Sharing advice on how to
care for your hair DURING AND AFTER
COLD CAPPING.

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We see so often on our Facebook Group see people saying that while they were happy with their hair retention, that they did lose hair ‘despite following all the rules’.

There is only one way to reply to this, and to anyone who is asking themselves what they did wrong – if you lose hair while scalp cooling IT ISN’T YOUR FAULT, YOU DID NOTHING WRONG.

Hair loss can occur for many reasons, which we will come to in a moment, but to be completely open and transparent there are very few things that you can do to cause hair loss while scalp cooling.

You haven’t lost hair because you washed your hair too much, you brushed your hair too much, you dyed it the week before you started, you used shampoo with a scent, you didn’t have a silk pillow case, you did yoga or swam, you didn’t cut your hair shorter or in fact the inverse of all of these.
The guidance we give around hair care is about making sure that you find looking after your hair during treatment as easy as possible and to make sure that the hair you do retain is in the best possible condition when you finish, giving you choices as you move on from chemo. None of this guidance will help you to have better or in fact worse hair retention. Our guidance is there to ensure that you can get the very best possible experience from scalp cooling.

The truth is that there are only two things that you can do to make sure that you are getting the best possible hair retention –

  • Ensure that you achieve the best, consistent contact cap fit that is possible for you. Watch our tutorial videos and make sure that you are familiar with what a good cap fit should look and feel like, and if you can, practice fitting your cap.
  • Make sure that you are getting the correct pre and post cooling times. Pre-cooling is really important as it makes sure that your scalp is at the right temperature before the chemo drugs are administered. The post cooling time is just as important as it makes sure that your scalp continues to remain cool while the chemo drugs are at their most potent in your body. You will find more detail on our cooling times guidance here.

So why does hair loss occur, even if you do have a really good cap fit. There are potentially a couple of reasons.

The first is the regimen that you are receiving. Some drugs are much harder on the follicles that others. For example, Taxol gives some of the best retention that we see with scalp cooling, you have around an 80% chance of retaining 50% of your hair, and depending on the dosage, this can be even higher. With a regimen such as AC-T (doxorubicin and cyclophosphamide followed by paclitaxel) you are looking at a 47% chance of retaining 50% of your hair. So, if you are looking at other people’s retention, and you see someone with an amazing head of hair, be mindful that they may not be receiving the same regimen as you. Try to set your expectations against those who are going through the same or similar treatment to yourself.

Scalp cooling doesn’t work for everyone. It’s something that we are working so hard on to improve, but even with the same regimen and a great cap fit, some people will experience more hair loss than others. It’s important to remember that everyone’s biology is different. Any medical procedure or drug administered will behave differently in each person, and scalp cooling is no different, it’s just that the difference is visually represented and therefore much easier to see.
We also know that some people are natural ‘hot heads’, which is often why hair loss is more common at the crown, the hottest part of your head. For scalp cooling to be effective as possible the scalp temperature needs to be reduced to between 18 and 22 degrees Celsius, but some people’s scalp just won’t cool to this temperature. At the Paxman Research and Innovation Centre we are working on a topical agent, which we hope will help to aid the further cooling of the scalp in these circumstances.

Even if you do get the perfect cap size for you, the shape of your head and the shape of our cap may not be a perfect match. There are over 100 head shapes in the world meaning that there is an enormous amount of variations in size, shape and proportion. When our cap was developed we did a huge amount of anthropometric testing, and the shape of the current cap was the best solution for the vast majority of people. We do know that there are ways that people develop to ensure that they are getting that all over fit, the most sensible of which is tying a scarf or bandages around the cap in any area you feel isn’t making sufficient contact with your scalp. It’s important that you take control of your treatment and do what you feel is right for you.

Something you should avoid where at all possible is any tension at the roots of your hair. Your hair is fragile during treatment and you want to be as kind to the roots and follicles as possible. So, while you absolutely need to be brushing your hair at least once a day (to avoid knotting and tangling, which can lead to unresolvable matting) go about it in a gentle manner, starting from the bottom then working your way up to the top of your hair. This is why you should also be avoiding blow drying with a brush, tight ponytails and wigs with clips that could create tension.

Finally, it is important to remember that shedding and a certain amount of hair loss is completely normal and an inevitable part of the scalp cooling process. It is just not possible to save every hair on your head from the effects of chemo. But scalp cooling is the only effective way of combating what more often than not would be complete chemotherapy induced alopecia.

It is up to you to define your version of what successful scalp cooling looks like. One person’s disappointment is another triumph, and there is nothing wrong with this.

 

If there is two pieces of advice that you can take away from this it would be the following –

As long as you are achieving the best possible cap fit and receiving the correct pre and post cooling times, then you are doing EVERYTHING within your power to retain your hair. Hair loss does not mean you did anything wrong and it is not a signifier of a personal failure.

Scalp cooling isn’t just about keeping your hair during treatment, it is also about encouraging fast, strong and healthy regrowth. Even if you do lose all of your hair (which is unlikely) continuing to use the cold cap will give you a significant head start on having a fantastic head of hair, which can take 6 months if you choose not to scalp cool.

 

Hopefully the above will put some worries to rest. Please know that hair loss is not your fault. No matter what you did or didn’t do with hair care, if you had a good cap fit and followed the cooling times guidance, there is nothing else you could have done.
Follow the guidance, treat your hair with kindness, but most of all, treat yourself with kindness.

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