Cold Capping for TC Chemotherapy

[ikikuru]

Hi,

My wife may soon be starting a course of Chemotherapy. Has anyone had experience with cold capping? She was looking at the full and not cheap kit for her head, but I was looking at the gloves and socks on amazon. Keen to here if anyone has experience of any of this? I’ve heard the gloves and socks can help quite a bit!

[mena52]

Hi there I did use the cold cap for 2 1/2 of my chemotherapy sessions. I did start to lose some hair with the 1st & 2nd chemotherapy but very little. On the 3rd session I couldn't bear it anymore. The cap on my head was very heavy & they actually freeze it whilst you are having treatment. It does make your session a little bit longer. Each time I had it I got headaches and on the 3rd occasion I felt faint & dizzy with it and couldn't take anymore so it was stopped & the cap taken off me whilst I then lay flat until my blood pressure returned to normal & I felt ok. The headache & dizziness had occurred because my blood pressure became extremely low and the machine was beeping to alert the nurse, so I decided not to use it again as I had several chemotherapy sessions still to go. I did not know about the gloves & socks beforehand, maybe they will help. I also don't know anyone else who used the cap. It did cause a headache in the first two sessions but the 3rd time it was worse than I had ever experienced. Your hair is sprayed with a condition to dampen it & protect the hair before the cap is placed on your head. Good luck to your wife, I would say if she wants to try it then do so because you can't start to use it if you don't have it for your first chemotherapy, so if you don't have the cap on the first one, you won't get a chance to use it next time x

[Happyrosie]

I didn’t have the cold cap myself: and the reason is that I talked to others that had used it. The general concensus was that it was painful, and didn’t make that much of a difference to hair loss anyway.

I lost all my hair, starting on day twelve of the second chemo session, and used a wig for eight months.

One of my friends had a glorious long mane of hair and used the cold cap. She went into isolation during chemo, and when I next saw her - about six weeks after the chemo had finished - most but not all of her hair had disappeared. Glad to say it was back to its previous Beauty within a couple of years.

Hope this helps

[ikikuru]

Thank you both for your replies, it does sound like a pretty extreme measure with less than guaranteed results, kind of like most things cancer related it seems! Jeeez, I hope one day this will not all be so tough!

[Lucifair]

Hi I used cold capping for all 6 cycles of my chemo for BC. It isn’t a pleasant experience but it’s doable and you get used to it . It does extend your duration of treatment as you have to wear it 30mins before they can start and 30-60 mins after depending on what drug you are having. The fit of the hat is so important, they need to be quite brutal putting it on so that it fits tightly all over your head. I don’t have any experience of the gloves or socks but I didn’t have any problems with my nails.

I lost some hair but it was manageable and if you didn’t know I was having treatment you wouldn’t have noticed,, my mother never did and I saw her nearly every week. I never had to wear a wig. For me it was worth the discomfort. You think in the great scheme of things losing your hair doesn’t matter but it so does. My hair basically looked back to normal in 6 months, it would have taken a lot longer if I had lost it all.

Buy a silk pillowcase as that causes less friction against your hair when your sleeping.

Good luck to your wife, I hope her treatment goes smoothly.

[Treacs21]

Hi Iam using the cold cap at the moment the first session I found okay didn't have dizzyness or headache and didn't feel that cold my hair started to come out in a few strands, but then day 19 ,90% fell out in my hands I was devastated, this happened day before my next chemo, a friend of a friend was going thru same as me and she said it happened to her although she has thick hair so she was left with quite a bit but the crown totally bald she says it happened cos the cap not fitted properly there must be no gaps between the scalp and cap otherwise it doesn't work, my 2nd chemo I told the nurses, this time I had a male nurse I told him what happened, he said he would use a medium cap although I have a tiny head, then the outer cap small and then they pull it all in as tight as possible this time it really felt cold, I dizzy, felt sick, I knew it was fitted properly, I managed to keep 10% of my hair (my hair is fine naturally so if u have thick hair u have more chance of keeping it or most of it, after 3rd chemo of cold cap still had the remaining 10% I've now changed drugs for my next 3 chemo this one is known for hair loss, but before my 4th chemo my hair had started to grow, I had 5th chemo and its still growing my head is completely covered now with fine hair looks like a grade 2 allover, but I was virtually bald, I'm now on 6th chemo next week last one I'm still having the cold cap, I read the cold cap can help hair to grow back quicker after chemo, the male nurse said it was true, well I've stuck at it and mine started to grow in between 3rd and 4th, I think your wife should give it ago just make sure she can feel good contact on the crown of her head and the cap, since having 3rd,4th,5th,cold cap I haven't felt dizzy or sick, just really cold head which numbs after 15mins, also use your own conditioner I use tropics no chemicals in it and take a soft headband to wear around forehead this helps with headache , the cold cap doesn't work for everyone unless u try u don't know, it didnt and it did work work for me

I wish your wife all the best

[ikikuru in reply to Treacs21]

Thanks so much for replying. I'm sorry to hear that it did not work so well for you. Can I just if your ask if your chemo was TC?my wife read that it worked better with some chemo drugs than others. Not sure how true that is though! Hope the hair grows back super quick!

[Treacs21 in reply to ikikuru]

Hi I don't mind you asking at all I had what they call FEC-T for treating breast cancer the Fec is a combination of 3 given one after the other each chemo session its the E (epirubicin) that makes the hair fall out and the T is docetaxel which I'm having 3 sessions of now one left next week that makes hair fall out, but as I said I carried on with the cold cap and my hair started to grow back after last Fec session and I'm now on my 3rd docetaxel next week and it hasn't fallen out again it still growing so I defiantly think cold cap has helped, I know someone that had chemo for bowel and there hair didn't fall out that was a different drug, the drugs for breast cancer are renound for hair loss, the chemo your wife going to have TC I'm not sure what the drug names are, hope I've managed to help you a bit

[jackearls1000]

Hello ...I had chemo three years ago and used the cold cap ....it was ok, I took two paracetamol just before putting the cap on, lots of water on your hair and I wore warm clothes and had a heat pad for my arm putting the drugs in , as your very cold ...A nice hot drink during helps too ...and a menthol headache rub is useful in case ...but I didn't need it .. I used a silk cap on my head at night time ...and only washed my hair with simple shampoo and conditioner just before each treatment and only brushed my hair once a day ....the result was I saved 25% of my hair, i feel as i had very thick long hair my hair didn't get wet enough before fitting the cap i didn't save so much ...However it was enough to have weaves after all my treatment and was able to ditch the wig ...and wash and the weaves as normal hair ...whilst my hair grew ...I also used Bigen hair colour after which is a Chinese natural hair dye ...( black) so great I use it all the time and after three years my hair is now back to normal ...good luck here if you have any more questions x

[ikikuru]

Thanks everyone for the advice and help!! Really appreciated

[Oak1]

I used it throughout my treatment as it was important to me to keep my hair and a little normality. I lost about 50% of my hair but got away with wearing a wide hairband or hat without need of a wig. I took a long padded coat to wear to treatment, a blanket and a microwave wheat bag. The first 5-10 minutes gives you a brain freeze headache but after that it’s ok. I found disposable hand warmers helpful to press on your temples to counteract the cold. All the best to you both

[scarlet12]

I'd say go for it and at least try for one session. I was terrified I wouldn't be able to cope with it and got myself very worked up reading the experiences of people who said it made them sick and gave them headaches. Thing is we all can react differently. I had 8 low dose sessions of chemo (4 epirubicin and cylcophosphamide and 4 of paclitaxel). Kept most of my hair throughout and lost a fair bit after the very last one! At that point I could have just had it cut short but I decided to wear a long wig while it was growing back to its former length underneath. Keeping my own hair really did help me to maintain a sense of normality going through treatment that I could go to each session still looking like me and not wearing a wig. My GP prescribed me a low dose of lorazapam (1 gram) to use on the morning of each session, it did calm my nerves and I only used it for those sessions and never since. I also took an ibuprofen about an hour before. I am really glad I did it and where my hair did thin it's grown back better than before. There's a really helpful support group on facebook too called the Chemo Cold Cappers Support Group. My hospital used the Paxman cold caps, I used a medium inner and small outer and tied a pair of tights around my head to keep the top flat. The chemo nurses should know all about fitting the cap and if you are worried email or phone Paxman - they are really helpful.

[Donnanh]

Hi I used the cold cap when I had my chemo back in 2017. I was lucky as managed to keep about half of my hair, which actually helped me a lot mentally so I would say at least try it if she can.

It was really really uncomfortable, I joked with my boss that they should consider using it as a torture technique, having a heavy helmet freezing your head is not nice! And the added time to the chemo session was hard work.

Make sure she takes some painkillers beforehand and have warm clothes and a cup of hot tea.

They say only wash your hair in cool water but there was no way I was washing my hair in cool water in December! I used a mild shampoo and washed my hair gently

in warm water. Chunks of hair did come out and I felt about discouraged but I ended up keeping about 50% of my hair.

All the best to you and your wife.

Donna

[Bookworm5]

I used the cold cap. I had 8 rounds of chemo 4 docetaxel, herceptin and ptermuzupab and 4 ec. I did lose about half my hair by the end but it came out slowly not in handfuls and it meant that for most of my chemo I could just wear wide headbands for the bald spot on top.

I think it's worth giving it a go. The first 15 minutes are the worse take someone or something to distract her for that then just make sure she has warm clothes and blankets and I found cup a soups were good. Good luck