do give it a try. It is not a bed of roses and is painful for the first 20 mins or so, but after that, for me the scalp seems get used to it! For me after 20 minutes it is nolonger painful, just a bit uncomfortable and tight under the chin. But I have someone with me at every session so this is a welcome distraction and helps the time pass quicker. And I was determined from the beginning to put up with whatever I needed to, to try to keep my hair.

The CC has enabled me for much of the time between treatments to feel normal, not to look like a cancer patient, not to have to wear the wig I went to great lengths to get (it sits still elegantly on the wighead - forever i hope!) Smiley Wink and to go out, albeit a little greyer, a little less groomed than I normally am, but it has made the chemo that I started with such dread, to be a little easier to bear.

The very best of luck to anyone using the CC now - or about to start. I really hopes it works for you. MJx
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Re: Calling all Cold Cappers!

Thanks Sandytoes. I had a portacath installed last Thursday and that seems to be settling down nicely......my first chemo is Wed so I'm hoping for a pain free session. I have dark purple nail varnish for my fingers and toes and am hoping for only easy manageable SE's......is that too much to ask for? :-)
xx
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Re: Calling all Cold Cappers!

I'm not exactly sure what the steroids do...I think they protect against allergic reactions, act as an antisickness med and also help boost your appetite...but I'm no doctor! Think I read that somewhere!
Glad you're happy with your decision not to cold cap, Kate. Let me know if you have any other questions about the regimen.
Hope chemo goes smoothly for you both.
x
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Re: Calling all Cold Cappers!

Oh ...didn't realise everyone has to take steroids,
Why and when ??
Know so little at the moment...still getting used to website and understanding all the abbreviations.
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Re: Calling all Cold Cappers!

Thanks Sandytoes, I've made the decision not to try the cold cap, I'm planning for the least time possible in hospital, my OH will be taking me for my chemo and he can then continue working around this shorter sessions. I've got a wig session booked, have received my first head covering......which everyone laughed at me in so I think I need to not wear that one! :-) I think I have accepted hair loss and hope that's my one long term side effect! Wishful thinking i know but I am trying to be positive! :-)
Kate
xx
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Re: Calling all Cold Cappers!

Kate - It's only uncomfortable at the start - and then your head goes numb and you feel nothing. I got pumped full of pirition with TAX and actually slept all the way through for about 3 hours with the cold cap on!!
JaneyJ - we all have steroids and it definitely doesn't protect against the hairloss unfortunately.
Good luck girls.
x
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Re: Calling all Cold Cappers!

Thankyou for the help and advive on cc. I wasnt going to bother as the booklet i was given didnt sound very positive.
I am goin to try it
Thanks again.
Does everyone have to take steroids ?
Was wandering if there is a link to preventing hair loss if on them.
A friend of mine suffered from alopecia and had to take steroids to help with hair regrowth.
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Re: Calling all Cold Cappers!

Hi Sandytoes,
great to hear from you as that is my treatment plan and hadn't heard of anyone else having the same, was the cold Cap really uncomfortable to wear for the Tax as it was onfor longer or had you got used to it by then? Were the side effects different for each of the drugs and did you get more or less tired on tax? Sorry for all the questions but I am trying to get lots of info so I can make my own decision on cc.
Thanks Kate
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Re: Calling all Cold Cappers!

Hi!
I had dose dense fortnightly 4xAC and 4xTax and my onc said there was no way the cap would work for me - but I tried it and was over the moon with the results. I lost a lot of hair - it thinned a lot - but it filled in really quickly after chemo and a month after my final one I had no hairstyle I felt confident with.
i have pics of me and tips here: http://chemoforbeginners.com/2012/11/20/keeping-hair-cold-capping/
I hope it works for you.
x

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Re: Calling all Cold Cappers!

ladies, I had my surgery privately but opted to have treatment on the NHS, I couldn't fault them and I had the injections after a low count even though I was never ill or was never hospitalised x
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Re: Calling all Cold Cappers!

Thanks Mejane, I'll speak to the BCN and see if its as definitive as the Onco seemed to imply. I'm going on a 'girls' 2 night cruise at the end of May so want to either have my hair or a wig sorted by then! Can't imagine looking at photos in years to come of me, my 2 sisters, my mum and my eldest niece all dressed up in our glam rags and me with no hair - my brother wouldn't like the photo either in case someone thought it was him I'm sure! :-)
Kate
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Re: Calling all Cold Cappers!

Chascat - thanks for the info on FAST shampoo - I should have checked before I started slathering it on!!! Der... Smiley Sad
Needless to say I have been using FAST since it arrived in the post after FEC 2 and still have most of my hair, but have now stopped using it. I will now wait till after chemo has finished in May. Bring it on...! Smiley Happy xxx
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Re: Calling all Cold Cappers!

Katebil - I'm on Fec 75 x 6 - I'm currently about to have Fec 4 tomorrow. I'm not definitely sure what the hair loss situation is with Taxol, but before deciding on whether or not to try the CC, I would first check with the ONC or BCN about the regime you are on and whether the CC might actually work with the combination of 4 Tax/4 AC. You could start using it and see how you get on, it might be dependent upon how many treatments of Taxol you have to have as to whether hair loss is definitive or not.
I can absolutely see why you might worry about just 'delaying the inevitable' though, but before making your decision, remember that the CC doesn't necessarily work for everyone anyway whatever treatment regime you happen to be on and if you get to keep your hair for at least part of your treatment it is less time without hair! Less time looking like your brother! (lol!) and it might help you through treatment. Just a thought, of course, everyone is different.
I am a great advocate of the CC and for me - so far anyway - it seems to be working okay, my hair is thinner but I still don't look like a cancer patient and this is helping me through. On good days when SE's are minimal, i try to live life normally and to forget about treatment. I am also keen not too keen to have to wear a wig in the summer so will persevere with the CC no matter what!
Good luck katebil, whatever you decide regarding the CC. ! I hope someone on the forum reads your post and can give you a more definitive answer about Taxol and hair loss than I can. XXX
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Re: Calling all Cold Cappers!

Ladies, for info, the manufactures of Fast Shampoo and Conditioner advise it should not be used until 8 weeks post your final chemo x
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Re: Calling all Cold Cappers!

I'm reading through all these posts and no-one seems to be having AC or Taxol drugs - I'm about to start 4 of each over the next 16 weeks but have been told I WILL lose my hair on Taxol but could keep it using CC on AC. Has anyone else had this combination of chemo and if so what happened to your hair, did you try CC? I'm thinking CC will only delay the inevitable if hairloss is so definitive on Taxol.....but I'm only going on what the Onco said rather than anyone's experience. Any advice/info anyone can provide would be appreciated as I'm not sure I'd look great without any hair (I have a brother with no hair and I don't want to look like him! )
Kate
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Re: Calling all Cold Cappers!

I've just gone onto the CallIng all cold Cappers thread for the first time in a while and seen several new posts - apologies for not responding to them sooner.
I have had 10 very good days after 10 very bad days immediately after FEC 75 (3) so have been out and about on every one of those good days trying feel and do 'normal' things with friends and forget about hospital appointments, needles and rotten old FEC! This has meant less time browsing the forum! During my bad days of 'Fecking' FEC', I read everyone's posts very often and find the site so supportive, helpful and encouraging.
CEA49 - I'm really glad you found my cold cap updates encouraging, I am still extremely pleased with the CC results so far, I am always hesitant in speaking too soon as I still have 3 more FEC's to go, but even if my hair does suddenly decide to part company with my scalp (!) I have at least had the added benefit fit of keeping it for much longer than I would have done had I not used the CC. To be able to go out and look and feel relatively normal with most of my hair is really helping me get through the chemo. I have FEC 4 on Monday, fingers crossed, then I'm two thirds of the way through what I now call 'the poison zone'. Not long now. The hair nurse who is really excellent has said that she thinks the CC is working well for me so I am really encouraged - and hopeful! - that she is right!
Jennifer - you may well be right about FAST shampoo and conditioner and not using it until after chemo has finished. The instructions are very basic and say very little apart from how long to leave it on etc, nothing about when to start using it. I got it after reading rave reviews online about how effective it is in re-growing hair, particularly if you are going through chemo. My hair is 'hanging in there', so to speak, so I don't think it's doing any harm. But one thing the instructions do say is to 'scrub your scalp', which I certainly don't do whilst using the cold cap! If I did that I think I would immediately resemble Friar Tuck!!! I just gently rinse both shampoo and conditioner through hair, no rubbing at all. But probably the fact that the instructions say 'scrub your scalp' indicates to me that the manufacturers most likely intend the product for use AFTER chemo by people affected by total or partial hair loss. Not necessarily by Cold Cappers like us! I am going to stop using it until after chemo and go back to using dr.Organic Manuka Honey shampoo and conditioner which worked well in the beginning after FEC1.
Tulip - you are very brave using a hair colour during treatment! I'm very pleased for you that the colour you used worked. I have been wondering whether to colour my hair too. It is currently ash blond with light grey/whitish roots creeping through! Not a good look I've decided, but one I will probably stick with until after chemo, just because I'm too scared the colour will cause more hair loss. Cowardy-custard through and through, that's me!
Best of luck to cold Cappers and non- cold Cappers alike if, like me, you are about to be poisoned yet again! Wishing everyone minimal SE's and also for time to pass quickly till the end of chemo - by all accounts once chemo finishes, the rest of the treatments aware a breeze in comparison - let's hope! XXX
Highlighted
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Re: Calling all Cold Cappers!

Hi
I used the cold cap & like you had lots of fine hair. After about 17 days I started to lose hair rapidly, but it has slowed down to almost normal loss now, after 4 treatments & I still have a reasonable cover.
For info my colour was growing out & although advised not to colour it, a nurse told me I should be OK with a non-ammonia based colour. I took the plunge yesterday & coloured my hair using Olia. It worked well I feel much better when I look in the mirror!! I chose Olia because it is supposed to be gentle on the scalp. It was a rich non-drip cream & smelt much nicer than ammonia based colours.
Hope this helps.
Unfortunately the Consultant doesn't think the chemo is working for me. I had to have a scan last week & go back for the results on Thursday. Not sure what my options will be. I haven't had surgery, but tried Tamoxifen, which also didn't work for me. Presistant little blighter my tumour
Barbara
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Re: Calling all Cold Cappers!

Hi Mejane - Just a query - I thought you couldn't use FAST shampoo and conditioner until after chemo finished. I had FEC3 yesterday but my hair is quite thin on the top but still got quite a bit at the back My hair is fine anyway so I am not unduly worried.
Jennifer xx
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Re: Calling all Cold Cappers!

Thanks for the update Mejane. i am also persevering with the cold cap (just had FEC2) and have found your notes really encouraging.
Here's a tip for anyone just about to start chemo and is planning to use the cold cap and who wears glasses. If you have contact lenses as well just pop them in on the morning of your chemo. I found the cap was so tight I couldn't get my glasses on to read, write, use my phone or ipad. Hope this helps!
Caroline x
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Re: Calling all Cold Cappers!

Oh my goodness mejane - is that why you're 10 days delayed? Hope you're feeling a lot better, this weather has a lot to answer for, doesn't it?! Sounds like the answer is wash and go-when-your-hair's-dry! Oh, and totally agree about this annoying site - losing posts, autocorrecting to nonsense, it certainly tries your patience doesn't it!

Summer, it sounds like you are on the same chemo regime as I was - 3 FEC, then 3 T and I made it to the end with most of my hair - so fingers crossed you will too :-)

Hope everyone else is doing OK!
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Re: Calling all Cold Cappers!

HI cold cappers! Good news mejaneSmiley Wink
Just to say I am now 10 days post FEC3 and still have my hair Smiley Wink thinned in my eyes but no need to cover up in any way as you just can't tell. The cold cap is a pain but so is the chemo so for me the fact I lOok like me has been an amazing boost to my positivity!
Im now swapping to x3 docetaxel and hope the cc works with this chemo cocktail - anyone successful with cc not on FEC?
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Re: Calling all Cold Cappers!

I started the calling all Cold Cappers thread way back when, but have not been very good at posting on this site. I regularly read all the Jan gems and Feb valentines threads, I am now 7 days post FEC 75 (3 of 6) I started chemo in Jan but had my second round delayed by 10 days so I'm now probably at the same stage as the Valentines.
I thought I would give you an update on the CC and how I am getting on with it, just incase anyone is dithering about using it or continuing with it, I would say - stick with it!
7 days 7 post FEC 3, I still have a good head of hair, yes, it is a little thinner on top, but having thick hair to begin with, I don't think it notices too much. Is my hair coming out at all? Yes it is a little bit, but only just a bit more than usual on the comb and not every day. As someone who normally styles my hair and makes up everyday, I still do the make-up bit, but have adopted a 'wash and go' style which I leave to dry naturally, use FAST shampoo and conditioner, and comb once a day! For me the CC has stopped the hair coming out in clumps, like some other people have described, so when hair is lost, it is even and - i say this cautiously as I still have 3 dreaded FEC's to go - it seems to be working ok so far. I have not as yet resorted wearing my all singing all dancing wig which I brought just before starting chemo, sure that my hair would all fall out immediately after FEC 1 !
A word of warning with the 'wash and go style' - ' i rather stupidly ventured out 3 days post FEC 3 with wet hair and not enough clothes on! Result: infection and hospital stay! It brought home to me just how vulnerable we all are to infection. I am now home, wrapped up in bed, with my now dry 'wash and go' look, and will not venture out again without full winter warmers! I learnt my lesson this time round. Best of luck to everyone using the CC, do stick with it if you can bear the first 15-20 mins, for me - so far - it is making all the difference to me, getting through this hideous treatment.
Although I'm not wearing my wig - yet - for anyone looking for a really first class wig service, go no further than Michael Roberts in Southend. (I promise you I'm not on commission!) They have a great website, are family run and have lovely staff. I was recommended them by a friend of mine who is GP in Essex and can't recommend them highly enough. I live in Herts, so went for a day out to South End - and came back wig almost identical to my own hair!
Best of luck to you all.xxx
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Re: Calling all Cold Cappers!

Just lost a long post so grrrr. What IS it with this site? hot air coming out of thinning hair!! Grrrr... Was trying to post an update and then for absolutely no reason I lost the lot...... AAAGGH!
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Re: Calling all Cold Cappers!

Wow well doneCybele that's good to hear -and only one more to go
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Re: Calling all Cold Cappers!

I am 6 days post FEC5 (out of 6) , using the cold cap, have followed exactly the regime Jayne M outlined, and have hardly lost any hair at all. I might have shed a bit more than usual, but I really can't tell any difference.

Also my eyebrows and eyelashes are still all intact. Hair on legs - which was limited anyway - has pretty much gone, and down under I've got what can only be described as a Chemo Brazilian, with a little bit left at the front - but the hair on my head has stayed absolutely fine and exceptionally shiny, which I find slightly worrying.

I've had a truly hideous time with all the other side effects, so am very thankful that in this one area at least I have got off lightly (touch wood - it still might all fall out after FEC6, you never know..)

I hate the cold cap, and have found it harder to bear every time - I think this is just getting tired and weaker in general after 5 doses of chemo - but it really has worked for me.
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Re: Calling all Cold Cappers!

I'm on third fec by the waySmiley Wink