Keep your hair during chemotherapy

 

Hair during chemo

 

I would like to thank my very dear, very gifted and very generous niece Élie who kindly offered to translate this article. Élie, you’re wonderful !!!

La version française de cet article se trouve (cliquer sur le lien qui suit)  Garder ses cheveux en chimio

 

HOW TO … KEEP YOUR HAIR DURING CHEMOTHERAPY !

 

In spite of the usual images spread by models meant to represent cancer patients, you are not sure to loose your hair after a chemotherapy. It all depends on the kind of chemotherapy undertaken. Because of the protocol, it is more likely that you shall bear alopecia-inducing products such as Taxol if you suffer from a breast or ovarian cancer. Let’s admit this is not fair: first of all, your femininity is tackled by your organs, and you are then supposed to sacrifice your hair. After all, “alopecia”, which refers to the temporary loss of hair, whether it be partial or complete, comes from the Greek “alôpêx” meaning “fox” because those beasties lose their hair every year. But who wants to take after this characteristic?

Guess what? Even with Taxol or such fox-like products, you can now keep your hair. Scoop! I am the living proof that you can. Indeed, after 2 Doxorubicin intravenous drips, 9 of Taxol and again 6 Doxorubicin ones, I have not lost my hair, even partially. I shall even add that in spite of the advice I was given, I did not cut them before this marathon. Why cut them? They might either fall or not, but do not cut them! They were medium length and actually remained so. How is this hair regularity possible? By wearing a cold cap – that kind of beany made of a material containing a chilling gel keeping your head cool – and by sticking to the method. I will detail it in this article, since applying it rigorously is the only way to keep your hair undamaged. The idea is very easy: this cold cap refreshes your small blood vessels so that they tighten, and the chemotherapy does not reach the hair bulb. Obvious, isn’t it? The only thing is to chill your crane properly, before, during and after the chemotherapy: this is the trick.

Shout-out to all the forums and patients that first led me to that discovery, to the doctor who allowed me to use it, to the hospital that bought it, to the smiley nurses who set it up – may they acknowledge my eternal admiration and gratitude: I will never give them enough thanks for the comfort this innovation provided me. Before that, many famous professors and doctors had argued that I would lose my hair and, as I would refuse the treatment protocol, tried to convince me that my concern was a loss of time. It must be said indeed that cold caps are expensive, and their installation requires a lot of staff who already tend to be exploited. That’s why some hospitals pretend to ignore that they exist, or even discussed their efficiency although they do make money thanks to patients and chemotherapy treatments. Nevertheless, that case seems to be improving since many recent articles have been highlighting the positive effects of cold caps whereas they were still very scarce by 2016.

I will first explain what I’ve just phrased by giving a few examples (I, II, III) and I will then give details of the method I used to get the maximal effects (IV). If you don’t want to read it all, you can obviously select the part in which you are interested by referring to the colours.

I. Keep your hair on ! A review of the least convincing arguments you shall be given on handling hair loss

1. « It is normal to lose your hair », meaning : at least you’re being kept alive

When you are beginning a chemotherapy, an alopecia treatment is most of the time planned to help you downplay the consequences of your hair loss, not to actually prevent your hair from falling out, although the method depends on the status and personality. For example, an almost-bold famous professor would carelessly declare in the middle of a sentence: “Of course you will lose your hair”. What could you answer? You would expose yourself by protesting, and then you would realise that your fear to suffer from alopecia is not only underestimated but even swept away with a tone of indifference tinted with disdain: what’s important is the treatment that will save you – which, in my case, was not even sure, a simple gain of time without hair, but it really was important to ask questions to reveal these unsaid truths.

As for all those male friends who are dying their hair and eating all kinds of medication to improve their hair density, they did their best to be comforting but were not convincing.

2. You only don’t know that you don’t care about losing your hair !

Another method was the psychologist’s, influenced by many theorists, arguing that being afraid of hair loss is a hidden aspect of your fear of death. Is it? What’s wonderful about psychoanalysis is that you are always impressed by new discoveries about yourself. At least you won’t get bored: you first knew you had troubles with your first self and you now discover a second self you know nothing of! Actually I didn’t feel I was scared of death (just an experience more, as Montaigne would say, “if one’s been able to live constantly and quietly [in my case: if I had been able to survive!], one will die in the same conditions”). I was indubitably afraid to lose my hair though, and more generally I was scared about suffering both psychologically and physically: I’d even have preferred to die immediately so as to avoid that painful mix, and had gotten in touch with a Swiss organisation that would have put an end to that process. I have an infinite respect for those women and men who do not pay attention to their hair loss, but I have to admit I’ve never been able to be that detached: for me, that was the beginning of the end. Just as Samson, I could imagine losing my strengths when seeing my bald face every morning, when I actually needed all my energy.

3. Limits of the arguments neglecting/downplaying the psychological impact of alopecia

I suspect some doctors and psychologists of trying to downplay the impact of alopecia without even believing what they say. When I worried about losing my hair, the first question asked was: “Is it the main topic you’re worried about?”. That person did know what my anguish was about! They offered a solution to the problem: a wig, partially paid by our social security system. Well that actually means it is hard to go out as bald, even though the Egyptians shaved their head to brag about their artificial luxury hair! Yet the Versailles courtesans’ wigs progressively disappeared to be replaced by their natural equivalent: the real, natural hair everyone talks about, even in the chemotherapy clinics’ waiting rooms.

Indeed, you will find two categories of magazines: the first one showing all kinds of wings, new ways to tie your headscarf, how to wear a hat/a cap/a fascinator, and the second ones you already know about: those you can find on the newsstands. What a torture, how sadistic! “How to style your hair in the summer? How to rescue hair post-summer? Ten back-to-school hairstyles! How to wear braids/plaits/a ponytail/bunches/asymmetric hairstyles? Ten winter hairstyles! The most fashionable hair colours this season, the must-have products to preserve your colour”, and so on. At the end of the day, how can you even be bald?

What about men? Contrary to a common belief, it can be a real trauma for men to lose their hair; becoming bald from one day to another, if not an open trendy choice, shows the presence of cancer, and it is hard not to feel like your give up on your identity when your very image strikingly reflects that of a cancer patient. Nor is it possible to counterbalance your baldness with brows, eyelashes or a beard: cancer treatments make them disappear too. Now men are also disadvantaged: contrary to our ladies who are encouraged to paint their face, fashion does not allow them to wear makeup. I love Ronnie Wood’s courage to publicly stance that he had refused chemotherapy because he wanted to keep his hair. Rock’n’roll!

And yet, if you want to have a cold cap treatment, you should know what you could be told by people trying to discourage you.

II. Cold caps and their opponents

1. Because of cold caps, you run the risk of a brain tumour

If you do have a brain tumour, you cannot actually wear a cold cap. What if you don’t? That’s the reason some doctors highlight so as to criticize and even forbid cold caps: you could get metastases in your brain, they say, if the treatment does not get to it. This was my aunt’s opinion, last year; she then died of cancer, without any kind of hair: indeed, the cancer did not get to her brain cells, but it did not spare her life and she spent a long time crying because of that hair loss. I have already written about her wise oncologist. And by the way, if cold caps did increase the risk of getting brain metastasis, how can you explain it is allowed in some hospitals?

2. Cold caps don’t do the job !

As for those arguing that cold caps are not efficient or won’t work in your case, they often come with strange opinions. For example, a friend of mine was told that she would lose her curly hair with a cold cap. Really? If you put water on your hair before you wear a cold cap, are they still curly? I’d love to see that! Please show me some pictures of wet curly hair! (have a look at the method below, part IV).

Another answer was: “Of course Nathalie, we do have cold caps!” (suggesting “Who do you think we are? We aren’t cruel idiots, are we?”). still, in that clinic, I could only see bald or bewigged women. I got twice more suspicious and asked a nurse: “You’ve got cold caps have you?” her answer was a slight, quite unconvincing nod. Going on (I might have missed an investigator career): “How many?”. “Two”. No comment: that is not even enough for one single person, now figure it out for an entire hospital. Last piece of information from our nurse: “Yes, well, since they don’t do the job, we didn’t order more!”. Do you think your chemotherapy shall do the job if you get half the dose and miss the sessions?

Fortunately, newspapers have recently spread serious medical studies in favour of cold caps; click here if you want to read the scientific study.

3. You can’t stand cold caps !

It must be said that having a frozen thing around your head is hard to stand; plus, that thing is heavy. But I think it belongs to the patient to determine whether they prefer to wear a cold cap or to lose their hair.

I tried to find the cold cap’s weight on the net, but it is not mentioned. That’s why I called the company and checked one of mines (on the picture above, without the fishy smell): 1,8kg (i.e. 4 lbs).

This discomfort can be overcome by letting the cold cap against a pillow. No worries: as soon as the device will be on your head, it will mechanically find the nearest place it can lay on. So that’s with problem number 1.

To be honest, the most uncomfortable thing about cold caps is not their weight but the cold. Can you believe that if you get to stand that intense cold for a few minutes, it will end up anesthetizing you? Indeed, the discomfort first increases and it disappears after 15-20 minutes (judging from my experience). The more I went through treatments, the less I felt that “ice cube” effect (or maybe was it my freezer going downhill, which could also be the case…).

Anyway, cold caps do have to face explicit opposition, but are these the only one restraining its usage? Indeed, even though only few patients had one, the invention is quite old. So let’s think about the material and budget constraints in oncology and the possibility of changing people’s visions towards that (very modern) technology.

III. Cold caps : an old invention neglected due to budget constraints and common representations… that might be about to change : shoutout to technology !

1. Cold caps were invented long ago to preserve our hair

Cold caps date back to a few decades. One of my neighbours once asked how I had miraculously avoided wearing wigs or headscarves; when I explained her that strategy of avoiding the chemotherapy products to get to the hair bulbs by forcing the veins to tighten, she already knew it. The mother of a doctor she knew had experimentally used a cold cap in Nice, in 1996. She hadn’t lost her hair. Even better: when I told one of my aunts (who survived from cancer) that I had to fix on my head a terrible frozen cap, she remembered a Swiss press officer who had mentioned it in Geneva, in 1988 or 1990, that is, thirty years ago.

What’s crazy about those two talks I had is both the fact that they show that the process dates back to thirty years (THIRTY years!) and the fact that none of them had thought of telling me about that method to preserve my hair before I almost lost them. They did not even think of it, since the process seemed unusual and unreliable.

Even nowadays, even though a few articles appeared on the net, most patients are still convinced that they can’t avoid losing their hair in their chemotherapy treatments if they are given alopecia-inducing treatments. In the last two months, three people I know started a chemotherapy treatment in a clinic heavily and abusively praised by local diaries, yet no one in that ever-praised clinic offered them any cold caps, as if they didn’t exist. Conclusion: two women have already lost their hair. Today, my neighbour who has been knowing about cold caps since 1996 told me that her hairdresser had just shaved a woman crying about her hair loss. She didn’t know about cold caps either. What a shame!

They might answer that this situation is due to budget issues. Are you sure it is only about budget?

2. It is all about funds and financing, and yet…

It is true that those cold caps are expensive (from $250 to $350 depending on the brand) and that they also give additional work to the nurses in charge of changing them. I have to admit this has always made me uncomfortable, all the more so because they always smiled and efficiently accomplished this extra task. They have my respect!

That’s why some hospitals get to offer cold caps treatments and according to my experience, those hospitals dedicated to their patients are not the richest ones but those committed to preserving human values. Is there still a place for them in those huge hospitals where everything – from patients to doctors – is made to be bankable? Paradoxically, the richest hospitals are also those offering the fewest cold caps.

The glossy display of some anti-cancer clinics is striking: a tidy reception, amazing buildings, a glamorous leaflet highlighting the “healthcare facilities”. But how many cold caps? Zero. Coming back one year later, while you’re being given some coffee and biscuits (really!), I was amazed at the recently painted walls, new furniture, the new floor and even the building that had just been erected. How many caps (except the construction workers’ ones!)? Still zero. The newspapers, internet, the parallel universes are all praising this new gigantic facility that is trying to eradicate cancer and that is expanding as quickly as the latter thanks to millions and billions euros from different sources, both public and private, amen! (yet the word “investment” that is used to describe these funds do not show any kind of disinterested generosity!) And yet, how many cold caps? Zero, over and over again!

For this reason, it seems that the absence of cold caps is rather a budget choice than a complete lack of funds. Another example could show it: the new chemotherapy caps are very expensive and yet often bought by modest hospitals.

3. Cold cap linked to a refrigeration source as a new option: the start of a mind shift ?

Recently, a few hospitals – not necessarily the richest ones – have been acquiring a modern version of the old cold cap, that is linked to a refrigeration source: we now have three or four of those in France (Lyon, Lille and Nîmes). Again, its price shows that hospitals do not always go for the cheapest equipment: more than $60 000 according to some journalists. The same kind of facilities would only be worth $20 000 in St-Brieuc (which bought three of them). Where does this gap come from? The first modern cold cap facility seems to come from a charity, and the second one (in Saint-Brieuc) from La Ligue contre le cancer (i.e. the main organisation raising funds for cancer research in France) et Roche (i.e. a French cancer research company).

Why choose this modern cold cap, when an old 300$ cold cap is sometimes said to be too expensive? It is true that you need about 5 old cold caps to prevent alopecia, so that the treatment for one single user finally reaches $2000. Even by multiplying this by 2 (the 60 000$ facility can be used for 2), it is still more economic to go for the old cold caps. Even if we add the extra freezer that is needed to freeze them, the price is still inferior to the new process.

Is buying the modern facility better than the old cold caps because they do not require much time from the staff? Maybe, but another possibility would be to ask volunteers from cancer charities to help changing the caps. It is also said that the old cold cap is more comfortable for the patient, which could be right. What’s striking here is that the 50 000$-system was called… DigniLife, which shows a shift in our vision of alopecia. The modern cap linked to the refrigeration source was called DigniCap. Here is the subtle meaning: thanks to our DigniSomething, your dignity is safe because you keep your hair.

What a brilliant wit and/or what a big commercial hit! How daring to claim that alopecia is analogue to a decline, when until 2018 you had been told that baldness was not a problem except for you, suggesting that caring so much for what’s on the top of your head is a proof that there’s little inside… Let’s see how these new cold caps try to appeal to the most heartless financial managers.

A short essay on comparative semiology

Traditional cold cap Modern cold cap linked to a refrigerating source
– Old – New
– Craft – Cutting-edge technology
– Some woman pretends… – Experts!
– Random – Studies and statistics
– Too much work for the staff – 1 clic, that’s magic!
– “So what, you’ll wear a wig!” (a cabaret fantasy) – Lexical invention displaying ethics concerns: DigniLife, DigniCap
– between 250 and 350$ for the cap – 60 000$ for your dignity
= Too expensive, let’s forget that (and forget your hair too!)  = We can do it, we are so strong, MANY ADS! PRAISE US!

 

Yet, and even if that might temper your enthusiasm, I wonder how the patients will do when they go to the toilets (break in the cold chain, given the very light quantities of liquids…) and the result when the chemotherapy is over: how can the patient’s head remain cold if they immediately have to let the cap for someone else? The alopecia-inducting products will still be in their veins and it’s very important to keep the cap on your head after the chemo session (see method in my fourth point).

Conclusion

I’ve just shown that there is indeed an issue about funding in oncology, but it could also prove useful to question the opinions that shape our views on the possibility to buy cold caps. Choices in oncology are conditioned by a sum of ideas among which “innovation” and “high-tech” are overrated. In a few services, human values still exist, and cold caps were pragmatically bought; but the others will most likely attempt to avoid alopecia only in case hair loss undermines their corporate image, and in case this technology allows them to attract more bankable patients.

I will personally be delighted when our society stops regarding alopecia as the inescapable result of chemotherapy whereas it can actually be avoided, and I truly hope that the choices made in oncology will change under the pressure of the media and transformed patients. Appearance is but the tip of the iceberg: the underlying problem is that of self-esteem, whose importance in forgetting about the illness and overcoming it is capital.

This could lead us to open another debate: that of neurologic integrity after intravenous chemotherapy. Contrary to a widespread opinion, hair does not always beautifully grow back after chemotherapy, and lashes and eyebrows can also take a while before they get back to their former vitality. So what about our brain, which is also supplied by intravenous medications? Wouldn’t it be wise to protect the patients from those after-effects with the cold cap? The impact of harmful medications shall disappear when cancer is cured within a few months… what if it isn’t?

IV. The method to keeping your hair with a traditional cold cap (for example on the picture above)

1. Foreword

Prerequisite regarding your situation:

  • You do not have brain/head tumours or metastasis.
  • You do not have neck problems: the cap weighs about 1,8kg and it is frozen.
  • The infusion does not last more than three hours because it is barely impossible to wear a cap for so long, bearing in mind that you have to keep it after the infusion.
  • You receive an average dose of chemotherapy product.

About cold caps:

  • They are very cold, that is they have been in a -25° freezer for at least one night.
  • You need numerous cold caps to alternate every 30 minutes maximum (35 minutes if they are very cold, 25 minutes or even less if they are not or if you are in a very hot area).

For your own comfort and organisation:

– Make sur you bring a thermos of hot beverage if the hospital does not have a kettle. You quickly get cold when wearing a cold cap!

– Bring scarves: I didn’t wear them around the neck and used them around the cap to make sure it was close to my head.

– Bring warm clothes, for example cardigans or fleece jumpers.

– Take a few sheets and a pen or use your smartphone to note down the time you have to change your cold cap.

2. Before you start chemotherapy

Ask the nurse the time when the alopecia-inducing chemotherapy product is due to be released into your veins and write it down. Let’s say that she tells you she will release Taxol at 11:20.

– 30 minutes before that, wet your hair; you can use a spray. Let’s say that you wet your hair at 10:50.

All eyes are on you: enjoy this moment of glory to ask a nurse if they can bring your cold cap.

– You thus get your cold cap 20 to 25mn before the alopecia-inducing product is injected; place it on your head making sure that it properly adheres everywhere. I always wrap scarves around to prevent air pockets. Following our example, it is now 10:55 or 11:00.

You’re all set! Now let’s pray that it will come off well! Don’t fall asleep although premedication might cause somnolence. If you have somebody with you, ask them to wake you up if necessary.

3. During the alopecia-inducing chemo

Change your cap every 30 minutes, and even less if you feel that it is no longer cold (if they gave you one straight from your neighbour’s head, if they installed you close to the heater, etc.). You can wait up to 35 minutes if the cap is really frozen (i.e., it spent the night in a -30° freezer that remained closed).

4. After chemo

Don’t remove the cold cap at the exact moment the nurse pulls the injection off. When drinking alcohol, do you stop feeling the effects as soon as you put your glass down? Not at all, and the alcohol rate is highest 30 minutes to 1 hour after you have drunk. One limit to this comparison: chemo goes straight into your veins, thus it also gets off quicker. The time it takes for your body to flush it out is an enigma. No doubt it also depends on the type of chemo, the doses you receive and your metabolism.

– As a precaution, it is strongly advised to keep your cold cap up from 2h up to 3h after chemo.

How can I do that? you’ll ask me.

– If you have enough money, you can buy many caps (you can find one for about 200€ on Internet), you go with one of them on your head and you store the others in the freezer so that you can change as soon as you come back.

– If you have less money but you are talented, you can buy one cap only and numerous bags of frozen peas. Put the peas in another bag and give it a round form. Place your creation on the top of your head and do your best to make it hold: scarves, hats, etc. This is not a joke and I know two people who used this method; one of them even said that the bag can be kept 40mn before it gets warmer, which means you could keep it longer that the cold cap. The first said they have never lost their hair, the second said they started losing them by the end of the last treatment, but I never noticed.

– You really do not have money to buy even one cold cap: you can deploy your speaking skills to convince the centre that they lend you one, ask for a Christmas present in advance, borrow 200€, etc.

I hope this article kept you interested, and I can’t wait to read your ideas, comments, etc. In case cold caps didn’t work in your situation, please specify the method you used (did you use the method above?), the chemo products as well as the doses you were given.

To contact me, please use this form :

https://cancer-toujours-en-vie.com/contact/

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