Cooling cap

Mazbeth

Thanks @FLClover - I just saw the message. 😁

Ausmum2

@Mazbeth and other beautiful ladies. My portacath goes in this week (I am post double mastectomy triple negative grade 3 0nodes staged 2B), clear PET and I’m about to start AC x4 cycles followed by paclitaxel x 12 cycles them radio (2 tumours combined size 70mmx50mm). 

I’d appreciate information on cold capping as it’s been offered and I’ve accepted in an attempt to hold onto my hair. 

Abbydog

Dear Ausmum2,
Definitely give it a try.
I put a post on this discussion October 2020, on the first page.
If you would like photos send me a private message.
I'm one year on now from similar treatment. 
It wasn't horrific for me ie the chemo.
And now my life is almost normal, and I look my old self.
Although I will probably have reconstructive surgery.

Mazbeth

Hi @Ausmum2 I hope you are doing ok.I also had a double mastectomy as I had ILC in my left breast. I did the same chemo as you - I started in January 2020 and finished in the middle of May. It is almost a year ago!
I would definitely give the cold cap a try. It didn’t work for me and it may have been to do with the cap not fitting properly. I had a fabulous wig ready to use - my plan B. My hair has grown back pretty quickly and no one would know what 2020 was like for me if they didn’t know me.
There is a lot of information on here about cold capping, but here are a couple of things to do so you are prepared:
* Read about the machine and the cap. I think the ‘Paxman’ seems to be the one the hospitals use. It really helps if you understand how the cap needs to fit as there are different sizes. You want it snug all over your head - no air pockets.
* I would wet my hair before I got to the treatment and then the lovely nurses would put conditioner through it before putting the cap on.
* You have to be extremely gentle with your hair - only wash it once a week and be gentle with the brushing.
* I also took a Panadol before I arrived to help with the cold on my head.
* I was given a towelling headband to put over my ears and you may need something for your forehead to protect it from the cold.
I had expanders placed at the time of my mastectomy and have since switched to implants. I am now booked for nipple tattooing and I am well and truly back at work. I just want to let you know that you will get there too. Chemo is such an individual thing and as has been said, it’s grotty but doable. @Abbydog  - great to hear you are doing well! 
I am happy to help with any more information. Take care Mx
PS Check out the information on doing the cold therapy for your hands and feet when you have taxol

Ausmum2

Thanks @Abbydog and @Mazbeth I really appreciate the posts and encouragement and to know it’s “doable”. My head has been pretty good so far... until this morning. When I’ve discovered I’m feeling really frightened/anxious about what lays ahead. You know “the unknown” of it and the “how terrible will it be” part. I do know myself well enough to know that it’s always worse in my head, but it’s really dawning on me today the seriousness of where I’ve found myself (and suddenly as we all do). 

I really appreciate hearing that you’ve been through. It gives me comfort (and hope). I’m terrified of the triple negative aspect (that combined with losing my Dad to pancreatic cancer 18 months ago is sending me to DNA testing, as Dad was adopted so no known family history traceable). 

I have already been told the clinic my treatment will be done at is Paxman clinic, I have the chemical free shampoo and conditioner ready (and dry shampoo) - benefit of a hairdresser daughter (who has also given me a sassy twiggy cut, so that we can get good skin to cold cap contact as I have very thick hair and so it looks good even when filthy!) and I have my silk pillowslips too. 

Great tips you’ve given me (and I’ll find myself a toweling sweatband). 

I’d love to know more about the hands and feet part please! 

Mazbeth

Hi @Ausmum2 we are all here to help and between us we have some pretty good tips. This forum has helped me enormously. I will mention @Gavroche because she has put up some excellent tips for using ice on your hands and feet. If you search up ‘Ice therapy success - no peripheral neuropathy’, you should see the discussion. There are some great pictures as well. I totally recommend giving it a go. 
You will definitely have times where it can be overwhelming, I know I did. Allow yourself to feel all of those feelings, but remember there is help available too. Focus on now and don’t let your mind race ahead - I know that is easy to say, but something that really helped me was to say, ‘At this moment’. It kept my focus on what was happening now, rather than worrying about too far ahead. You absolutely will get through this. 
It’s great your daughter is a hairdresser, she will be able to give advice and I love the idea of a sassy cut! 
I had a port too and it was brilliant - it makes the treatment easier. It is only natural that you will be feeling anxious about the first treatment, but once you have done it, you will settle in to the routine. You will know when you feel the most tired and you will know when you feel more like doing things. One thing I really think helped me was knowing that the doctors and nurses really want you to be as well as possible, they don’t want you feeling unwell. They will be doing everything they can to support you. Let me know if I can help with anything. Take care, Mx

Ausmum2

@Mazbeth can you describe the towelling headband more. Is it a Velcro keep your hair of your face type one or a sweatband/sports kind of one? 

Mazbeth

@Ausmum2 it was a towelling sport type one - the chicks in Pink actually included it as part of a pack - it had their logo on it. They did up a pack for people who were using the cap. However, I think you could use anything that is comfortable as it is just to protect your ears and forehead from the cold. You will also need a wide tooth comb - I used the one that you use on wet hair to put a treatment in.  

kazb

@Ausmum2 , I used an ordinary material headband during my treatment, it is to protect the skin around your hairline and ears from the icy cold,good luck with your treatment

Ausmum2

Thank you @kazb I’ve ordered a narrow one that’s a bit wider over the top of the ears (like the ones you see in beauticians, only narrower, online. I’ll make sure it’s on skin only, so maximum contact with hair follicles for cold cap. I’ve also ordered a set angle brush and Comb too. And the lovely @Abbydog has reminded me to take photos! 

Thank you lovely ladies for all the help. My chances are low (according to the Paxman site I have 35% chance of keeping 50% of my hair) but I’m in the “nothing ventured nothing gained” category in this journey. (I’m triple negative and having dose dense AC-P)