Paxman Cooling

Hi Suewithoutaclue

I had chemotherapy for endometrial cancer in 2022 and I scalp cooled throughout. For me it was worth it and was successful. 

My hair did shed with each cycle and paxman will not stop that but I had no bald patches and was able to avoid wearing a wig/scarves. My hair thinned all over on my head. I lost all body hair. I had regrowth during chemo and shortly after chemo my new hair was growing in fast. I do believe that it protected my hair follicles and my hair actually looks better now than before cancer. 

My reasons for doing it was I did not want to lose my hair if I could avoid it and I wanted to avoid looking ill. I also wanted to protect against any chance of permanent hair loss. If I had lost more hair during the chemo , I would still have persevered with it. 

It is very much a personal choice but for me it was a case of giving it a go- I had nothing to lose other than potentially hair. 

I have heard people say that there are a couple of downsides to scalp cooling.

The discomfort- I did find it painful for the first 20 minutes or so but it was bearable and I was advised to take paracetamol before hand. Once your scalp gets used to it, it becomes sort of numb and the feeling is more of pressure. For me short term discomfort was worth it if I could keep my hair. I did have to do some deep breathing when it was first put on but chatting with the nurses helped distract me. If you have it on and don't like the sensation then they can immediately turn it off and take the cap off. For me knowing that, it was worth trying.

The extra time- to me it did not make much difference. I was in all day anyway. It had to go on for 30 mins before the chemo infusion started but during this time I was waiting for blood tests to come back and the nurses were getting the canula etc ready and checking how I was.

It was the same at the end of the day really- it did stay on for a bit after the last chemo drug but during this time I was with the nurses, going through my journal, talking about side effects and which meds to take and when. It was also time to have a more social chat and cuppa after being there all day. I think it probably adds about 30-45 mins to the end of the day but I look at it that I was there anyway so just had a bit of time to sort things and get ready to go. It was during this time that I was able to chat more freely with other people who were have chemo and that did help. If I had been rushing out of the door, I wouldn't have had that time.

For me it was worth it and if I had chemo again then I would use it without a doubt.

Hope this helps, if there is anything you want to ask please do so. Hair is more about looks, it is part of our identity and to me that was important.

Jane

Thanks so much for this. Think you’ve given me some really good information and maybe the kick up the backside I need. I was feeling a bit despondent about it all but now feel I should at least have a go with it. I had heard that the re growth after is better when using the cap so that’s another good reason to persevere. 
Wishing you all the best x

For me it came down to

1) I wanted to keep my hair

2) I wanted to protect against permanent hair loss

3) I wanted to protect my hair follicles and encourage regrowth

4) The short amount of discomfort/pain was worse for about 20 m and manageable with paracetamol/distraction

5) It only involved around 30-45m extra a day and I would be doing things during this time anyway.

6) It was worth a try and I knew it could be turned off immediately if I couldn't cope.

7) It made me feel I could cope with the thought of chemo better.

The website has some useful information

Paxman Scalp Cooling | Changing the Face of Cancer

Jane

I had my first round of 12 paclitaxel today. I used the cold cap but it was much more painful than I’d imagined it to be. However, I kept it on for the duration and intend to keep going with it. I think I had the chin strap on too tight and so I was getting jaw pain. Totally my fault but I was determined ed to get a snug fit on top. Also it didn’t help that I’d forgotten Jane’s advice about the paracetamol 

I second what Jane says about the paxman site having good advice and I’ll add that the Cancer haircare site is really helpful too. 

widhing you the best of luck, let us know how you get on x

Hi Ronnie

Get them to adjust the strap next time- I found even moving it slightly could make a big difference. Also you can put something soft under the strap- I used a folded thin towelling hair band- like the ones you use to keep your hair back when you are putting on make up. The strap and cap needs to be tight to keep the contact but you should be able to open and close your mouth. Paracetamol can make a huge difference- take it 30 mins before and tell the nurses. 

Keep at it- it's worth it. Just focus on the hair that remains rather than the hair that sheds. The first one for me was the worst. The following cycles I had a theatre cap on which added an extra barrier. I must admit I did get a bit panicky for the first 30 mins but then the pain would be tolerable and a sort of numbness sets in. I sometimes did feel a bit headachy when I got home after chemo but I am not sure whether it was due to the pressure of the cap or just the chemo meds and stress of it all. 

I hope your next session goes well. Let us know how you get on.

Jane

This is so helpful, thank you.

Hi I am on no2 of my chemo next week and have used the cold cap - as the other reply commented I am giving it a go to try and hold onto my hair. My tips are have a couple of paracetamol 30 mins before you start to help with the headache and try and persevere through the first 15/20 minutes as these are the hardest but then it does settle. Get yourself a wide fabric headband to wear and take a comfy hat for afterwards. The cap needs to fit well there are a couple of videos that the daughter of the Paxman cooling cap inventor has done on line and are worth a watch. Hope this helps.

I had my 1st cycle of EC today and decided to try using the cold cap. I didn’t know about taking paracetamol before so I can’t comment on how well that helps. I agree with a wide headband and unless your hospital provide it you will need to take conditioner. I ended up by going up a cap size as my nurse wasn’t happy with the closeness of the fit. I Found the tightness of the chin strap made me feel sick o when I mentioned it it was loosened to the point where it was not touching me. The extra time was a real drag. An extra 2 hours for a treatment that took less than 40 minutes. Since coming home I’ve had a persistent low level headache that 1lot of paracetamol didn’t touch. Hopefully I can sleep it off. Good luck with whatever you decide