Ms

Hi all. I just found out that Cabrini Brighton Hospital in Melb is offering Cold Caps as part of their treatment. 

http://ocv.net.au/sites/default/files/ocv_newsletter_issue_3.pdf

I hope this info is useful to people who are interested in keeping their hair. 

 

Sharon

Hi all. I just found out that Cabrini Brighton Hospital in Melb is offering Cold Caps as part of their treatment. 

http://ocv.net.au/sites/default/files/ocv_newsletter_issue_3.pdf

I hope this info is useful to people who are interested in keeping their hair. 

 

Sharon

Thanks Sharond. I am in southern highlands of NSW, about 1 1/2 hrs south of Sydney. I too emailed the head office re NZ company disappearance and am still awaiting reply from one Fran Collins. Please let me know if you hear anything. I do know about the Mater and hopefully oncology is following that up for me.

Netta

Does anyone have any current information on penguincoldcaps.com.nz? 

There is no reply to emails and the phone numbers on their website are not connected. A search of the NZ directory says they are non-existent.

Does anyone have any helpful clues as to how to hire cold caps in Australia given the NZ company appears to be defunct?

Any help would be much appreciated.

Netta

Hi Bel

 

I know it's too late for you to use Cold Caps, but I thought I would answer in case anyone else read this thread. 

 

I've done 2 of my 4 chemo treatments, using Penguin Cold Caps and I still have my hair. It has thinned a bit, but not enough to require a wig. I wouldn't describe them as painful but they are really COLD for the first 2-3mins, and then it settles down. 

 

I lost my hair from Chemo 10 years ago, and found it quite distressing, so I'm well aware of the trade-off I'm making, and very happy to still have hair through this process, I spite of the organisation required and the discomfort (which is actually pretty tolerable.) 

 

As far as I can tell there are only two Australian hospitals that offer them, The Adelaide Cancer Centre, and the Mater Hospital in Sydney. 

 

I think the reason more hospitals don't offer them is that;

• they require cooling to minus 35 degrees, which either means an expensive medical grade freezer, or dry ice (fiddly and labour intensive)
• someone needs to fit a cap every 20-30mins. This would be easy if they came out of the minus 35 dgree freezer, but can be fiddly when there's dry ice involved. The nurses at the Adelaide Cancer Centre do them, except for 2 patients they told me about who order pizza and fit each others!

• the early cold caps weren't as effective as the new ones, and hospitals aren't always aware of this.

I organised hiring the caps myself from the Penguin Cold Cap distributor in New Zealand. We get dry ice and my lovely husband comes with me each treatment and fits them for me. 

 

I hope this info helps anyone considering using them.

 

Sharon

Hi Bel

 

I lost my hair last time and I can at least let you I know that it WILL grow back. I too remember my friends saying I had a great shaped head. I know their intentions were right, but it did kind of fall flat for me... 

 

By the way, it's not that my Melb hospital is pro active, it's that we were; I've hired them myself, organised the dry ice, and my Husband puts them on for me. 

 

Hang in there!

 

Sharon

Hi Bel

 

I lost my hair last time and I can at least let you I know that it WILL grow back. I too remember my friends saying I had a great shaped head. I know their intentions were right, but it did kind of fall flat for me... 

 

By the way, it's not that my Melb hospital is pro active, it's that we were; I've hired them myself, organised the dry ice, and my Husband puts them on for me. 

 

Hang in there!

 

Sharon

Karen,actually the toe nails falling off were not painful at all. They just died and as the new nail grew it pushed up and then eventually it was loose and just came off in my work sock, with the other one just falling off, of course the toe was a bit tender for a while   :)   Ann

 

 

Thanks Bel,Ann and Magic Mum for your words of wisdom. I have organised a wig and some scarves as I think I will find the wig annoying but handy to have for work.I have adjusted to having no boobs so I am sure I will just have to adjust to no hair. But hopefully my nails dont fall off that sounds painful.

I have been reading all of the chemo handy hints sheet on this site and making notes of what I should start buying. The sooner it starts the sooner it is over. It is so helpful having you lovely ladies to ask information from.

Thanks again

My onc nurses said the cold cap was very painful to wear and not in their experience particularly successful. The cold gloves and the mouthful of ice was hard enough.

I had 6 rounds, and my nails survived but they are now INCREDIBLY brittle. There is a line about 1/4 inch down on the nailbed which is darker and they seem to be just breaking off to that. I am glad the ice stopped them from falling off altogether !

I got used to the no hair quite quickly and it is growing back now - much more slowly than it falls out let me tell you !! I didn't lose eyebrows and lashes but everwhere else. I too felt glad that the drugs were doing the job they are meant to.

magicmum

magicmum