Hi I am now on day 10 of third FEC and have coldcapped for each session. It is uncomfortable but it needs to be to do the job properly. I take paracetamol before it goes on. My hair has thinned but it is not patchy and I still have plenty left. Losing my hair was a major thing for me so the fact that I still have most of it has made a huge difference to my mental well being. It doesnt work for everyone but I would say definitely give it a go if you want to salvage some kind of normality!
i am just about to start Chemotherapy for 12,weeks . I’m having a mild dose of Chemotherapy but still have a chance of losing my hair which would be soul destroying . I really want to try the cold cap. Would love any advice possible.
I am five days in from second FEC chemo so nearly four weeks since first chemo and hair is stil here . It has thinned and losing strands but I am optimistic as next drug will be milder so need to get to next FEC without significant loss . It hurts for 10 mins then you acclimatise I just visualised losing all my hair got me through . Good luck I am nervous but hopeful will keep my hair or most of it
i am just about to start Chemotherapy for 12,weeks . I’m having a mild dose of Chemotherapy but still have a chance of losing my hair which would be soul destroying . I really want to try the cold cap. Would love any advice possible.
Hi. I thought it worthwhile to share my experience having just finished 5 months of chemotherapy last week (yay!). I am 45 years old and had a mastectomy of left breast for IDC in July (with temporary expander implant which I will switch later this year). I commenced EC chemotherapy in September and had 3 rounds (every 3 weeks), followed by 12 rounds of Taxol (weekly).
I used the Paxman cold cap throughout the whole chemo treatment and have preserved my hair intact with no bald patches. Whilst I have shed strands of hair most days, and it has thinned a reasonable amount ( in my view), to the untrained eye it is not noticeable. I have short straight hair - not super thick but there was quite a bit of it and I would only colour it 2-3 times a year so it was in quite good condition and strong to start with.
So I can confirm that yes cold capping did preserve my hair and would suggest if you can grit your teeth and bear with it, it is worth it. It has been very empowering especially as I have continued working throughout and whilst I was quite prepared to wear a wig and bought lots of hats I tend to lose heat through my head and can get a bit sweaty from headwear.
For the first one I was nervous and was nearly not going to do it as I couldn't find many positive stories on the Forum. But I watched Rachel Bland's blog and that gave me the courage to give it a go. I took Paramol each time (an hour before) - it has paracetamol and codeine it so a bit of an extra kick. I also had reflexology to coincide with the cold cap being put on. That distracted me enough and I chatted to whoever was giving me the foot massage and that got me through that first 10 mins of freezing. For the first one I needed to do some concentrating and positive visualisation - imagining jumping into a cold sea or lake and taking deep breaths to get through that first strange experience.
I had heard some people throw the cap off in pain. I would not say it was that excruciating at all - more uncomfortable like an extended ice cream headache.
The nurses always had a heated blanket and plenty of layers on hand. Sometimes I would need them, sometimes I wouldn't. I tended not to really eat during the chemo either but would make sure I had eaten an hour or so beforehand and not until I got home. You may want to think about varying the conditioner the nurse put on for the cold cap so you don't associate the smell with the experience.
Washing wise - I would wash 2 to 3 times a week and try and natural dry as long as possible. I used a shampoo called Grow Me which you can get on Amazon: https://www.amazon.co.uk/dp/B00Q59B4UK/ref=sspa_dk_detail_1?psc=1&pd_rd_i=B00Q59B4UK&pd_rd_w=gU6aj&p...
I also researched good dry shampoos for in between days and whilst expensive found Living Proof (from Space NK) to be best: https://www.spacenk.com/uk/en_GB/haircare/shampoo/dry-shampoo/phd-dry-shampoo-MUK200020501.html
You will probably know by week 3 or so if it is working or not as if it is, it won't come out in chunks and should just be strands here and there. Certainly makes you more house tidy though as there is always hair everywhere !
As for my eyelashes - they have pretty much gone now - I was using mascara throughout until about week 8 of Taxol and then they have gradually fallen out. I now define my eyes quite heavily as a camouflage (Charlotte Tilbury Rock n Kohl) and wear glasses so no one can particularly notice unless looking closely. My eyebrows have thinned quite a bit but not entirely (yet) so I pencil those in.
So that's me! I am happy to chat to anyone who needs support or advice.
Just an update since it is 6 weeks since I finished chemo. I posted in November and explained why alrhough I cold capped, I lost 75-80% of my hair (basically didnt use it perfectly). I carried on using it the last 2 chemo cycles nevertheless.
6 weeks on my hair seems to be growing back well. People have commented that this is quicker than without coldcapping. It is quite thick and about 2cm. There are slightly thinner patches over and front of my ears, where the cap doesnt reach so well so I can see the difference the cold cap has made.
Sadly it is very white/grey (used to be dark brown) but Im off to buy some funky coloured hair chalk today. 🤪
I feel brave enough to venture into public now without hat or wig.
Now IF ONLY my eyebrows and eyelashes would grow back 😩😩
Hi I decided to use the cold cap - had hair past shoulder length - had 6 rounds of EC. After the first chemo session - in perparing for the second - washing hair - the lion share of it fell out. The hairdresser did her best and cut what was left very short - boulding on the top. This said I continued with the cold cap - and through the chemo treatment it did begin to grow back - much to my astonishment. When you put the cap on for the first 5 to 10 mins its very uncomfortable but after the it becomes bearable. You will be restricted on movement because the cap is attached to the ice generation unit which is rather bulky. I found also that I would begin to shiver during the latter stages of each chemo treatment - a blanket is needed. I did feel that the nurses tried to discurage me from using the cold cap - it does make the whole treatment time required extended by about 2 hours. I found I was able to mange without a wig - but this took some courage as my hair was a bit threadbare. It has grown back very quickly as I had a headstart.
Hi my name is MelMel, I joined this forum last month.
i am receiving my treatment for secondary breast cancer in Canada, I studied in London and lived there for 9 years 35 years ago. 8-)
I am on Taxol and later on Letrozole. one of the side effects for both is hair loss.
I lost all my hair in cycle 2 and come back in cycle 5 but look like a cheap mixing grass lawn with spots grow like weed harsh and taller
I remember in 2011 chemo, forgot the protocol, also lost my hair in cycle 2 and come back in cycle 5 but looks like a cassic blue kentucy grass lawn, thick and soft .
think i will be on Letrozole daily in long term like 10 years. Would cold cap work ???
I saw my gp as had anxiety too about pain of the cold cap. I took 1mg of lorazapam the morning of my chemo which was prescribed. And the chemo nurse will suggest you take either paracetomol or ibruprofen 30-45 mins before cool cap goes on. I hate being cold and I honestly had no problems. Later my breast nurse told me that gps will often prescribe lorazapam for anxiety for patients going through chemo. So you could maybe discuss this? I hope it helps you and I so understand how anxious you are feeling. XX
Hello from across the pond!
I am a little over 3 weeks post final chemo (pfc) and used the penguin cold caps and had success with them! I was looking for a little information on when to expect to see some new growth and happened upon this thread and thought I'd share.
There are two threads about cold capping on the breastcancer.org site, one that is before, during and after pictures and one that is more question, answer, compare experiences.
There is also an organization in the US called the rapunzel project and they have a nice primer on cold capping, the different caps available etc.
There is a woman near my home who is kind of an "independent contractor" for Penguin Caps. She acts as a local wharehouse, so you don't have to wait for shipping, she has a team of women who you can hire to do the capping for you, and she also offers (for a fee) a class to teach friends/family members her techniques for cold capping. She provided tips and some resources.
My chemo was 12 weeks of weekly paclitaxel (taxol) followed by 4 rounds of every other week doxorubicin/cyclophosphamide (aka adrimycin/cytoxan or A/C). I bearly had any hair loss (on my head) during the taxol as that drug is easier on the old follicles. The A/C is much harsher. About 21 days after my first A/C infusion, I had a few days of major shedding which scared the #%$@ out of me. After that the shedding slowed to a bit more than it was during the taxol. I am still shedding a bit more than what I think I would without any chemo, but I do have at least 50% of my hair left. It is thinner, but I don't think that anyone who didn't know me before would think anything was amiss.
The Penguin caps do have the longest suggested pre and post cooling periods, meaning you cap for much longer, but they also have the best published results from what I've found. I don't know if you would get the same results if you used another system for the same length of time, or if the penguin caps get the scalp to a colder temperature than the other caps, or what the secret is. I know for the caps that have to be changed (not the paxman or dignicap systems) that Penguin has a different "gel" in their caps compared to the other four companies.
Luckily, I live relatively close to my chemo center, so when I was done with my infusion, I'd get everything packed up, do one last cap change and race home and finish the rest of the capping in the comfort of my own house. My mother and two of my aunts did my capping for me, so that helped keep the cost down.
The woman who I mentioned above has been running her cold capping business since she did it for her sister 9 years ago and states that she has a 98% success rate, meaning 98% of her clients kept enough of their hair that they did not feel that they needed to wear a wig, hat, or other head covering.
I met with my radiation oncologist last week and she remarked that I didn't have a seroma at my lumpectomy site. I reminded her that surgery was at the end of May, and it is now December. I think she kept forgetting that I had done chemo because of my hair, if that tells you how well it worked. That and my eyebrow wigs!
Best of luck to you all and know that while it is a hassel, not being reminded that you have cancer every time you look in the mirror and not having to grow hair out from scratch is a big bonus!
Many thanks. I have decided to give the cold cap a miss though because people here mainly seem to have lost their hair eventually and I don't like the idea of adding 2 hours to each treatment session! Also, my hair is very fine anyway. I have an appointment with the 'wig lady' next week before I start Chemo. Have bought a couple of hats and will get some headscarves/turbans.
I have been cold capping throughout and have lost 80% of my hair. I have done 4 cycles of EC and 2 out of 4 of Docetaxel. I cant go out without covering up my head. I am glad I did it and will persevere on the last 2 in the hope that it might help my hair regrow more quickly after chemo finishes.
I think there are several reasons why it has not been a brilliant success.
1 Cycle 4 I felt quite ill through chemo and on reflection I did not fit the cap perfectly and it was turned off for a while. Remember that it it only takes one bad cycle to undo the good work!
2 There is a clear pattern of greater baldness on the top of my head, you really need to pull the straps tight to make sure there is good contact at the top of the cap. I have a tendency to release the straps a bit to natter or eat and dont retighten them enough
3 lots of the other drug cocktails contribute to hair loss
4 Ive noticed in the past that my hair fall out with stress - well its been 5 months of full on stress!!!!
but overall glad to have done it and keep what is left. I have little fringe which I like to show under my scarves 👍🏻
I used the cold cap for my 1st treatment but will not be using it for the second. I have shed loads of hair off my head this week but still have my eyelashes, eyebrows etc, so I can only think it must be the cap that damaged my hair. I have followed the instructions to the letter and even had my daughter washing my hair so that she could see what she was doing better than me.
I have only just got my treatment plan and don't see my pre-start team until December. No idea yet when treatment will start, so investigating a few things.
I went to website of cold cap manufacturers (it was in my treatment documents) and they say average chemo is 2 1/2 hour session. I have been told that my 3 1/2 hour session will be increased to 5 1/2 hours if I have a cold cap. Anyone else having that sort of length of chemo session? Also, I tried website's prediction for hair loss and although I did not have my dosages to enter in their profile (for more reliable prediction) I did have the combination of the drugs to fill in. Even so, they said only 50% chance of no hair loss - and they make these caps!. It seems a lot of extra suffering for only a 50-50 chance - of retaining some thinned out hair. Until you have had a chemo session you don't know how hard that is going to be in itself either. Any further comments or tips in helping me make that decision about cold cap, please? Like the rest of us, I would like to keep my hair - dehumanising otherwise.
Hi ladies, I started my chemo on 9th August 2018. My chemotherapy regime is 3EC and 12 paxlitaxol . I have done the 3 EC and 3 pax and pleased to say I still have a full head of hair!!!! Apparently it is the EC that really gets your hair, they call this the red devil .The paxlitaxol causes hair loss but not as much as this is a lower dose.
My tips for cold capping is too be really fussy when getting the cap fitted(i am using the Pac man cold cap, I bring in flannels to pack the cap out where it does not fit. Take paracetamol half hour before y our treatment , this helps reduce the brain freeze in the first 10 minutes. Please be assured it is bearable coming from a girl that has a really . Low pain threshold.I do not put any heat on my hair and I wash it once a week with ordinary shampoo. I did buy all expensive shampoo and conditioners at first buttbecause there is hardly anything g in them my hair looked greasy after washing. I got my hair cut shoulder length as I was told less weight on hair follicles and easier to manage when combing. I also use a wide tooth comb and not brush.
My hair has gone quite thin but you cannot notice notice. I shedded quite a bit on my first chemo around day 20, I lost a bit on my neck line, this was becAuse the cap was not fitted right down at the back. Please don't let shedding put you off, this is norrmal and stick with it.
By using the cold cap and being g lucky that it is working I feel like it has give me some control back and i still look like myself.
Please give it a go it is definitely worth it, also women who cold cap with me are all doing really well with their hair.
I hope this helps , good luck everyone xXxX
Can i ask the girls who've used the cc how you keep your ears warm? I can't stand my ears being cold! I will have to start chemo after my op and was thinking of trying cc as feel I'm losing enough besides my hair. Been looking online but it's all ear muffs on a band which probably wouldn't fit over the cap.
I was devastated to be told I would probably lose my gorgeous funky purple hair when I started chemo so I decided to definitely try the cold cap to keep my hair as much as possible for me and the kids. The first treatment was hard, and it left me with a migraine for the full first week on top of the steroid side effects but worth it. Sadly when I went back for my second treatment the chemo nurse told me I had lost more hair in the 3 weeks than some people do over the whole chemo regime - without the cold cap!! She said it clearly wasnt working for me and agreed wiht my husband that it wasnt worth the extra discomfort and time. Sad for me but some people just do not get a positive result.
Seeing what some people here are saying I would say give it a go on your first chemo and see if it works ....if you are one of the lucky ones it is one thing less for you to feel crappy about!!
This is an interesting solution! I already went through this, and I had a completely different approach to this situation. I cut off my long hair under a short haircut, which for a long time I wanted but was afraid to do. I changed my hair color (unusual) for cool result by Hair Color Changer and a little time went like a freak, but then I liked it! Now, of course, I grow long hair, but the color is not standard, I still paint the ends of my hair.
Hi, I'm cold capping and (touch wood) don't seem to have lost any hair yet. I've done 3 FEC and 2 T, so my last one is in about ten days time. I loved my hair so much, it was long and blonde and had extensions. They had to come out, clearly and my fabulous hairdresser trimmed it and did a kind of a dark to blonde colour through it before I started, as you're not supposed to have colour treatments etc during chemo and we thought that would hide any roots etc if they did grow throw.
I'm not going to lie, that first 20 minutes the first time was hell, I can understand why people give up at that point, but after 20 minutes it just becomes numb really. And cold. My amazing friend Jayne who comes with me for mine bought me a plug in fleece, like an electric blanket and it is amazing. Each time cold capping the hard first part seems to get easier and quicker to. Deep breathing and saying f**k a lot seems to help.
Yes, don't forget your wooly hat to go home in.
And now the part you're not supposed to do. I wash my hair, blow dry it and straighten it every single day. Yes, that's right. Every single day. Just like I did pre-chemo.Because I didn't just want to keep my hair, I wanted to wear it how I wanted to wear it. In fact if I had to go to work (iIm a teacher) looking like I do when get up in the morning, I'd prefer to wear a wig.
So it could all still go this time (half way between cycle 5 and 6) or it could still go next time, but even if it does I looked good and felt good this far through.
Those bastard treacherous eyelashes are a different matter entirely. I'm learning to love my falsies though,
Hope all goes well for you xxxx
Sending you hugs as I recognise the feeling of what is happening and is it just better to shave it off now.
I found that I lost more hair just before the next round of chemotherapy so likely nothing to do with you styling your hair.
I also used the cold cap and have hair after the 6 sesssions but it has thinned greatly especially in the last two sessions but i also had extra medication due to an infection that slso had hair loss as a side effect.
I kept going with the cold cap as my young girls were struggling with the shorter hair so trying to prevent the no hair look for as long as possible.
I had long hair and as soon as it started to drop out I cut it to shoudler length but after it thinning so much I have had a short bob and considering even shorter due to all the different lengths of regrowth.
So after my expereince I am not sure the cold cap was worth it as my hair dresser wants to cut it short now.
if you do go for all off it does grow back quickly and within 2 months (after last session) other ladies appear to have a short hair cut.
Good luck with the rest of your treatment
Just about to start 4 ac. I will try the cold cap. Any tips. Did anyone else have ac and cold cap?
There are so many questions and concerns on this thread about the cold cappiing. i have stage triple positive breast cancer and had to go through 12 rounds of Taxol and currently having the Herceptin every 3 weeks.
I was more stressed about losing my hair than losing a breast. I was determined to keep my hair. I did my research and founf that cold capping was for me. I was completely comitted to the process. I chose the Penguin cold caps bt the elastogels are good too. Whatever you can afford is the ones to get. THere are important things to know when cold capping. I kept 80% of my hair. It just thinned, no bald spots. NObody could tell but me when my hair was wet. I am going to give some advice and tips for you all as this is what i did for optimal results.
It;s is very inportant to use orgaic shampoo without any parabens and sulfates. try to find a clear shampoo without added color. I also used Rogaine for women and take a Hair/Skin and Nail vitamin. Do not wash hair 2-3 days before chemotherapy and only use COOL water on hair. I waited 3 days AFTER chemo to wash again. Very important to wash hair on the 3rd day to remove residual chemo residue from the scalp. Use conditioner and use a the widest tooth comb you can find to comb through in the shower with conditioner. Do not use a hair dryer, curling iron or any heat tools. Do not use a hair brush. Wide tooth comb only. Do not put hair in ponytail, use clips head bands. Nothing to pull or put stress on hair. No hats or head bands. Do not get head hot as the scalp needs to stay cool all the time, (even working out or being in the sun getting head warm is not good) THink cool all the time. Use a satin pillowcase as this does not pull hair. DO not cut more than 2 inches during chemo and wait 6 months after chemo for any color. It is important to keep this up for 6-8 weeks AFTER your last chemotherapy infusion. THe hair will remain delicate for awhile. Treat it well and it will be reward you back with a head of beautiful hair. Research good shampoos. Don;t go cheap here, Get the best you can afford. I used Juice Beauty shampoo and conditioners. Got it from amazon. Read the labels and make sure its chemical free and organic. Hope this information helps ladies. I am 6 weeks out from chemo and get compliments on my hair. I am so glad I did the cold capping. Cancer took my breasts but it was not going to take my hair!! Wish you all the best in health and beautiful hair! :-)
I think I posted in wrong place before. I have secondary bone and liver mets. I have my second weekly chemo with cold cap today. I dont know how long before eyebrows will disappear but wonder if anyone knows of a good and sensitive tatoo place in London who would do eyebrows.
I've also used the paxman cold cap. Had chemo 4 last week of fecx 6. Mine has thinned quite a bit and I have a balding bit on top (bit like an old man), but I still have lots of hair! I did lose loads during cycle 2 but It's definitely worth trying and I'm glad I did. I think mine has gone on top because the cap is probably not a great fit and my first session the machine wasn't working and I only realised 15 mins after them putting it on. So they took it all off to check the cap and machine. I then think they rushed putting it back on. At a glance no one would know as fringe, back and sides are all pretty good. I think it has made a huge difference to my confidence and mental state to keep my hair. I also wash it once a week with gentle shampoo and conditioner, I ash it in the shower with a jug using warm water. i have curly hair so the only time I use a comb is when I've washed it, the rest of the time I fluff it with my fingers. The first 5-10 mins are the worst and I take paracetemol 30-60 mins before treatment. Just 🤞🏻That I don't lose too much more.