Chemo / cold cap

Hi Wilbur88

Welcome to the forum and sorry to hear that you have been diagnosed with triple negative breast cancer.  While I didn't have a choice whether to cold cap or not as I had my treatment in the middle of the pandemic I thought I'd reply to you to welcome you to the community and to move you to the top of the discussion. Hopefully someone will be along shortly with the benefit of their experience with cold capping.

Wishing you the best of luck with your treatment and I hope the side effects are kind to you.

Best wishes

Daisy53

Hiya, 

I did use the cold cap. I lost about 1/4 to 1/3 my hair, although I do have to say that if I had a choice again I would still use it. No headaches, just bloody cold!!! You leave the unit with icicles on your hair! As treatment goes on and you lose hair it does get colder. 
Depends on your outlook. I am vain and didn’t want to lose my head hair. Wasn’t comfortable but not that bad. Taking pain killers before hand did help especially as treatment went on 

Cwtches, 

Gay xxx

Hello Wilbur88

I am sorry to hear that you have had a diagnosis of breast cancer and need to have some chemotherapy and immunotherapy.

I had my chemotherapy last year- May to August and used the cooling cap throughout. Whilst it is a very personal choice, I am glad I did and would do it all again if needed. For me it was successful. I went in with an open mind and thought I would give it a go. I wanted to help protect my hair follicles and I was concerned about the very small chance of permanent hair loss mentioned by my consultant. 

Most people will still experience some shedding when using the cooling cap. However although I had thinning all over I kept enough hair that I did not need to use a wig or use scarves. I had them on standby by in the end did not need them. I lost all body hair around 14 days after my first chemo cycle and I would have lost all the hair on my head at the same time if the cooling cap had not worked. The way I looked at it was that the chemo I was on (paclitaxel/carboplatin) would cause me to lose all my hair whereas if I used the cooling cap I would hopefully save at least some. It meant that I could look as normal as possible and not look as ill as I felt. Hair is a part of our identity and for me the first thing I thought when I was told I needed chemo was that I would lose all my hair. I also believe that the cooling cap protects your hair follicles and that it leads to faster and thicker regrowth. I found this myself and know of many others who have found the same. For some people it does not work as well but from experience these people tend to see some expected shedding in the first cycle and think it is not working so decide to shave it all off. Shedding is not a sign it is not working, it is expected. There were other ladies having different chemos to me that tended to come in on the same day as me and they also had success with it. They all thinned a bit but if you did not know them and what they normally looked like you would not be able to tell. Although I had some thinning from the first cycle - I also had some regrowth from the second cycle. This meant in the whole time- I had no bald spots.

The things people seem to worry about with the scalp cooling is the discomfort and it adding to the length of the day. 

I found it uncomfortable for the first 10 minutes or so and was advised to take a paracetamol before hand. It certainly was not unbearable, more like a pressure type headache. After the first few minutes your head tends to get used to it and it felt a bit numb if anything. Its a sort of tight feeling. If you try it and you do not like the sensation- they can turn the machine off immediately. I had a blanket with me from home and was given a cup of tea and by the time I had drunk it- it was ok for me. I didn't notice any dizziness/headaches etc from using it.

It does add a little time to the chemo at the beginning and end of the day. It takes 30 minutes to cool to the correct temperature and I found I would have been there anyway as was waiting for blood test results and also beginning the pre meds. I was in from 8-5 anyway. At the end of the day it had to stay on for 90 minutes after the last chemo drug went through but during this time I would be going through my symptom diary and talking through new medications and getting support from my nurses. They were also doing things like removing the drips and tidying things up. It was quite nice to be honest to be able to sit and talk with the other patients during this time and to finish the day with a cuppa and chat. Realistically I probably only stayed around half an hour longer than I would have needed to without the cap.

When using the cooling cap they will give you some hair care instructions. It is basically treating your hair very gently. Washing it only twice a week. No colouring, no straightening etc. Chemo makes your hair dry and brittle so it is important to take good care of it. You need to comb your hair through twice a day with a wide toothed comb to remove any hair that has shed to stop it matting. I found the main shedding for me was mainly days 14-18 of the first cycle and at the very end of chemo. I lost only a small amount in the other cycles. It sounds like a lot of work but to be honest you just get in the routine.

My regrowth started between cycle 2-3. Fine at first. Regrowth continued through chemo. I lost a small amount in front and behind my ears as that is where the cap doesn't touch. My hair looked at it's worst for the month after chemo finished but during this time I was having daily radiotherapy. My hair became dry and a bit straggly. I used loads of conditioner which helped. By around 6 weeks post chemo I had a good head of hair, shoulder length. I had some waves rather than chemo curls. I coloured my hair at 12 weeks. By then I had thick hair. I had my first hair cut around 2 months later. This was to tidy it up as it was growing back all different lengths. I had to have my fringe cut during the chemo.

It is a personal decision whether you want to give it a go or not. Only you can decide if it is what you want. There is a thread in the Chemotherapy on hair loss that may be of interest to you as it is other people's experiences. I will pop a link below for you.

Hair Loss and Hair Loss treatments - Macmillan Online Community

I hope this helps a bit and if there is anything else you want to know please just ask.

Jane

Thank you so much. Nice to meet you (although unfortunate circumstances) xx

Your hair type and the actual chemo drugs will be factors. I had EC followed by Paclitaxel last year. I have fine, straight hair. I cold capped for the first session of EC but was more or less bald on top by the second session. I didn’t bother after that, but it started patchily regrowing through the Paclitaxel, and it came back very well once the chemo finished, albeit it had gone white. This year, I am on NAB-Paclitaxel plus Pembrolizumab foe metastatic cancer.  My hair has thinned, worse on top. 

Hi Wilbur88, I cold capped throughout my 8 chemo sessions. It was on longest with the EC and then much shorter with docetaxel. I didn’t suffer headaches or dizziness. I took paracetamol a few minutes before it started. Yes it’s cold and the first 10mins are the hardest bit, but once through that it’s much easier. I occasionally used a blanket but most of the time I was fine. I lost about 80% of my hair but I understand from the Paxman website using the cold cap helps to protect the the hair follicles and also with the regrowth. I’m now just over 3 months post chemo and I have a full head of hair about 2 can in length. I was upset at losing my hair but I’m glad I persevered with cold capping. I did use a surgical cap too which helps if you do loose hair as it protects any bald patches. Everyone is different and so people don’t loose any hair or they thin just a bit. Unfortunately there is no way of telling who will or won’t loose hair and who will or won’t benefit from cold capping. If you don’t use it on your first chemo cycle you can’t add it later so it might be worth giving it a go. You can always take it off if you don’t like it no problem. 
Wishing you all the best.

Hugs from cuffcake x x x x x

Hi

I used cold cap with EC and Paclataxel for 8 sessions last year and am very glad I did. I have fine straight mid length hair. I wanted to at least give it a go and it worked for about 80% of my head - lost a fair bit on the crown and at sideburn area. It was uncomfortable but you get used to it and it was worth it to me so I didn’t look or feel like a sick person, for myself and for my kids. 
I wasn’t so bothered about the bit of extra time - just watched a new boxset on Apple TV free subscription to keep me busy.
It’s been steadily growing back and now almost back to full length - you wouldn’t know I’d had it (whereas there is a risk of it coming back grey, curly or not at all) 

Worth trying the first time and see how you get on - at least you can then stop if you don’t like it, whereas you can’t start it if you don’t do it at the first session. 

Best of luck with all your treatment 

Hi Jane, 

I finished my chemo at the end of April, and I also used the cold cap. I kept half my hair and using the cap meant that it has looked better much sooner than if I hadn't used it. But the condition is totally different and I have a white streak. My hairdresser is trying to stop me dye-ing it but I'm not ready for grey hair just yet. I keep hearing that I really shouldn't dye it yet, but you did at 12 weeks. Can I ask which dye you used, and did you have any problems? At the moment my hair is really fine and flyaway, and I don't want it to get any worse. Do you have any tips, please?

Hi Gill65

I used my normal nice and easy hair dye. I had stopped any shedding within a month of chemo ending and had used lots of conditioning treatments. I didn't leave it on as long as I would normally and I used the conditioner treatment and left it on for a good 10 minutes. I had no breakage or any problems and it took fairly well. I would listen to your hairdresser as they know your hair best. I did use those spray in root covers for a while to begin with. They helped disguise things. Could your hairdresser do a strand test perhaps. I felt so much better for putting a colour on mine. 

Hi Jane,

Thank you for replying. My hairdresser only wants me NOT to dye it because he wants me to embrace old age!!! I hate how looking in the mirror makes me feel, so I'm going for it. I've just been onto the Paxman website, and they suggest 3 months, which I am now! So thank you, you make me feel more confident. Our mental health is important too, and I need to do this. I'll take your advice about the long conditioning time!! 

Does 'Nice & Easy' have ammonia in it?