Some chemotherapy drugs do not cause alopecia (hair loss), but some others unfortunately do, and the problem is that in your combo of chemo drugs you will usually receive at least one of those uncompassionate drugs. But ask your oncologist if the medicines you are going to receive will cause this frightening side effect, because, you never know… You might get lucky!
When I heard that there was a system in place that could help preserve my hair while receiving chemotherapy, I thought that those were the greatest news ever (ever since I was told I would receive chemo), and it was clear that I would do everything in my power to keep my hair in place. I actually think that if this illness didn´t make your hair fall, it would be quite bearable to live with.
The method of Scalp Cooling or the “Cold Cap” can be an effective way of fighting chemotherapy-induced alopecia. It works for some patients, but not for many. It will depend on the type of chemotherapy you are receiving, but, in my experience, it also depends on factors such as how much hair you have originally.
Many people think that the more hair you have to start with the better the result will be, as if you lose some hair, you will still have some left. Of course this is a logical true, but I found that, if you have a lot of hair, this might actually work against you, making it very difficult to keep it. Why? I had so much hair to start with, and it was so thick, that it prevented the Cold Cap to properly touch my scalp, and this factor would indeed affect the temperature your scalp reaches during the process.
In any case, if you decide to use it, don´t keep your expectations too high, as it can be really disappointing when you see your hair (maybe all of it) falling in big bunches in front of your incredulous eyes, after having had big faith into this promising system.
What is Exactly Scalp Cooling?
It is the only chance to keep some of your hair during chemotherapy.
Approximately 90% of our hair follicles are in the Anagen phase (growth phase), and chemotherapy drugs, which aim to destroy fast-dividing Cancer cells, will then attack these follicles as well, producing hair loss two to four weeks after receiving the specific medicine.
The only way this chemo side effect can be lessened is by using the Cold Cap, which works by reducing the temperature of the scalp by a few degrees. For this method to work, the reduction in temperature should start before receiving the drug, and has to continue during the infusion, and after finishing with it; so this would mean a total time of up to three hours wearing the cap.
Because the Cold Cap reduces the temperature of the scalp, it also decreases the blood flow to the hair follicles, and, therefore, reduces the toxicity of chemotherapy in the scalp, which may minimise the hair loss (there will always be some hair loss).
For Scalp Cooling to work, scientific studies have indicated that the scalp needs to reach a subcutaneous temperature below 22°C, and an epicutaneous temperature of 19°C (this means on the skin). Therefore, the level of success is determined by how well the scalp temperature is lowered and maintained throughout the treatment period.
Even though in the Paxman website they assure that “the Paxman cap has been specifically designed to help achieve this”, and that the equipment “has been scientifically tested to prove its effectiveness”, I can assure that my scalp wasn´t that cold.
In my case, either the machine I used was not set up properly (although the nurses guaranteed me that they do not have to set up anything, but just click a bottom), or my hair was too thick to allow my scalp to reach such temperatures. In any case, make sure the machine is set up properly, and also that you are using the correct cap size.
Who Can Use it?
Patients with solid tumours, who are treated with chemo drugs such as taxanes (i.e. Docetaxel/Taxotere/Taxol), alkylating agents (i.e. Cyclophosphamide) and/or anthracyclines, (like Epirubicin/Doxorubicin or, most commonly known, as The Red Evil).
All of the mentioned chemo drugs target rapidly dividing cells, which results in hair loss, and all of them are used, for example, in the treatment of Breast Cancer.
However, it is important to know that there is a higher chance of losing your hair with drugs such as anthracyclines (you´ll receive this if you get the FEC or AC combo), than with taxanes (part of the TCHP or THP combo).
In The United States and other countries the use of Scalp Cooling can be very expensive and it isn´t guaranteed that you will save your hair, so to use it or not could be a tricky decision.
Find out what chemotherapy drugs you are going to receive and in what dosage, and use this Decision Making Tool to help you decide whether you should give it a go or not.
In England, even if it´s completely free, you won´t see anyone trying their luck with Scalp Cooling, as it can be very uncomfortable, and chemo is already distressing on its own. I used it, and everybody looked at me with pity, probably thinking that I had some type of aggressive brain tumour, as I was wearing such a bizarre helmet during my chemo.
Paxman Cold Cap
For starters, oncologists, surgeons and nurses do not even tell you about the existence of Scalp Cooling. Not even when I was diagnosed, and I expressed deep concerns and sadness for losing my hair to chemo. They were unmoved, and mute about the existence of Scalp Cooling. I only found out when one of my sisters told me about it. Then, I asked the English doctors and they said with a monotonous and sad voice: “Yes, we have lots of machines. You can try them, indeed. That is not a problem.”
It is funny how concerned I was about having a Cold Cap on the day of my treatment. I even went to talk to the nurses in advance to book a machine, but they didn´t bother themselves, because the hospital has about 12 machines, and they know that nobody ever uses them!
Now I know that my doctors´ lack of enthusiasm was because I was going to receive the strongest chemo drugs available (FEC+THP). The probability of Scalp Cooling working for me was of only about 20%. The doctors didn´t want to kill my hopes, but I would have preferred to have the full information, to be honest.
Are there Side Effects?
Sure there are. There always are.
- Extreme discomfort in your head, forehead, cheeks and chin. After all, you are wearing a very tight and super cold cap, and another one covering that one. It is not pleasant to have such tightness in the head and around your face, especially if you have sensitive skin. After finishing, you might have marks all over your head and face for hours. Even my chin was painful.
- Headache. This could happen from the very beginning, but for me it hit me after finishing the treatment and lasted until the next day.
- Dizziness. During Scalp Cooling and after. I was dizzy for a couple of hours after finishing my treatment; like I-have-drunk-two-bottles-of-wine dizzy.
Those side effects are temporary and usually only happen during the Scalp Cooling process. Some patients, though, could experience other rare symptoms such as:
- An allergic reaction to cold temperature, which could result in bruises on the skin.
- There is also a risk that scalp cooling could provoke an anaphylactic reaction, which can be life-threatening.
- Scalp Cooling could also cause a form of anemia due to the abnormal breakdown of red blood cells in the blood vessels.
Scalp Cooling, when used on patients receiving chemotherapy for breast cancer, could lead to scalp metastases, which is a bit scary.
The risk of getting scalp metastasis in women is low (2.5%), but it is still a risk that you should be aware of.
Who Discovered Scalp Cooling?
In 1950 in Huddersfield (UK), Eric Paxman (father of Glenn, current chairman of the Paxman company) invented the beer cooling system for breweries. During the next 30 years, the family has been perfectioning cooling products and systems.
The Paxman Scalp Cooling System (or ‘Cold Cap’), was designed using the family’s refrigeration expertise when Glenn Paxman’s wife began losing her hair after receiving chemotherapy. She was treated with an early version of a Cold Cap, but unfortunately the therapy didn´t work for her. Glenn, then, developed a system that worked for some women.
After years of research and development, Glenn and his brother Neil built the first prototype of the Paxman Scalp Cooling System in 1997. After this, hundreds of Cold Cap systems were developed in different countries.
However, many users agree that, although the Paxman System is pioneer of Scalp Cooling, it is not the best in the market. Paxman´s caps are often criticised because they only have three sizes available, and these do not adapt to everyone´s head very easily, whereas other brands such as Dignicap are said to work better (they have four different sizes), so if you live in the US I would definitely recommend Dignicap.
In my experience, the smaller size of Paxman was perhaps too small (I had a wide area of hair, that this small cap could not cover), but the medium was too big for me, and would not touch my scalp, and believe me: you need the cap to touch your scalp, as if not, you will have bald patches in your head. In such cases, Paxman recommends wearing a medium cap and a smaller one outside, to make the gel cap closer to the scalp. However, this is far from ideal, and it reminds me of clothes-customers´ struggles to fit into a S/M/L size, in any shop from the High Street. It is just wrong that Paxman commits the same mistake, because, after creating this great technology, it seems dreadful that they fail to deliver, over such small details.
It would not be that hard for them to create an extra size, or a couple more, really.
How Much Does it Cost?
If you live in the USA let me tell you that I am really sorry about that, as I find it disgraceful that a patient has to pay for Scalp Cooling. In my opinion, the pharmaceutical companies that created the chemo drug should be paying for this service, as alopecia is one of their drugs´ side effects. They make so much money out of these harsh drugs, so why can they not pay for Cold Caps? They should be included in their sale package!)
I also find it sad that a company or a hospital makes a profit out of such a situation: a Cancer patient trying to save a bit of… dignity, as the same name one of these companies chose for themselves indicates. It is especially shameful, when they did not even invent this technology themselves.
The Paxman system is also present now in the US, offering a pay-per-treatment option, same as Dignicap does, so if Scalp Cooling doesn´t work for you, you can obviously stop paying/using it.
The cost is different in every company and hospital, and the insurance companies do not cover it. It could cost about $1,500 to $3,000 (depending on the number of treatments you need), or $300 per treatment with the weekly drug Taxol. With this specific drug the patient could need up to 18 treatments, but apparently, in some places, it becomes freen after ten treatments.
In other places it would require you to pay a $500 fee for the cap, and then $200 per cycle; and there are places that, instead, charge a fee of $500 per month. It totally depends on the place you are receiving the treatment.
Find out more about the cost here: https://dignicap.com/cost/
In the UK the Paxman system is absolutely free for the patient, as NHS provides this service free of charge (God bless the NHS, the Queen or whoever was behind this idea).
I used it twice and I had more faith in it than I had in God at the time, but unfortunately, on the day of my second chemotherapy cycle my hair started falling in massive bunches, and continuously (twice per day when I would comb it), for a period of 12 days approximately. Scalp Cooling did not work for me whatsoever, as I only kept a 5% of all my hair (and I had so much).
The very first day my hair started falling (on day 21 after my first cycle of chemo) this is the amount I would get.
After two days of that, I would had massive amounts of hair shedding twice per day for 12 days!
This was just a normal morning for me:
I could have donated it, but I had so much faith in the Paxman Scalp Cooling system…
Would I recommend Using Scalp Cooling?
It depends. If it was free, I would definitely try it, as you have little to lose (just to be uncomfortable for a few hours). But to pay such a high fee for a system that might work and probably will not… is another story.
If you don´t mind about spending that money, then go for it, of course. But if you unfortunately have to care about the money, then, use the Decision Making Tool and see what are your chances of preserving your hair.
Remember that, if you are going to receive weekly Taxol (instead of Docetaxel/Taxotere), and if you are NOT going to receive FEC or AC at all, then, I would say that you have a good chance of keeping a decent amount of hair.
If you Decide to Use it
On the day of your chemo bring a wide-tooth comb and a spray-bottle with conditioner mixed with water. The nurses will provide you with a towel.
About 15 to 30 minutes BEFORE receiving Epirubicin/Doxorubicin or Docetaxel/Taxotere/Taxol place the cup on your head and start the cooling process. If your hair is really thick, then allow 30 minutes, but in most of the cases, you will be ready after 15 or 20 minutes. It feels really weird at the beginning, but you normally get used to the cold after about 15 to 20 minutes.
The infusion will last for about half an hour to an hour (depending on the chemo drug and your size), and you will need to keep the cap for up to 90 minutes after finishing the infusion.
In many websites they will recommend you to be patient with the treatment, and understand that there will always be shedding, so keeping 50% of your hair is already consider a success. If you lose 75% of your hair but you don´t mind to keep on using the Cold Cap, then hair will grow in between treatments, so it is really up to you to continue with the treatment or not.
I really hope that you have success, if you decide to give the Cold Cap a try.
Have you used the Cold Cap? Do you want to tell your story?