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.