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start chemo in 3 days giving cold cap a go any hints and tips

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Re: start chemo in 3 days giving cold cap a go any hints and tips


@LondonKiwi wrote:

Hi - 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.

 

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 did preserve my hair 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 if and when it doesn't work.

 

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 and 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 (yet) 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 ! 

 

Sam


Hi exactly same regime and it is working for me too . Chemo 8 today . 

I use organic rosemary shampoo wash hair only once a week use dry shampoo in between . Use wide comb . Have cap as tight as you can bear it . Take paracetamol before good luck x p

 

Member

Re: start chemo in 3 days giving cold cap a go any hints and tips

Hi - 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.

 

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 did preserve my hair 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 if and when it doesn't work.

 

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 and 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 (yet) 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 ! 

 

Sam

Member

Re: start chemo in 3 days giving cold cap a go any hints and tips

Hi Charlotte/sarah

How was your first sessions today? Mines next weds and just wondering what to expect.

how was the cold cap? Please tell me it wasn’t as bad as you were expecting!! 

Hope you are both ok

Nic xx

Member

Re: start chemo in 3 days giving cold cap a go any hints and tips

Hi Charlotte 

i start my chemo tomorrow,19th too.  I had my hair cut short last week.  Trying the cold cap too. More nervous about that than the treatment I think. 

 

Good luck tomorrow. 

Sarahx

Community Champion

Re: start chemo in 3 days giving cold cap a go any hints and tips

Did you see where I posted my routine? It was a few days ago to someone else that was asking.

 

I had my hair cut and layered before so there was nothing to twirl with my fingers! You must leave it alone because the roots are extremely fragile and it will shed if you fiddle with it. 

Member

start chemo in 3 days giving cold cap a go any hints and tips

Hi all,

 

after some advice really. Starting chemo on Wednesday (19th) and looking for some hints and tips on my hair and cold cap.

 

read a few threads and gathered amazing advice but I’m wondering how’s the best way to wear my hair daily to prevent the hair loss. 

 

Im giving cold cap a go and I’ve made a list of things to take and do to limit the hair loss but I’m a habitual hair messer 😝. I’m always redoing and playing with my hair so looking for ideas on how to wear my hair to prevent the constant touching, would a braid be too harsh on my head and hair or would that be good.

 

thanks in advance 

Charlotte