carboplatin, paclitaxol- hair loss and cooling caps- any advice

I'Ve had 10 cycles of this treatment, and encountered no major side effects with it, other than nuropathy in my feet, never tried a cooling cap, was'nt offered it and felt no need for it. suffered some hairloss but being a man and having pretty thin hair already, it din'nt bother me particularly.

Hi Jane2511

I had my first Oncology meeting yesterday, the nurse told me that at our hospital they have the cold caps and a PAXMAN machine, she explained this was something you sit under and cold air blows over your scalp. She said that these have a 50/50 success rate. 

Iam going to find out more about it when I visit the unit and give one a go. I'm having my hair cut short on Friday, it's just past my shoulders at the moment.

I know there are some ladies in our group that have tried the cold caps so I too would be interested to hear about their views and experiences.

Robin x

thanks - it feels such a big thing to face- the chemo and then the hair loss on as well. Worried about the side effects and how it is going to make me feel, 

Hi Robin- I have an appt on Thursday. Not yet brave enough to cut my hair short. Mine shoulder length too. I am looking at wigs and head scarfs so when the inevitable happens i have some choices. I had heard about the cool caps but just wonder how much they actually work. I feel bad for focussing so much on the hair loss but to me it makes it visible how unwell you are. I have a friend who is a hairdresser who will trim up a wig for me but I feel so emotional about it

Don’t feel bad about worrying about hair loss, I was exactly the same.  The only thing I didn’t want to happen was my hair coming out because I felt like that’s when people would know I had cancer.  I shaved mine off in the end as it was upsetting me seeing hair coming out.  Must admit I don’t mind the bald look although I don’t go out without my hat on. X

Hi jane2511. I bought a pack of 4 turbans from Ebay, they cost £12.99 and have lasted well, washing up OK and not stretching too much. I've a selection of wigs, the more expensive one I wear when I go out, the cheaper ones aren't so good. The wigs do make my head hot but I can cope with them. 

I'm retired so when out walking dog I've either worn my bobble hats or turbans.

Now it's getting warmer and my hair's started to sprout I may well go au natural. I'm not ashamed of having cancer and if anyone asks me about it I'll tell them! 

My bestie's running in a Race for Life this weekend so I'm going to support her with my bald head in my pink t-shirt  (thinking of getting a temporary pink hair colour)

It is an emotional time facing such an upheaval in your life but you will get through it, funny thing it makes you stronger I think.

Big hugs, Barb xx

Hi 

I'm currently using the Cold cap and I've still got most of my hair after three cycles. It has gone thinner and I did lose the most hair cycle 2. My hair was already thinning before chemo due to stress and bereavement the last couple of years so I wasn't expecting to keep all of it. What I do know is that if you have thick good hair then the bit you lose won't be so apparent. If you don't use cold  Cap you will most certainly lose all your hair in the first cycle.

It does add time to your day but the nurses put the machine on to cool as soon as I sit in the chair, then whilst they give me the pre chemo meds and flushes they condition my hair, put the cap on and I always have the Paclitaxel first that takes 3 hours to go through, this is the drug that makes you lose hair, once that's done they have to leave the PAXMAN machine on another hour during this time I have the Carboplatin this takes an hour to go through your system then you have another flush , sometimes they leave the cap on until I'm ready to go home, they give me a towel to dry my hair, I put my thick hairband on and go home. I leave the conditioner in till next morning and carefully wash it out. I don't use hairdryer or any heat for styling. I only use gentle shampoo and conditioner without parabens or sulphates. Hope this helps, the nurses in the Chemo suite were very supportive of the cold cap and actually say they've seen good results.

Hope this helps xx

Thank you so much Mad for explaining everything to us, interesting yours is the PAXMAN machine too. curious now as to what the other option  my nurse was referring too when she said about 2 types. I guess I will just have to wait until I'm in the unit to find out. So glad it's working for you and the nurses have seen good results in the past  we can only but try, if I do loose my hair it's a small price to pay for having peace of mind that the cancer has been well and truly zapped. 

Hugs Robin x

thanks Mad- it seems that it is worth a try- I will talk to the nurses. I have cancer, my friends and family know I have cancer but I don't want to look like I have cancer if that makes sense. Its that little bit of dignity.

Hi Jane

i was on the same as you.  I did lose my hair, but for the caps you can buy on Amazon very comfy and stylish. What was a surprise was that when it grew back it was thicker and curled. I was delighted. It didn’t take long to grow back. Sadly at the end of that year a small tumour was found in my breast (no connection with endometrial tumour). After lumpectomy I was put on paclitaxol again. Smaller dose but weekly. I found it far more able to be coped with. I had to stop earlier chemo because of the side effects. Seeing that consultant every 4 months. Anyway, the hair didn’t come out, it seemed to straighten out and has gone finer again. Shame. I liked my new look. We get wig on nhs here in Scotland, but I, like many others, found that very uncomfortable.  

my nurse told me cool cap gave you headache like eating ice cream too quickly. It didn’t always work. 

good luck whatever you decide.