Hi Sue,

That was a huge thing for me, l didn’t want to look sick.

I’ve also done a lot of soul searching about the vanity thing as hated thinking l was this vain. I decided nope, so what if I’m vain about this, it’s my weakness. It’s so blinking cruel the treatment for our illness, to take our hair on top of everything else is just not fair! So we have a right to feel vain and this upset.

Your hair loss may calm down but l guarantee you will be looking for it, counting every strand, so it will feel worse than it is. Work on the assumption that the cap can save up to 50% of your hair so technically that is a lot of loss. You are giving it the best chance though.

It sounds like you coped with your first chemo really well, very similar to my experience to be honest. My chemo varied each time. I suffered so much following the second dose that they reduced it by 20% so be sure to tell them. Everyone is different.

I was told l shouldn’t drink through chemo & radiotherapy. I’m not even a drinker, but you know how it is, when you can’t have it you want it more! I’m enjoying catching up now :)

Keep a daily diary! I found that helped so l could compare weeks. Also it’s another distraction.

Keep strong

Giggi

Hi Sue,

I am starting my chemo tomorrow, and I'm going to try the cold cap. I have long thick hair. Anything I have read says that is ok and no need to cut hair very short but the nurse I spoke to today said the shorter the better. I see from a comment on here you have thick hair, can you tell me how long it is and if you were told the same as me. 

Thanks

Allie2

Hi Allie,

Good luck with your chemo tomorrow. I have my 4th chemo tomorrow which is my last EC before I go on to Pax. My hair is very thick and just past sholder length. I didn't cut my hair before I started chemo. My parting is a bit wide now and my crown is getting larger but I don't need to wear a wig yet. I do, however, wear a large headband when I go out. My advice would be to wash your hair as little as possible and I use Simple shampoo and conditioner. I also use a dry shampoo so I can go longer between hair washes. The cold cap is agony for the first 20 minutes but after that I don't feel it. It is worth the pain as I still have a lot of hair left. At first my hair was coming out in handfuls but it didn't notice that much. It is quite alarming when you see how much hair sheds but if you have thick hair it is less obvious.

Best wishes,

Sue

Hi Sue

Thanks for getting back to me. I've just had my hair cut and I decided to get it shoulder length, so will see how it goes. My hairdresser wants me to go in and show them how it looks. I will count it as a good result even if I lose half my hair. 

Good luck with the rest of your treatment. 

Allie2

Hello there - I hope you're doing well.

I am due to start 2 months of accelerated EC chemo and then 3 months of Carboplatin & Paclitaxel and plan to use the cold cap. 
 

I just wondered whether you ended up having success and if you have any particular tips?

Thanks!

Hi, 

I had EC followed by Taxol and finished my chemo at the end of December last year. It's definitely worth giving the cold cap a try. I had a really wide parting and a large bald patch on my crown but kept the majority of my hair. It did get very brittle but I only washed it once a week and it started to grow back whilst I was on Taxol.

The first 15 minutes are really unpleasant but after that it's ok. I also put coconut oil on my hair before I combed if after washing it.

Good luck with your chemo, it's not nice but it is doable and will be over before you know it.

Sending hugs

XX

Thanks so much for your reply - well done for getting through it all!x

If you need any more advice feel free to ask me.  There is light at the end of the tunnel.

XX

Hi there,

I would like to wish you the very best with your treatment.

I persevered with the cold cap and it worked to a point. First of all, please be prepared as it's very painful initially. After 10 minutes your head will numb and then it's fine. It helped me to have a loved one count down the minutes and it's amazing how it suddenly feels fine!

I believe they told me it works for about 50% of people.

I did lose my hair, but slowly and never went bald. This was so important to me mentally and l could navigate eventually with berets & headbands. It may well be very different for you and you keep your hair. I believe the cap allowed my hair to keep growing throughout the process.

My hair was long so may have made the difference, more pressure on the hair folicols. 

The valuable advice l can give is try to avoid washing your hair. Manage it with as little as you can. Also use baby shampoo and be gentle with your scalp. 
 

You can do this! 
 

Sending you my very best wishes

So like all of you I am using the cold cap, and I'm halfway through my treatment, 3 more to go. I have noticed a lots of us seem to be suffering with a widening parting, and more hair loss on the crown. How are you finding the fit of the cold cap? In this area? I'm not finding it that great, once the cap is on I don't feel it's making contact with my head. I'm thinking of taking some cotton wool with me next time, wetting it and putting it under the cap on the area to maybe keep the areas cooler, what do you all think? 
 

I did have longer hair and did have it cut to above my shoulders, just so it's more manageable and I don't need to brush and wash it so much now. 
xx