Hey - I’m sorry I can’t answer your question but I came on this thread as I would like to know the answer and just anything people have to say on cool caps - im starting chemo next week and will be looking tonuse one too

how do you feel after your first chemo? Was it ok? Xx

Hey Amanda, 

I’m not feeling too bad at the moment. The scalp cooling was very hard. It was worse than I was expecting to be honest. But if you can just get through the first 15 mins your body adjusts and it’s ok. I was so tempted to take the cap off after 5 minutes as I felt it was too much. Luckily my husband distracted me by messing around saying I looked funny etc, anything to take your mind from the headache. I felt sick too, this is common for me if I get a headache. All I can say is it better work after all that!! I would give it a go, if you can and just try to get through the first 15 minutes if you can. Good luck! Xx

Yes I will. Just one quick tip I notice from your profile picture you have long hair. I too had long hair and the day before chemo I had it cut into a short bob. I have been told it could help, as weight of hair can mean it falls out more. Not sure if that’s true, but may be worth thinking about.

good luck x

Hi ladies, 

I had the cold cap for my 1st 2 chemo sessions. The 1st 5-15mins are the hardest. I had the cap on 30mins before and 90mins after treatment.  Luckily a friend went with me, she is bubbly, upbeat and always smiling and kept me occupied. I didn't take my hubby or mum as they would have been stroking my hand, saying it will be over with soon, sympathy and them feeling sad for me wasnt what I wanted. About the last hr of wearing the cold cap, I did feel a bit sickly as well as lack of concentration/focus. 

In my experience, after the 1st session, I would recommend you have a shower and wash your hair within 24hrs with a good quality shampoo n conditioner.  Unfortunately I left my hair for 3/4 days before washing it in a scrunchy n my hair got tangled around it. I will be honest it was a mess n my hubby took 3hrs to untangle/cut the knots out. I was distraught as lost some hair. 

The 2nd session went fine with the cap. I washed my hair over the bath then gently wrapped my hair in a towel. It all knotted again, lost more hair. 

I would recommend when you wash your hair always be stood up in the shower. Also if your hair starts to fall out put 2 little loose plaits in n brush every day. I hated hair dropping onto my clothes. 

Sorry it's a long message, but good luck. X

Ahh I know - I just can’t cut it short I really don’t suit short hair either - I got a lovely wig from a African hair shop yesterday and it looks so real so that’s there just incase but here’s hoping cold cap helps abit xx

Thank you for those tips - I’ll be scared to tie my hair up incase it falls out so knowing to wash it soon is a good idea- did you manage to keep your hair? Xx

No, I didn't keep my hair. But it's a weird feeling as a few days after my 2nd chemo, it's like I could hear my hair fall out. I have a lovely hairdresser and after my 4th chemo she cut it so it was 1inch long all over, even though I didn't have much, I wasn't brave enough to have it shaved. I have a wig, but only worn it a few times. I've just got used to having hardly any hair. I've a few colourful cotton caps I sometimes wear that I bought from Amazon. It's now 10 weeks post chemo and my hair is growing, it's about 1cm. 

Hi  I had neo adjuvant chemotherapy which is to shrink the tumour before surgery.

I had 3 rounds of FEC chemo and then 3 of Docetaxel  with Carboplatin.

I was diagnosed with triple  negative in November last year and finished  my chemo  6 weeks ago.

My hair was very long and I had it cut to shoulder length to make it easier to manage.

I took painkillers an hour before  scalp cooling to numb the pain as the first 15 mins was excruciating  and I was almost in tears. It did get easier after that and I was advised to use chemical free shampoo  and conditioner and only wash it once a week which I found very hard.

I was also  advised  to use a wide tooth comb and to avoid heat drying.

Every time I washed my hair I lost handfuls even with using the cap  and I hated the hairs that I use to have just falling out onto clothing.

The chemo makes hair very fragile and weak so you  are advised to do as little as possible  with it while undergoing it.

I still can't properly colour  my hair at the moment because it is still quite weak post chemo.

I have managed  to retain about 60% of my hair but I lost some around the sides and if I lift the longer  lengths of my hair up at the back the  hair there is only about an inch thick but growing rapidly.

The scalp cooling did add a longer time at the hospital as with all the delays I was often there for 7 to 8 hours.

The  cap went  on half an hour before treatment  and was left  on for 90 mins after.

I did feel odd for a few days after  each treatment with a heavy feeling in my head for days and slightly numb and headachy.  

A headband is a good idea to wear as your forehead gets very cold and also a blanket  or fleecy warmer to stop you feeling cold.

I had my double lumpectomy and axillary  node clearance under one arm 2 weeks ago after having a complete response to my chemotherapy.

I had 3 tumours and the chemo zapped everything.

I am at the hospital tomorrow  for my post surgery biopsy result and then possibly radiotherapy  in 4 weeks, however have been suffering terribly with pain and swelling  from my lumpectomy  and on my second round of antibiotics.

Hope all of this helps and I wish you all the best with your treatment.

In September 2018 I was diagnosed with 2nd stage breast cancer, 2 lumps, Her 2 positive. On 1.10.18 i had left sided mastectomy and reconstruction, sentinel node removal and nipple removed with DCIS.

Nov 15th I started chemo, I remember having 2 co-codamol 1hr before I had the cold cap on. 

At the start of my journey I started a diary, I listed all my appointments, questions, how I was feeling and also when I took meds and what they were for. That way at each appointment I could inform my chemo nurse how I was doing/feeling. It also helped me to log taking meds as sometimes I forgot what and when I'd had meds. 

13.5.19. I had a level 1 lymph node removal for biopsy. The results will determine if I need Radiotherapy or not. The surgeon wanted to do a total auxiliary node clearence, after lots of research I decided it wasn't what was best for me. The possibility of long term/permenant issues with my arm outweighed having all my nodes removed..