August 2018 Ask the Expert: Cooling Caps for Chemotherapy Hair Loss
Hair loss is a common side effect of chemotherapy. It can have a strong effect on your self-image and emotions. Scarves, hats and wigs are easy and fashionable ways to cover up hair loss, but cooling caps – a technology that involves keeping the scalp cold during chemotherapy treatment – have been shown to lessen hair loss in some women.
For our August Ask the Expert, we hosted a live discussion on cooling caps with Mikel Ross, MSN, RN, AGPCNP-BC, OCN, CBCN and Jackie Toscano, RN of Memorial Sloan Kettering Cancer Center via Facebook Live. LBBC’s CEO, Jean Sachs, MSS, MLSP, moderated.
The questions and answers on this page are lightly edited from a transcript of the video.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
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Scalp cooling to limit hair loss during chemotherapy is a process by which cold caps, which are gel caps cooled down to just about freezing temperature, or machine-based systems, cool a scalp. They help patients getting chemotherapy to cool their scalp while they’re getting the chemotherapy. It reduces the uptake of chemotherapy at the hair follicle. It also reduces the metabolic activity –how much the hair cells are growing and dividing. That can minimize how much hair is lost during the chemotherapy process.
The process can depend quite a bit on whether you’re using a gel cap, or on which of the two machine-based systems that have been FDA approved in the United States [you’re using]. The bottom line is patients cool before [treatment] so that their scalp is cool by the time they actually get their chemotherapy. They cool the entire time they’re receiving chemotherapy, and then they cool for a period of time after the chemotherapy has been administered to keep scalp cool and the hair quiet, not growing, and not vulnerable to the chemotherapy for that period of time afterwards.
That is one of the considerations for the patient and the infusion centers. No matter what method you use, the pre-cooling, which is everything that happens in cooling the scalp down from regular temperature to the desired temperature [before treatment starts], is about 30 minutes. That’s whether you use the Dignitana machine, the Paxman machine, or a cold cap.
So [add] 30 minutes beforehand, then the entire time during chemotherapy – and that’s really driven by the chemotherapy you’re receiving, not by the actual method of cooling you’re using – and then afterwards there are different recommended cooling times of each of the three [systems: the Dignitana machine, the Paxman machine, or a cold cap].
Post-cooling times [the period of scalp cooling after the chemotherapy treatment is finished] can be as short as 20 minutes and as long as 4 or 5 hours. That’s variable based on the machine or the gel cap you’re using and the chemotherapy you’re receiving. It can extend that chair time, or your commitment to your infusion time, anywhere from an hour to 4 or 5 hours.
A lot of it has to do with the chemotherapies that we know have the greatest capacity to cause hair loss. Those tend to have longer cooling time.
It also has to do with the research that each of the individual providers of scalp cooling equipment has done. It’s not necessarily that other cooling times may not work. [Each manufacturer has] built a wealth of data and experience on what their recipe is, and that’s what they use moving forward.
There are ongoing studies to [look at reducing] the amount of time. In some cases when scalp cooling doesn’t work well for some of our more aggressive chemotherapies, [these studies] look at longer cooling times to increase success rates.
That’s one of the things we try to have a lot of discussion with patients about as they think about whether they wish to invest both their time and some of their resources in scalp cooling.
For breast cancer in particular, the mainstay of any treatment regimen in the early-stage, curative setting is either an anthracycline or taxane, or a combination of the two. Using the clinical trial data that was the basis for the FDA approval of both the Dignitana machine as well as the Paxman machine, we have some insight into those two types, and what one can expect in terms of success.
An anthracycline is something such as doxorubicin (Adriamycin, Doxil) or epirubicin (Ellence). A taxane is something such as paclitaxel (Taxol) or docetaxel (Taxotere). They exert anti-cancer activity in different ways. The anthracyclines tend to cause more hair loss than the taxanes.
From the Paxman trial that included anthracycline-based regimens, we know that the success rate with scalp cooling is not all that high. If you’re getting an anthracycline-based regimen, you can expect a success rate around 20 percent.
If you have no anthracycline in your recipe and it’s mostly taxane-based with maybe another complementary drug, success rates from two trials range in the 60 to 70 percent range.
Just like outcomes, cost can also be variable. It depends on which type of cooling you use, gel-based or one of the two machine systems. An additional wrinkle is which center you have your chemotherapy delivered.
In general most patients getting anywhere from an 8- to 12-infusion treatment can usually have their scalp cooling accomplished for around $3,000 to $3,500 – sometimes less, sometimes more.
If you use just the gel caps, you can rent those for $495 a month. However, because you have to swap the caps [during treatment], many people hire an assistant to help. In hiring the assistant, the cost goes up and becomes more comparable to the machine-based systems.
Paxman has a total out-of-pocket cost of $2,200.00 to the patient. However, different institutions are going to have an add-on to their facility fee, which will differ from place to place to place. I would say a ballpark figure is around $3,000.
Insurance for scalp cooling is spotty and variable. We have had cases where patients have filed [successful] claims. For example, Aetna has a clinical hair policy that supports scalp cooling. It becomes incumbent on the patient to try to pursue that, and it can be a tough uphill fight. Generally, the infusion centers will not bill insurance for scalp cooling like they do all other services. It really is something the patient does on the back end. Most of the time, unfortunately, scalp cooling is not a covered expense at this time.
There are a couple of providers. Penguin is probably the best known. There’s also Arctic Caps out there. They actually rent the system to the person, and you simply contact them through their websites. They ship the caps and everything you need to you, and provide recommendations in terms of the logistics of how to get the caps cold: to get your own dry ice, to get it in a cooler, how often to switch those during your treatment.
We always say we have no good trial data on someone starting scalp cooling midway through the process. That said, with the taxane regimens, for example, if you did not do scalp cooling for the first weekly dose, you’re probably going to be OK. But we just can’t tell you how much that’s going to decrease your outcome.
We talk to the person individually. I always say, it’s worth a chance. You need to know that the insult in hair loss that you’re going to experience from your last treatment cycle has not yet revealed itself [right away]. It’s going to take another 2 or 3 weeks. There’s no good data. If you do it very early on, you may have a chance to have some success, but that diminishes the longer you go on [without cooling].
Both Dignitana and Paxman have very good U.S. websites. The websites have search functions and also show all the locations where their particular machines are available.
The last time I checked, which was about two months ago, over 200 infusion centers use and have available a machine-based cooling system. Over the last year that I’ve watched, that tends to grow by maybe 20 centers a month.
Absolutely. That’s how we got our start with scalp cooling here at Memorial Sloan Kettering. We started allowing patients to cool with the gel caps before either machine was FDA clear. We view all of the methods as equally efficacious [effective]. There’s no data to suggest that one’s better than the other. It really comes down to what’s available, logistics, and patient preference.
That’s the thing that really held scalp cooling back in the United States for 40 years, while it was being utilized and became somewhat standard of care – at least widely available – in Europe and Canada.
What are the two main concerns in terms of safety? First, there was always the concern that if you’re cooling this part of the body you’re going to create an opportunity for a cancer cell to take root and create what we call a scalp “met” [metastasis]. That just means a site of cancer in the cranium or in the skin of the head.
To date, those theoretical concerns have never been proven by the data. They still exist, but they’ve never been proven by the data. In 2017, Hope Rugo, MD of UCSF [University of California, San Francisco] published a retrospective literature review as well as an analysis. They found that in about 1,500 patients who cooled and around 1,500 patients who did not, the rate of scalp mets was less than one percent. There was no statistical difference between the two [groups].
When I and Erica Fischer-Cartlidge, MSN, CNS, CBCN, AOCNS did our literature review, published in 2017, we also found the same thing. Scalp mets are very rare.
We have people at Memorial Sloan Kettering that took a little bit of time to feel comfortable that scalp cooling was OK, but we’ve gotten there. Ultimately, most clinicians consider themselves to be very data-driven. When you have 40 years of data that does not back up the concern, at some point you have to say, all right, that’s a concern that just didn’t pan out.
A patient could certainly go to another provider. They could also advocate for themselves. That’s just part of what may happen. It will take time to convince hearts and minds.
When we first started talking about this [at Memorial Sloan Kettering], I reminded clinicians that a radical mastectomy was once considered standard of care. We don’t do those anymore, almost never. But 25, 30 years ago, we did them routinely. Data evolves, clinical practice evolves. This is just another example of where practice evolves based on data and experience.
If you look at the two machine-based manufacturers, Dignitana recommends a very complete saturation of the hair. Paxman recommends more of a dampening of the hair. Both feel that that is the way they conducted their trials and the way their patients have used the process. Once again, we see equal outcomes. We tell people whichever machine they use, or if they use gel caps, to follow the manufacturer recommendation.
They’re silicone caps that get very cold and are right on the scalp. It would only be fair to say that in the trials and in our experience, anywhere from 5 to 8 percent of patients stop cooling, not because it isn’t working, but because there can be a lack of comfort.
Ms. Toscano: For most people, the temperature takes a little bit of time to get used to when you first put the cap on. They can definitely tell it’s very cold as soon as the cap connects to the machine. I would say it takes about 10 minutes or so where the patient may experience some slight discomfort, just because of the cold. It’s adjusting to the body temperature, and it’s adjusting to the patient. Once they’re past that 10-minute period, it becomes a little bit more comfortable.
There are many, many recommendations out there, very few of which we feel are relevant and supported by both science and experience. Do things to your hair that will be gentle, but not things that will be insulting. Use gentle shampoos, and not harsh curling irons, not harsh permanents, not harsh dyes. There are websites that list hundreds of recommendations. We have only about 10. Really, it is: be gentle to your hair, don’t get it hot, don’t get it tangled, don’t dye it, don’t perm it. Other than that, you’re good to go.
The patient has to wear [the cap] for a period of 30 minutes where they pre-cool. In that time, the nurse would probably get the IV started and do any pre-medications before the actual chemotherapy drugs are delivered. Any anti-nausea medications or anything that’s required for the regimen will go during that time.
They remain on the system for the entire chemotherapy infusion or the chemo drugs infusion. Then based on the regimen, and based on what the system used recommends as the post-cool, they’ll remain hooked up for some time.
After, there is a period where, once they’re completely done, the nurse will disconnect the cap from the machine, and we take the outer cap off. It’s recommended to leave the inner cap on your head for about 10 to 15 minutes, to let the hair and the cap come back to temperature so we can safely take it off without removing any hair.
I see a lot of people who are very spirited, and they are very interested in trying it when they first come in. It becomes a learning process. The very first time can be a little frustrating, and it can be difficult. For Paxman, I know that the patient is able to practice putting the cap on once they get the equipment delivered to them. Once they get to the center and to the infusion room, they know how to put the cap on their head.
As a nurse, I make sure that the cap is on correctly and that every hair on the hairline is covered. Most people end up happy that they’re able to go through this process, and that they’re able to keep some of their hair.