In our Pioneer series we will look in to the experiences of people who have been through scalp cooling and ask them all about their experience. We have chosen these patients because they didn’t find scalp cooling plain sailing, but despite this, they would still recommend scalp cooling.
– Which of the following most accurately describes your experience of scalp cooling? – successful, some success, unsuccessful
– What was your hair like pre-diagnosis?
Thicker than average, long mid back length and coloured
– Did you do anything to your hair in anticipation of scalp cooling?
I dyed it a couple of weeks in advance in anticipation of my treatment
– How was the scalp cooling experience initially? Did it change over time?
My expectation initially was for extreme cold, but it wasn’t that bad. Other people’s descriptions were that it was brutally cold and painful, which it wasn’t. I was also cooling my fingers, which was much tougher going than scalp cooling. At times I got discouraged wondering if scalp cooling was going to work fully, and I was in touch with Rich (Paxman CEO) after my second cycle as I lost a lot of hair. I wasn’t sure if I was doing something wrong, was hair loss to this level normal? It turned out that cap fit was an issue for me, as despite the cap I was using being the right size, I couldn’t get good contact with the crown. I remained positive throughout, but it wasn’t what I had expected. I hadn’t expected to lose that much hair at that time, and that quickly.
– Did you find any techniques or do you have any tips which made scalp cooling easier?
I was prepared for the cold, particularly due to the cooling of fingers too, so heated blankets made a difference. I took Benadryl which made me very sleepy to the point of knocking me out, so I actually slept through most of the scalp cooling treatment. I got through it all with the help of my friends and family, they were about the only thing that got me through the finger cooling process. The Paxman system allowed me to rest throughout my treatments, which wouldn’t have been the case with the exhaustion of having to swap manual caps every 20 minutes.
My expectation initially was for extreme cold, but it wasn’t that bad. Other people’s descriptions were that it was brutally cold and painful, which it wasn’t. I was also cooling my fingers, which was much tougher going than scalp cooling.
– Did you have a specific hair care routine before you started treatment? Did you change your routine during treatment?
I used to wash my hair every 3 to 4 days, would use products and then blow dry. When I was scalp cooling I washed my hair maybe every 5 to 6 days only and used the Paxman conditioner and shampoo and gently worked it in, didn’t scrub, then air dried. This reduced my usual getting ready time from 45 mins to 20, which was a rare bonus of chemo! I didn’t use any heat at all, and then styled my hair in to a low bun. I risked blow-drying my hair the once at Christmas because I just wanted to look good, but hair loss began 2 weeks later, so I didn’t do it again.
– Did you find any particular techniques or tips that made hair care easier during treatment?
I used the Paxman shampoo and conditioner and I didn’t find hair dry particularly. I found that my hair didn’t need washing as frequently as it wasn’t being touched and didn’t have product either.
I couldn’t bear the clumps of hair that came away when moving hair around while my hair loss was at its worst, so I wore it up to make things more manageable.
– How long did you wait post treatment to start your pre-treatment hair care routine, such as dying/colouring, bleaching, heat styling etc?
Shedding continued for 2-3 weeks post final chemo. I had my first hair cut 4 – 6 weeks after treatment to remove dead unhealthy ends and I was really pleased because my hair dresser said my hair felt robust and healthy. 8 weeks later I had it coloured and started heat styling again, as I figured it wasn’t so delicate anymore.
– Did your hair change in any ways you weren’t expecting post treatment?
I didn’t have any change in texture or colour. I was worried it might come back grey, but lucky not. I have the slightest curl to the ends, but not noticeably so.
– Was there a specific moment or occasion where retaining your hair was most important to you?
For me it was the day to day. I wasn’t bothered about anyone knowing, I didn’t care what people knew. I was prepared to lose hair but I was going to try what I could to maintain it, for myself. Keeping my hair for me was about motivation and positivity.
When fully clothed, I looked and felt as though nothing had happened, and was fully motivated to get fit and healthy and exercise and I was so encouraged because I looked normal just 2 months after radiation.
– Did retaining your hair make a difference to your recovery post treatment?
Keeping my hair gave me internal positivity and I found it really motivating to have my hair during and after chemo. Chemo will help you to heal but keeping my hair made the difference to my attitude. When I looked in the mirror it made me feel happier, even as the drugs took an effect you could think you don’t look so bad, where as if I was bald it would be harder to feel motivated to get through the treatment.
– Do you think the experience was worthwhile – would you recommend it to others? If so, why?
I would definitely do it again, because after radiation finished in June (I finished chemo in March), I went on holiday in July, I’d lost weight and looking in the mirror I felt as though nothing had happened. When fully clothed, I looked and felt as though nothing had happened, and was fully motivated to get fit and healthy and exercise and I was so encouraged because I looked normal just 2 months after radiation. It was so much better than having to live through the bald, then pixie cut transitions and the constant reminder that would have been. The line was drawn, I felt good and I looked normal with hair extensions. Through my work I have contact with physicians and I always recommend scalp cooling.
– What did it mean to you to be able to keep your hair?
How you look effects how you feel. I’ve always taken care of myself for health reasons, to maintain your hair makes you feel better about yourself, and that positive attitude can help you to heal.
– What do you wish you had known before you started scalp cooling?
Doing research was really useful, and made me feel as though I was fully prepared. I would suggest that you do research.