Recently diagnosed and starting chemo on Wednesday
I would really welcome some practical advice about chemo. I’m due to have carboplatin and paclitaxel and my consulatant has said that although I’m welcome to try the ‘cool cap’ she has only known it ever to work in one person undergoing this sort of chemotherapy. So I’m advised not to bother and to just accept that I will lose my hair. I’m sad about this but accept that there’s no point in going through the pain of the cool cap if it’s definitely not going to work - or very unlikely to. I would really welcome advice from other who have had this treatment. Although I have many many other worries and am getting very little sleep and although this may seem a very minor thing in the scheme of things I need to make a decision and really need informed help! Thanks in advance to anyone who is able to reply.
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Fred22
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Hi, that was the chemo i had first time round in 2014. I have quite thick hair and like you was upset at losing it. I found very painful using the cold cap but I kept most of my hair except for small amount on top of my head where the cap was not a snug fit. You have to dampen your head and use a good quality conditioner as it really does freeze the hair. A lot of the nurses knew little about its use and you need to make sure it's a good fit. Good luck if you decide to use it and hope the chemo works wonders. I was on weekly tax so the dose is lower so not sure if that makes a difference to it working. Best wishes Cathy x
Sorry to hear you are needing chemo and can remember how anxious I was before my first. You will get through it just take one step at a time.
I used the cold cap successfully and although my hair thinned I kept most of it. I would definitely give it a go. Your hair should be wet and conditioner applied
( normally done be the nurse. ) The secret is having the cap fit tightly with no gap on the top and then the neck strap holds it in place. I did have a little bald patch on top after fourth cycle when I don’t think it was fitted properly but as I’m tall no one could see ! Remember to take a hat for travelling home. They normally fit it first so gets to temp while having your pre meds.
My friend used it for her breast cancer treatment and also kept most of her hair. She has naturally thin hair. Mine was very thick to start with.
The first 10-15 minutes were the worst while the cap gets to required temp. If you are ok for the first 15 minutes then you get used to it. I used to watch a film on iPad. It does add time to your treatment but in my opinion was worth it.
I have heard some of the nurses try and put you off because of the extra time needed and sometimes they have limited cold caps so stick to your guns if you want to try it.
Sending love and best wishes for your chemo. Remember to ask away if you have any other questions.
I would highly suggest if you do the cold cap - make sure you test out the size beforehand. My mom had the incorrect size and was in extreme discomfort. She wore it throughout her first treatment and couldn’t take it for the last cool down 90 minutes. She started to loose her hair 3 weeks later. She still wore it for her second treatment and had the correct size and it was a completely different experience. Her hair is not all gone, but maybe 40%. Not sure if it was ineffective because she took it off prematurely or for other reasons. I would give it a try providing you have the correct size.
I had the same regime and the cold cap worked brilliantly for me. I do have very thick, slightly coarse hair though. The first 15 minutes of the first go are a bit excruciating and you may get a headache but you normalise quickly and get used to it. Like the other ladies I just got a bit of thinning on the top but not noticeable. It does add a bit of time to treatment though. It made a big difference to me.
Good luck with your treatment. Take it easy, look after yourself, accept offers of help and I used to get a good friend or one of my children to come along. Take some yummy/healthy snacks and something to read and maybe a playlist on your phone. The nurses will look after you beautifully. I always took a little walk when I got home to make me feel more ‘normal ‘
It’s worked 100 per cent for me! I’ve thinned but have thick hair. Everything else has gone apart from my hair! 4 Chemos in!!! I’ll try and see how to attach a picture. Watch the tutorials on how to fit on the paxman cold cap website as that’s essential you fir it right and listen to you me and the big c pod cast on beauty I think where it helped me understand how to get it on. Do it!!!!!
Definitely go for the Cool Cap! I did, and kept all my hair except a slight thinning at the sides, which even I hadn't noticed until it started growing there again! I found the cap perfectly tolerable and used it with each chemo treatment! Definitely give it a go! Hope this helps!xxxxDawn!🌻🌹🌺😀
I was so sick from the cancer that I did not want any further discomfort during Chemo.
And the Carboplatin/Pacitaxol (Carbo/Taxol) regime is a lengthy one. At least 6 hours and usually longer with all the pre medications and flushes.
I cut my hair short before treatment started, and it began to fall out in the third week. This actually thrilled me, because it meant that the chemo had reached every part of me, all the way to the top of my skull.
All my hair was gone by the end of treatment, but the MacMillan charity here in the UK helped me pick out a wig and fit it for me, and I looked great!
My little avatar picture is my new hair that grew in, totally curly and different from my original hair, but I like it!
There is a lot to learn about tolerating this first line chemo. It can be quite rough, especially the first week. Please keep posting.
We’ve all been through it and have lots of helpful hints.
I’m not bothering and have had my hair cut short. It is thinning but even 7 weeks in not all of it has fallen out yet. Scarves and hats will do for me as the extra time it takes for the therapy before and after just seems too daunting for me. Good luck with your choice
The cold cap works by constricting blood vessels in your head thereby limiting the circulation of chemo. There is the possibility of metastasis to the brain with the current longer survival times plus multiple recurrences of ovarian cancer. For this reason alone I decided against using a cold cap. I wish you well.😊
I used the cold cap and it was mostly successful except for poor fitting. I had very fine hair and it’s grown back silvery blond but not going to colour it. The worst thing about the cold cap is how cold your whole body gets during treatment and the extended time. Take plenty of warm layers/cosy blankets and you’ll get through it. I’d also get a sudden desperate rush to use the loo! Quite a task to manage the journey with drip stands etc. Good luck in whatever you decide. Cheryl x
Hi, I am on weekly Taxol and have been using the cold cap. I have had 12 sessions and although the first 10 minutes or so are really uncomfortable, you soon get used to it, my hair, which had only just grown back from Carbo/Taxol last year, is still on my head! But from the eyebrows down is a different matter! The only downside to the cold cap is the time you’re on the ward is extended, for weekly Taxol you have to keep the cap on for an hour after the treatment has finished. Good luck with whatever you decide, for me I wanted to carry on working and didn’t want to lose my hair again so soon after getting it back.
I found the cold cap absolutely fine. My hair thinned but with a shortish haircut it looked pretty normal and I never felt like a "cancer patient" when I was out and about. The chemo nurses said they had a very good record of avoiding hair loss using the cap, I am a bit shocked by your consultant's negative advice! I agree with the above, the downside is the extra time you need to spend attached to your chair when you just want to go home, but it isn't so awful.
Thank you all so much for your advice and for sharing your experiences. I have just joined this group - I’ve been diagnosed with stage 3 clear cell ovarian cancer and am feeling very scared about everything. I am told that the prognosis with this sort of cancer isn’t great as it’s likely to recur. The hair loss bit seems a bit trivial but I’ve already lost so much self esteem after big operation to remove everything just before Christmas that I wanted to explore the possibility of keeping at least some of my hair. Trouble is I have very fine hair anyway so maybe will need to wear hats or a wig anyway
Hi there, I’m clear cell too, it’s rubbish! I think clear cell is just a bit unpredictable, it doesn’t seem to follow the normal pattern.
I never had a cold cap, my bloods were redone every chemo and it meant my day was very long. However the thing I did wish I had done was get my brows tattooed\bladed - losing them meant I looked really odd! You can’t get it done when on chemo, has to be done before.
Also, get yourself signed up for a look good feel better course if you can, they are fabulous, and give you a real boost. Hair loss/appearance is not trivial, so we need all these little boosts. I got my nails done every chemo also, so at least one part of me looked nice.
Dear Fred . It’s a hard decision but like you ( I’m stage 3, on FEC and Taxol on the third round so far) and using the cold cap which has been at times rather painful st first but subsided 15/20 mins afterwards . My previously very this hair is 40 pc thinner but it looks ok and I feel pleased that I don’t look like a “cancer victim “ though many women do very well and report their hair is even better when it grows back .
I’ve had so many nasty side effects from the FEC , that having still got hair on my head is a bonus !!
I have 13 more weekly treatments following the final FEC and am planning to try to keep up with the cold cap if I can.
Hi I had that chemotherapy first time and tried the cold cap and did loose my hair but for me it was a personal decision I didn't want to regret not trying, bring a wide tooth comb and conditioner to hospital if you are going to do it. I didn't find it too unbearable make sure the cap is fitted tight, bring a warm hat for going home as your hair will be very cold when they take it off. Some people don't loose all their hair and can get through with just thinning. Good Luck
Hi dear. I am busy with my 5th course paclitaxel. If everything goes well I know my hair is coming back. That is not a big deal. Just concentrate on your treatment. I see some patients who are are still busy with their paclitaxel still have their hair.That means the ice cup works. For me it is not comfortable at all. I am beautiful even with out hair. I wish you Good luck.
Hi, I can't advise on the cool cap..but would say if it causes any discomfort at all...I would accept hair loss...I have not long finished my chemo regime which is same as yours by 6 sessions...and to be honest your going to be putting you body through a vital but difficult regime...yep! Hair loss shatters us all...but to be honest..you get to a place where you accept it as part of the course of prolonged life...all the very best wishes for the future.
Hi! I was on the same chemo as you. I used the cold cap and glad I did.
If you can put up with the first 15/20 minutes you will be fine. Take someone with you with plenty of games or cards, anything to distract you. It did thin a bit on top, but not noticeably. Still have my wig on a stand and am so greatful everyday that I didn't need to use it through a hot summer.Best wishes.
Good luck with your first diagnosis and chemo. I haven't been on that regimen, only carboplatin which doesn't affect your hair. When I lost my hair with the first chemo I used hats, and scarves. I rocked the gypsy look! You will find what's right for you. I do recommend cutting your hair first, in a cute little pixie...
I started carboplatin and paclitaxol last August I was told by my consultant and this was reiterated by other medics that saving your hair with this combination is almost impossible I was offered to try the cooling cap but as I suffer from migraines told it would be more painful. I lost my thick hair which I had cut short within 24 hours. However much you know its going its still upsetting. It hurts just before it falls out and i put e45 on instruction to sooth scalp after. I wash scalp in aveeno hair shampoo again as advised. After a short time scalp calms. I have a sateen pillowcase which is soft to sleep on. I use a bamboo cap which is soft. I wear caps and wigs and don't feel dressed unless I go out with my wig on. That was very important for me. Other tip if your fingers or toes st a rt going numb after chemo 4 have acupuncture it stops it getting worse. I was so grateful of this advice. I hope this helps you good luck.
Thank you so much for your advice. I’m still trying to decide what to do. Have appointment for blood tests/consent this afternoon sonwill discuss with them then - again. Have a feeling that my thin and fine hair may fall out whatever but feel I may regret not at least giving cool cap a try.
Hi Fred, sorry to hear your news. I haven't read the other comments so they may say the same as me but I'd like to tell you that I used the cold cap and although my hair thinned a little, I kept all the hair on my head but lost every other hair on my body. I was told I would definitely lose my hair but I didn't.
It's a bit time consuming for the nurses and I think that's why they try to put you off. You have to have it on a while before the chemo and after meaning you'll need the chair an extra hour or so. It's not for everyone because when it's first switched on you may experience a pain for a few minutes but this soon goes. You'll be very cold so have lots of hot drinks and take a blanket to help.
If you have really thick hair it isn't as successful as fine hair because it's harder to reach the roots. Make sure it is on really tight as if it's not touching the scalp it won't work. There are different sized caps. Also, you can't use any treatments on your hair for a few months.
Hope this helps and good luck. I was taking the same concoction as you.
Thank you! I have fine hair so maybe that will be a good thing for once! Can’t afford to lose much tho. When you say I can’t have treatments - what sort of treatments do you mean?? I guess unusually have my hair coloured fairly regularly so that won’t be a good idea. Anything else? I really appreciate your help, and that if all the others who have replied.
No problem. You can't colour your hair or have perms or harsh products. They say not to use a hair dryer but I did on a low heat setting.
You also can't use colour for a while after the chemo stops but your stylist will advise you on that. In the end I didn't bother to have my hair coloured any more and it's saved me a fortune.
Before the cap goes on they put some sort of hair condition on your hair so when the cap comes off you look a mess. They might provide a turban to wear to go home with but as mine was florescent pink I didn't want to draw any more attention to myself so I used my own scarf. The first thing I did when I got home was take a shower and wash my hair. You should only wash it once a week.
If you have long hair it only affects your head.
All the best, Zena xx (and please let me know how you get on or if you have any more questions)
I have left my hair and lost it and then on another recurrence I had the cold cap. I found it great, it’s a bit cold but take a towelling makeup band to cover your ears and top of your forehead and this helps a lot. I didn’t lose any hair and also colour mine with a semi colour... even though not advised to. I had used “cold caps “ back in 2000 and found them very uncomfortable but the new ones are excellent. Everyone has different experiences of these but the nurses were great with fitting and use, only downside it does extend your time in hospital as it has to be worn a little earlier than your treatment starts and I think for 30 minutes after.good luck xx
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