Hiya. I decided not to have the cold cap because I was told by other chemo patients that it had not really done much good in preventing hair loss. I decided to shave all my hair off when it began to come out in handfuls after I had started my chemo. When the chemo was finished it took about 4 months for my hair to grow enough that I could stop wearing hats and scarves. I use a shampoo called 'Child's Farm' that I get from Amazon, which is very good for delicate scalps. Chemo will make your scalp fragile and it is important not to use any highly scented chemicals on it which some shampoos contain. I invested in some satin pillow cases because I found cotton pillow cases were a bit irritating on a bald head. Good luck, Violet, x
I started chemo 3 weeks ago. I'm having paclitaxel accelerated dose so every 2 weeks for 4 doses then having EC every 2 weeks for 4 doses.
I think I've struggled with the hair loss thing alot , not just for me but for my 2 boys and trying to keep my hair looking as normal as I cam for as long as I can was important for me. I did alot of reading about the cold cap and was apprehensive about it being uncomfortable, not really working, adding extra time to treatment, bit I've decided to give it a go.
I took alot of advice from people on here too. I take a couple of paracetamol and hour before it goes on. It need to go on and get down to temperature about 30 mins before chemo starts but you'll be having pre chemo meds IV at the same time. It gets very cold very quickly and I wanted to rip it off the first time. I asked my husband to do some guided imagery with me to try and take my mind of the brain freeze pain - but he was just annoying my so next time he found a guided meditation script to read! I've heard some people do pub quiz type distraction.
The worse bit is the first 10 mins or so then it's actually OK I found. If anything it feels quite nice once you're used to it. Looks horrendous. Once treatment is going you can unplug quickly for the loo if you need to. I drink alot of water through chemo dose and for the first few days after to get it all through my system quickly.
Cold cap needs to stay on 90 minutes after chemo finishes.
On about day 7-10 after first treatment I noticed plucking face hair out didn't hurt it just pulled out. Day 10 I stared to loose pubic hair. Day 14 I had quite a big shed of head hair in the shower. I try and only wash my hair twice a week. Got a silk pillow case to avoid rub.
I'm not sure it will work. I have very thick hair to start with so I might get away with thinning for a bit. If and when it starts to look or feel ridiculous I have reached the conclusion I'll shave it off.
Good to connect. It seems we are on the same treatment although I am having once a week for 12 weeks then radiotherapy afterwards and immunotherapy too in injection form every 3 weeks for nine months and eostrogen blocker for 10 years. So the full works!
Felt the same as you about losing my hair so thought I’d give the cold cap a go. The first week I wondered what all the fuss was about as the cooling effect was quite pleasant after all the hot weather. I did get a mild headache but paracetamol helped.
Second week was horrible. They used a smaller cap because of availability and the pain in my head and face was more than I could bare. I stopped it with 15 minutes to go. After a hot drink I felt a bit better.
So yesterday, week three, decided to try again making sure the correct size was available, which it was.Much better than the previous week. Although the headache and sinus pain was tough I did complete the 3 hours, so was proud of myself.
Today I am not sure I’m going to continue. It’s a very personal balancing act isn’t it. For me I’m not sure the pain is worth it, even though I would like to keep my hair. If I decide to stop I would have a shorter time at the hospital, be able to walk about a bit while having my drip and generally just be more comfortable.
I do have an ‘okay NHS wig’ ready in the drawer and a couple of pretty scarves. Perhaps that’s the way to go for me, but I don’t regret trying. The experience seems so different for everyone so I would encourage everyone who is thinking about it to give it a go.
You can absolutely stop at any point, which I found helpful.
On a different subject, how are you finding the chemo? Any side-effects? I have nausea and fatigue but it isn’t anywhere near as bad as I expected, so far anyway. Just had a lot of problems with my PICC line. But hopefully it’s sorted now.
It does sound as if you are doing really well. It’s not easy is it and this is a club we didn’t want to belong to, but at the same time there are amazing people to meet who are really inspirational and it can be a real growing experience too.
Good to chat. Have a good day whatever you have planned. It’s a quiet day for me with a little walk to the park if I can manage it.
I had the cold cap and although my hair went thinner I still had all of my hair by the end of chemo . The first 15 minutes are painful/uncomfortable. I got brain freeze but I suffer from Raynaud's phenomenon so have poor circulation so I'm guessing that you wouldn't find it too bad. Your head gets cold, very cold, it's -6 so when it comes off you'll probably have ice in your hair.
I'd suggest try it once and you can choose from there. If you are going to have it take some conditioner with you to have combed through plus you will need a headband to cover your ears and forehead. It can be done with gauze but easier to use the band. Lastly take a hat to put on to warm up afterwards.
And finally having the cold cap does extend your time on the unit by 30 to 45 minutes.
Hi, I got to give it a go twice but had to admit defeat after 4 weeks and 2 doses of EC chemo. My hair was just floating off. There's around a 40% chance it works I believe but could thin out your hair a little. The others getting chemo (men too) wanted to know what it felt like as they'd opted out. I got to keep my hair for longer and I don't regret trying it. Interesting to hear about the different cap sizes as my face still had strap marks 4 hours after removing the cap. You won't look glam afterwards as they apply conditioner all over the top of your head and you can't wash it off that night, too fragile. So take headwear with you. And you get to leave once the ice on your scalp melts. I felt pressure (tight cap) at the top of my head, the worst bit for me and the nurses advise it gives you a migraine headache but really more like a band of brain freeze just above the forehead. Drinking hot drinks from a flask throughout the second time definitely helped some and taking a throw to warm the body. I'd describe it as a bath mat material hat that fills with water from a big hose attached to it for freezing. And over that they place the cap with straps. I'm sure one day they'll find a better option. It's definitely worth a try and I don't regret it. Good luck x
I will give it a go and (try to) persevere. I've got long thick hair so maybe hair thinning won't be so bad.
If it doesn't seem to be working I'm prepared to get the clippers out. I've bought a wig off Amazon just in case.
I need a reminder of what my chemo will be as it was a lot to take in when I met the nurse after my CT scan. I think it's one treatment every three weeks for a total of 18 weeks.
I will update once I've started with the cold cap in case it helps anyone else.
Hi there. I just wanted to share my experience of the cold cap so far after my 2nd dose of EC last week. I will be having three EC and 3 Docetaxel in total.
After the first treatment / cap use, I lost barely any hair from my head and knew it was working as my body hair was all gone. A day or two after the second treatment I was losing a lot more into my brush, but I have very long and quite thick hair so I wasn't too worried and just kept brushing it twice day and tying it in a soft band. However on day four I awoke to seriously matted hair through the whole length and to the scalp. I applied loads of conditioner and got in the bath in an attempt to free it but this made it much worse. After two days of trying to free it I've had to cut it very short and the hair loss seems to have slowed down again.
I've always had long hair so didn't want to cut it before treatment but I think this was a mistake as the long hairs that were coming out tangled much easier. The texture of my hair has changed completely as well. It is bleached and I can only describe the texture as like candy floss so it tangles extremely easily. I have still got a covering over my scalp so I still feel more me when I look in the mirror. I just really wish I'd opted for a shorter cut before I started.
I hope this helps and that your treatment is a success. Xx
Thought I would give a brief update on my use of the cold cap. I tried the cold cap for my first chemo session. I did not find it too cold at all, in fact, I even wondered if it was cold enough a few times. I'm in a group on Facebook by the makers of the cooling system (Paxman) and quite a few others had a similar experience to me and managed to keep some if not most of their hair, so this is encouraging.
I had tried on a cap the day before at an info session and they decided on the right size for me.
It's 18 days since the first session and I've noticed some shedding which I expected. There's a bit more hair when I brush, and I'm definitely shedding from other areas!
I'm on 3 x EC and 3 x docetaxel. Also been reading that others experience regrowth when having docetaxel.
Curious to know whether my eyebrows will stick around as I've seen quite a few photos of others on the same regimen and with natural eyebrows. We shall see.
I fell asleep after having the infusion so the wait afterwards didn't seem too bad.
