1. Can you tell us a bit about scalp cooling – what is it and how does it work?
Scalp cooling is a simple treatment that can prevent hair loss caused by certain chemotherapy drugs. The use of scalp cooling has been proven to be effective in preventing chemotherapy induced alopecia, and can result in people retaining much of their hair.
Scalp cooling works by reducing the damage that the chemotherapy drugs cause to hair follicles. Chemotherapy works by targeting all rapidly dividing cells in the body – hair is the second fastest dividing cell. Chemo damages the hair follicle, which results in hair loss, usually between day 14 and 17 after the first treatment.
Scalp cooling lowers the temperature of the scalp immediately before, during and after chemo, which helps to prevent damage in several ways – firstly, by reducing the temperature of the scalp, vasoconstriction occurs, which significantly reduces blood flow and means that less drug will reach the hair follicles. Secondly, the cooling process can cause the rapidly dividing hair cells to become dormant, so any chemo drugs that do reach the scalp will bypass the dormant follicles.
This cooling process can be done with either gel caps that are kept in the freezer, which are no longer commonly used in Britain, or with a cooling system, such as the PAXMAN system, which is a compact refrigeration unit that channels coolant through a specially designed flexible silicone cap.
2. What temperature does it cool my head down to?
It’s really common to hear people talking about cold caps freezing their follicles. But it is a myth. Scalp cooling absolutely does not freeze your scalp! The coolant in the system operates at a temperature between -4 & -1 degrees Celsius, which is necessary to reduce the scalp to the optimum temperature for scalp cooling, which is somewhere between 18 and 22 degrees Celsius – significantly above zero! The ice crystals that are sometimes seen on the hair once the cap is removed post treatment is from the water and conditioner that is used to prepare the hair before the cap is fitted.
3. If I use scalp cooling – will I definitely keep my hair?
Unfortunately not, there are no guarantees. The current statistics are a 50% chance of keeping 50% of your hair. Results do vary from person to person, and depending on the chemotherapy drugs. We are working really hard to increase the efficacy of the process, and recently announced the opening of the world’s first Scalp Cooling Research Centre in conjunction with Huddersfield University. We are really excited to see the work that will come from the partnership – the focus is working on a topical agent to be used in conjunction with the cold cap, developing the option to create specific caps for each individual using 3D scanning and digital printing, and also to try and understand why scalp cooling doesn’t work for some people.
4. Is scalp cooling suitable for all hairstyles? Thick, thin, straight, curly, highlighted, Afro, long, short, permed?
Anyone can cold cap. Women or men, and whatever kind of hair they have.
5. Can I use scalp cooling with long hair, or do I need to have my hair cut into a short style?
This is another myth that does the rounds. There is absolutely no requirement to cut your hair before you start scalp cooling. The only time that we would recommend cutting the hair before scalp cooling would be if you have very long thick hair, but only to alleviate some of the weight at the scalp. Your hair will be much easier to look after if it’s in good condition, so a good trim to get rid of split ends and damaged hair is a good idea.
We asked our Facebook Paxman support group (link in question 17) – did they have their hair cut before treatment, and a lot said that they did. The most common answer was because it would mean their hair would be more manageable, which is definitely a good idea. Hair care during cold capping is really important – the more manageable the better, particularly as it is easy for long hair or over processed hair to become tangled. In the end it is whatever you are comfortable with.
6. Do all hospitals in the U.K. offer scalp cooling? And if not at my hospital, is there any way I can access it for my chemo sessions?
98% of NHS and private hospitals in the UK have a Paxman scalp cooling system. If you think you are eligible for scalp cooling always ask – sadly it is not always offered. If you don’t know if your hospital has a system, drop us a line to email@example.com and we can let you know. Scalp Cooling is also available if you are having chemotherapy at home via Healthcare at Home or Lloyds Pharmacy Clinical Homecare as long as you have Private Medical Insurance.
7. How do I prepare my hair for my chemo session if I am scalp cooling?
There are a couple of simple but important steps that you’ll need to do to prepare your hair before you fit the cold cap. Firstly, you need to dampen your hair. This is easiest with a spray bottle. It needs to be damp where the cap is going to touch your hair, so there is no need to wet the whole length of your hair, anything that sticks out underneath the cap can stay dry. No need to drench your hair and look like you’ve dunked your head. Your hair and the air that gets trapped between the strands can act as an insulator, dampening your hair aids conductivity allowing the heat to travel from your scalp to the coolant in the cap, making sure that your scalp cools properly.
Once your hair is damp it should be pushed or brushed backwards away from the forehead, a small amount of conditioner should be smoothed over the surface of your hair. It doesn’t need working in to the hair, as it’s just there to help remove the cap afterwards. As your scalp and skin can become very sensitive as a result of chemo treatment, we would recommend a colour, perfume and sulphate free shampoo and conditioner be used throughout. Plus some of our Pioneers have mentioned that they cannot bare the smell of the conditioner they used anymore as it reminds them so much of their treatment days. Then you are ready to have your cap fitted. We have some tutorial videos that go through this process that you may find useful.
8. What can I expect during chemo when I am scalp cooling?
We would always recommend that you come to your chemo appointment as prepared as you can be. Make sure you have watched the videos so you are all clued up on the cap fitting. Make sure that you bring some warm clothes with you, and maybe a blanket or scarf to help you keep cosy while you are using the cold cap, and a hat or a hoody to wear on your way home as your hair will be wet.
The most difficult part of the scalp cooling process is always the first 10 to 15 mins. People often find this quite uncomfortable. The cold is instant and can feel quite extreme, like an ice cream headache, but the body is a wonderful thing and for the majority of people after the first 15 mins, you acclimatise to the cold and may just feel a numbness. Our Pioneers who have all been through the process say that distraction is the best bet. Watch a film, listen to music, drink your favourite hot drink, one woman found eating super sour sweets did the trick. After that first 15 mins it’s much easier, and many people say they end up not feeling the cold at all. Some people do have some side effects such as a headache or some light headedness, but this often the effect of the chemo drugs, and less than 5% off people give up scalp cooling because they find it intolerable. The first treatment is often the hardest as it is a horribly stressful situation with so many unknowns. Many people say the second treatment onwards is much easier, if only because you know what to expect.
Once you have completed your post infusion cooling time. The neoprene cover can be removed, then it is best to give the cap 5 mins or so to warm a little before removing the silicone cap. If you prepped your hair properly with conditioner, then the cap should be relatively easy to remove. If it doesn’t feel like it wants to come off, give it another 5 mins and try again.
9. Do you have any tips to help me fit the cap properly on my head?
The most important part of scalp cooling is the fitting of the cap. It is fundamental to ensure the best possible outcome. We have recently filmed some tutorial videos which guide you through the entire process of preparing of your hair (dampening your hair, applying conditioner, and using a headband to protect your forehead) as well as ensuring you have the right size cap for you and how to fit it correctly. In the UK usually cap fitting is done by the nurses or clinical staff on the chemo ward, but in the US the patient has their own cap and takes responsibility for the fitting. You are your own best advocate, never be afraid to speak up if you are unhappy with the way your cap has been fitted.
The most important things to be aware of is that the cap is on centrally and evenly, that the cap is in contact with your crown (no bulges or bubbles that mean the silicone cap is not in contact with any part of your scalp), that the cap covers the hairline at the front but is only a couple of millimetres below, therefore not covering the forehead (this is where the headband can come in useful to protect your forehead), that the cap isn’t gaping at the back of your head, and that once the neoprene cover is on top of the silicone cap, that the bungee cords are pulled tight and you are generally content that you have a good consistent tight fit all over.
10. How long does it take?
Scalp cooling will add extra time on to treatment day. Everyone needs a 30-minute pre-infusion cooling time or 45 minutes if you have very thick, coarse or afro Caribbean hair, which ensures that your scalp reaches the magical 18-22 degrees before the chemo drugs are put in to your system. This can often be done while other pre-med drugs are being administered, or you are being prepped for the chemo. The cooling continues throughout the infusion time of the chemo drugs, then there is an additional post-infusion cooling time which is dependent on the drugs you are receiving – for docetaxel it is 20 mins, weekly paclitaxel is 60 mins and all other regimens are 90 mins.
11. It sounds painful, do you have any tips to help with possible headaches during the treatment?
It can be pretty uncomfortable to start with. To help with the first 15 mins, it is worth taking a pain killer in advance to take the edge off. Also the use of a headband or something similar between your forehead and the silicone cap is essential, as direct skin contact on the forehead is often the cause of a lot of discomfort.
12. Between chemo sessions, can I wash, dry and style my hair as usual, using my regular hair products? Or do I need to do anything differently?
Hair care is really important throughout the treatment process, from the first chemo sessions all the way through to a couple of months after your final one. Many people understandably become very anxious about even touching their hair, but it is really important to maintain daily hair care. Keeping your hair manageable is the key. Washing and brushing are often associated with hair shedding. These processes have no effect what so ever on whether your hair will shed – they just make the hair that has already shed more apparent.
We would recommend washing your hair no more than a couple of times a week in lukewarm water – but it is important that you rinse out the conditioner from the day of your treatment at the latest by the next morning. It seems counter intuitive but leaving the conditioner in can make your hair less easy to manage. Try to use colour, perfume and sulphate free products as your scalp and skin can be very sensitive during chemo. When you are washing your hair don’t ever pile it on the top of your head and rub – that’s a one way ticket to some serious knotting. Just smooth the shampoo or conditioner down through the lengths of your hair.
Brush your hair EVERY DAY with a detangling brush. This is one that people are often petrified of, but it is so important to remove any strands that are being shed, because it is so easy for those strands to get tangled up in your hair and become clumps or matts that are near impossible to brush out. Start by brushing from the ends of the hair and then slowly move up the hair, holding the hair below the root to support it the whole time. If you start at the root and brush through the full length, it can be very easy to exacerbate knots, especially if you have long hair.
Hair products are up to you. We would recommend avoiding anything that will create build up and be difficult to wash out. Also be aware that products that you used pre chemo could still cause you to have a reaction as your skin may have heightened sensitivity due to chemo – patch test first. A lot of our Pioneers swear by dry shampoo, particularly the ones that are coloured as they can help to cover up any greys and patchy hair loss that might occur.
Try to avoid heat styling. That means no straighteners or curling irons and if you want to use your hair dryer, use it on a cool setting.
Really it is about using your common sense and figure out what works for you. Be kind and be gentle and attentive to your hair and you will be fine.
13. Can I choose to do scalp cooling part way through my chemo sessions, or do I need to start at the first chemo?
We would always suggest beginning scalp cooling when you begin your chemo, but there have been cases where people have begun scalp cooling a couple of sessions in, and although they had no hair at all to begin with, they saw hair growth by the end of their treatment. It’s always worth speaking to your doctor or nurse. It is recommended that a paper theatre cap is used under the silicone cap in scenarios where there is little or no hair present as this will prevent direct contact between your scalp and the cold cap.
14. Are there any adverse side effects I should know about?
There are side effects that are associated with scalp cooling but these are all transient or temporary as they will stop when scalp cooling is stopped and the cap removed. These include chills, dizziness, headache and nausea.
There has historically been concerns about the safety of scalp cooling due to the potential of scalp metastases. The natural incidence of scalp metastases in women with breast cancer is approximately 1 in 4000, which has been shown to be about the same as patients who received scalp cooling and those who didn’t. There is no clinical evidence that cooling the scalp during adjuvant and palliative chemotherapy treatment increases the risk of developing scalp metastases. It certainly doesn’t increase your risk of getting cancer in your brain, which is one of the horrifying things someone once told us their doctor told them about scalp cooling!
15. I’ve been cold capping but have lost more hair than I wanted to. Should I stop?
We would always advise that you persist with scalp cooling. Keeping even some of your hair gives you choices, and that can be so important. It may sound obvious, but if you stop scalp cooling, you will lose any hair you have retained, and there are so many clever ways of concealing patchy hair loss or thinning. We also have lots of anecdotal evidence that people often experience hair re growth during their treatment. Our biggest aim is for people to be able to make an informed choice about what is right for them – if scalp cooling isn’t for you, no problem. But continuing with scalp cooling, even when the going is really tough, can be so very beneficial.
Our Pioneers often mention that retaining their hair during chemotherapy was important to them, but it really made the biggest difference once they completed their treatment. It meant that they could get back to looking and feeling like themselves a lot quicker, because they didn’t have to wait for their hair to grow out. It was once less reminder of cancer.
16. Where can I find out more information?
Our website is a really good place to start. There’s all the instructional videos, clinical trial data, testimonials from our Pioneers and all sorts of general information too.
17. Is there anywhere where I can talk to others who have done/ are doing scalp cooling?
We have Facebook Paxman Scalp Cooling Support Group – https://www.facebook.com/groups/PaxmanScalpCooling/ which is full of people from all over the world, who have scalp cooled in the past or are currently scalp cooling. It’s a wonderful positive community with so much collective knowledge. We know how powerful peer to peer support can be, so it’s a great place to start.
The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.
Sylvie and Danielle began Future Dreams with just £100. Since then we have raised over £6.5m. We couldn’t do any of this without you. Please donate, if we all act now we believe that by 2050 everyone who develops breast cancer will live.