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Cold Cap - did it help keep your hair?

Community Champion

Re: Cold Cap - did it help keep your hair?

Hi Chocolate , It is done at the hospital on the day you have your chemotherapy treatment - you wear the cap for a time before they administer the drugs ,during the treatment and for a little while afterwards . Are you using the forum on a phone /tablet/ laptop ? We may be able to help you find your way around if we know what format you are using .
Member

Re: Cold Cap - did it help keep your hair?

Is this done at hospital or do you wear indoors I’m a bit confused with it all
Member

Re: Cold Cap - did it help keep your hair?

Can someone please help I have posted but can’t find replies or anything
Member

Re: Cold Cap - did it help keep your hair?

I've also used the paxman cold cap. Had chemo 4 last week of fecx 6. Mine has thinned quite a bit and I have a balding bit on top (bit like an old man), but I still have lots of hair! I did lose loads during cycle 2 but It's definitely worth trying and I'm glad I did. I think mine has gone on top because the cap is probably not a great fit and my first session the machine wasn't working and I only realised 15 mins after them putting it on. So they took it all off to check the cap and machine. I then think they rushed putting it back on. At a glance no one would know as fringe, back and sides are all pretty good. I think it has made a huge difference to my confidence and mental state to keep my hair. I also wash it once a week with gentle shampoo and conditioner, I ash it in the shower with a jug using warm water. i have curly hair so the only time I use a comb is when I've washed it, the rest of the time I fluff it with my fingers. The first 5-10 mins are the worst and I take paracetemol 30-60 mins before treatment. Just 🤞🏻That I don't lose too much more.

VJ
Member

Re: Cold Cap - did it help keep your hair?

I had sore and scabby scalp after my first cycle but this was because I didn't wash my hair much compared to before treatment when I washed it 3 times a week. However as months have gone on, my hair has got used to not being washed that often and my scalp has got used to it and is fine. The loss in the shower after each treatment feels dramatic but when hair is dry it's not so noticeable at all.
Member

Re: Cold Cap - did it help keep your hair?

Hi miliemoo,r u using cool water to wash ur hair and shampoo and conditioner are supposed to have no sulphate or parabens,and ur supposed to hold ur hair in sections when combing with a wide tooth comb.no hats on ur head or any covering they don't want any heat on ur scalp. Same thing happens to me In shower I get a big clump everytime I comb it in shower while conditioning.i lost about 20% but I still have a lot of hair.i have one treatment left.what cooling cap are you using?
Member

Re: Cold Cap - did it help keep your hair?

Hi i have one more treatment left, thank God! I use penguin cold cap.its not the from hospital,the hospital one is only 3° and penguin is -32°,so my dermatologist said it works better. I lost 15 to 20% of my hair but i still have it and not really noticeable. I wear the cap 1 hour before 3 hours during treatment and 4 hours after,also I have to change the cap every 25 min,so I have family come with me to help because u can't do it urself. It's not pleasurable at all and it depends how much u really want to keep your hair. Good luck to all of you !
VJ
Member

Re: Cold Cap - did it help keep your hair?

It makes a 3 hour normal treatmentioned (on fect) last 5 hours but frankly worth it, not like I have anything more important to do on the day. Pop a paracetamol or ibroprofen half an hour before. Discomfort lasts about 20 mins then I forgot about it and could watch a film or check phone x
Community Champion

Re: Cold Cap - did it help keep your hair?

Unfortunately you have to wear the gold cap for much longer than 20 mins Smiley Sad
Depending on the drug cocktail you are on you wear it for about half an hour before the infusion starts, then during the infusion which can be an hour or so, and then for a set time afterwards which is specific to the drugs - can be an extra couple of hours. My memory is a bit faded (3 years since I had chemo) but I think I wore it for around 3 hours with FEC and a bit less with taxol.

The first 10-20 mins is the worst but then you get used to it (like getting into a cold swimming pool!). It helps to take some pain relief half an hour or so before.

When do you start treatment? In "going through treatment" you'll find monthly threads, if you join the one which is named after the month you start chemo you will have lots of other ladies to chat to who are going through treatment at the same time as you.

Us old timers are always here if you have any questions.

Sending you big cyber hugs xx
Community Champion

Re: Cold Cap - did it help keep your hair?

Hi chocolate (love the name!) and welcome to the forum, you will find lots of useful info, tips and support on here.

To get alerts when someone comments on a thread you have contributed to go to "my profile" and in settings tick "subscribe to topics I post to". When you post a comment it will appear at the top of the thread. As you are new to the forum the moderators will approve your first posts before publishing them, after that they will appear instantly.
Member

Re: Cold Cap - did it help keep your hair?

Where do I read reply’s to comments I put cant even see them anymore new to this
Member

Re: Cold Cap - did it help keep your hair?

Is that all you wear the cold cap for 20mins and is it really uncomfortable jus found out I need chemo and feel sad at losing my hair
VJ
Member

Re: Cold Cap - did it help keep your hair?

..and have had what seems like huge clumps of hair come out in her shower which made me think "that's it" but once hair dry it doesn't look too noticeable at all, so has been worth perserving.
VJ
Member

Re: Cold Cap - did it help keep your hair?

Thank you. Happy to answer any practical questions on cold caps. I am using paxman at hospital, only wash my hair once a week, leave it 3 days after treatment to wash it, use fingers to come hair, no highlights, hair dryer, straighteners, and use the Aussie brand of shampoo and conditioners. Don't know if any these things have helped or whether it's just good luck. It could still all fall out on my last 2 treatments but it's allowed me to keep my hair for 3 months from start of treatment to date, which has covered my birthday, and psychologically has really helped despite everything else.
Community Champion

Re: Cold Cap - did it help keep your hair?

VJ that's great news - glad the cold cap worked for you !!!
VJ
Member

Re: Cold Cap - did it help keep your hair?

My daughter (7) said it was her worst fear if I turned up to pick her up from school with no hair. Sob. I tried the cold cap upon a friend's recommendation as it worked for her and it has been amazing. It is uncomfortable to wear, to be fair, and unpleasent when on for first 20 mins but doable enough, and 20 mins is worth it compared to results I have done 3 x fec and 1 x t, and finish treatment next month,and have kept about 75% of my hair. I look no different than previous to my treatment and no one can tell that I am going through this unless I choose to tell them. I can do the shopping and school run etc without anyone looking at me twice. It has been a Godsend. Please try and preserve if you are able to.
Member

Re: Cold Cap - did it help keep your hair?

I’m due to start chemo very soon like you This my worse fear for me avd also don’t want my children seeing me bald or with patches is it really uncomfortable or bearable
Member

Re: Cold Cap - did it help keep your hair?

I'd add to this that the taxman cold cap is brilliant. I have a shoulder length curly mop thanks to it. I used my capping time in hospital to ensure 1) I had 2 extra litres of saline runs through my veins (did 6 x fec all through 2 veins on left) 2) check I felt ok to go home 3) ask lots of questions about treatment and plans etc. Chemo day was the only time I ate food made out of the house e.g. subway.
I encourage everyone to at least try the cap through fec. X
Community Champion

Re: Cold Cap - did it help keep your hair?

Hi milliemoo I can totally understand why you are distressed, it is very upsetting as your hair is important to make you look like you. I hope my experience helps to ease your worry:

I was diagnosed in September 2014 and cold capped through 3 x FEC and 11 x weekly taxol. After my first cycle I had a very similar experience to you at around the same time. Handfuls fell out, a big matted lump when I tried to wash it and I was really upset. BUT after that I didn't lose anymore! Yes my hair was thin, but only I knew that, I had no big patches. Some people have naturally thin hair.

I only washed it once a week on chemo day. Lots of people say don't wash it after chemo but I wasn't advised that and had to wash it as it felt so sticky with the conditioner in, and I was sooo cold I needed a bath to warm me up. I patted it to remove excess water and left it to dry naturally. I did tie it up in a loose ponytail as that helped disguise the thin top. I found really soft scrunchie hair bands in Boots, covered with soft fabric which didn't pull my hair.

When I finished chemo I had a good 2 inches of new hair growing all over my head filling in the gaps.

Make sure that the cold cap is really snug. For my first chemo the nurse cooled the cap and then put it on and I don't think it had a really good fit. Subsequently the nurses put it on at room temperature and then cooled it on my head, it seemed to fit much better that way although it is on for an extra 10-20 mins but isn't such a shock as you get used it it cooling down. Make sure you are happy with the fit before the infusion starts.

Hope that helps. Have a look at cancerhaircare.co.uk for lots of tips. Xx
Member

Re: Cold Cap - did it help keep your hair?

Hi Ladies, I'm 35 with shoulder length hair and day18 after First Cycle of EC. I used the cold
Cap, didn't touch my hair for a week afterwards and since then have washed it twice a week, very gently in Aveda shampoo and conditioner, which I thought was natural and gentle. Admittedly I got confident In the last week and have worn it down and styled it like usual with a hair wand, avoiding any heat near the root. I Started shedding in the last couple of days but thought things were going well until I made the mistake of trying to wash it today, and handfuls and handfuls seemed to come out. Got terribly distressed as it seemed like it wasn't going to stop and I got my hands tangled in it. I know it's silly to be distressed because it's the number one thing to get yourself ready for in this process, but I couldn't get it off from my hands, it was caught on every surface in the shower room, and I freaked out. We were staying in a friends house and I was distressed at the idea of leaving hair everywhere and my poor boyfriend cleaned the whole place up while I tried to deal with the matted sections caused by so much coming away and getting caught in what was left. Now my head is itchy and sore.
Not sure what I've been doing so wrong? Now my hair is dry, I don't have any patches missing just the whole thing is very thin. I can't wear if loose because of the shedding, but wearing it up pulls it. Am I better to just cover up and not touch it from here on in? I have another cycle in 2 days and will it continue to fall as it is or slow again then have a dump in a few weeks? As some people have done so many more cycles than me and not lost anyone does this loss so early mean the cold cap just isn't going to work for me?

I feel so pathetic being bothered by this as so many braver women than me embrace the loss, but I'm just not 'there' yet...
Feel grateful this forum exists, thank you in advance fellow warriors xx