Hi everyone.I was wondering, has any of you used the Cold Cap? And what do you think of it? Any advice is appreciated.

[raza]

[Wendy55]

Hi

I had the cold cap 13 years ago when I had chemo for Breast Cancer. A lot depends on the drugs you are having and my Oncologist laughed when I told him I was going to try it and said I was wasting my time as not a hope it would work with my treatment. Anyway it did work and although a bit of a bind to have it on etc was well worth it for me. They have probably improved somewhat since then so I would definately give it a go even if they advise not to bother!

Nothing ventured nothing gained but just be prepared that it doesn't work for everyone

Wishing you luck

Wendy x

[Hidden]

Hi

I had 18 weeks of weekly taxol using the cold cap. My chemo unit had just got a new machine that circulates the freezing fliud constantly round the cap. Need to have a low ph leave in conditioner ( I used head and shouldewrs as that actuallyt said low ph)on your hair on day of treatment and take a spray bottle of water with you to spray over your hair just before you start the cold cap. When they start it it is very cold for a few minutes but I overcame that by wearing an elasticated head band pulled down to just on my forehead and over my ears which helped a lot. It is very cold for the first couple of minutes ( Like icecream headache) then you acclimatize. Does make you feel sort of inner core cold but the nurses tucked me up with a blanket and heat pad and I was fine. My hair thinned but I still had a good head of it. I am now nearly 4 months post chemo and my hair is pretty well back to normal thickness.

In the past when I lost my hear completely I wore fancey style scarves twisted round my head or hats. Whatever you end up doing, choose what suits you.

Take care Suex

[BusyLizzie]

Hi Raza,

I also used a cooling cap with carbo/taxol and had much the same experience as Sue. I used Dove conditioner and shampoo as they are pH neutral - I was told pH neutral not a low pH. We used to wet my hair at the hospital and then smear on the conditioner thickly prior to applying the hat (the hat made me look like a jockey). Ditto Sue's comments re the discomfort of the cold and the nurses made it bearable with heated wheat sacks and blankets but I kept focused and kept it going for the greater good. My hair thinned but gave me options to wear Sun hats with hair ends showing in Summer, and I had my wig if I needed to be super glam. Now mine is growing back /thickening I wear an Alice band. It is short and curly on top (new growth) and still long at the back.

Mine was with 6 cycles of 3 weekly taxol, not sure I have Sue's determination if I go on weekly taxol in the future.

Remember you can try it, and if you don't like it then you can change your mind. However, you can't do it the other way as one dose without it, and the hair is a gonner. Other advice is to make sure they protect anywhere that touches your skin with triple folded gauze - I found my forehead/temples was an issue if they did not.

I'd say try it at least.

Love Lizzie

X

[GeorgeSuffolk]

Hi

I was told that I couldn't have the cold cap due to the length of time it took for the chemo to go through (4.5 hrs) was told I would get frost bite on my ears etc. I'm starting to think this may have been a lot of nonsense from reading the above answers. My next treatment is due soon and that will take a whole day to go through, so I'm assuming wont be able to have cold cap for that either I would say go for it if they will let you, it's horrible losing your hair.

Love George x

[BusyLizzie in reply to GeorgeSuffolk]

Hi George,

Yes, mine was a full day's treatment, and my oncologist did not think I would tolerate it and it would be for little gain - but my chemo nurses were encouraging and supportive of it's use. If they use folded gauze to protect your skin mine was OK, and even if they missed a bit, there was no skin damage, it was just uncomfortable. We used the paxman cooling system which sounds similar to Sue's - a machine which circulates the freezing fliud constantly round a cap. The old fashioned method was to use ice packs out the freezer. The paxman machine inventor's Mother was subjected to the old method, and that inspired him to do better with the paxman machine.

It is difficult to go against the advice of your chemo nurses as they should have seen first hand the results (the oncologists are not usually that hands on) so if they say no - I would tend to listen to them.

Love Lizzie

X

[raza]

Thank you all for the informations and the advice !I will definitely ask for it, if I need to have chemo again!

best wishes to all.

Raza.

[Frenchdeb]

Just a couple of things to add to the above. Make sure they change it often enough (every 20 mins or so); make sure it's pulled down over the little "side burn" bits in front of your ears; make sure the top seam - if your cap is designed that way - is pressed well down onto your head! It's pretty obvious from the hair that did fall out and the bits I kept, how well the caps fitted me. Half way along, after three Isessions (mine were 5 hours each and I coped fine) I had loads of hair left but the fourth time all the nurses were very busy and it didn't get changed much and lost a lot more!

I stopped using shampoo altogether (don't say yuk) as I was told it was best to avoid the chemicals in shampoos and conditioners. Because my hair's now short, it worked fine. Amazing how much money you save too!

Two months after the last chemo, there are no bald patches and I still have some long bits. The only snag is that the bits I kept are straight and the new bits frizzy. No grey though (I'm 57.)

[BusyLizzie in reply to Frenchdeb]

Hi Frenchdeb,

I think myself and Soapsuds used electric cooling machines. This needs very little intervention from the nurses. They plug you in and the only time after the cap is initially fitted they need to help is if you have to unplug/replug to go to the loo. I got used to doing this myself though. It is called the Paxman cooling system.

I have exactly the same pattern of growth you describe, straight for my old hair and curly wurly for the new growth. All grey here though (I am 45).

Love Lizzie

X

[Frenchdeb]

Clearly it has yet to reach France, Busy! Well, my bit of it anyway. Our onc' department at Le Mans is in one of the olderst buildings which is on the list for an update. You never know, it might get done before the OC comes back (I always think it will some day so I won't be do distressed when it does.)