Dr. Steven Isakoff is a medical oncologist who serves as associate director for clinical research at the Massachusetts General Hospital Cancer Center and also as director of the Mass General Scalp Cooling Program and the Triple Negative Breast Cancer Program. He is also an assistant professor of medicine at Harvard Medical School.
Listen to the podcast to hear Dr. Isakoff explain what scalp cooling is and how it works, including:
- the differences between automated scalp cooling systems and manual cold caps
- the factors that influence how effective scalp cooling can be at preserving hair during chemotherapy
- the biological mechanism of how scalp cooling works
- his tips for anyone who wants to try scalp cooling
Running time: 25:33
Thank you for listening to the Breastcancer.org Podcast. Please subscribe on iTunes, Stitcher, Spotify, TuneIn, Google Play, or wherever you listen to podcasts. To share your thoughts about this or any episode, leave feedback on the podcast episode landing page on our website.
Show Full Transcript
Jamie DePolo: Hello, thanks for listening. Dr. Steven Isakoff is the medical oncologist who serves as associate director for clinical research at the Massachusetts General Hospital Cancer Center. He is also director of the Mass General Scalp Cooling Program and director of the Triple Negative Breast Cancer Program. He also is an assistant professor of medicine at Harvard Medical School.
Dr. Isakoff joins us today to talk about scalp cooling during chemotherapy to help people keep some or quite a bit of their hair. He'll help us understand what it is and how it works. Dr. Isakoff, welcome to the podcast.
Dr. Steven Isakoff: Thank you so much. It's a pleasure to be with you today.
Jamie DePolo: I understand that there are really two basic ways to cool the scalp during chemotherapy: what's called cooling systems and then what are called cold caps. And I know they kind of work in the same way, but if you could explain the differences between the two types.
Dr. Steven Isakoff: Sure. So, that's right. There are two general approaches, and what they have in common is the underlying idea of by cooling the scalp slightly before, during, and after chemotherapy, we can generally try and prevent chemotherapy-induced hair loss. The difference between the two approaches is, one of them uses a machine, called a scalp-cooling machine, which involves the patient putting on a cap that circulates fluid through it, and that cap connects to, essentially, a small refrigeration unit that cools the fluid and pumps it through.
The other approach is the manual caps, and the way that works is rather than having a machine serve as a refrigeration unit, the patient needs to bring in, essentially, a tub of dry ice and cool the cap manually, and then put the cap on, typically with a helper. And that cap needs to be changed as it warms up, about every 20-30 minutes or so. Whereas with the machines, because it's a constant circulation of cold fluid, the patient doesn't need to change the cap. It stays on once for the entire chemotherapy session.
Jamie DePolo: Okay, and it sounds like with the caps that have to be changed, you might need several caps for that whole process during a chemotherapy session.
Dr. Steven Isakoff: Exactly. So, with one of the more common caps, typically, they will send somewhere between 4-6 caps. It takes about 2 hours or so for the caps to cool down to the proper temperature, and so what happens is after the caps have been cooled, you put the first one on. After 20-30 minutes, that one comes off. A new one goes on, and the old one goes to the bottom of the dry ice pile to get cold again. And by the time about 2 hours have passed, that first one is now back up to the top. So, that's pretty much how that one works. But it's pretty labor intensive for the helper who's changing it out and getting the next one ready.
Jamie DePolo: Okay. Now, research has shown that the effectiveness of scalp cooling varies. I know it can depend on the type of chemotherapy, the dose of the chemotherapy, and, I believe, the fit of the cap is very important. So, could you talk a little bit about that?
Dr. Steven Isakoff: Sure. So, that's right. The success of scalp cooling depends on a number of factors, some of which you've touched on.
One of them is certainly the type of chemotherapy. So, certain chemotherapies tend to cause more hair loss, or alopecia, than others. So, for example, chemotherapy agents like the taxanes: in particular, paclitaxel, which is also called Taxol, tends to be fairly successful for scalp cooling. Docetaxel, which is also Taxotere, also can be successful. But then, when you start using them in combinations, such as docetaxel-cyclophosphamide, or the TC regimen — very common in breast cancer — that becomes a little bit tougher, although still successful.
And then the anthracycline drugs, which is the famous Adriamycin. When that's used in combinations, that's actually a little bit tougher on the hair, and so that can have less success.
In addition, the quality or type of hair. So, some patients just start off having thinner hair to begin with, and if you have thinner hair to begin with, I think the success, potentially, could be a little bit lower. And part of the reason is even for successful scalp cooling, we still anticipate that you'll have some thinning or shedding of the hair. So, if you start off with less to begin with, you just have less cushion to lose before it might become more noticeable.
In addition to thickness of the hair, in terms of the texture can be an issue. There's actually charts that show different types of hair styles, between very thin, straight hair versus very curly and tightly curled hair, and sometimes some of the curled hair, particularly in some of our African American patients, can cause a little bit more insulation, and so, it might require longer precooling or a tighter fit.
Then, of course, the time that people wear the cap can make a difference. So, most of the manufacturers have certain time recommendations for precooling and then how much to use after.
Those are just some of the factors that we think about when we're discussing cold caps for the patient and whether or not it might be right for them.
Jamie DePolo: Okay, and I kind of want to touch on the fit, because I know when you talked about how the manual caps that need a helper to help somebody put them on are being very labor intensive. My understanding is that the fit of those is very important for even cooling and can affect the effectiveness. Is that...?
Dr. Steven Isakoff: I think the fit with any of the approaches is very important. With the manual caps, and there's several, but one of the manufacturers has a gel-filled cap that, basically, you fold around the head, and there's Velcro on it. So, you can actually get it pretty snug. It's actually a pretty tight fit, and it can be adjusted so it's pretty tight.
The machine approaches, the scalp-cooling machine approaches — some of those caps are sort of three sizes, small, medium, or large. And so there can be some pockets, depending on the shape of the person's head, and so, you do have to, when you're doing the fitting, pay attention to make sure that you're not leaving any air pockets in there.
It is quite important to have a snug fit, and there is somewhat of a learning curve. Patients tend to get better as the weeks go on or the cycles go on. But really, if that first cycle you leave an air gap and you're not making good contact with the scalp and it's not cooling in a certain area, even with just missing that first treatment, you can start to see hair loss from that. So, it's really important that even from day one, you ensure a snug fit.
Jamie DePolo: Thank you. There was a study that came out last October, October 2020, and it, apparently, was some of the first research to really look at the mechanism of scalp cooling. Because what I had read before was that it was thought to work because it constricted, or narrowed, the blood vessels in the scalp, so that stopped as much chemotherapy medicine from going to the scalp. But this study also showed that it actually also reduced the amount of chemotherapy medicine that the hair follicles were absorbing. So is that sort of a different mechanism, or do they work together? I guess, help us sort of understand that research.
Dr. Steven Isakoff: So, I think it's important to understand that even though scalp cooling has been around for decades in Europe, we actually don't know the precise mechanism for why it works. The two leading hypotheses for many years have been exactly what you alluded to. One is that by cooling the scalp, you cause constriction of the small blood vessels, the capillaries, that supply the blood to the hair follicles, and by constricting that, the thought was that you reduce the concentration of chemotherapy that actually gets to the hair follicles. Certainly, hair follicles are among the fastest growing and dividing cells in the body. Chemotherapy targets rapidly dividing cells such as cancer, but also the hair follicles, and the thought was that could reduce hair loss.
The other thought was that by cooling the hair follicles, you put them into a hibernation-like state and lower the metabolic activity to make them less susceptible. That's similar to sometimes if you're doing an organ transplant, you see they put the organ on ice to prevent any damage, and the idea is by cooling these cells, you can help prevent them from being exposed to the toxicity of chemotherapy.
The study you're referring to came out in October and was really some of the first experimental evidence showing a potential third mechanism. And I guess I would say it's not entirely different, but it's a little bit more precise. The idea here is that by cooling the hair follicles, what you do is you make the plasma membrane, the lipid membrane of the cell, more rigid, and that might then prevent the chemotherapy from diffusing into the cell and basically lowering the concentration of chemotherapy that gets into the cell to then target the nucleus and cause the cell to die.
So, I think it's the first experiment to really demonstrate this. Whether or not this is what's happening on people's scalps, we still have to test experimentally, but I think this is really important to try and understand this better. Because certainly, once we can understand better the mechanism of why scalp cooling works, I think that will let us focus on potential ways to improve the delivery systems and what we're trying to accomplish.
Jamie DePolo: Okay. That makes sense. So, if we can better understand the actual mechanism behind the success of it, maybe we could make it more effective. Like, maybe in the future, we could see, like, “Oh, okay. Maybe it will work with the anthracycline chemotherapies. We just need to do something different.”
Dr. Steven Isakoff: Yeah, and I think it allows us to think even more creatively if, for example, we learn that it turns out it is this diffusion of chemotherapy across the cell membrane, maybe there are other ways to accomplish that using medical or biologic approaches to reduce permeability during chemotherapy. So, I think this was a really helpful study and I hope will open the door to more experimental research on understanding scalp cooling.
Jamie DePolo: Okay. That sounds very interesting. I do want to shift gears a little bit and talk about access to scalp cooling, because I've talked to a few people who've had chemotherapy, and some have said, “My doctor didn't even bring it up. I had to do all my own research. Nobody at my infusion center mentioned it.”
So, my understanding is — and correct me if I'm wrong — that the automated cooling systems, I'm thinking of the Paxman System and the DigniCap System, they are either rented or purchased by the treatment facilities, and they're there, and then people would pay a fee to use them. And then the individual caps, the manual caps, are usually rented by the person who's getting chemotherapy, and then the person also has to get the dry ice on their own, and they have to have somebody there to help them change the cap.
So, do we have any idea — I guess I'll start with the automated systems. Do we have any idea how many there are available in the United States, and are they more likely to be, say, at larger facilities or research facilities that are affiliated with a university?
Dr. Steven Isakoff: Yeah. So, the description of how these work that you gave is quite accurate. So, and then, just to summarize, the centers essentially rent from the scalp-cooling machine companies, and as you said, DigniCap and Paxman are the two that are both FDA-cleared systems in the United States. It's a nominal charge to the institution. And then the model is that the patient then purchases the cap and rents the use of the machine from the company directly. So, the charge is based on how many uses are anticipated.
My understanding is, presently, there's over 500 sites in the United States. I believe somewhere in the order of about 350 sites have the Paxman system, and about 200 or so may have the DigniCap system. And that number is growing all the time. More and more centers, I think, are trying to get these machines as the use of scalp cooling is growing and patients are really asking for it.
I think it's probably, for the moment, if you were to look, probably more accessible in larger cities. And I think that just probably has more to do with, it takes a certain volume of patients, I think, for it to become useful or reasonable for an individual center to have this. So, for some rural centers that may treat all kinds of cancers and may not have a high volume of breast cancer per se, it just may not make financial sense for them.
But I do think it is expanding. I don't think it's limited to research facilities. I'm aware of many private oncology centers that have this. And I think patients are really learning about it more from forums like this and from friends of friends, and more and more patients are asking for it, and I think it's becoming much more clear to the individual oncology centers that this is really something that is really necessary to provide state-of-the-art care for our patients.
For the gel caps — and the most common ones currently are the Penguin Caps, and there's a few other companies like Arctic Cold Caps — you're correct for that one. The patient orders them directly from the company. They rent them at a monthly fee, and then the patient is responsible for picking up the dry ice. And usually, for the Penguin Caps, you need to have someone with you to help put the caps on. So, it's a little bit more involved, but it's really the patient takes control of managing that.
There are a number of sites that do supply freezers on-site. That's one of the models that Penguin Caps has, where some sites will have a freezer where you can keep the cap, and that way you don't need to bring in the dry ice. The challenge there is, it's harder for the caps to cool within the cycle because it's not as cold as the dry ice. So, you generally need to have more caps on-site, and obviously the freezer takes up some storage space, but some centers do have that model, as well.
Jamie DePolo: Okay. Interesting. I guess, to help me sort of visualize, if somebody is using the manual cap system, and say, they have to come in with, I don't know, six caps. Is that a giant box of stuff? Is it heavy? Is it, like, a little suitcase? Do you have any sense of that?
Dr. Steven Isakoff: Yeah. So, yeah. So, we have the Paxman System at our institution, but I do have some patients who choose to use the Penguin System, for example. So, I'm quite familiar with it. And basically, the company sends a decent-size Igloo cooler, similar to something you might take to the beach, but they send it with a little carry dolly. So, you can put it on wheels. And they also send an infrared thermometer so you can test the temperature and pretty thorough instructions. It is heavy, but patients are able to wheel it in, or their helper wheels it in. And then it's all rented, and when it's done, it just gets sent back to the company.
Jamie DePolo: Okay, so, I'm assuming the automated systems like Paxton or DigniCap, it's really just the cap that the person would have to bring in because everything else is already there. Is that right?
Dr. Steven Isakoff: That's right. So, the refrigeration unit is there, and, for example, Paxman sends a very nice kit in a small handbag. And in that kit comes the silicone cap, as well as the insulating cover, which is basically like a neoprene cover, almost like a scuba-diving cap. But then they also give you a headband to keep your forehead warm, a squirt bottle to wet your hair, some conditioner, a wide-tooth comb, and the information. It comes in a small, lightweight handbag, and that really has everything you need to do the scalp cooling.
Jamie DePolo: Okay. Great. Now, I know that the cost for scalp cooling can vary. Do you have any sense whether it's widely covered by insurance, or does that vary as well?
Dr. Steven Isakoff: So, the cost does vary, although most of the companies, their prices are all quite similar, and all of them, maximum out of pocket would be $2,200, I believe, for all of them. Penguin works on a monthly rental. Paxman and DigniCap work as a per-use sort of fee, and with that initial purchase comes the cap.
So, unfortunately, it's not universally covered by insurance. I've had several patients where I've written letters, and they have gotten it reimbursed as sort of a one-off.
Myself and many of my colleagues throughout the country are working very hard to try and get insurance to cover this more routinely. This is now in the National Comprehensive Cancer Network Breast Cancer Guidelines to consider scalp cooling for chemotherapy. There are now at least two randomized clinical trials in the United States. These two devices are FDA cleared.
One positive step has been, recently, the American Medical Association announced new what's called CPT codes, which are procedure codes that now include scalp-cooling devices. So that's, we hope, the first step to try and get the insurance companies to more universally do this.
But there are many ongoing efforts, because one of the key things, certainly for our institution and I know for all the institutions that do this, is equity of access. And we really don't want this to be something — and we really don't think it's ethically appropriate to be something — that's only available to patients who can pay out of pocket and afford it.
We really think that this is a critical piece of people's care. There's a lot of research showing that chemotherapy hesitancy can be linked to the fear of alopecia. There's a lot of anxiety, a lot of long-term quality of life and self-image issues that come out of this. So, we really think it's an essential medical necessity. We certainly support our patients in writing letters, but we do hope that in the near future, hopefully within the next couple of years, we'll see some more universal coverage. We think that's critical.
Jamie DePolo: Yeah. That would be great, and I am curious, too. You mentioned writing letters for some of your patients, and that would be a one-off. I'm wondering about metastatic patients who, maybe, go through two, three, four different cycles of chemotherapy. I've talked to one woman who has metastatic disease, and she said her insurance company paid for the first round, but they said no for rounds 2 and 3. Is that something that you're also talking about as far as coverage?
Dr. Steven Isakoff: Absolutely. So, the two randomized trials that were done in the United States were done in early-stage patients. Many centers, that I'm aware of, limit the use of scalp cooling to early-stage patients.
However, we, at our center, and many other centers that I'm aware of, do allow advanced cancer patients to use it, and I've had many metastatic patients who have used it. In fact, at our institution, we have one patient who, believe it or not, is, I think, 18 months into using scalp cooling now, which is quite impressive.
And when we talked about the cost of scalp cooling, you might recall that the companies tend to have a maximum limit for out-of-pocket of $2,200. So, even if it's not covered, for the Paxman machine, for example, that equals 12 uses. So, whether you're getting 12 weeks of weekly Taxol in the early stage or in the advanced stage, you're on Taxol for a year. Your out-of-pocket limit will be capped at $2,200, and I believe DigniCap has the same process, and Penguin Caps, and the others, I believe, also.
So, I'm strongly in favor of it to be available for metastatic patients. Particularly with breast cancer, where our patients can live for a very long time and live very full and active lives with advanced disease, keeping your hair is, I think, part of that. So we certainly advocate for that.
Jamie DePolo: Okay. Thank you. So, if somebody wanted to try scalp cooling, what are the top three things you would tell them? Are there tips? Are there pointers you would give them?
Dr. Steven Isakoff: Yeah. So, I think the first thing I would say is, if you want to try it, try it. If you find that you're too cold, or if it doesn't work, you can always stop. But I think if it's something you're interested in, the first thing I would say is, don't be afraid to try it, and just go for it. And if it doesn't work, most of the companies have some reimbursement or refund for unused uses or things like that. But I'd say, give it a try.
Probably, the second thing is just to understand that the scalp-cooling process is not just a few hours on the day that you're doing your treatment. It does require being careful with your hair basically throughout the time you're being treated. And so, there's lots of recommendations, like, as I mentioned, use a wide-tooth comb. Try and limit hair treatments and other things that can be somewhat rough on your hair. Your hair can be a little bit more brittle. So, just know that it's not just once a week or once every 2 or 3 weeks that you need to think about it, it's really taking care of your hair according to the recommendations from each of the companies in accordance with what they recommend to best increase the chance of keeping your hair.
And I think, I think the third thing I would tell people is, ask your provider if they have it, and if they don't, and it's important to you, seek out a provider that does. As I mentioned, this is really not something we look at as just a cosmetic thing. This is really a lot about quality of life during treatment. So be proactive, and if your provider doesn't mention it, they may have forgotten. They may not have it, but just ask about it. And don't be dissuaded. I've had a lot of patients who've come to me for a second opinion where their initial provider said, “Oh, that doesn't work,” or, you know, don't try it. I think we have a fair amount of evidence that it can work, and if it's something you're interested in, and you're told not to, seek out someone who's willing to talk to you about it and let you try it.
Jamie DePolo: Excellent. Dr. Isakoff, thank you so much. This has been really great information. I'm sure it will help a lot of people.
Dr. Steven Isakoff: My pleasure. I appreciate the invitation to participate.
Can we help guide you?
Create a profile for better recommendations
Breast self-exam, or regularly examining your breasts on your own, can be an important way to...
Eating When You Have Nausea and Vomiting
Almost all breast cancer treatments have varying degrees of risk for nausea and vomiting. Some...
Tamoxifen (Brand Names: Nolvadex, Soltamox)
Tamoxifen is the oldest and most-prescribed selective estrogen receptor modulator (SERM)....