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Cooling caps?

We get lots of questions about this product on our shop website - I'm interested to hear what you have to say about it, maybe you can help me answer some of them...

Have you used a cooling cap during chemotherapy to prevent hair loss? Would you recommend it? How was the experience for you?

Comments

  • Hi Emilyrose
    i started my AC chemo last week and am attempting the penguin cool cap system. We hired an independent contractor to change the caps and stay with me throughout, so it’s done right. Not sure if it will work for me yet,but thought it was worth a try. It makes the day super long. You have to wear the cool cap for about 8 hours straight. I was not sure if I could handle the cold, but soon after you start your head goes numb and you don’t feel it. I’ll keep you posted on how it’s going.
  • annalondonannalondon Posts: 6
    Hi, I am having 4 cycles of TC and I tried the cold cap. I won’t lie, I found it excruciating to wear, it does pass and you become numb to it but the first 5 minutes for me were pretty on the edge and I did have a moment where I thought, you are kidding me and nearly pulled it off! However my vanity prevailed and I stuck it out. It does add time on to your treatment an additional 30 minutes before you start chemo and another 1.5 hours at the end when you’ve finished. I thought it had worked after my cycle as it was just a few days before my second cycle when I started losing a lot of my hair, I mean a lot. I lost hair around my hairline, probably due to the cap not being fitted correctly, so that plus the pain and additional time on my treatment meant I didn’t bother continuing with it. I won’t lie I had a sense of joy as I pushed it away and said to the nurse I won’t be needing that thanks! My Oncologist said to try it, I do think it works for some people and if you can it’s worth a shot, I was told that I would most likely lose my hair but everyone is different in their reaction to their chemo. A couple of tips if you do try it, make sure it fits and is in total contact with your head, if it’s not it’s likely you will lose hair in that place so spend some time adjusting it.  Take a conditioner (no sulphates, parabens etc) as you have to wet your hair beforehand and my nurse said to bring some, maybe it helps protect your hair from the cold? I used a natural coconut hair mask, which I look forward to using when my hair grows back! Also, your hair will be wet and your head, well the clue is in the name, will be very cold! So especially if you are having treatment in the Winter take a warm hat, beanie with you. One last thing if you have someone with you get them to babble at you and distract you as much as they can for the first few minutes so you can settle into it. Best of luck if you’re trying it!
  • pampam Posts: 2
    I have used the Paxman system twice - 18 months ago when I had cancer - it didn't prevent hair loss but I still had enough hair to feel almost human.  Now I have cancer again and am presently having Taxol 10 weeks in to 12 weeks of treatment and hair still looks mostly OK.  Have another three x 3 more treatments after that so not sure what will happen then.  On the whole I say go for it - it is certainly worth a try and I think it is worth paying for their products to go with the treatment.  Yes first 10-15 minutes not pleasant but soon get used to it.  And yes it makes the day longer - but what else would I be doing!!
  • CymraesCymraes Posts: 1
    I used the cool cap for 18 sessions and it was well worth it. The first 20 minutes are the worse. Take someone with you to distract you. Play games, anything to take your mind off how cold your head is. I did have some thinning on the top of my head, but not enough for me to have to wear my wig. Take something to wear on your head when you leave and venture out in the cold.
  • @Cymraes @Laurenmarieg @pam @annalondon
    These are all such great tips, thank you! I'm going to make sure these are all included in the new Experts Guide to Cooling Caps I'm writing up this week - if there's anything else you think I should include let me know 🙂⌨

    Best of luck to everyone who's still doing their cooling cap sessions, hope it's going well and you're not too chilly!
  • One thing I found really helpful when using the cold cap was having a hot drink to warm your core.


  • MrsMorencyMrsMorency Posts: 2
    Hello ALL  <3 I am new here - although I have been ordering products from this website (shampoo and conditioner) before I even started my chemo and this was around April. I did used the cooling caps - I used Arctic Cold Caps and it worked well for me. I actually believe it helped me a lot to suppressed the chemo side effects as well. All throughout my regimen - I never had nausea or vomiting. I kept all my hair - and last week (Friday) was 12th chemo session and Im done with Taxol :)
  • SueEvaMSueEvaM Posts: 30 ✭✭

    Hi everyone, I had a lumpectomy last week for grade3 Her2 positive cancer and will be starting chemo soon. I am interested in what people are saying about the cold cap and wanted to ask why the first 20 mins are the worse. I must admit I am nervous about all the side effects of chemotherapy and just wanted to ask you all what’s the worst that can happen? I have been told by my med team that I will have chemo, radiotherapy and heceptin. Not sure how long for though.

  • RobertARobertA Posts: 936 ✭✭✭✭✭

    @SueEvaM

    Hi Sue

    I am sorry to hear of your diagnosis.

    I have no experience of chemo or cold caps but I hope that you have found some the comments already in this thread to be useful. I am sure that you will hear from community members who have been through the experience and who will contact you. We are a friendly and supportive group and I hope that you will keep in touch and let us know how you are getting on.

    Rob x

  • SueEvaMSueEvaM Posts: 30 ✭✭

    Thanks Rob, I have read many of the members comments and have come to realise that everyone seems to react differently. It is so confusing to try and make difficult choices not knowing what the outcome will be, even the experts can’t tell me how I will react and which side effects I will have. I thought deciding on the surgery options was difficult enough but that has been the easy part of “the journey”. Thanks to everyone who contributes to this forum as it does help us, who are about to face what you have all already experienced. Keep posting please!

    Sue

  • RobertARobertA Posts: 936 ✭✭✭✭✭
    edited October 2019

    @SueEvaM

    Hi Sue

    I was just thinking about you and the decision you have to make about wig or no wig. I do understand that it must be a very difficult decision, especially for a woman. My niece had chemo treatment at the age of 38 and she chose to let her hair go. She wore a dinky cap and a scarf and looked great. She was blond originally but when her hair grew back it was actually quite dark.

    A lady I used to work with chose a wig. Not knowing she had undergone chemo and was wearing a wig, I complimented her on her hair. Luckily, she laughed and we now get together for a cuppa and a chat about once a month.

    Ironically, a male friend undergoing chemo did use the cold cap. He found it quite tough and got headaches but he persisted and he kept most of his hair.

    Have you seen @KarinSieger s thread in ‘Coping With Cancer and its Side Effects’ entitled ‘Why Chemo Hair Loss is About More Than Wig or No Wig.’ If not, it is worth looking at.

    Rob x

  • SueEvaMSueEvaM Posts: 30 ✭✭

    Thanks Rob, I will definitely have a look at the thread. To be honest I am thinking of just going with the hair loss and getting a wig. I know the chemo will be difficult enough without having to cope with headaches from a cold cap which may or may not even work!

  • LouiseJLouiseJ Posts: 459 mod

    @SueEvaM @RobertA

    Hi Sue,

    Welcome to the community, I am very sorry to hear of your diagnosis I am sure you are still probably trying to come to terms and adjust to everything going on. It can seem like everything moves at breakneck speed with all the appointments etc that are required, or interminably slow, waiting for said appointments to be arranged! Put simply...a living nightmare!

    I hope you have had a timely swift response when you have needed it, and hope you are recovering well from the lumpectomy.

    I didn't use a cold cap when I had chemo, (my sister tried it in her first chemo 3 weeks ago, but has decided against trying it again. I did post her experience on another chat, I will tag you in it, so you can read it you like). I decided upon using hats and scarves for when I lost my hair, two weeks after starting chemo. It is a personal thing, whether or not you think you will feel comfortable wearing a wig, comparing it to the other factors in play such as your self-esteem, and feeling more like you rather than having baldness stare at you each day. I found my hats and scarves would come off regularly as I would go from two extremes of either being too hot or too cold a lot of the time..lol.

    There are so many variables with chemo, and because the treatment is tailored individually to give the best chance of success, detailing 'the worst' is not necessarily easy or simple. You are right in everyone does react differently, there are some general similarities that may occur, but even these are not exact.

    Probably the two things you might have in your mind the most are losing your hair, and being sick. Being sick was my worst fear, as I don't do vomit (which is what I said to the nurse). Bur she assured me there were some really effective drugs available these days to reduce that happening. She was right, because I wasn't sick once. Sometimes I felt nauseous, but I would take one of the 'as and when' anti sickness meds, and it would pass.

    Losing my hair was upsetting at first, I loved my hair. I did get used to not having hair once it was off, and even now after I have finished treatment I keep my hair very short as I now prefer it, suits me going swimming often.

    There may also be different side effects depending on the particular cocktail of chemo you will be having. All of this will be explained to you in great detail (make sure you take someone with you to your pre-chemo assessment, who can remember and take notes for you if necessary).

    I think once you have a date and then start it will not feel so overwhelming, strangely, it is the waiting that is the hardest, having lots of 'unknowns' flying around.

    Chemo is often administered through the veins, so the nurse will check your veins to see if they are strong enough to withstand it. Mine weren't and I had to have a picc line put in.

    I don't know if any of this is any help to you, let me know if you want to know more, or if I can help you in any way. There are many here who have been diagnosed with breast cancer, some through it, like myself, others still having treatment of varying kinds. You are not alone, you will find loads of support, encouragement and friendship here from everyone.

    Hope to chat with you soon,

    Lou xx

  • SueEvaMSueEvaM Posts: 30 ✭✭

    Thanks Lou, your advice is very helpful, I too am worried about sickness as I have never had a strong stomach and interestingly I had trouble when the anaesthetist tried to put in a cannula for my surgery so I will probably need a picc line or similar. I am keen to try and stay as well as I can and would appreciate any advice on eating during chemo, what did you find easy to eat and drink? In a strange way I am looking forward to next week’s appointment when I will know what the next stage will be.

    Thanks again for your reply

    Sue

  • LouiseJLouiseJ Posts: 459 mod

    @SueEvaM

    Hi Sue,

    Yes I can imagine you must be feeling very worried about that. Make sure you mention this to the chemo nurses at every opportunity, so they can ensure you have adequate and effective meds to help you. It is also not unusual to feel the way you do either about wanting to get on and find out what the timeline and treatment will be.

    Regarding food and drink, it may be a case of trial and error in order to see what changes etc. I found it hard to find a drink I could tolerate, (no alcohol though! hahaha). I love coffee, and each morning I would make it, but as soon as I tasted it, it would be like the most disgusting thing ever! It was the same with tea, fruit juice, etc.

    On my chemo days, I managed toast and marmite, even a little scrambled egg on toast. But then I think on day 3 I managed roast chicken! lol! You may find you want to eat more, this could be due to the steroids, or you might not be able to eat much at all. Go with the flow, but it is really important to try and keep up your fluids.

    I thought I would lose weight on chemo, but I didn't, I put weight on!

    Some have suggested ice lollies helped them, also freezing some pineapple and then having that.

    I have posted a couple of links to some articles on here about chemo, eating and nutrition that you might find helpful.



    Chat soon,

    Lou xx

  • SueEvaMSueEvaM Posts: 30 ✭✭

    Thanks Lou x

  • KarinSiegerKarinSieger Posts: 83 Emotional Wellbeing Advisor

    @SueEvaM @RobertA

    Hi Sue,

    Thanks for the mention Robert!

    All great advice here re coping with chemo hair loss, what to eat etc. And as most people say, in the end it really depends on how each of us respond to the chemo, which is unpredictable at the outset. As I explain in may article I opted to have my hair cut / shaven off, because then there was one less thing to worry about and to organise. It all grew back ok.

    On top of the advice you have already received, Sue, you might like to know about my podcast series Cancer and You. Each episode is about 20 mins and a relaxed and down-to-earth chat. Specifically the episodes

    How to cope with chemotherapy, which sums up some of my own experiences and learnings

    Coping with a cancer diagnosis

    Advice for newly diagnosed, which is a selection of conversations with people who have been there

    You and everybody here, is always welcome to post a question in my "Ask the Expert" section, specifically on how to cope with the emotional impact of cancer, talking about with others, relationships and more.

    For now, with my very best wishes for you.

    Karin

    Karin Sieger
    Psychotherapist | Writer | Podcaster | MA, BA (Hons) | Reg. MBACP (Accred)
    Helping you create new possibilities!
  • SueEvaMSueEvaM Posts: 30 ✭✭

    Thanks Karin for the pointers and advice. I am so glad I found this forum. Thanks to everyone who has offered their words of wisdom and encouragement,

    Sue

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