Due to start chemo and cold cap

Hi PDarlo I am at a similar stage to you. Had my first oncology appointment today and was keen to talk about cold cap but was told that comes next when you have a 'consent appointment' with the the chemo nurses - wig fitting/options being part of that too. My chemo is due to start in 2-3 weeks so that doesn't feel like much time. Told that I'm likely to lose hair between cycles 1 and 2 - it's a very anxious time. I watched some YouTube videos from other ladies talking about chemo experiences with Bread Cancer - that's helped a lot with my anxiety about what to expect practically and how to prepare,,, and had lots of lovely replies from others here too (who kindly replied to my blog posts). I wish you all the best - and please  keep in touch - we can all support each other through this.

Hi SweetiePie , absolutely keep in touch, we can get through this together. I consented last Friday when I had my oncology appointment. They said about bloods but I forgot to ask and they didn’t say anything about it, other than we agreed I would try cold cap. 
We’ve got this xx

Hi PDarlo, the scalp cooling cap will be fitted on the day you have your chemo. They have various sizes which they can try in order to get the best fit. It’s normally fitted about half and hour before you start your chemo in order for the hair follicles to be cooled sufficiently. If you don’t use it on the first chemo session you won’t be able to use it for future chemo sessions. If you use it and don’t like it you can always stop but it’s worth giving it a go. 
The first 10 minutes are the hardest but after that you start tonight used to it. you can have paracetamol to help if you want. I used to try and distract myself with games on my phone or chat to the nurses or my hubby. 
I used it for all 8 cycles of chemo. 4x EC and 4 x Docetaxel. I did loose most of my hair on EC (it’s the worst one for hair loss I understand) but it started to grow back in Docetaxel. The scalp cooling cap is supposed to be good in helping the regrowth. Everyone is different and some have been lucky and hardly lost much hair on EC, but no one can tell who will or won’t loose hair. 
This is the website for info about the scalp cooling cap

https://paxmanscalpcooling.com/

I used to take with me a snuggly blanket, slippers, leave in conditioner (needed to help with the scalp cooling cap), snacks, drink, magazine, iPad and phone. 

Again everyone reacts differently to chemo. I found the first couple of days are ok because you have steroids and anti sickness meds to take. After that days 4 to 7 (maybe 10) I felt really tired, had sore achy muscles , skin and bones. These all then eased and I was fine until my next chemo. 
Keep a diary so you can note down how you feel each day. You’ll find it similar for each cycle of EC and it makes it easier to know when you have good and not so good days. I used it to help me know when going to work would be best. I continued my diary when I moved onto Docetaxel. That has slightly different side effect for me but again it helped work out my good and not so good days.

You can read my journey if you click on my name. 

Hope this helps.

Wishing you all the best for your journey.

Hugs from cuffcake x x x x x 

Thanks cuffcake2000 , much appreciated. 
I read your profile earlier, thanks for sharing your experiences and your advice x

Thanks for your detailed reply cuffcake2000 - that's really helpful. One quick practical question .... do earbuds work / fit under a cold cap do you know?  I have a really big head (hats never fit me) so I'm hoping this will work for me.

A video I have watched says you can use earbuds under the cold cap, hopefully cuffcake2000 will be able to confirm x I am really hoping so too x

I wear earbuds under the cold cap - no problem!!!!!!! Also just to say they have different size cold caps but you do need a tight fit so the connection from the cap to the scalp is snug - it needs to be able to freeze the fair follicles.

Jan

1. Thanks JPH xx

You can look at the cancer hair care website and the paxman one so you know what a good fit for the cold cap is. The main area that is tricky is over the crown. You don't want the feeling of a bubble or space between the inner and outer cap. It needs to be snug all over. You spray your hair with water and rub in conditioner before the cap is applied. The websites explain it all well. Its also important to be very gentle with your hair if cold capping - gentle brushing working knots from the ends first and then gradually make your way towards the roots. Also tepid not hot water for washing the scalp. A gentle shampoo like faith in nature can be helpful too. Good luck with your chemo and cold capping.

Many thanks zephyr for your advice. X