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Cold cap treatment

17 REPLIES 17
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Re: Cold cap treatment

Hi ladies

 

Thank you so much for all that information. Its encouraging to hear that the cold cap does work. I start chemo on Friday 28th and will be trying the cold cap. I am going to have my hair cut on Wednesday. Not too short just enough to help me manage it and not have mess too much with it.

 

If it doesn't work, I have the hat and scarf at the ready.

 

Hugs to you all xxx

 

 

 

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Re: Cold cap treatment

Hi Nicola,

 

I started on the 20th and used cold cap. They didn't fit me prior and we had a bit of a fiddle because my head -despite my fine hair- is larger than the average so the cap they've put aside for me didn't fit, and we had to change machines. But it wasn't as bad as I thought and with the blanket I managed to get through it, no headaches, and just got cold by the end. Now I am not sure if it will work, I am starting to feel a bit of itchiness on my hair, but as everyone says by week 3  we might know if it's worth doing it or not. Since my infusion time is about 1 hour, I don't mind extending it for 30 mins prior and 1h ish after. I washed it yesterday but pouring water from a plastic soup container instead of the shower head, let it dry naturally and used leave in conditioner.


Good luck with your treatment!

 

Felicidad

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Re: Cold cap treatment

Hi - I have pasted my response to another thread. I know when I was reading up on it all a year ago I coudlnt find much positive feedback on the cold cap.

 

I dip in and out of the forum now and then - a year since my diagnosis in June 2019. After mastectomy in July I had 5 months of chemotherapy that finished in Feb  (3 x EC and 12 x Taxol ).followed by 3 weeks of radiotherapy. So it's been 3 months since my treatment including a hysterectomy to finish it all off.

 

I used the Paxman cold cap throughout the whole chemo treatment and managed to preserve my hair intact with no bald patches. Whilst I shed strands of hair most days, and it thinned a reasonable amount ( in my view say 25% or so), to the untrained eye it was not noticeable. I have short straight hair - not super thick but there was quite a bit of it and I would only colour it 2-3 times a year so it was in quite good condition and strong to start with.

 

So I can confirm that yes cold capping works for some but not all and would suggest if you can grit your teeth and bear with it, it is worth it.  You will find out a few weeks in whether it is working or not and the team will tell you if it is worth persevering.

 

It was very empowering especially as I continued working throughout and whilst I was quite prepared to wear a wig and bought lots of hats I tend to lose heat through my head and can get a bit sweaty from headwear so it was good to avoid head wear for me where possible. 

 

For the first one I was nervous and was nearly not going to do it as I couldn't find many positive stories on the Forum. But I watched Rachel Bland's blog and that gave me the courage to give it a go.  I took Paramol each time (an hour before) - it has paracetamol and codeine it so a bit of an extra kick. I also had reflexology to coincide with the cold cap being put on. That distracted me enough and I chatted to whoever was giving me the foot massage and that got me through that first 10 mins of freezing where you feel it the most.  For the first one I needed to do some concentrating and positive visualisation - imagining jumping into a cold sea or lake and taking slow deep breaths to get through that first strange experience.  


I had heard some people throw the cap off in pain. I would not say it was that excruciating at all - more uncomfortable like an extended ice cream headache. Once your scalp is frozen is like a low slow discomfort that you forget about some days even the key is to try and snooze or do something to distract yourself.

 

The nurses always had a heated blanket and plenty of layers on hand. Sometimes I would need them, sometimes I wouldn't.  I tended not to really eat during the chemo either but would make sure I had eaten an hour or so beforehand and not until I got home.  You may want to think about varying the conditioner the nurse put on for the cold cap so you don't associate the smell with the experience too. You do have to be quite determined too as it does add time to your session.

 

Washing wise - I would wash 2 to 3 times a week and try and natural dry as long as possible. I used a shampoo called Grow Me which you can get on Amazon: https://www.amazon.co.uk/dp/B00Q59B4UK/ref=sspa_dk_detail_1?psc=1&pd_rd_i=B00Q59B4UK&pd_rd_w=gU6aj&p...

 

I found it really good.

 

I also researched good dry shampoos for in between days and whilst expensive found Living Proof (from Space NK) to be best: https://www.spacenk.com/uk/en_GB/haircare/shampoo/dry-shampoo/phd-dry-shampoo-MUK200020501.html

 

You will probably know by week 3 or so if it is working or not as if it is, it won't come out in chunks and should just be strands here and there.  Certainly makes you more house tidy though as there is always hair everywhere !

 

As for my eyelashes - they pretty much left the building by the end. I was using mascara throughout until about week 8 of Taxol and then they gradually fell out.  I defined  my eyes quite heavily as a camouflage (Charlotte Tilbury Rock n Kohl)  and wear glasses so no one  particularly noticed unless looking closely.  My eyebrows  thinned quite a bit but not entirely ) so I pencilled those in.  

 

I finished chemo in Feb and 3 months later my eyelashes and eyebrows were back - as well as everywhere else unfortunately.  I stopped highlighting my hair and it's now turned largely ash grey (all the trend now) and the hair I did lose is growing back and has nearly caught up with the rest.

 

I have rambled a bit here but think I have written something I would have liked to have seen before I started.  Good luck everyone ! Maybe I should hit up Paxman for some sponsorship ha ha ! 

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Re: Cold cap treatment


@nicolaJ wrote:

Hi Susanmanchester

 

Thanks for the reassurance, I have heard so many different stories. Did you have your treatment at the Christie?

Did you have a fitting before hand and did you go with your hair wet? Sorry for all the questions just want to be prepared. Any tips you have would be really appreciated.

Good luck with the rest of your treatment xxx


@Susanmanchester wrote:

Hi it is not painful it is uncomfortable for 10 minutes and after that like having a wet head for a couple of hours . The downside is you are on chemo ward twice as long but upside you do not have to face losing all

ypur hair . Worth a try am on chemo number 7 today and still have most of hair just a bit thinner 


 


Yes am at The Christie they are marvellous ! All the tips here will help you  . My nurses spray the hair and put conditioner in but you can do it yourself . .. good luck x 

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Re: Cold cap treatment

Hi, 

thansk for reply. Yes going to give it a go, I’m struggling emotionally to come to terms with potentially losing my breast and my hair. Going to give it a go and if it doesn’t work I’m going to cut my hair and donate to charity then the loss won’t be as dramatic. 

 

Up intil 2 years ago my hair was almost pixie short and I got bored so have grown it and it’s really long so I know my hair can grow quick but  guess I’m frightened. When do you start your treatment and are you going to give it a go.

 

charlotte xx

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Re: Cold cap treatment

Great

Thanks Jill will give it a go now 

xx

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Community Champion

Re: Cold cap treatment

Hi- just go to the thread and click on "reply " under the most recent post .Good luck with your treatment .Jill x

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Member

Re: Cold cap treatment

Hi Charlotte

Just seen your post on the June monthly thread, think I’m being a bit stupid but I’m trying to join the same thread and I can’t see how you can post on it - how did you do it?

Good luck with your treatment and with the cold cap, all I keep thinking is it’s worth a try. Think it will upset my children as well as me If I lose my hair so anything’s worth a go xx

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Re: Cold cap treatment

Hi, 

 

mine was same  I was diagnosed 3 weeks ago and was supposed to have surgery on Monday 17th for full mastectomy and full node clearance, however this has been cancelled and I’m starting chemo on the 19th, exactly same as you and I’m trying cold cap so I’ll let you know how I go.

 

hope all goes well for you 

 

Charlotte 

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Re: Cold cap treatment

Thanks Blueash, its really helpful to know what to expect with the cold cap. Thanks for the advice xx

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Re: Cold cap treatment

Hi NicolaJ

 

I was diagnosed 26th April. I have had a lumpectomy and nodes removed with good results. My Chemo is 3 x EC 3 x Taxol/Carbo then Radiotherapy.  Hoping to keep my hair with the cold cap but have bought hats and scarfs, just in case. I have been trying to tie the scarfs and they don't look too bad Woman Happy Worried about some of the other side effects.

The information on here has been very helpful and makes it a little easier to have others to talk to. Hope all goes well for you x Heart

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Re: Cold cap treatment

Hi Blueash

 

Thank you so much for taking the time to reply, I will definitely use your tips and hopefully I will be the same as you. This forum is great for getting advice of people who have been through the same things.

Have a good weekend xxxx

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Community Champion

Re: Cold cap treatment

No problem with fitting on the day. You go in with dry hair and go the the ladies with a comb and spray bottle of water to damp your hair. Then comb a large blob of conditioner through and you are all set. You will need an elasticated hair band to protect your forehead and ears.

 

Take a flask of hot tea/coffee with you because they do come around with a trolley but if you have just missed it a hot drink makes it more comfortable. Also have a couple a pain killers about 30 mins before they put it on. It only hurts for a few minutes then your head is numb and you are fine.

 

I had wonderful results with the cold cap - just a bit of thinning and this was my routine:

 

Wash once about a week after chemo with cool water and NOT under a shower. No special shampoo.

Pat dry DO NOT RUB.

Give about 4 squirts of a leave in conditioner.

Comb with a wide tooth comb

THEN LEAVE IT ALONE until the next week and repeat.

 

The more you fiddle with it the more it sheds. Do that routine even after your last chemo and only go "back to normal" as in under a shower, more than one wash, wash out conditioner, hair dryer, straighteners or whatever a good month after your last treatment - but I left it 6 weeks.

 

Also check out fasting before chemo and you will lessen the side effects enormously. Lots of us have done it.

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Re: Cold cap treatment

Hi Susanmanchester

 

Thanks for the reassurance, I have heard so many different stories. Did you have your treatment at the Christie?

Did you have a fitting before hand and did you go with your hair wet? Sorry for all the questions just want to be prepared. Any tips you have would be really appreciated.

Good luck with the rest of your treatment xxx


@Susanmanchester wrote:

Hi it is not painful it is uncomfortable for 10 minutes and after that like having a wet head for a couple of hours . The downside is you are on chemo ward twice as long but upside you do not have to face losing all

ypur hair . Worth a try am on chemo number 7 today and still have most of hair just a bit thinner 


 

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Re: Cold cap treatment

Hi Hope62

 

Good to hear from you, I’m having 3 x EC and 3 x Doxcetal (thinks that how you spell it) so if all goes to plan should finish 9th October!

What treatment are you having?

I got diagnosed early February and have had 2 ops now the chemo then will be radiotherapy and hormone treatment. It’s going to be a long journey but we will all get through this.

take care and good luck xxx

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Member

Re: Cold cap treatment

Hi it is not painful it is uncomfortable for 10 minutes and after that like having a wet head for a couple of hours . The downside is you are on chemo ward twice as long but upside you do not have to face losing all

ypur hair . Worth a try am on chemo number 7 today and still have most of hair just a bit thinner 

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Re: Cold cap treatment

Hi NicolaJ

 

I am due to start my Chemo on the 28th June. I have also opted to try the cold cap. I was told to come a few minutes early for my appointment. Presume that this is the only fitting needed. Hope I can cope with it! 

Good luck for your treatment. Heart

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Member

Cold cap treatment

Hi ladies, I’m due to start chemo on the 26th June and have asked to try the cold cap, I know I could still lose my hair and it’s supposed to be really painful but I’m going to give it a try. Does anyone know if you have to be fitted for the cap before the treatment day? I’ve tried to ring my breast nurse but she’s off sick and there’s no one else to help! 

Thanks in advance x