The cold cap option

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After looking through there are odd bits on the C/C, apart from the concern of it may not work or be quite uncomfortable, has anyone got any tips on making it more bearable, Sue is prob going to have a paracetomaol before we go on Weds for the first session of 6 FEC/TAX. Hopefully this may take some of the uncomfortableness away also Sue really feels the cold so it will probably be cardy’s blankets and everything else and see how it goes,

The hospital fill you with drinks and wheatbags etc and if it’s a necessary evil to try and keep a bit of hair it seems like it’s going to get a try.

The other concern is we were given the chemo/rads etc option to try and reduce reoccurance by 40%ish-50%ish, due to a high lymph node involvement (60%) do we even take a chance with the cold cap in case it increases the chance of not wiping out the odd stray cells which may be lurking or are we worrying too much and just take the c/c option as we’ve been offered it.

It seems an awful lot of uncomfortableness and extra time etc to save some hair if there may be more side effects further down the line :/.

Any idea’s anyone ?.

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Hi,
I also have high lymph nodes involved, about 11 years l went through bc with a very dear friend, at that time the oncologist was against the cc. purely because he didn’t think it would get everywhere it should!! now l am going through bc, it is the same oncologist, and he still has the same views.
But saying that there lots of oncologist who offer the cc to their ladies, so each oncologist has there own views, and you must go with whatever you feel happy with.
Good Luck
Sandra xxx

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Hi, I used the paxman cold cap, they have a good website. I still lost most of my hair but kept going with it. It adds time to your Chemo day, you need to wear it an our before Chemo goes in and best 2.5 hours after the last dose has gone in. It can be uncomfortable for the first 15 mins or so when your hair is thinner. My oncologist (Churchill Oxford) didn’t have a problem with it but I know opinions are divided on the subject. I used to wear a thick fleece and drink lots of tea to keep warm. Good luck.

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I used cc first Chemo. Didn’t hurt me at all tho cumbersome and prolonged matters. My onc had prescribed anti anxiety drug lorazepam which may have helped perhaps??? My suspicion, medics never said that. I took paracetamol before and warm clothes . My hair still came out quite a lot and not being able to wash it much, use a hairdryer , brush it much all really annoyed me. Plus thd will it won’t it fall out drove me mad too. So I ended up shaving mind znd didn’t use the cc again and Chemo was easier for me without it. To be honest, once I heard that there was even a vague school of thought ghat it could assist a cancer cell to escape thd Chemo , it’s days were numbered anyway. I had last Chemo mid august and waiting for hair to cover scalp. Losing hair hadn’t bothered me too much in thd scheme ofvthings. Good luck.

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I agree with the comments made by xwelcomex above.

I did 4xFEC (couldn’t do the last two of six) this time last year and used the paxman cold cap throughout. I have to say the cold cap is absolutely horrible but it worked for me and was definitely worth it. I am in the minority, though, I know of very few others who it has worked for, but maybe you’ll be another lucky one.

Tips:
make sure the cap is really tight, painfully so, and press it right down on the top of your head - this was where I lost most hair due to the lack of contact.

Wet the hair, particularly on the top of the head with water or conditioner before putting the cap on, this makes the contact better - when you take the cap off it should be frozen.

Wash your hair only once a week, brush only once a day and don’t touch it too much - it falls out most when washed - so don’t! I used a lot of dry shampoo and wore scarves/hats etc. Use a very gentle shampoo - I used an aloe based one. Don’t use any products or a hairdryer. Be prepared to have to throw all products away at the end of treatment - anything I had used during chemo made me nauseous if I smelt it again after - all shampoo, soap etc went in the bin.

Take warm clothes particularly socks into hospital with you, or ask for a warmer like an electric blanket, I got really cold by the end of four hours having my head frozen.

Be prepared for the first 20 mins to be hell- grin and bear it and then your head goes numb and it’s not so bad.

My onc signed me up for the cap automatically - no thought about whether it might reduce efficiency of chemo so he obviously has no doubts.

It’s the epirubicin (nasty red one) of the FEC which causes the hair loss and for me the most loss was on cycle 2, if you make it past that then you should be home and dry.

I really hope it works for you, most people had no idea I was going through chemo unless I told them and most didn’t notice the hair loss even though I thought it was obvious. My hair started growing back after cycle 3 and now is quite long, with a bit of an odd curly mullet effect!!

good luck and hope it goes well.

Helen xx

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Hi I used the cold cap and I agree with what has already been said it is uncomfortable and did give me a pounding headache despite taking paracetamol. That said I would do it again as I had success with it and kept most of my hair. You have to do what is right for you. I don’t believe that oncologists would reccomend its use if they felt it was unsafe. My understanding is that is cools the hair folicles just below the scalp so chemo is reaching all of the areas. I lost my eyebrows and eyelashes just not the hair on my head! I did wash my hair more than I was told to because it made me feel better. Most of the shredding came after my 2nd cycle which seems to be the norm. Good luck with your treatment and I hope the cap works for you.

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Just a quick thanks for the tips and some idea what to expect, Today was prosthesis fitting and wig choosing just in case followed by a trip to the make up counter, it’s all gogogo i don’t know how we had time to work.

Roll on tomorrow, Pills and big fluffy socks for Sue and a book for me all at the ready, roll on the next stage of knocking H*ll out of this disease.