My Scalp Cooling/Cold Caps experience

Below is a summary of my experience of the last 12 weeks with Cold Caps/Scalp Cooling

When my oncologist suggested that I needed chemo, his very next words were ”we can retain your hair via cold caps”. Like many women, I was petrified of losing my hair and wanted some control of being "anonymous" during my treatment process.

At that time I had never heard of scalp cooling/cold caps and had no idea what was involved.

My oncologist was confident that it would work for me due to the Taxol chemo treatment I was about to undertake. He showed me pictures on his phone of his other patients and the success they had.

So I was willing to give it a go and thankfully due to my private health insurance I was able to get into a hospital that offered the service very quickly.

I used the Paxman machine. Ive attached a picture of what the machine looked like. Once its connected to your cap via the hose you see in the picture, it continually pumps out cold air to a certain temperature to freeze the hair follicles.

 My typical treatment day was as below 

1. I was given Ativan to take under my tongue to take the edge off that initial cold feeling. This usually takes about 30 minutes to kick in
2. Whilst the Ativan was taking effect my canula was put in ready for infusion
3. I then went to the bathroom with hubby who helped to wet my hair and place conditioner on it and comb it back to ensure there was no partline
4. Back at my chemo chair, the caps were put on. There are 2 caps a silicone one underneath and another one that sits on top with the chin strap. I wore a Large inner cap and a Medium outer cap to ensure a tighter fit. The chin strap was annoying but tolerable. Its important that the cap is fitted properly and you have a snug fit, the nurses were great as they knew what to do but by the end I became an expert too
5. The machine is then turned on and cold air starts pumping straight away. A 30 minute timer is set at this stage and my pre meds are given at this point too. The first 15 minutes were the hardest, after that my head was so numb I could not feel it.
6. Taxol infusion then started after the 30 minutes was over, this typically took about 1 hour.
7. After the Taxol was over I had to sit with the cap on for another 1 hour. When I had Herceptin every 3 weeks, this hour was used for this infusion so no extra time was really needed.
8. So overall the cap was on for 2.5 hours, a few times when it was taken off I had icicles on my head J

I repeated the above 12 times over 12 weeks. I really did not think I was initially going to tolerate it as I do feel the cold. It was easier than I initially thought and my encouragement was when I went in week after week and the nursing staff and oncologist were amazed at how much hair I still I had, it gave me the drive to keep going with it.

My home care was as follows: 

1. When I got home from treatment, my hair was flat/wet from conditioner etc, so this became my wash day. I washed with Dermaveen shampoo and conditioner which was free from all parabens, sulphates, perfumes etc. The gentler the products the better. I also used luke warm water.
2. I lightly towel dried and then sat outside to air dry, thankfully it was summer and it would dry quickly
3. I never used the hairdryer the entire 12 weeks and I usually have styled hair so this was difficult
4. My roots became a problem after a few weeks so I used some root touch-up products that were free from Peroxide and Ammonia and they helped to camouflage the grey hair.
5. I used some Argan Oil at the ends as my hair got dry as treatment progressed. I used no other styling products.
6. I only combed my hair with a wide toothed comb, no harsh brushes etc

My Hair loss progressed as follows

1. Hair loss started at Week 4/5
2. Hair loss was consistent, I did not have a big shed at any point in time
3. Picture with the least hair loss is what I typically got daily after combing my hair
4. The picture with the most loss was after wash day, this was always the most I lost
5. The other two pictures are what my hair looks like at the end of the 12 weeks, as you can see I have lots of hair left, no impact on my part line either. I did have thick hair to begin with, I can notice that it has thinned but most others would hardly notice the difference.

Im not sure how much more I will keep shedding and there is varying opinions as to when I can color my hair and go back to normal styling. For now im going to give myself another 6 weeks of “babying” my hair as if im still on chemo and then hopefully get back to my pre-chemo hair routine.

 There is varying degrees of success dependant on the chemo plan your on and with the harsher chemo mixes the results may not be as good but its worth having a conversation with your oncologist to see if it would be something you should try.

 I so wish it was available in more hospitals and especially in the public arena. My hospital had 2 machines (2 people can use it at the same time) which meant upto 8 patients could use it daily (AM or PM slots), on some days it was hard to get a machine and as my treatment progressed more and more patients were using the scalp cooling as part of their treatment plan.

 Im planning to talk to my oncologist about what it would take to do some fundraising to get funds to buy a scalp cooling machine for a local hospital that does not offer the service as yet, a little way I can give back for something that was a positive outcome for me.

 If anyone has any questions, im more than happy to answer them and provide support to anyone who is thinking of undertaking scalp cooling.

 Angie