When cancer survivor Lizelle Knott was diagnosed with breast cancer, there was one thing that she just couldn’t accept: losing her hair. Again.
At age 16, Lizelle had been diagnosed with Stage IV Lymphoma, and the treatment made all her hair fall out – a devastating experience for a young girl. Now a wife and mother, Lizelle had no choice about fighting cancer a second time – but this time, she made up her mind to hang onto her hair.
Like so many who have grieved the loss of their hair, for Lizelle this wasn’t about vanity, it was about privacy. Having the right to decide who gets to know that you are sick, and how they learn about it. With a fifteen month old toddler to consider, Lizelle also wanted to look “normal” for his sake.
Psychiatrist Dr Tanveer Baig of the Royal Marsden Hospital in London says that hair loss is the symptom associated with the most distress two months after surgery; as many as 8% of cancer patients say they considered refusing treatment because of expected hair loss.
On the other hand, according to Dr Baig, there is increased tolerance for the other side effects of chemotherapy if hair loss can be reduced.
Lizelle had heard about a non-invasive treatment which can prevent hair loss during chemotherapy, and decided to try it with the support of her oncologist in East London.
The principle is simple: Hair grows from follicles lying just below our scalps. They are energy rich and require a good blood supply. If the scalp can be kept cold enough, growth activity in the follicle is suppressed, reducing blood flow. What’s more, the small blood vessels around the follicles constrict, allowing minimal blood to get through.
The first few hours of a chemotherapy treatment is a critical time to protect the hair roots so that hair does not fall out. So how hard can it be, just to keep a cool head for those few hours?
In practice, it was far from simple to rescue her crowning glory! The use of Cold Caps to prevent hair loss during chemotherapy was trialled in Europe as long ago as 2000 and is now going through further tests in California and New York. So far, the trials have shown an 81% success rate. As many as 50 000 patients worldwide have tried scalp cooling, yet it’s still not well known nor offered in most cancer treatment centres.
Undeterred, Lizelle persisted with the help of resourceful staff at GVI Oncology in East London, who put her in touch with GVI Cape Town (Sandton Oncology Centre in Johannesburg can also help). East London had two Elastogel Hypothermia Caps, and she was able to obtain another four from Cape Town – but figuring out how to use them was quite a challenge.
The caps contain a gel and are designed to wrap tightly around the head. They must be frozen to minus 30 degrees: a domestic freezer is not nearly cold enough. Lizelle had to order dry ice (the stuff that smokes!) and make her own mini-freezer out of a cool box, using newspaper for extra insulation. A negative-temperature infra-red thermometer is essential to make sure the caps are adequately chilled.
Four hours before chemo was due, all six caps would go in with the dry ice. From an hour before the chemo administration until 3 to 4 hours afterwards (Lizelle managed six hours!) the scalp is cooled with a new cap every 20 – 30 minutes. At this stage one needs a partner or friend to assist – it’s very “hands on” and nursing staff are too busy with their own duties.
Intense cold can burn, and to protect exposed skin, Lizelle came up with a neat idea: cut up panty liners and tuck them under the edges of the cap to protect ears and forehead. Dampening her hair before fixing the cap in place also helped. Lizelle’s husband dug out his welding gloves for handling the caps and dry ice – ordinary kitchen gloves wouldn’t be thick enough
Lizelle also used strapping over the cap to make sure that it was in contact with as much of the scalp as possible. She wasn’t taking any chances!
Studies overseas have shown that scalp cooling is well tolerated by most people, though it’s not unusual to have discomfort or a “brain freeze” headache for the first few minutes. (If you’re a migraine sufferer, it might not be possible to use a cold cap). But you’ll get cold and will need to wear warm clothes or wrap up well. Lizelle had two electric hot water bottles to keep her comfortable during the freeze.
As is common with chemotherapy, Lizelle’s treatments took place once every three weeks. But the hair rescue isn’t confined to scalp cooling – even with cooling, the roots are weakened, the scalp is dry. Constant TLC is necessary to keep hair looking good.
Lizelle advises: “Once a week I washed my hair with cold water and baby shampoo. Do not wash your hair in the shower as this will cause a lot of knotting. It happened to me and my poor husband spent hours combing through the knots. Rather have someone wash your hair in a handbasin or over a bath using a handshower. And whatever you do, don’t tip your head over! Wash it sitting, like at a hairdresser.”
Lizelle even slept on a satin pillow case to minimise hair stress. There was some hair loss – probably because that first treatment wasn’t cold enough – but no need to cover up. By her sixth and final chemo session, Lizelle’s hair looked like this:
Result! In addition to the major morale booster of being able to prevent hair loss, Lizelle also followed a vitamin supplementation program from Annique which helped her to get through the weeks of treatment with no side effects beyond occasional tiredness.
Like other patients with a good outcome from Cold Cap Therapy, Lizelle is keen to raise awareness of this option. But so far it’s had a cool reception amongst doctors and nurses in oncology (see www.rapunzelproject.org/news for more information and links).
This is not really surprising – scalp cooling is not new, and it didn’t work at first. Besides, this is all about cancer and what if cancer cells also survive the cold? Dr Hope Rugo of University College San Francisco, who is leading the current study in the USA, points out that cooling systems have improved and are now capable of being fully effective.
Some centres overseas have installed systems such as DigniCap, that pump coolant into the cap so that it doesn’t have to be changed and re-strapped – though this means more time in the treatment room.
As for cancer spread, Dr Rugo’s review of 83 scalp cooling studies found that metastasis to the scalp is extremely rare.
Doctor and breast cancer survivor Heather Millar notes that Cold Caps don’t suit everyone. Some shapes of head may not allow enough contact, and some people’s hair (ironically) may be too thick – though it has been shown that both Caucasian and African hair can be saved by Cold Cap therapy.
Success may also depend on the particular combination of chemo drugs you have been prescribed – or it may be that you need more extended chemo, which would make Scalp Cooling impractical.
Scalp cooling is not appropriate for those with a blood cell cancer such as leukaemia or lymphoma, who need chemotherapy to reach every blood vessel however small.
Other body hair, eyelashes, eyebrows still fall out. It is the loss of this hair that “proves” the success of the Cold Cap in cases where it is successful.
But as Dr Millar says: “Hair loss isn’t trivial. What are the first things other people notice? They notice your face and your hair. The prospect of going bald was the first thing that reduced me to tears after my diagnosis”.
A year later, Lizelle has put chemo firmly behind her, but she’s still on her “Pink Ribbon Journey” and is passionate about communicating to fellow cancer patients they CAN keep most of their hair despite chemotherapy.
Scalp cooling may be (for now) the “road less travelled” but it certainly can make all the difference.
Dr Millar’s blog entry: blogs.webmd.com/cancer/2012/03/chemo-means-going-bald-not-necessarily.htm
Researchers gather at the Royal Marsden: http://news.cision.com/se/dignitana-ab/r/researchers-gather-at-the-royal-marsden,c9310526
Katsimbri et al, “Prevention of Chemotherapy Induced Alopecia”, European Journal of Cancer, April 2000: http://www.ncbi.nlm.nih.gov/pubmed/?term=Eur+J+Cancer+36%3A766-771%2C+2000
Picture credit: https://m.youtube.com/watch?v=UXSyBDgnOx8 – go ahead and make those pretty snowflakes, you know you want to!