At Paxman we are determined to democratise scalp cooling – ensure that anyone who wants to try cold capping has access to our system and caps. This isn’t just about access, but also about efficacy. We are determined that scalp cooling should be effective no matter your ethnicity.
Increasingly we are being asked by patients and physicians if scalp cooling is as effective for patients of colour as it is for white patients.
Until, recently there had been very little, if any data on efficacy because of the lack of minority representation in prior clinical trials. This is something that we are firmly committed to changing.
We wanted to actively do something about the lack of clinical data and as a result we worked with Oncologist Dr Asma Dilwari of MedStar Georgetown University Hospital, Washington. At the end of January 2021, a paper entitled ‘Does Scalp Cooling Have The Same Efficacy In Black Patients Receiving Chemotherapy for Breast Cancer?’ by Dr Asma Dilwari et al, was published in The Oncologist.
The study concluded – ‘SC may not be efficacious in preventing alopecia in Black women. Differences in hair thickness, hair volume, and limitations of cooling cap design are possible contributing factors.’ With results showing – ‘15 patients enrolled in the intervention before the study was closed early due to lack of efficacy… Only one participant was successful in preventing significant hair loss; the majority stopped SC before chemotherapy completion due to grade 3 alopecia (>50% hair loss).’
On first inspection, the trial seems to point pretty comprehensively towards scalp cooling not being a realistic option for patients of colour, and in the case of the 14 patients who saw grade 3 alopecia, this may well be the case. While scalp cooling is relatively new in the US, we have been providing our scalp cooling systems in the UK and across the world for decades. Based on lots of anecdotal evidence from patients, we believe that scalp cooling absolutely can be efficacious for people of colour.
Of course, we wanted to ensure that there was clinical data for patients of colour by working on this trial, but what also come from this was a very important learning experience. It has confirmed how imperative it is that we redouble our efforts to ensure that patients of colour receive tailored support and advice so that scalp cooling is efficacious and a positive addition to chemotherapy treatment.
There is a very long way to go, but we are pleased to say that a lot has changed since this trial.
The trial was published in 2021, but the trial itself was carried out in 2019. At this time, though we had begun the work, our protocols and hair care information for type 3 and 4 hair (and for type 1 and 2 hair) was not widely available. We were aware hair care advice is not a one size fits all situation, and in many cases, hair care that may be appropriate for those with type 1 and 2 hair can be detrimental or potentially damaging for people with type 3 and 4 hair.
Thought it may not affect hair retention, appropriate hair care advice can make a huge difference to a patient’s experience of scalp cooling. Hair care during scalp cooling can be challenging and advice that is tailored to type 3 and 4 hair not only will make these challenges a little easier to face, but can also ensure that hair that is retained is in the best possible condition as the patient moves on from chemotherapy.
Our guidance on protocols for hair preparation has also changed. The success of scalp cooling is reliant on a consistent all over fit of the cap. A good fit can vary from person to person based on head shape, but it can be even more challenging for black patients and anyone with type 3 and 4 hair. Very volumous and thick hair can act as an insulating layer, so it is imperative that hair is prepped as effectively as possible. Drs Vered Stearns and Crystal Aguh looked at the hair preparation for black patients in the paper ‘Considerations for the Use of Scalp Cooling Devices in Black Patients’. They suggested a range of options including potentially thermally straightening the hair to reduce volume and then using an oil-based product instead of water and conditioner. This definitely an option, but the tension that can be put on the hair root during the hair straightening process can be problematic.
We have found, based on patient feedback, that following steps are the most effective adaptions and additions to hair preparation protocol:
- Spraying the hair with water may not be enough to reduce the hair volume. Some patients have found that applying conditioner and then drenching the hair can be more effective, but ensuring that the crown and back of the hair is really wet right down to the roots is very important to ensure conductivity of heat away from the scalp.
- For those with thick hair it is important to extend the pre-cooling time to 45 minutes, to ensure that the scalp has had the extra time that may be necessary to reduce to the optimum temperature for scalp cooling.
- While the advice for those with type 1 and 2 hair is to push the hair back from the forehead when readying the hair to put on the cap, this might not be the best approach for those with type 3 and 4 hair. Parting the hair down the middle, or even in to three sections may be a more effective way of spreading the thickness of the hair across the scalp and avoiding particularly thick areas of hair that can prevent the scalp from cooling effectively.
It is important to remember that each patient is an expert in their own hair and are likely to have a feeling about which approach will work best for them. It is worth trying out different approaches to see which has the best result for that individual.
When it comes to type 1 and 2 hair, there isn’t that much variation, but type 3 and 4 hair presents in a myriad of different ways, not only how it naturally grows, but also in the way people choose to style and treat their hair.
From anecdotal feedback we know that type 3 and 4 hair in its natural state shows the best success rates for scalp cooling. Hair that has been chemically treated or relaxed, or that is damaged can make scalp cooling difficult. This isn’t anything to do with the cold cap, but to do with the effect that chemo therapy has on the hair itself for all patients. Chemo has a drying effect, not only on hair but also on the skin and scalp. Hair that is already damaged or weakened can really suffer during chemotherapy. This is seen often in type 1 and 2 hair that is very dry from bleaching or dying, and often leads to matting. Type 3 and 4 hair, which is naturally more fragile anyway, is much more prone to breaking and this is greatly exaggerated by the damage done from chemical treatment such as relaxing. Sometimes this breakage can be indistinguishable from shedding, particularly if the hair breaks or snaps at the scalp.
A basic hair care requirement during scalp cooling is to ensure that loose or shedding hairs are removed daily to prevent tangling and knotting that can lead to matting.
A recent study from L’Oreal South Africa led by Poonam Sewraj has shown that brushing alone can have a damaging effect on type 3 and 4 hair, but this can be mitigated with the appropriate products to lubricate the brushing process. We suggest that patients finger comb their hair twice a day, but also ensure that when washing, or more frequently if desired, they wet and liberally use a product such as a conditioner through the hair and brush with a wide tooth comb to remove any shed hairs.
Managing type 3 and 4 hair is not without its challenges, but none are insurmountable and armed with the hair care advice we now provide, we have seen patients of colour have great success with cold capping.
We are also ensuring that we are sharing the experiences of patients of colour. Representation is key – patients of colour need to see other people of colour having treatment, choosing scalp cooling and seeing great retention. Both Stephanie and Avril cold capped through their chemo in 2020 and have seen wonderful hair retention.
Stephanie was diagnosed with breast cancer in March of 2020 and chose to scalp cool.
“It felt like a lot when I first started but I got used to it quickly. It allowed me some normalcy, but most of all it allowed me privacy. I was able to talk to people and not have to reveal that I was sick or in treatment unless I chose to. I was really overwhelmed when I was diagnosed. I was so young to have breast cancer and I have two young kids. I particularly didn’t want to scare them and tried to shield them from as much as I could and Paxman helped me be able to do that.”
“I was really nervous about getting the cap on correctly. I spent a lot of time watching the videos that Paxman produced and I found the Facebook group which was so unbelievably helpful. It was comforting to see all the tips and tricks the women there shared. Especially because I could talk to women with the same hair texture.”
“When I found the directions that were specific to my hair I was put more at ease because initially all I saw were white women and their experiences and I was afraid it wouldn’t work for me.”
“I had to go to a CVS Minute Clinic for an ear infection shortly after I finished treatment. The NP there realized I had recently finished chemo and told me that she was a breast cancer survivor. I told her I had been on Taxol and she said “But you have hair! And it’s thick!” I ended up giving her info on Paxman to pass on to a friend who had recently been diagnosed.”
Avril was diagnosed with breast cancer in mid-April of 2020 and chose to scalp cooling.
“Three months of gruelling chemotherapy followed during which the Paxman cooling cap became a lifeline. The retention of about 70% of my hair is a symbol of defiance in the face of cancer and COVID.
“I did experience some thinning and hair loss around the hairline and sides of the hair. I am happy to report that in the three months since I completed chemotherapy, that thinning and hair loss has been reversed.”
“It is important to pay extra attention to your hair during chemotherapy. My Afro hair is quite fragile so I saw my hairdresser for conditioning treatments at least once every 10 days during the period I was receiving chemotherapy to minimize breakage. I also applied a leave-in conditioner prior to wearing the scalp cooling cap during the weekly chemotherapy cycle.”
“It is incredibly important that women of colour have access to and can trust this wonderful scalp cooling system while going through chemotherapy which is often a physically challenging and emotionally difficult experience. I hope that my story inspires women of colour to give scalp cooling a try.”
In the last year we have seen a real change in approach from our patients on our private Facebook Support Group. While primarily the motivation for scalp cooling is to retain hair during chemotherapy, a lot of our patients now persist with scalp cooling, and may even be motivated to scalp cooling in the first place because of the impact cold capping has on hair regrowth. A trial that was published in 2019, ‘Efficacy of Scalp Cooling in Preventing and Recovering From Chemotherapy-Induced Alopecia in Breast Cancer Patients: The HOPE Study’ Takayuki Kinoshita et al, demonstrated that the use of scalp cooling ensures faster, healthier and stronger regrowth of hair than occurs without scalp cooling. This can be the difference between 2 inches of hair regrowth within 3 months of chemo completion versus almost no discernible regrowth. This can have a real impact for patients with type 3 and 4 hair, which naturally has a slow growth rate.
While we are really pleased that the lesson learned from the first trial have been put in to action and we are seeing real results for patients, we are still determined to make sure that there is robust, useable and informative data for patients of colour.
As a result, we are in the early stages of another study with Dr Asma Dilwari of Medstar Georgetown, as well as Vered Stearns, Professor of Oncology and Crystal Aguh, Assistant Professor of Oncology both of Johns Hopkins University School of Medicine, focusing on efficacy of scalp cooling for black patients, but also to establish the best possible protocols and support for patients of colour.
Dr Dilwari said –
“This study (conducted in 2019) was another reminder of the need for clinical trial participants to reflect our diverse population of cancer survivors. Scalp cooling is such an important supportive therapy. I am optimistic that creative collaborations with colleagues from multiple disciplines will improve outcomes in all patients.”
Crystal Aguh, who is Director of the Ethnic Skin Program and Fellowship at Johns Hopkins said –
“Dr. Dilawari’s study highlights the glaring disparity in outcomes of scalp cooling treatment for Black women. It is really important to take into account the unique styling considerations of Black women when devising a protocol for patients. I am excited at the prospect of joining together with my colleagues, who are similarly motivated to tackle this issue, to make sure all patients benefit equally from this important treatment.”
If patients of colour follow our suggested hair preparation guidance and accompanying hair care advice, achieve as consistent a cap fit as possible, there is no reason why they should not see positive and efficacious results from scalp cooling. It is important to remember that patients of all ethnicities see different levels of retention for lots of different reason, primarily the drug regimen they are receiving (patients can find out more information on expected hair retention using our decision-making guide).