Head cooling during Chemotherapy

Hi TalkingListening,

Welcome to the group none of us wanted to qualify for!

When I had my first breast cancer in 2005 I was offered the cold cap and used it initially.  I hated the feel of it, I'm sure they have changed now but I found it hard to deal with. For the first three chemo infusions I tolerated it, at the fourth I experienced quite bad nausea and at the fifth I was actually sick when the nurse put it on. I think by that time I had come to dread it almost more than the chemo, and that definitely had an effect!  For my sixth and final chemo I did not use it and had no sickness.  

It certainly helped to preserve my hair, so if that is important to you I would say give it a try.  Everyone is different and I am sure there will be many ladies on here who had a good experience all the way through with the cold cap.  I will be starting treatment soon for a newly diagnosed breast tumour but I don't plan on using the cold cap this time!

Whatever you choose to do, I wish you all the best with your treatment. xx

Hi Talking/listening 

Hope you’re feeling OK. 

My BC nurse talked about the cooling cap. My current chemo lasts about an hour. I would have to have the cooling cap on for 2 and a half hours so would have to stay for longer. It apparently only works 25% of the time too. For these reasons I’ve decided not to go for it.

I’m stage 3 and had my first chemo a week ago. I’ve been tired at times but apart from that I’ve been OK. Not as bad as I thought!

With all the new drugs/treatment it seems that more and more can be done to help people. 

Bluebell xx

Hi!

I have just completed my chemo and had a lumpectomy today 4th March, due radiotherapy soon.

I had 3 sessions of EC, then 4 sessions of docetaxel, pertuzamab and trastuzumab in 3 weekly cycles.  This reduced my almost 6cm lump in breast and lymph node under arm to no trace .... amazing!

I would definitely recommend doing the cold cap.  You need to do it from the first session of chemo.

I have got shoulder length hair and didn’t cut it at the start.

While I did lose hair from around 2 weeks after the first session and then throughout the whole time I have ended up with around 60 to 70 percent left.

I have got a couple of baldish areas, where the cap didn’t quite cover eg just above the ears and at the bottom of hair at the neck but the hair length from above covers it.

It is also a lot thinner all over but at the end I have got enough hair to feel confident enough not to wear a hat to cover it.

I bought a wig for just in case, but it is still in the box unworn!

Each session I thought, well that wasn’t worth it because I have lost hair anyway, but then my husband would say you have still got some so keep going. My daughter who is a hairdresser said keep going and at the end we could weave hair extensions in if you have some hair left to attach it to.

So I kept going.

It actually started to grow back in during my last few cycles of docetaxel and is already starting to fill in the thinner areas!

It is not nice, especially the first 10 mins but I am so, so glad I carried on.

Some hospitals are not doing it because of Covid, but I think if it is offered to you it is worth giving it a try if the thought of losing your hair fills you with dread?

Good luck!

Hi TalkingListening.

Take a look at the Paxman Scalp Cooling website. Paxman are the company that make the scalp cooling machines used in most hospitals.  I wish I had seen this page before I started with my chemo as it explains how to make sure the cap is fitted correctly.

It has a lot of useful information. They also have a facebook group which has lots of encouraging stories from others who have used the scalp cooling.

Good luck with your decision and treatment x x

Hi I am currently cold capping using the paxman system at my hospital. I’m 3 rounds into docetaxel and carboplatin (TCHP) for stage 3 and the only hair loss I’ve had is above my ears where the cap doesn’t reach and light thinning all over. I do know it’s more effective for some drugs than others but for me it’s helped me to feel more ‘normal’ I hope to keep going with the same amazing results.

discomfort wise I know a lot of people cannot tolerate the cold but the first 10-15 mins are the worst, after that I honestly forget I have it on. My best tip if you do try it is to take a couple of paracetamol beforehand!

sending lots of love and luck to you

If you have any questions just ask 

lauren x

Hi Lauren,

What a rocky path we're all on...... Thank you so much for sharing your experience and good advice ! 

I've got very thin hair anyway, always felt self conscious about it. At this point I'm totally undecided, think I've got to share the dilemma with my partner more honestly.

Best wishes back to you ️

Kiki xxx

Hi Eiluj,

Thank you for taking the time to give me the helpful information ! At this point I'm not aware which system my hospital uses, but you've given me more confidence.

Sending you my best wishes,

Kiki xxx

Hi,

How very heartening to read that you're doing well ! Keep on just like that !!!

You've given me so much useful information and your story gives me encouragement.

I haven't started treatment yet. I think it is high time that I sit down with my partner and openly share my anxieties. I tend to keep my darkest thoughts to myself.

Best wishes , Kiki xxx

Dear Bluebell,

Thank you so much for sharing your experience and decision making. Yes, the discomfort and additional time in hospital is certainly a consideration......

I'm still undecided, overall anxious and apprehensive about starting the Chemo.

Sending you my very best wishes,

Kiki xxx

Hi Kiki

Thank you for replying. I’m sure you will make the right decision for you. You could maybe try it and see how it goes?

Chemo is daunting. My breast was red and inflamed. I’m really encouraged to see that this has greatly diminished. I’m guessing it’s working! One step at a time.

Hope all goes well. Continued sharing will benefit us all.

Bluebell xx