Today’s episode of the podcast is about on how to keep your hair when going through cancer treatment

KEY TAKEAWAYS COVERED IN THE PODCAST

What was once a fantasy – that patients could keep their hair during chemotherapy – is now a reality. This was the inspiration for the creation and naming of The Rapunzel Project.

The Rapunzel Project is a non-profit organization dedicated to helping chemotherapy patients keep their hair during treatment.

In today's episode, we will be joined by the co-founder of The Rapunzel Project, Nancy Marshall who is a breast cancer survivor and her experiences with cancer inspired her to help make the journey easier for future patients.

To know more about The Rapunzel Project, you may visit this link:  www.rapunzelproject.org

So stay tuned and learn from this episode. 

HIGHLIGHTS YOU CAN'T SIMPLY MISS

• Rapunzel Project is a lot parallel with Alopecia Angel.  01:06

•  In the beginning, the oncologist did not believe about capping.   09:14

• About 8% of patients refuse chemotherapy and the primary reason for that is they won't tolerate the hair loss.  19:54

• The function of the chemo drugs is to kill the fast-growing cells 30:16

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Transcription

Awaken to hair growth awaken to hair growth because there is possibility to get your hair back Awaken the hair grows because we're not told that we're able to conquer and overcome alopecia.

Awakened to hair growth because I want to be a positive light and beacon for you because I've healed my alopecia and now I help others do the same with different types of alopecia men women children of all ages of all races and ethnicities.

Because we're not told that we're able to conquer and overcome alopecia awakened to hair growth because I want to be a positive light and beacon for you because I've healed my alopecia and now I help others do the same with different types of alopecia men women children of all ages of all races and ethnicities

 I wanted to connect with you, thank you so much because the Rapunzel project really stood out for me. I've been on your website of course, I came across it actually, because every year at the end of the year I look into charities that I want to donate to or that speak to me. I came across the Rapunzel project which I had never heard about. In hearing you and your cofounder speak on your YouTube there were a lot of parallels with me, Alopecia Angel.  There were a lot of parallels because wigs for you two were not an option.  Just like a wig for me was not an option when I was losing my hair. I knew that I would get my hair back just like both of you forged ahead and tried something new to also get your hair back. There are a lot of parallels in that and there's also the parallel of wanting to create awareness which alopecia Angel also does and the Rapunzel project is for sure doing but needs more outlets.

 Both of us feel the option of giving other men women and adolescents and teenagers the option to not lose their hair with chemo and radiation. I also want to give people the option to heal in a natural route because medication for autoimmune alopecia and for many different types of hair loss doesn't work. The opportunity to heal is there and we're not given that option. Just like you, you're not given the option of a cooling pack for your head while seeing the oncologist or dermatologist many times.

 My clients are told there's nothing they can do, but that's false. They really felt a calling to connect and I'm so grateful that you did today, and I want to hear more of your story. Because our listeners come from all over the world, and I want to understand of the Rapunzel project works outside of the US or North America. Also, your back story, how this happened and then how you two connected. If you would share with us that would be wonderful.

 My mother died of breast cancer when she was 55 and when I was 55 I was diagnosed with breast cancer. It was quite a shock, but I had always had cysts. It was always kind of the other you got to drop off thing.  I got this news, and I had the best and the worst of things.  It was found very early that if I did the big surgery and had a breast removed, I didn't have to do chemo and radiation.  It was a freaky thing, I had a breast reduction surgery and they found the spots in the tissue when they did routine pathology. They weren't expecting to find it they found three different spots all close to the margins. No way to know where they were and so I had stage zero and still had to do the big surgery.  That was pretty traumatic but because I didn't have to chemo and didn't have to lose my hair I didn't have to tell anybody. Until I felt like at least for me personally, I needed my emotional resources for myself at that time and I didn't have enough to share what it was over and the surgery was done and the reconstructions were done. I was perfectly happy to tell anybody about my experience but I was able to do it in my own time because I didn't have hair loss.  

Three years later suddenly, my friend, was diagnosed with breast cancer out of the clear blue sky no family history. She was going to have chemo and radiation. Radiation doesn't cause you to lose your hair but chemo drugs commonly do. She accidentally found out about this cold capping process by her dermatologist. Her doctor said you might know this woman she's distantly connected through some tennis circles. She used these weird caps and didn't lose her hair during chemo.  She is always a competitive tennis player.  I can't be out on the court playing competitive tennis with a wig on my head.  I'm just going to have no hair, so she was very intrigued did some research, contacted the founder of Penguin cold caps which was the company involved. Contacted this woman in Minneapolis where we lived and after calling, ten other patients that he referred her to she called her doctor and said have you ever heard of this and what do you think. He said “I've vaguely heard of it. I doubt it works but I have no objection. If you try it which was really major because I had an oncologist in the same practice.” He would have never let me try it, so it was interesting.

 Her doctor was just more open-minded than some people. She rented the caps, the best part of the story is that we were like cast of thousands.  The hospital didn't know what to do with us. Because Shirley has a big circle of friends. Everyone wanted to help on her third chemo treatment.  We always arrived right at 8:00 o'clock when the clinic opened because it was a long day with capping a typical day.  Capping is 7 hours with the manual cold caps so you've really got to be there at the start of the day. For the morning of her third treatment, she should have had not a hair on her head for the chemo regimen.  When we walked in at 8:00 o'clock the entire team of nurses and aides was lined up like a receiving line. They all thought we were crazy. If this worked, we would know about it.  The doctors would know about it everyone would know about it.

 We walked in Shirley with a full head of hair down her back. People were crying with tears flowing because no one could believe what they were seeing. After her third treatment Shirley and I went out for a glass of wine, and we said we really have to do something about this because no one knows about this.  If it can work, this will change a lot of people's cancer journeys.  We decided to start working on a concept for a nonprofit, but we wouldn't want until she still had all her hair after her 6th chemo.  She did, we spent brainstorming a name, what we were going to do, and what we weren't going to do.

 After her 6th chemo, we hit the button, and we decided.  We both had other full-time occupation groups that we couldn't be fundraisers. We couldn't be the people who made it possible for patients to afford to do this.  Because the need is bottomless, and we really couldn't devote ourselves full time to the kind of fundraising initiatives. We would have to meet the purpose. But it seemed to us that generating awareness this process existed and is effective was even more important initially than helping people afford it.  Because if you don't know about it, you can't even consider it. Our mission from the beginning has been to create awareness of the existence and effectiveness of hair-saving cold therapy.  Initially of course it was just the manual cold caps,  and now there are other machine options as well. I think there's going to be probably something even better down the road in the future.

 That's incredible and amazing story. You've been open essentially for this charity since 2009 and you've worked with numerous people and organizations and you've helped millions of people already.  

 I don't know if it's millions because there's no way to know who's getting our information but not contacting us.  But I think that we could fairly say that we've made a difference in the beginning.  Even doctors didn't believe and couldn't get any traction with oncologists.

 It was interesting when you talked to the women who had found this process and had used it.  If you had personality graphed them, they would have all fallen in the same quadrant because they were the people who after they got over the shock of their diagnosis started doing research. What was really fascinating we realized very early that we weren't going to get to talk to a lot of oncologists. We don't have standing, we're not doctors, we're not researchers, we're not their patients.  We don't even necessarily live where they are we have no basis to get our foot in the door with busy people who were busy saving lives.

 We had to find better ways to reach patients and we kind of discovered by accident that hair salons were our best secret weapon.  Most patients have to shave their heads or know they're going to lose their hair and need to buy a wig. They have no idea where to start and one of the people they are the most likely to consult is their stylist.  Most women have a relationship with their stylist.  They've been going to them for years, the best part of it is patients typically consult their hairstylist after their diagnosis. Before they start treatment stylist could turn around and say to them there might be a better option for you that was magic and for several years.  We got more referrals from salons than we did. Particularly starting after 2015 when the first machine system got FDA clearance. Doctors started becoming believers and even from the beginning, we had a small cadre of very devoted doctors who were big believers.  But it took a long time to bring the industry around and it's still a work in progress and interestingly enough.

 The oncology nurses are another whole level of resistance because they're worried that it's going to create more work in the clinic, and they're already stretched very thin.  They're not even necessarily opposed medically; they just don't want to have to deal with it.  It's hard to argue that they're stretched thin. It's just that even though this may not be lifesaving it changes people's journeys.  

 I lost 50% of my hair going through alopecia. I have clients who are completely bald with alopecia universalis and come to me.  For me, it's been more than eight years since I've healed it. But for them, it's also a work in progress of emotional toll, mental health, the depression. There are so many other anxieties or even when you are dealing with smaller children. I have a lot of clients who are as young as eight months to adolescents. Teenagers and surely with tennis or to be outgoing if that is your personality, alopecia creates and forces you to be more of an introvert, to stay home, and not want to show up in life. It does cause this casts a shadow over your head essentially in terms of that glimmer of hope and this is what I love to bring to my clients. Sharing other success stories on how people with various types of alopecia including scarring alopecia can still see hair growth even though the doctors are opposed. Even though the doctors say no there's nothing you can do.  That diet and lifestyle won't work, that so many other alternative methods won't work like this. Because they want to corral you into what they know, and I get it because it's all they know. But unfortunately as you've seen it and what I see, as well, their toolbox is limited.

 It takes years, if not decades for them to be more open-minded. It's very unfortunate because there is a gap in education, there is a gap in how they continue their education even after graduating.  It was really interesting to watch the doctor's minds get changed. We met with a research scientist and a group of doctors, at one of the main hospitals in Minneapolis where we lived.  The man who founded Penguin cold caps had come over from England to make a presentation to them and the researchers said, “This doesn't work”.  

 But there is an undeniable truth that it works. It doesn't make sense to them and the essence of what I think he was telling us was “Chemo kills fast-growing cells hair follicles are among the fastest-growing cells in the body”. That was why hair loss is such a common side effect of chemotherapy and he's basically saying, “It makes no sense to me that you can constrict the blood vessels that go to the hair follicles for a few hours”.  Then take those caps away and allow free blood flow and free circulation again and minimize the impact of hair loss so dramatically because chemo drugs were designed to stay in the body for days.  

 In fact, that's why most patients feel so poorly after a chemo treatment often for several days or longer because those drugs are still in the system.  If you restrict the access of the chemo drugs to the hair follicles for the first few hours, the body is working immediately to dilute and metabolize those drugs. If you give the body a few hours.  the drugs are in the system for days it's diluted the strength of the drugs substantially. Apparently, that reduction in strength is enough for most patients to save most of their hair.  It's really fascinating because you would have never thought you could parse it like that. I think that's what he was saying but it was interesting with the doctor community in general because it didn't take them more than one or two patients in most cases to become believers. Shirley shouldn't have had a hair on her head for the chemo regimen.  When she had a full head of hair there was nothing anybody could say, except this must work. We got pretty far along with the doctors, faster maybe than otherwise expected nursing communities have been tougher because they're just worried about the burden on them.  Also, a patient who's capping frequently has a helper and a cooler and the clinic is crowded so they stay there longer. People make the mistake of thinking it's about vanity and vanity is certainly a factor but when you talk to patients it's privacy. It's my health- my business and I'll tell you what I want to. For yourself, it's so many things as much or more than vanity that it's game-changing for a lot of patients.

 We're still a very small nonprofit, but I think we've had impact.  It's just something we're very passionate about because we know how bad it feels to get that diagnosis and if you can make the journey better for everybody involved the patient, the patient's family it's just something that also pays forward.  Because those patients who are successful are the mentors or you know information providers in their community for patients.  It parallels alopecia 100% and I think that is the biggest take away is that there is a choice. There are options and we just need to make them available and spread the word about them. Additionally, there is a choice to how you want to live, in the case of alopecia, there is a choice to either heal or not heal. Regardless of what your doctor says, in the case with chemo and cancer, there's a choice to have your hair or not have your hair during the process.  The journey is still arduous just like healing alopecia, there are you know challenges to that but at the same time that outcomes are just so much brighter and move forward in a more positive manner versus the doom and gloom

  Having your world just upside down, changing 360 and then feeling like you're spinning out of control, I think that's the worst part without question you got that diagnosis. I could feel my feet on the ground again, doctors tell us this patient going to die, going to lose hair. The hair thing is terrorizing so it really does matter and there's a statistic out there from some studies that says that about 8% of patients refuse chemotherapy and the primary reason for that is they won't tolerate the hair loss.  It matters greatly and it doesn't matter also that most lymphoma patients can use cold caps and they don't want to shut down treatment to any part of the body.

 I think we're going to see some technologies in the future that might even be applicable to children. This is available in the USA and in the UK so the reposal project basically learned information service.  We're happy to give information to anyone or biomedical freezers in your home. In between and someone else can't use their reason for that the liability for the caps has to be between the company and the patient. There are patients who lend them out but technically no one else can use them because of the liability arrangement with the mechanical systems.  The Pacman company is in the UK and is based in Sweden but has US headquarters in Dallas and there's a new machine system called amma.  It’s just starting to roll out that's in San Diego, they have installations around the world. Because it is a portable machine so the patient can roll herself down the hall and out of the chemo chair after her two-hour infusion and doesn't need to sit there for another two or longer. They also have FDA clearance as well as the other two machines so it'll be exciting to see if they can figure it out.

 What we do to help more I think the two biggest things the public can do are be aware of the process. Try to spread the word because even if you saw something on the Morning News or read something in the paper.  It may or may not register, two or three years later when someone you know or love needs treatment, so, just keep in mind and telling your hairstylist about it. Especially if you happen to call an oncologist, making sure that they're sharing the information with patients. Awareness in general and the second thing is that we always welcome donations. You can see it our website and the caps section but there is a nonprofit in North Carolina, Washington, Virginia, Maryland, Michigan and I'm missing one, I think there are four that are state oriented nonprofits that are doing the same thing. Additionally, there's a nonprofit started to help Jewish breast cancer patients but has expanded unbelievably and has by far the most generous assistance for all cancer patients- breast and ovarian around the country.

I saw on your website that a lot of insurance take it and I mean it's not you know the full umbrella but there are certain pieces and States and different types of companies under the insurance umbrella that do accept it. It is very exciting news that it is hit or miss with the insurance, and we warn people even if you think you're going to be covered don't count on it until you have confirmation from the insurance company.  If you get denied an appeal a lot of appeals succeed but it's a fight still. The machine systems are making some headway because they now have diagnostic codes assigned by the AMA. It's all subjective which is why you must appeal, but with these nonprofits that are out there.  There's a lot of help for a lot of people that's amazing I love to hear.

 My mom's friend was just diagnosed with breast cancer and she's also doing chemo. She's in San Diego so I will pass on your information and then, of course, the other organization you mentioned down in San Diego so that if she's in San Diego she should definitely contact the company itself called Cooler Heads.  The machine is called AMA, will do it but its core heads are in San Diego.

There's a professional hair care products company and their corporate attorney contacted us and said, “Hello here's who we are we are looking for a charity to support that kind of enhances our corporate mission which was all about inner and outer beauty”. They basically we had several interviews with them and they basically decided we were their charity.  They had us at all company meetings and handed us a $50,000 check which kept us in business for a long time. But the most important thing about it was that particularly in the early days they built up such enthusiasm with their sales force. We have some literature the sales force would distribute.  The literature on their calls and they would attempt to do salon education. Their product educators would go in to teach a new hair color product or a new styling product or whatever and then they would add in a little something about your chemo clients need to know about this and they also frequently in October where a lot of salons do fundraisers for breast cancer awareness.

 Because their clientele is mostly female and obviously it's kind of a big month for fundraisers. For a long time, we had a lot of their loan customers doing fundraisers for us. The support was phenomenal, and the enthusiasm was phenomenal. They were sold to a German company and they moved to Los Angeles. Our participation and support with them have been more sporadic because it's different management. They've got other priorities and business has been tough for some years.  But at the end of the day, they always pop up again and make videos they made on our website. We don't have the resources to make a video. Shirley and I are clueless about technology.  They've been great for support like that, and they still sporadically distribute our literature to salons. We're on their website and at various other times we've had some partnerships with other salons. Because the stylists get it, if you talk to them, they will tell you they never want to see another client in tears and so they get it. They feel it and they don't have any of the barriers that the oncologist nurses or oncologist physicians had to tell patients you ought to check this out. It was remarkable.  

 We'll still get an e-mail from a client who says my doctor told me “this won't work”.  We used to get ten of those a day and now we get two a month so it's really shifted. The bigger issue is the patients who don't know about it at all. There's nobody to tell them, so and you know in the more rural areas that are still, particularly a problem. The most disheartening ones are the emails we get saying “I just had my first chemo and heard about this”.  We can't help them after the first chemo. The function of the drugs is to kill the fast-growing cells and once you've had the first treatment. Those drugs are in your system, so hair loss is a time function you might not lose a lot of hair in the first week or the second week. But by the time you show up for your next treatment, you're going to be losing hair and after two treatments you generally don't have any hair there.

The drug is called Taxol which is generally given weekly for 12 weeks instead of every three weeks for several intervals. Taxol is a lighter chemo and with weekly taxol, if you've had one treatment you might still come out pretty well.  They call it chemo light but with the exception of weekly taxol patients can't save their hair if they've had one treatment.  There are some patients who still choose to proceed. The more chemo treatments you have the more damage you have to your hair follicles. Chemo hair that people get when they're done with treatment and it starts growing back and it's frequently Gray and it's frequently they're fuzzy. If you cap even if you're too late to save your hair on the other hand, it's costly and it's a lot of your time. I know my listeners will love this and I know that they will share and spread the word because as women this is what we do we help other women.  When they're in need and especially when it comes to mental health, emotional health, physical health, and hair; there are so many people on forums that say hair doesn’t care. I'm bald and I'm happy and that's great, that's you, that's great that wasn't me that was not me I could never do a wig. 

Even before Shirley and I haven't even met, the situation we are you know as Steve Jobs says, “The crazy ones that little by little changed the world”.  Little by little made a difference because we said no to what was given to us as our limited options and forged a new path. I think that's the beauty of being a strong female, with a voice a strong person with knowledge.  I knew being bald was not going to be my destiny and have beautiful hair.

In front of me, there's a different better way and there are options for everybody.  Anything else we would love to share with our listeners before we say goodbye?  Try to think if there's anything I didn't talk about there's always so much I feel like I could talk forever. I think you understand there's a passion. You learn something that could change other people's lives and then you do something about it. Most of the time we talk to patients at the very beginning of their journey and after that, we don't because we send them on to the resources they need and then they go on their way and they proceed every once in a while.  We'll get an e-mail back from somebody 3-4 months later saying, “I can't believe it”, this is my picture of my daughter's situation.  I look amazing, thank you for everything. It's just a labor of love. We're delighted that in a small way, we could make a difference, I agree wholeheartedly, and this is what fuels my passion too.

  I can talk about hair and alopecia all day long my husband has to temper me sometimes because we're at a dinner party and it's the only topic that I want to talk about. if I get started when we're out to dinner usually people are so interested. Because so often people haven't heard about it. Then my husband doesn't get to say anything for 20 minutes because every time I explain they ask more questions so as a rule, I tend to avoid it.

It is a passion yeah 100% and to me, it’s a mission. It's something that I never saw myself doing. I also had a different type of job in a corporate situation before. But this was a huge calling that I felt. I speak three languages. I speak Spanish, Portuguese and English. I couldn't find any information and it just took me over three years to figure this out. Since I have a program in English, I have a program in Spanish. I love the fact that you translated some of your information into Spanish. I would love to connect with you because I would love to share that information in Spanish with the Spanish population that follows me.  It's also important to those who don't speak English. Because there's so much information out there but a lot of misinformation from what's true makes everything very confusing. It's really hard to see who's telling us the truth and what's really the best way or the best strategy moving forward.

Let's play a scenario, let's say someone has been diagnosed today. What are the first 235 steps that you would suggest for them? The best thing they could do is just go to the website find the contact us page and send us an e-mail because we don’t publish a phone number. It's not because we're mean, it's because there is so much information that we need to give them. It is not possible to do it in a phone call.  They need to get started, we send that out in the letter if they follow up and they need to talk to us. We'll arrange an appointment to talk on the phone but 90 percent 95% of the time the letter gives them everything they need to move forward. They have to make some inquiries, we are basically agnostic in terms of the providers.  There are reasons for someone to use a particular company sometimes based on location or how fast they need the caps or what type of chemo they're having in one of the machine systems. We put those variables right into the patient letter we send them if we don’t, and they follow up we'll either give them an e-mail reply. The best thing that I can do is just shoot us an e-mail we normally get back to them in a couple of hours, and we give them a ton of information.

In most cases the cap providers, if you're renting the manual caps overnight, have your caps shipped Monday and start chemo on Wednesday. It can be that fast, and it's a little unsettling for a lot of people must make so many decisions at that time. But the caps come with instructions. In metropolitan areas, there are professional cappers that you can hire to cap you. It's expensive, we don't necessarily recommend it.  There was no one who knew how to cap one surely, read the instructions and you got smarter about it. We did it ourselves but if you can afford a professional capper and there's one nearby if you have them come for the first chemo.  They can train your helpers and it takes a lot of anxiety out of the day to have somebody who has done this before.  They're doing to be there for the first treatment, and you don't have to hire them for four or six, or 12 chemo sessions. Patients need to go on various websites and read about the products. They have phone numbers to call the companies and they literally can rent caps the same day if they want. It's beautiful if they're going to a clinic that has the machines installed the process. 

They need to contact the clinic where they should be told but our website will also tell them that they must contact the hub for that company. The company sends them a cap kit because they go to the hospital, the machine is already there. They bring their own personal cap with them. They practice fitting it on their head at home and then they show up at the hospital and the nurse looks them up to the machine and operates the machine. It could all happen fast. The information is also on our website with I think except for pricing.

I'll send you the Spanish version of the patient letter. If you don't live in Michigan you don't need to know about the nonprofit in Michigan that can help you but it'll give you a general idea of the kind of information we send out. It'll be defined and informative but it's really as simple as send us an e-mail. Our response times is very fast and everything they need to know to proceed is in that letter. 

That's fantastic! I appreciate that, Nancy. I don't want to take too much more of your time, and I thoroughly like my heart is just overflowing with happiness right now. It's amazing the connections you can do just by sending an e-mail. The connection is so powerful, I feel it and your story is remarkable surely. I love what you two are doing and I definitely want to help and support you. I'm going to get this out to all my listeners and definitely share and create more awareness. The more we can help others the better this world will be. This is what we're placed on earth to do.  

Thank you so much for all that you do and for reaching out to us too.  It's always very exciting to have someone else who understands the mission and can share absolutely.  Thank you so much and I will be following up with you shortly via e-mail to give you essentially links to the podcast and everything so you can share it with your website, and newsletters.  Create more awareness. I appreciate you. Thank you so much. Happy new year! Take care and all the best speak soon.  

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