Is cold cap worth it?

[Gadgetgirl]

Hi Debs,
I think the difference in percentage success with the cold cap might relate to any or all of the type of cap, the expertise of the nurses fitting it, and the different chemo regimes. I get the feeling it is less successful with regimes containing TAX. All the best x

[Debs-]

Hi Franqwerty , I also see so many different percentages on here of cold cap success rates.I personally was told it only had a 25% chance of working but there would stil be hair thinning and bald patches included in that percentage. I dont understand such a difference in percentages.

[Franqwerty]

Hi Debs, really sorry to hear you've had a rough time and the cap didn't work as hoped. I also find the misinformation so frustrating. Just had cycle 2 of fec-t with the pax man cap and the experience was completely different. During Cycle 1, I had the most pro-cap nurse you imagine who gave me loads of tips and my hair (straight, fine bob) has been relatively normal. Today although my nurses were fantastic, I had to be quite vigilant with the use of the cap. I requested a tighter fit and longer at the end. They listened and accommodated my requests but I couldn't help but think if this was cycle 1, my hair wouldn't have made it to cycle 2. I think there needs to be more training and reassurance. My original nurse said 80% works when it's used properly. I don't think I'm vain, it's just nice to have a little bit of normality in the roller coaster that is bc!

[Debs-]

Well everybody ,i didnt bother with 2nd cap...my hair being naturally curly was falling out and then getting twisted into my attached hair causing large knotts and dread locks!!! cut my hair shoulder length,still didnt help. Over night i woke with what looked like two dead animals stuck in my hair,,,,dreads wrapped round dreads. No one warned me of this. Took my hair dresser 3hrs to cut out. I now have short straight hair (straightend so can fall straight to ground). Be warned those of you with really curly hair. My hair is falling out way too much for cap to of worked and i was too illl to look after it anyway so i just walked into my 2nd fec on friday and said no to the paxman x

[Dogmad84]

Hello, Debs- hope you are feeling better today- I had two bouts of the most appalling stomach upsets during treatment, and was almost hospitalised because of them- chemo is extremely tough, isn't it?

Thought I would bob in again, to agree with 2013yw- using the cold cap can be an ordeal, but I would do it again without question.

My greatest hair loss was during my final three FEC- I washed my hair just once a week, as advised by BC nurse, and ended up with a bath of hair soup each time, which I found very distressing- the end of each day was also the worst, as my long strands of shoulder length hair would scatter on the floor, and doing an end of day hoover up of my hair was frightful, but I was determined to persevere, and kept around 50% of my hair as I mentioned before.

Not everyone could cope with it, but if you are determined enough, you do get through the cold cap regime, and I really was so pleased I did.

I do also believe that it helps the hair you lose, grow back a bit more quickly.  I do not wish to give the impression I was able to do without any sort of hair cover-up, because that was not the case- I had a number of balding/ thin patches, which I was able to cover up with wide alice bands, and bandanas.  It then took eight months post chemo, before I felt comfortable enough to do away with the hair coverings altogether. Good luck with the rest of your treatment.

[2013yw]

Hi Debs sorry you to hear you not been well, as for the cold cap I lost hair every time I had chemo 6 x fec my biggest loss was on the second one but what you must remember before chemo I bet every time you brushed your hair some came out mine did its only natural my hair went very thin on the top and I pinned my fringe up to hide it I combed it once a day and tied it BC I handled it as little as possible. how ever when the new hair started to grow bk it has come much much thicker then before, I finished my chemo in September at Christmas when I went out I couldn't do much with it so I wore my wig for the first time I bought it in June as a back up ,as for any head aches take some pain killers about an hour before hand I did and I never got any head pains. I do hope you stick with it and when the summer comes and its too hot for wigs you will be glad you did too I know I was. Hope this helps good luck and get well soon. Yvonne x

[Debs-]

Hi all im day 16 of fec but have just spent a week in hospital really poorly.My first fec has not been good from day one and i start again next friday!!! Anyway concerning cold cap my hair has started to come out a bit today!!! I wore paxman, watch this space x

[Mrs_Moomin]

Debs
Thanks for your response. So sorry chemo poor lines is lasting. I have my first session on Monday. Hope your next one does not impact on you so badly. At the moment, I am probably going to give cod cap a go, but am also hedging my bets and looking at wigs. Xx

[Dogmad84]

Hello, Debs.  I kept around half my shoulder length hair through the Paxman scalp cooler, two years ago.  I had 3x Tax, and 3x FEC. 

My biggest hair loss came when I started FEC, but I managed to cover up the thinning/patchy bits with a wide alice band, bandanas and baker boy caps.  As I had some fringe left, and a fair bit around the sides, I could get away with looking relatively 'normal', as I was determined not to look like a cancer patient during treatment. I also saw this as a way of retaining some control at a time when I felt that the treatment was in control. 

The whole regime of wearing the scalp cooler during treatment was pretty grim, but I grinned and beared it, as I was determined to at least have a chance of it working.  Post treatment, I gave the jumpers and cardigans,hot water bottles and blankets I used to keep warm when using the scalp cooler, away to charity, as I felt sick just looking at them, and could not bear to wear them again, but at the time I just focused, and got through it. 

I have to say that for me, the scalp cooler was pretty sucessful, and the 50% of hair I lost, two years post chemo, is now back to jaw length, and is nearly back to its former thickness.  I am very pleased that I persevered, and would say that, in spite of its challenges, it really is worth continuing with it.

[Debs-]

After asking you all is the cold cap worth it I had my first cold cap on 21st march...paxman. Not nice for first 20mins but then settles but i did end up with migraine and chilly!! Am actually wondering if i shall do 2nd one as feel so rotton with chemo at mo even the thought of cap makes me feel sick.It added 3hours extra to my chemo time too.Mrs Moomin,that was one of my concerns  too about cancer and coldcap.Its all swings and roundabouts isnt it? Either way it all sucks .Im day 6 of chemo and still feel bad !! Feel like i cant even be bothererd with the cap right now,least of my problems really !! Watch this space though ladies xx

[Mrs_Moomin]

Dear all
It was so helpful to read all your views as I too have been agonising whether to try the cold cap when I have my first treatment next week. The oncologist and breast care nurse were encouraging me to give it a go but my hair, which is already short, has always been fine.. So, I think it likely that, even, if I only lose some of it, I will feel bald! The other thing is that I absolutely hate headaches.....So, I am beginning to swing against the cold cap? Would much appreciate any further comment as to whether this is sensible. I know it's down to be at the end of the day.

[TracyTriumph]

Hi Debs, don't want to scare you or any other ladies who have used cold caps, but just before I started my treatment I met a GP who was going through chemo & was wearing a wig. I asked her why she hadn't used a cold cap. She told me that it's very rare but there are cases of women getting secondary cancer in the layer of skin which was frozen by the cap. I checked this with my breast care nurse and she said it's true but very very rare. The GP told me she didn't want to take the risk and I decided neither did I. So I'm now bald and glad I did it.

[alice45]

Debs, I'm not a good advert for the cold cap - used it once but the hair started to come out anyway, so stopped. Mine was a 'Dignicap' and seemed to fit OK. I had a really bad headache after about half an hour which lasted 15-20mins. I know others take some paracetamol beforehand, so ask when you go in. They didn't give me any conditioner (it all varies from place to place), just told me to wet the hair thoroughly before the cap went on - and watch out for a shower of ice crystals when it comes off at the end! If you are walking home just give it a good towel dry and remember to bring a comb with you - I didn't... I didn't have problems with feeling cold until the last half hour or so, but brought a wrap to go round the shoulders and back, so used that then. It was all bearable - and worth it if it works, I guess. Good Luck.

[Debs-]

Thank you everybody..i start cold cap at 9am tomorrow morn followed by chemo. I have no idea what cap it is !!! To be honest i dont feel that well informed about anything,got most of my info from here. 

Concerning the conditioner they put on head,i didnt know that either . As im 5min walk from hospital i was going to walk home,now i can see myself looking like a shampood shaggy dog who has not been rinsed well walking down the street !!!! Getting nerv for chemo now,but not the day its self ,just the fact that its the start of another chapter. Constantly on my mind now. 

I also get bad headaches so i gather the cap wont be good for that? Do i take warm clothes to wear etc? Does it make you feel really cold?

thanks for your time and answers x

[jk45]

Hi Debs it sort off worked for me had a small bald patch on top of my head where i didnt push it down properly and it thinned but kept most of my hair i would try it its not that bad xxx jackie

[Bigpumpkin]

Which type of cold cap will you be having? I know when using the Paxman cooling system, there are different sucess rates for different drugs. I am having 3 Fec100- (50 percent sucess rate) then 3 tax (75 percent sucess) I am due my final Fec next week and have a lot if hair but my parting is thinning. I was told that most hair tends to be lost between sessions 2-4. I hardly lost any hair after Fec 1 but gradually increased throughout Fec 2 , not looking forward to number 3!! Sometimes I wish I had just taken the plunge and shaved it off but if I can keep a good covering of my own hair, I will be happy. My hairdresser said that I have invested too much money and she has invested a lot of time in my hair for me to cut it all off lol , anyhow very best of luck whatever you decide to do xxx

[anne71]

Hi, no no bald patches as they make sure the cap fits really snugly (I think I have an extra large inner cap and a large outer cap) . As long as the cap is tight to your scalp then it should be ok. I also ask the nurses to pack around my forehead and tips of my ears with pads as this stops any discomfort during the treatment . Some people also use an elasticated headband to go around the hairline to stop any discomfort 🙂

[marianneknights]

So far I've had 4 x FEC75, using the Paxman cold cap and haven't lost any hair.  It is important to make sure the cap fits snugly all over your head.  In my first session, after a little while I asked the nurse to try a different size as I knew it wasn't touching properly on the top of my head.  Since then I have always used the same size combination and the only place I have suffered any loss is just in front of my ears - but I am the only one who can see it - even when I point it out to people they can't see what I mean!

It is like sitting with a cold wet towel wrapped round your head.  It's not comfortable but it's bearable and definitely worth trying.

I didn't bother cutting my hair short, I just had a normal trim in December (I have shoulder length straight hair). I now wash my hair twice a week, using Dr Organic shampoo and conditioner (from Holland & Barrett) and blow dry it gently and use straighteners occasionally.  I also use a hair oil so my hair is as silky smooth as possible so it doesn't get caught when I'm brushing it or fiddling with it.  I am finding that it's ok to only wash it twice a week as it doesn't seem to get so dirty.  I assume that the chemo is stopping my scalp producing so much oil.

Also, don't wash your hair too soon before chemo as they wet it and slather it with conditioner.  It's fine to wash this out as soon as you get home if you feel up to it.  Bear in mind that you will end up hating the smell of that conditioner so don't use your favourite - use one that doesn't smell very much (Simple) or one you're happy to never use again.

The Paxman website has lots of good information.

Good luck x

[Debs-]

Hey Anne,have you any small bald patches if you don't mind me asking or has it  literally just thinned out? Im having Herceptin too but half way through my chemo.x

[anne71]

Hi, I've had the cold cap and will be having my 6th tch chemo & Herceptin next week and still have hair ! It did shed a lot after the first treatment but then stopped so it's thinner and the texture is a bit drier and my curls went a little straight but I've just had it cut into a shorter style .good luck and it's worth a try ?x

[Debs-]

Diana64 ,i was told 25% success !! Does it depend on what type of chemo you have ?Im confused. One cancer support nurse even told me 20% !! Im due to start friday and cant make up my mind what to do.Sometimes i think be rid of it all so i don't have to wonder every month if i will lose it. Another nurse told me yesterday that i could just go bald on top (thin out) and hide that with a cap etc but have my natural length etc there still !! But if i go round molting like a dog i dont think i will like it . x

[RacingJules]

Hi There

I have had 3 x FEC and 2 X TAX and used the cold cap througout. I still have a good coverage of hair - would say I have probably lost about two thirds of it though. For me it was more important to keep as much of my own hair as I can so I still look like "me" when I look in the mirror. I have coped fine with it and worthwhile. I can get away without a wig if I want to and only resort to the wig for business meetings. 

Definitely worth trying if you are in two minds. 

Best of luck

Jules xx 

[Diana64]

I was told that success rate is approx 90% if cap is fitted correctly. I had first cycle of FEC-T last Wednesday and tried Paxman Cap, don't really know if cap was close fitting enough as wasn't really uncomfortable. The lady next to me was on her third cycle and still had all her hair. Up to now I haven't lost any of my hair, although I know it's early days yet. I would say it has to be worth trying. Good Luck. Diana.

[Gi]

I am about to start chemo. I have been looking at cold caps. I would be in debt to purchase these but would do it if they worked.. Any success stories out ther?

[alice45]

I tried the cold cap on FEC1 as I had a friend who used it years ago very successfully, and kept all her hair throughout chemo (though I don't know what regime she was on). The first session wasn't too uncomfortable - a severe headache for about 20mins was the worst part - but unfortunately before FEC 2 the hair started coming out in handfuls... so I didn't bother again. Makes the sessions shorter at least. But worth trying, as I'm sure it works for some.

[Debs-]

I was not going to bother with the cold cap as heard its only 20% chance of it working.Is this your experience? I have past shoulder length naturally curly hair.Start chemo on 21st march and the cold cap turned up on my treatment plan although i said i didn't want it,but now im wondering!!

Did it help or not help you and what's it like please? x