Cold Cap - did it help keep your hair?

[Pumpkin]

Hiya. I tried it the first time but had the cap on for about 6 hours which wasn't pleasant. I then suffered really bad head and throat pains for about a week. I was considering going through it again then I noticed a lot of hair loss just before the 2nd treatment. I also noticed that my hair texture had changed and would not respond as normal. At that point I knew that with thinning hair it was a lot easier to wear a wig which are now so much more stylish and realistic. Not for me but we are all different. I have about 5 wigs and they do the job quite nicely. 

[Donna]

Just had first session yesterday. Used paxman cold cap and coped pretty well. However headache started last night and is still pounding, painkillers not touching it. Anyone else had the same?

[rosarty]

Hi dotty. I found the cold cap hard too. I used it for my first two doses of FEC. Yep 3 hours plus. No you don't change it during that time I used the Paxman cooling system. Unfortunately it didn't work for me. 😞

[riversidedawn]

Hi Dotty, well done for sticking with it for 3 hours. It depends on the type of cold cap you are using. One system is plugged into a cooling unit so you have a tube connecting your cap and to the machine which keeps pumping icy water round. The other (ive not seen) I gather that they keep snapping new cold caps from the freezer throughout your treatment.

I found that I got used to it and kept asking my nurse if it was still switched on as it didn't feel cold!

[Dotty]

Hi everyone am new to this, this is my first post. I had chemo a week ago and used the cold cap, it was terrible but managed to stick it out for 3 hours, however I have just read that it's supposed to be changed every half hour, mine wasn't. So I'm wondering if mine was done properly, has any one any info on having used the cold cap? I thought I was just acclimatising to it but maybe it wasn't freezing merely defreezing 😟

[rosarty]

I was the same. I used really gentle shampoos and products. Did everything to the book. Unfortunately didn't work for me. I found once I knew the outcome and made my decision to cut it all off it was a huge relief. And one less thing to worry about. You'll know what's the best thing to do when the time comes. Fingers crossed for you but I think you will know pretty quickly after the second cycle. I didn't lose any hair after first. I changed my focus to my diet rather than my hair and it has really helped me. I'm loosely following the professor jane plant programme for diet. There's an excellent recipe book and easy to follow advice.
Try not to worry too much about hair. It's really hard but a temporary phase. Xx

[Babypink]

I keep,looking to see my hair change its silly I feel like I dare not touch it and fixate on it.  I must stop.  It's either going to work or not

[Mushyy]

It definitely works! Way more people need to be educated about cold cap therapy. Do you know about Arctic Cold Caps? It's a...

[rosarty]

Hi baby pink. Yes the wigs aren't the most comfortable of things! But I ordered a bamboo wig liner from Wigs4u which feels really soft against my scalp. Better than the normal nylon things you get. It's alot thicker and breathable.
I have a bit of fluff on my scalp so not completely bald and I think my hair is actually growing! You can never be sure what will happen next with this treatment!

[Babypink]

I've got two nice like peak woolly hats. Three bobble caps and one beanie. I've two wigs just in case. I am also glad it's winter so I won't look odd with a hat on. One thing on my mind is head itching and sweating under the wig. Mine is for work and it would be all day

[rosarty]

Hi baby pink. Hope you are coming round now from your first chemo.  I was pretty rough for a few days then started to pick up. Then had a dip on my day 9/10 mid cycle then OK in third week. 

So far re the hair or lack of I've managed well with scarves tied in nice bows at the bacK with trendy Hats on top. Thank goodness its winter! Wore my wig for first time this sat. But still wore my hat! Felt OK And my husband and daughters liked it. Think it will be kept for hi days and holidays as is very warm and a bit itchy after a few  hours! To be honest when you're bundled Up in coats scarves and hats no one notices hair!

 Good luck with second cycle. You'll soon know after that if the cold cap has worked. Fingers crossed. But my advice is get some nice hats and accessories in ready. Scarves earrings etc  xxx

[Babypink]

Ho rosarty I did try the cap unpleasant as it was I'm happy I gave it a go. If it does not work for me as I do have shiny and thick locks and it starts to drop out it's likely it will come off. I'm not sure how I will handle it I'm probably going to be heartbroken. I've had long hair for years and always complimented on it. It's going to be a shock I think

[rosarty]

Hi babypink. The hair falling out in chunks and the bald patches were far more stressful for me than the shave. My approach was it didn't bare any resemblance to my original hair so what was I trying to save! I had to wear hats all the time and cover it up anyway! I just look at it now as the new me. My hairdresser is looking forward to trying out lots of new pixie hairstyles when it starts growing again! Good luck with the cold cap. You have to give it at least two goes before you'll know if it's worth it. Xxx

[Babypink]

Tomorrow is my first chemo and I am giving the cold cap a go, if it does start to fall out in big chunks and does not work for me, I think in the back of my mind I will shave it off.  I don't think I can cope with looking at myself with big bald patches

[lisajane7878]

I started my T yesterday after 3 fec. Have been cold capping all way through. Have lost about half my hair and have a very annoying bald patch right at the top. I can't complain though as manage to hide it really well with clipping the fringe back in a kind of quiff. You can't even tell. The thinning has definitely eased off loads now too. I'm told it will start to grow back a bit now too. So I'm thinking with regards to hate loss my worst is over. I bought a product last week that I ordered in from boots called topik. It's amazing!! It's like a coloured powder that I sprinkle on the thinning bits. It works brilliantly. Definitely worth a try if any of you are darker as that pink scalp shinning through can look a bit obvious xxx

[Awil]

Hi rosarty .... Funny I found docetaxel harder but all doable .... Er only a slight bit of fluff !!!! On my legs yes lol can you believe it !!!! Start rads next week and still have to have herceptin but yes pleased chemo done .... Good luck .... I have a card someone bought me saying
You are stronger than you think and braver than you feel 😘 I quote that most days .... We can do this all of us xxxxx

[rosarty]

Hi. Awil. Well done you finishing chemo!! I'm hoping the docetoxyl will be a bit easier but I'm guessing there will be a whole new boat load of side effects!! Sounds like the hair loss slows down through this. Has yours started growing back now? Xx

[Awil]

Hi I had the same as you rosarty 3 X Fec and 3 X dox and had cold cap twice felt ill with it but thought if kept hair .... But was falling out in clumps after second dose do my daughter who is a hair dresser cut very short but o
List all on top do the clippers come out and you are right it was kind of a relief... Tears then you just get on with it .... I have a false fringe I bought on wigs4u it's Velcro and just goes under bandanna or hat makes me feel less of a C victim ...... Finished chemo 3 weeks ago starting rads next week ..... Good luck with rest of chemo xxx

[rosarty]

---

@Rosielea wrote:

Unlike most here, I didn't continue with cold cap after 1st round of chemo. (I finished round 6 28/10/15 and haven't gone bald, just thinned a lot. So it does seem to be luck as much as anything.

The fit of the cap is crucial, must be tight all over. The better the contact between the hat and head, the more likely it is to work. Long thick hair will have poorest fit but then will probably still will have plenty even if they do thin. I had a shoulder length bob and fine hair.

I was warned that the coldness could give headaches, make you feel cold etc but I coped fine with that side of things, yes it was cold for the first 15 mins or so but I just found it made thewhole experience much worse. The tightness of the cap and the chin strap just made me so clostorphobic/paniky that I think I just felt very moment of that 3 hour session and I vowed if I lost any hair after round 1 I wouldn't bother with cold cap on round 2. Day 17 I started losing lots, needles to say I didn't have it round 2.

How much more I have lost has varied with each cycle, round 2 I lost lots and that's when I cut my hair short, then clippered it to a no1. Round 4 I didn't have a sore head at all so guess I didn't lose much that round. In fact I think it was round 1-3 where I lost most but I have not gone bald yet! 

As as for eyebrows, they seem to be the last to go, I have v.short stubby ones with nothing at the out edges and eyelashes have been done since about round 3/4. This is v.annoying as bits get in your eyes all the time. Had lovely smooth legs for a while, been growing again for a while now. Facial hair lessened but didn't go. Lady garden went gradually, but not completely. 

Good luck whichever way you decide to go.

---

I'm on 3x FEC and 3x Docetoxyl programme. Had my second FEC last Tuesday. Think I'm on quite high dose epirubicin at 100mg

I cold capped (paxman system) for these first two doses 

Found capping Very hard. Headache all way through 3 hrs and felt nauseous as soon as it went on!  Had my long wavy hair cut to a Bob before. Nothing happened after first cycle And kept all my hair. Persevered with capping for second cycle with help from a sedative the night before! 

Rinsed hair gently under Shower second day after cycle and it came out in clumps. Persevered thinking this was just a shedding but hair falling out continuously over next few days leaving bald patches. . By day 5 after second cycle I was so distressed with this I decided to shave off completely. Was a huge relief to be honest and far less distressing than the hair just falling out everywhere. 

My husband and children said I had a lovely shaped head and actually said I looked good!! 

I am relieved not to have to cold cap again but was glad I gave it a go. I'm sure its success has a lot to do with drugs and doseage you are on. 

My advice still would be to give it a go. I guess there's a 50/50 chance of it working. We are all different and it seems some find it a lot easier than others.

Its been really helpful reading peoples honest experiences on this forum.  

[rosarty]

I'm on 3x FEC and 3x Docetoxyl programme. Had my second FEC last Tuesday. Think I'm on quite high dose epirubicin at 100mg

I cold capped (paxman system) for these first two doses 

Found capping Very hard. Headache all way through 3 hrs and felt nauseous as soon as it went on!  Had my long wavy hair cut to a Bob before. Nothing happened after first cycle And kept all my hair. Persevered with capping for second cycle with help from a sedative the night before! 

Rinsed hair gently under Shower second day after cycle and it came out in clumps. Persevered thinking this was just a shedding but hair falling out continuously over next few days leaving bald patches. . By day 5 after second cycle I was so distressed with this I decided to shave off completely. Was a huge relief to be honest and far less distressing than the hair just falling out everywhere. 

My husband and children said I had a lovely shaped head and actually said I looked good!! 

I am relieved not to have to cold cap again but was glad I gave it a go. I'm sure its success has a lot to do with drugs and doseage you are on. 

My advice still would be to give it a go. I guess there's a 50/50 chance of it working. We are all different and it seems some find it a lot easier than others.

Its been really helpful reading peoples honest experiences on this forum.  

[Rosielea]

Unlike most here, I didn't continue with cold cap after 1st round of chemo. (I finished round 6 28/10/15 and haven't gone bald, just thinned a lot. So it does seem to be luck as much as anything.

The fit of the cap is crucial, must be tight all over. The better the contact between the hat and head, the more likely it is to work. Long thick hair will have poorest fit but then will probably still will have plenty even if they do thin. I had a shoulder length bob and fine hair.

I was warned that the coldness could give headaches, make you feel cold etc but I coped fine with that side of things, yes it was cold for the first 15 mins or so but I just found it made thewhole experience much worse. The tightness of the cap and the chin strap just made me so clostorphobic/paniky that I think I just felt very moment of that 3 hour session and I vowed if I lost any hair after round 1 I wouldn't bother with cold cap on round 2. Day 17 I started losing lots, needles to say I didn't have it round 2.

How much more I have lost has varied with each cycle, round 2 I lost lots and that's when I cut my hair short, then clippered it to a no1. Round 4 I didn't have a sore head at all so guess I didn't lose much that round. In fact I think it was round 1-3 where I lost most but I have not gone bald yet! 

As as for eyebrows, they seem to be the last to go, I have v.short stubby ones with nothing at the out edges and eyelashes have been done since about round 3/4. This is v.annoying as bits get in your eyes all the time. Had lovely smooth legs for a while, been growing again for a while now. Facial hair lessened but didn't go. Lady garden went gradually, but not completely. 

Good luck whichever way you decide to go.

[Mysticalmoo]

Hi,

I used the cold cap for my chemo March-July 2014, I have a thick chin length bob which I have had regularly trimmed since chemo finished.  My hairdresser commented that he has seen many ladies with chemo hair and its take about 2.5 years to get the condition and thickness of mine.  I attribute it all the cold cap.  This is a link to a post I wrote on another thread where there is a lot of information that you may find useful...

https://forum.breastcancercare.org.uk/t5/Chemotherapy/Hair-loss/m-p/948328#

Good luck

Rebecca 

[riversidedawn]

I cold capped for 3 x fec plus 11 x weekly taxol starting Oct 14 until April this year. It is uncomfortable for the first 10-20 mins but after that it's OK.

Tips:
Wear layers you get cold
Hot drinks and hot water bottle
Wear a headband to protect earz and forehead
Take strong painkillers half hour before

My hair thinned after first fec then not much more. I cut it to a bob and tied back in loose ponytail to hide thin bits.

Def worth it as now have a full head if shoulder length hair with 3 or 4 inch natural layers of regrowth!

[Paula16]

Hi Babypink

It's been about 3 years since I had my chemo, and I used the cold cap. When I did it, you had to wear the cap for at least 30mins before the start of the treatment, and I think 30 minutes after. I found it quite painful at start, but soon got used to it, however, mine had to be changed half way through, so that was uncomfortable. I think I had it on for about 2hrs in total, but I might be wrong, my memory is bad! 

I had long thick curly hair, and wasn't given any advice, so the first time wasn't a complete success, as the cap probably didn't get near enough to my scalp. It's best to keep your hair as flat to your head. I ended up losing quite a bit after the 2nd treatment, and did have my hair cut to about shoulder length. After that, I'd lose some, but managed, with the help of some filaments the disguise the odd bald patch, to not need my wig. 

Hopefully this helps you a bit, all the very best luck to you and everyone else doing through it now xx

[Babypink]

So the cap is it put on when you are receiving the chemo infusions? How long is it on your head for? How many times do you wear it? I'm down for 5/6 months of chemo

[birgi.w@gmail.com]

I had my first treatment 3 weeks ago, going into2nd cycle on monday. the cold cap was very unpleasant for

the first 30 min. then you get used to it. I did not experiences any headaches or similar. it was just weird and cold. Dress appropriately, maybe bring a scarf. My hair started to fall out a little bit after 3 weeks but not in junks.
I think it is worth a try......

my hair is long and I have not cut it yet. They kept on saying , wait until you know how much hair you will lose. so i will wait.

[birgi.w@gmail.com]

not sure yet.

Its 3 weeks now. and my hair started to fall out 2 days ago. but not in junks....its just more than usual.

I have 4 cycles.....so lets see what I have on my head in 2 months.

I have long hair and havnt cut it yet..  . as I was told I should wait and see and I might be able to wearmuy hear in a ponytail and hide my bold spots.....

[Babypink]

Just seen your post about cold cap. I'm due to start chemo in three weeks and contemplating cold cap. What is the feeling I would experience did it really help

Did you still need to cut your hair short? I'm finding it difficult to accept at the moment

Thank you

[Pumpkin]

Hello everyone. I'm reading these messages to get some inspiration as I'm sitting in hospital having my first FECT treatment with the cold cap. The first 30 minutes was hard and my ears really suffered but now having had it on for about 3 hours it's just fine. I just hope it works. I know that it depends on the person and chemo drugs. I'll keep you posted.

[Lorna-Marie Ford]

I used it for the first time Friday my forehead feels bruised and sore and bending down hurts did you get this symptom I'm paranoid now xxx

[larasmum]

I am planning to use this and begin my chemo next week. I am happy to give you feedback if you still need itx

[Annettem]

I am having FEC-T just had 4th cycle of 6, although the cold cap isn't pleasant, i have managed to keep most of my hair. It has thinned on the top and still comes out for a couple of days each cycle but everyone has said its looks fine and they would never know i was having chemo! Once you move onto Docetaxle you dont have to keep the cap on for quite so long, so it does get easier.

[chachacha]

I finished chemo 6 weeks ago, and used the coldcap throughout. I had 6 cycles of FEC T. My hair has thinned quite a lot, and I got a bald patch on the top of my head (where the cap didnt quite fit properly) . I didn't need to wear my wig though as I used hair filaments (a kind of coloured powder they sell in Boots, aimed for balding men!). I sprinkled these on the bald area, then pulled my fringe back over the area using an alice band. My hair is a short bob and i was just able to tie it back which I did at times. My hair continued to fall out until 3 weeks after the last chemo, but has now stopped. Im really pleased that I persevered with the cold cap.

[marli]

Alexandra - I am unable to send email, it won;t send. Could you tell me where your college is,Sorry I've never heard of it. Marli

[arichardson9]

Hi! I am a student at Geaorgia Institute of Technology and I am on a design team that is currently working to improve chemo cold cap technology. Our team would love to speak with people who have first hand experience with using cold caps. If you would be willing to give any feedback or personal accounts of using a cold cap devide, please email me at arichardson9@gatech.edu. 

Thanks so much! 

-Alexandra

[riversidedawn]

Hope it goes well LisaJane. It does increase the time for each chemo session, but I felt it was well worth it. Your daughter is very young, my kids were 9 and 12 when I was diagnosed (a year ago last week). We didn't hide anything from them, we explained I'd been diagnosed and that I'll have to have an operation and chemo, then let them ask questions. There are some comic book style info things for kids from MacMillian (I think, or may be BCC, can't remember - they were too young for mine). All the best x

[lisajane7878]

Thanks so much for all this info Jane. I'm about to start my Fec-T on Wednesday and do want to give the cold cap a try. Even though it gets a bit of negativity. So it's great to hear it has worked for so many of you. I have had my hair cut to a short bob which I love and wish I had done years ago!!! It was so dry on the bottom I knew I would be pulling t out just trying to detangle it. I do have a wig ready in prep for it falling out which I'm thrilled with but would love to keep my own. My hair is so thick so even if I lose half it shouldn't be noticeable. As daft as this may sound the hair loss won't bother me but I'm worried about what my 5 year old daughter will say!!! Stupid I know but we haven't really said much to her yet as she's a real worrier.

[EdwardX]

I recommend a relative or friend Cap. Be sure to put tylenol3 or sedatives to help protect against the cold.

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[Nicciryan]

Hi, I've used the cold cap & have had amazing results. I do have much thinner hair on top & at the sides of my hair which i think is where the cap doesn't touch / fit properly. However i think im the only one who notices. I only get brain freeze for about the first 5mins, then it goes. Don't get me wrong, i'd love not to have to wear it as It would make Chemo much easier. However, my hair was important to me so well worth it. x

[clem]

Hi - I used the cold cap for my first FEC, and it fitted really well, and my head was frozen - covered in ice when removed.  Still lost at least 75% of my hair from that first cycle, including a large area on the top of my head.  I used it again for the 2nd cycle, just for the heck, and still losing.  I have not bothered with the 3rd FEC.  I think it is very individual how it affects you.  I didn't find it a problem to use.  Yes it is a bit of a bother and it definitely extends the treatment time.  I did feel cold but that is easily countered.  I'd say it's worth a try and see how it affects you!

[riversidedawn]

Odd how we are all different. All my other hair is growing back so thick and fast, having to shave legs daily instead of weekly, the lady garden is going mad and had to have the bikini line waxed much further than usual!

[Pinkbaglady]

I used the cold cap through FEC-T. My hairdresser reckoned I had lost about 25% when she saw my hair 3 weeks after my last chemo. I'm almost 14 weeks post chemo now and still losing hair especially when I wash it. All my other hair is growing back well. So yes, I haven a similar problem to you Deehar.

[riversidedawn]

I finished cold capping on 10 April. I had my hair trimmed and coloured in June and its really thickening up now. My hair loss was really only after the first fec in November and new growth started immediately so I have a layer of new hair around 2-3 inches long. I plan to keep ep trimming til it's all the same length again, although these natural layers are giving it body! Keep going, its worth it ladies.

[emmadjm]

Hi, I'm going to haven't my first chemotherapy next week, and I'm in quite a quandary about the cold cap.its all a bit Scarry!! There are very few parts of my body I like.....2 of them been removed and now I'm likely to loss my hair... but it's better than the alterative. It great to read about people who have or are going through the same thing, you don't feel alone.

[Deehar1]

I used the cold cap through 4 cycles of chemo and kept approx 40% of my hair, although it is very thin on top. The fitting of the cap is in my view really essential to get the best result. Now 8 weeks on from my last chemo, I am still noticing that my hair is falling out (rather more than it would naturally have done before) and I have less of it to lose! I talked to my oncologist about this who told me that the Docitaxal impacts the hair follicles, even of the hair you keep and did not seem surprised that I was still losing some. Dies anyone else have experience of on going loss of what they 'saved' above and beyond what you might natually expect to lose each time you wash/brush? I do have new growth coming through so it's not alopecia as far as Im aware....

[riversidedawn]

I cold capped 3 x fec and 11 x weekly taxol. I lost approx 1/3-1/2 my thickness of hair all over after the first fec. After that oy started to grow back. Lady garden went first though. My leg and underarm hair stopped growing after a while but shaving again by the end of Chemo. Weirdly eyelashes have only just come out - finished Chemo 6 weeks ago and eyebrows thinning! Also plucking chin hair - though it's gone grey!

[Cappinsister]

I'm capping my sister. Talk to penguin cold cap reps they have tons of info. I recommend a relative or friend to cap you. Make sure you take tylenol3 or a sedative to help withstand the cold. They suggest a list of items to buy You have to have caps tight and at the correct frozen temp according to your chemo meds. They'll tell you.

[Cappinsister]

Hi my sister and I are capping our sister for the 2nd round in a week. Pls provide any tips for success. We pray this helps and are doing it right. Thanks.

[sooba74]

Thank you for the advice everyone, I just saw my son (he's 20) and he said that it wasn't really bad, just a small patch.  I've brought a few scarves so if it stays like this I can hopefully just cover up the top but I will definately consider cutting it off because my scalp is so itchy and tingly feeling.

I'm seeing my oncologist tomorrow, hopefully she will be able to tell me if this is all of the hair loss I will experience or its just the beginning?