Symptoms Spotlight: Hair Loss with Abigail Johnston and Melanie Sisk

Hair loss is one of the most emotionally complex side effects of cancer treatment — and in this episode of Symptom Spotlights, Abigail Johnston and Melanie Sisk are joined by Lisa Backus and Jill Tirabassi for an honest, practical conversation about navigating it.

From complete hair loss due to chemotherapy (multiple times) to gradual thinning from hormone therapy and targeted treatment, each woman shares her unique experience — and the tips, products, and mindset shifts that have helped along the way.

In this episode, we cover:

• The difference between hair thinning and full hair loss — and how to know which you're experiencing
• Wigs vs. soft hats, scarves, and beanies: what actually works
• Cold capping, Minoxidil, biotin, vitamin panels, and other interventions to discuss with your care team
• Henna head tattoos, silk pillowcases, volume shampoos, and other creative solutions
• The psychological toll of visibly "looking sick" — and why hair loss is never a small thing
• How hair can grow back differently in color, texture, and curl after treatment

This conversation is full of peer wisdom, humor, and heart. Links to products and interventions mentioned are in the show notes.

Nothing shared in this episode constitutes medical advice. Always consult your care team before trying new products or supplements.

Thanks for listening. If you enjoyed the episode, subscribe and leave a review — it really helps. Follow us on social media @livefromstage4 and visit our website at www.livefromstage4.org for show notes and links.

 Your support helps us continue to share important stories and advocate for those living with metastatic breast cancer.

Until next time, take care and keep pushing for progress.

Transcript

SPEAKER_00 0:10

Put your foot together because of any thing. We'll come to life from stage four, where MBC takes center stage as we talk to experts, share inspiring stories, break down signs, and shine the spotlight on what matters most. Because when it comes down to it, the spot for us and by us is all about us.

SPEAKER_06 0:36

Hi, I'm Abigail Johnston.

SPEAKER_02 0:39

Hi, I'm Melanie Sisk.

SPEAKER_06 0:42

And we're here today to talk about symptom management. This series is called Symptom Spotlights, and we will regularly be bringing information to you on various symptoms caused by cancer or the treatments for cancer and how different patients are managing them. We learned so much from each other. What a great example of how we are stronger together.

SPEAKER_02 1:03

And we are so excited to bring this hard-won peer wisdom directly to patients. And please let us know if there is a symptom you would like us to talk about. And now let's get to it. Abigail, what symptom are we shining the spotlight on today?

SPEAKER_06 1:20

Today we are going to tackle an issue that many of us face, living with MBC and taking the various medications that keep our cancer under control. And that is hair loss. Today, Melanie and I are joined by two other friends from the podcast, Lisa Backis and Jill Tiribasi. And we're excited to hear about their experiences with hair loss. So, Lisa, would you like to go first?

SPEAKER_03 1:49

I sure would. So my issue was initially when I had early breast cancer more than five years ago, I went on tamoxifen and I was having a bit of hair loss, and my hair started getting really kinky. But once the tamoxifen stopped working, and then I ended up metastatic, then I went on letrazole and my hair all came back and it was great. Life was great. But then letrozol stopped working. I've been on trial with amazing drugs, but it is causing hair loss again. And so I really have been struggling with this and struggling with ways. How do you deal with this? I'm afraid to cut it. I'm afraid to go to the beauty salon because when they blow dry, they pull and it's literally everywhere. It's like I'm shedding constantly. So I was looking for advice. I have a couple of tips my daughter tried to give me. I don't know if they're working or not, but if it helps anyone or if anyone's got any advice, I'm open because I do want to be on these drugs, obviously. And I know hair loss, on the one hand, it's not the worst thing that can happen to you. But on the other hand, yeah, your identity is kind of tied to your hair. So anyone who has anything to offer, I would greatly appreciate.

SPEAKER_06 3:04

Lisa, when you're talking about a hair loss, is it that your hair is thinning out, meaning lots and lots of shedding, or are you seeing clumps of hair that are falling out?

SPEAKER_03 3:14

I'm not seeing necessarily clumps, but I am shedding at an alarming rate. It's thinned out considerably. I'm also having issues with breakage as well. And I use a curling iron and I'll wind up with this is the first time this has ever happened, hair stuck to the curling iron. So obviously it's even breaking off as I'm trying to curl it and make it look fuller.

SPEAKER_06 3:38

Well, circle back to some of those remedies your daughter offered, because I wanted to ask Jill what her experiences have been.

SPEAKER_05 3:46

Yeah, I have lost my hair completely twice now. And with typical chemotherapy drugs, taxol being the first one, um, Sacatuc MAB COVID's or Tradel V being the second one. I do know that if I follow standard of care with future lines, pretty much all of the chemos involved will I will lose my hair again. I'm happy to have it right now and hold on to it. But I think my issue really is trying to maintain that sense of self and to some extent beauty when you don't have hair. I have never tried cold capping. I don't think I plan to even with future chemos because of the amount of time it takes and honestly the pain that I've heard other women describe with just being cold is not something that I want during my chemo experience. But I think I'm interested in everyone's thoughts on life in scarves, life in wigs, how they manage well, because wigs have never really been my favorite choice when I have been bald. So yeah, it's kind of around that.

SPEAKER_06 4:49

Makes perfect sense. How about you, Melanie? What's your experience been?

SPEAKER_02 4:53

So my experience has been hair thinning. I have not been on any chemotherapy agent that has caused me to lose my hair yet. But of course, with the targeted therapy, and then of course the endocrine therapy being put in menopause at 47, I have had a lot of thinning. And it seems I've had more this past year, even my stylist could tell the difference in the volume of my hair. My hair has always been really fine and thin, but I've always had a lot of it. And now I don't have a lot of it anymore. So I'm noticing like hairline receding, and we know we lose hair every day, but it's when you start noticing more and more, like in your brushes, there's an issue. And then when you can see it and feel it, and it does, it it does affect you because I don't think I have a pretty shaped head. So I think when I do go bald, I'm gonna have to cover that thing up. But some people can really rock the bald heads, they look really good.

SPEAKER_04 5:53

Well, don't worry, everyone will tell you that you have a beautiful bald head, even if you probably don't, because you just kind of put the lipstick on and the big old earrings.

SPEAKER_02 6:03

But yeah, I kind of dread it. You know, I can say right now, I don't think it'll be that big of an issue, but you never really know till you're in that. So my biggest thing has, yeah, just been the thin, and it seems like it's been more this past year, and this is five and a half years into this.

SPEAKER_06 6:20

Well, I think I might have the most experience with losing hair of all of us because I have lost my hair fully three times in this metastatic experience. So let me just throw out a few things that that I've done, and then we can go back through everybody just to see what each of you have done. So initially they thought I was stage two. So I had the red devil, Adriamyosin, and Adriamyosin is very well known to cause full hair loss. And so my doctor wrote me a prescription for a hair crotch thesis. And most insurance companies do have some amount of coverage for a wig. So I had a voucher for$500 to get a wig. Now that was not enough to take my hair and make a wig of my hair, which is something that is possible. It's a little more expensive than the$500 stipend that I had. And so what I did was, which is actually what my doctor suggested, I went to a store that catered to men who would dress up like women. And let me tell you, I got the best makeup advice from the very, very nice young men at the store who helped me figure out how to draw my eyebrows on and deal with other things. Because when you lose your hair completely, you lose your hair in all places on your body, meaning your eyelashes, your eyebrows, and everywhere else. So it's kind of nice not to have to shave my legs for a little while. But I did find that getting a real hair wig through the money that I got from my insurance company was something that was helpful because it did look pretty real. And it came with lots of instructions. It also came with the makeup instructions of that particular store. And so that's always my first recommendation to people find a place in your area who would cater to people who are trying to, and it doesn't have to be drag queens, but just a place where people who are in plays, right? And they have to put makeup on to look older or put makeup on to look younger, right? Those stores will often have lots of tricks. And I wore that wig one time. One time. Being in Florida, it was really hot and it was itchy. And quite frankly, I never felt comfortable in it. Maybe if I had worn it more often than that one time, maybe I would have gotten used to it. But it was there. It was always a possibility for me. But I very much preferred the really, really soft hats, beanies, scarves. You can get something to match whatever outfit you want. That was nice. I also got a henna tattoo on my head. So henna is just a die. Um, and I went to somebody who was like leaves and flowers all over my bald head, and I got lots and lots of compliments about that. So I chose to not hide the fact that I didn't have hair. And all three times that I lost my hair, I did the same thing. So the way that I always know that the hair is going to fully drop out of my head versus just thin is the hair follicles really hurt. Which is a very strange, yeah, it's a very strange feeling, right? I liken it to like the hair follicles are screaming as they're dying. Um, and so then when that happens, then I know it's time to shave my head and not worry about trying to comb over the bulb areas or whatever, that it's all gonna fall out. There's no point in trying to maintain it. I've also found that as my hair has grown back, that if you shave it a couple more times, even if it's growing, starting to grow in, it grows in evenly. And at a lot of times when the hair has grown back in, it's really fuzzy, like the baby fuzz. I know when it's our babies, we like never cut their hair at that point because we want as much hair as possible. But for me, when it came back fuzzy, that was time to shave it so that it came back a whole lot more even. But even on and her too, which isn't supposed to technically uh cause full hair loss. Once it started really thinning and started hurting even just a little bit, I just went ahead and shaved it and it actually grew back much more evenly, even though it has grown back a different texture every single time. So that those are a couple of things that I've done. The other thing that I did was I had my integrative doctor run a panel, full panel on all the vitamins, because there are several vitamins that are linked to your hair. And I was able to save some of my hair growth by looking for vitamin deficiencies. And biotin is also a supplement that a lot of people will use, although it can mess with your tumor marker values. So if you're doing any kind of supplements, always want to make sure you let your doctors know if there's a supplement that you are trying. Lisa, what did your daughter suggest? She said she did a little bit of research.

SPEAKER_03 11:38

She's got the world's most gorgeous hair. And at the moment, she's half teal and half purple, and it's almost down to her waist. She just does it. She at one point in her life wanted to be a hairdresser. So she's very in tuned. So she was trying to help me. First, she sends me to I don't should we say product names? Probably up to you, but we always have the caveat of double check with your doctor before you try anything. Oh, absolutely, absolutely. So she sent me to Ulta and said, look for something that would create volume. And so I did try that. I finally had some regular old shampoo that I bought at, you know, CVS. There was volume shampoo and conditioner. There was another peptide oil that she suggested, but I was concerned about, I didn't want it to interact with anything, and it was weird. It was weird on my head, and I ended up returning that. The other thing she suggested, there was curl cream. I actually stole some of her curl cream, unbeknownst to her. Hey, Jen, thank you. So, mother-daughter, and that's what I used this morning, and that seems to help. I do feel like I need a better cut, a good cut. She also, which my oncologist had suggested this, monoxidil. But I'm nervous about that in terms of even though the oncologist said I could do that, I don't want anything to mess with what I'm taking. Number one. And then number two, my daughter and I are actually having this text conversation yesterday while I'm waiting for my frivolous shots. And she's going, Well, why don't you try it? She goes, What's the worst that could happen? You'd have to wax your chest. And I'm like, dude, this is not happening. Not happening. I will wear the pirate do rag before I have to wax my chest. Okay. Just not happening. So, and when this adventure started three years ago when I was first diagnosed, and I'm in the middle of the meeting with all the other reporters, I grandly announced to my editor, I don't know what my treatment's going to be. And if I have to, I'm wearing a pirate do rag to the meeting. Is that okay with you? And he went, Yes, it is. And I'm okay, I'm good. So if it comes to that, it comes to that. But it's very thin for me, for Lisa Bacchus, this is really thin hair. I have never had hair this thin in my entire life. So I have had some success with the shampoo, some success with the curl cream, but ultimately I think I need a better cut. And I would like to stay on this trial as long as possible. So I don't know if I'm headed for the wig, but if I have to, I will. I'll do that.

SPEAKER_06 14:23

Finding hairstylists who have had some experience with people going through cancer can always be very helpful. Jill, what have been some remedies that you've tried?

SPEAKER_05 14:35

I think I also have very fine hair, but a lot of it. And similar to you, when I get the kind of nasty tingle, I know it's all going. So I've done the same things where I immediately had shaved it. And I agree with you. For me, the wigs just didn't pan out and the soft things on my head worked out a lot better. I think when it regrew, thankfully, it's always regrown and pretty thick. But I do think that there have been more studies talking about monoxidal use either during therapies or afterwards to help promote that regrowth, especially in people who might have thinner hair. And so I was actually impressed that Lisa that you mentioned that your oncologist had brought that up. They're not going to bring up things that they're really worried about interfering with your cancer unless they really think it's safe. So I I would actually take that as a huge win that it was brought up. They're always going to be more conservative than we are when it comes to things that could harm us potentially. And so that's something that I I think a lot of people should explore and talk to their oncologists about if it's something that they're interested in.

SPEAKER_06 15:42

How about you, Melanie? Have you tried anything yet? I know it hasn't gotten to the point of falling out yet, but you've had some thinning.

SPEAKER_02 15:50

Yeah, so for me, I take a vitamin that's supposed to be good for hair and nails. I don't know if it really works or not. But as far as my hair, I try to get it cut where it looks fuller. We just try to do things that are not really going to make the hair any stronger. I try not to use too hot of heat products on my hair, like curling irons and such, not to have it at a too high temperature because that can cause the breakage even more. But yeah, I really haven't found anything to help bring the fullness back to my hair. I've just kind of let it run its course and just try to take care of the hair that I do still have left.

SPEAKER_06 16:29

They say silk pillowcases are a really good thing to use because it doesn't pull on your hair. Also is really good for your skin and not too expensive. Silk pillowcases you can get on Amazon, which is what I've done. I've heard some people will inject plasma into their scalp to try to encourage hair growth. And there are also toppers. So hair that oftentimes men who have some receding hairlines, they will actually have a topper sewn on or somehow affixed to the top of their head to provide some more fullness on the top. So there are a lot of different options depending on the amount of money you want to spend, maybe the creativity of your hairstylist. But for me, the very best thing has been to find a hairstylist who has some experience and can offer some suggestions. I'll look in a magazine and be like, ooh, I think this haircut is cool. And she'll be like, That will look horrible on you. So it's really helpful to have that person who's just looking at the at the shape of your face, the texture of your hair. Um, and I don't know about you, Jill, but having my hair returned first time super curly, the second time a little more like my norm, which was wavy, and then this third time it grew back in stick straight. And so I've had to adjust to all those different textures also as my hair has grown back, which is that was I was not expecting that. Jill, did your hair grow back? Well, I hear that.

SPEAKER_05 18:10

I hear about the chemo curls, right? And maybe because I didn't have AC, I never got those. And it has grown back maybe a little bit darker in color. Um, but honestly, the same both times it's just grown back, I would say my normal hair. Nice, nice.

SPEAKER_06 18:27

I also lost most of the gray. That was one other silver lining. I was pretty much gray and coloring my hair by the time I was diagnosed, and it has grown back with fewer gray each time. So there's a silver lining.

SPEAKER_02 18:43

Also, I've heard that you can actually have hormone curls, which happened to me after being put in menopause. I noticed my hair starting to grow in curly, and I've never had curly hair, but it's mostly the back is like really curly, but then the top is like straight and heavy because I never had the strong chemo. I've just had targeted therapy. So it's kind of like hormone curls, is what they would call it.

SPEAKER_06 19:09

All kinds of different things. I think from a psychological perspective, the thing that always impacts me when I've lost my hair is when our hair looks maybe it's different for us, but we have a full head of hair. We're able to pass as healthy a little more easily. And when we have no hair on our heads, or it's really thinning out, people start to see visually that we're sick. And I find that I'm often treated differently, or people react differently to me when I visibly look sick. Has that been something that you ladies have experienced?

SPEAKER_03 19:49

I just feel in general, and I'm older than all of you guys, as some of you have learned, really have got the mentality in the heart of a teenager, and I'm very stiff from the medication, and I'm having this wacky, really whitish gray hair that if I don't somehow straighten it, is super kinky. So I look kind of crazy when it's not done. And I deal with a lot of people who I talk with on the phone a lot, but for instance, there was a particular officer who I've known for two or three years, and we met for the first time the other day, and he knows what I have when he knows how I sound. I sound absolutely normal. I sound like full of piss and vinegar as usual. I don't know if other people necessarily react to me that way, but it makes you feel like they're going to. And that's half the battle.

SPEAKER_05 20:46

I do think the psychological piece is actually the hardest piece, fulfilling that cancer patient look when you do have full hair loss. I think even the eyelash and eyebrow loss is tougher for me than truly the hair itself. And I know some people have tried microblading and that has worked for some effect. And maybe next time that's something I will try to just like maintain a little bit more of an appearance, I would like. But I think that's the harder piece. And it has the flip side, right? Like right now, I look healthy, if you will. I don't think from the outwardly I would look like I have, you know, metastatic cancer, but that doesn't reflect what's going on inside, right? And so I think it actually kind of works against us sometimes. People don't see that you're sick, even if you are.

SPEAKER_02 21:32

Yeah, I like to add, when I do lose my hair, I will no longer have people telling me, Well, you look so good. Which I know they're trying to be helpful, but you just want to scream, I wish I felt like that on the inside, like I look on the outside.

SPEAKER_06 21:50

So we've talked a lot about different remedies and what each of us have done at various points, whether for hair thinning or hair loss, or what we might do in the future. Regardless of what each of us have done, the most important thing I think I'd like to remember is just that hair it's not a little thing. It may seem like that in comparison to staying alive, but hair is such an integral part of who we are, of how we see ourselves and how the world sees us. And so it's very important to take it seriously. It's very important not to ignore the effect that losing our hair may have on our well-being, on our psychological well-being, and to find what remedies work for each of us and find the people around us. Maybe it's a family member, maybe it's a hairstylist, maybe it's a fellow MBC have or somebody else who's walking this same path who can speak into our experience and give us some ideas. But important to keep talking about it and important not to ignore how these changes to our appearance and these changes to our bodies really do affect us as whole people.

SPEAKER_02 23:14

We hope you have enjoyed this conversation as much as we did and learned a little along the way.

SPEAKER_06 23:21

Please don't take any of what we've shared today as medical advice. If you have a question about a product or if an intervention is safe for you, we encourage you to engage with your team. You will find links to each of the products and the interventions we talked about today in the show notes.

SPEAKER_02 23:36

We want to hear from you. Did you enjoy today's spotlight? Is there another product that you have had success with? Is there another symptom you would like to hear us talk about? Engage with us, and you may find yourself receiving samples.

SPEAKER_06 23:53

This episode was produced by me, Abigail Johnston, and my dear friend Melanie Zisk. Until next time, be well and keep driving.