Heba Abdalla is a member of the Breastcancer.org community who was diagnosed with de novo metastatic breast cancer at age 36 when she was pregnant with her third child. Being diagnosed de novo means that the cancer was metastatic at first diagnosis.
Heba has been on several different treatments, including some that are known to cause hair loss. She has used cold caps during treatment three times and in this episode of the Breastcancer.org podcast, she’ll tell us about her experience with them.
Listen to the episode to hear Heba talk about:
- her diagnosis and first treatments
- how she learned about cold caps
- why she wanted to use cold caps
- how well cold caps worked for her
- what she wants other people considering cold caps to know
Running time: 29:51
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Show Full Transcript
Jamie DePolo: Hello! Thanks for listening.
Our guest today is Heba Abdalla, a member of the Breastcancer.org Community who was diagnosed with de novo metastatic breast cancer at age 36 when she was pregnant with her third child. Being diagnosed de novo means that the cancer was metastatic at first diagnosis. Heba has been on several different treatments, including some that are known to cause hair loss. She has used cold caps during treatment three times, and she joins us today to talk about her experience with them.
Heba, welcome to the podcast. Thank you so much for sharing your story with us.
Heba Abdalla: Thank you, Jamie, for having me.
Jamie DePolo: So, first, give everybody some background. Can you tell us a little bit about your diagnosis and your first treatment?
Heba Abdalla: So, I was diagnosed when I was pregnant, as you mentioned. I was 36 at the time, and I had a very difficult pregnancy. Maybe like 3 months into it I had a lot of back pain and leg pain, and my OB-GYN dismissed all that to just pregnancy pains. And it just kept getting worse and worse. And then I had some pain in my next-to-the-liver area, and then more back pain. I started needing a cane to walk, and then a walker, and then at the end, I had to be in a wheelchair because I really could not walk at all from the pain, and you know, all of this was attributed to just pregnancy pain.
Jamie DePolo: Yikes.
Heba Abdalla: Then one day, the neonatologist was checking my baby. She noticed that I’m deteriorating very fast. So I told her a little bit of what’s going on. She’s, like, “Maybe you should check that.” I told her I had muscle pain around my breast area, and she’s like, “Maybe go check it out and just see. It’s probably nothing, but just go check it out.” And I did. And it’s just all of a sudden all my life changed, and I got the diagnosis of de novo breast cancer, stage IV.
So, obviously it turned my life upside down. And I had to have my baby early because I needed to start treatment, and I had him at 32 weeks — we had him out. And I had to have a surgery on my leg because it was actually fractured.
Jamie DePolo: Oh, geez.
Heba Abdalla: And then I started my treatment. The first line of treatment was Ibrance, and it was an oral treatment. It did not cause hair loss, but it did cause hair thinning. It took a few months, maybe around 8 months, and then it stopped working. And so I had to move to my second line of treatment — which was Abraxane — and that’s the one that caused hair loss. So, that’s when the whole cold capping began.
Jamie DePolo: So, how did you hear about cold caps?
Heba Abdalla: So, cold caps came as part of my personal research about Abraxane. I was doing research about the drug itself and what does it do to me and what side effects would it cause, and obviously one of them was hair loss. I just had my scheduled chemo for a certain date and went there into the office, and I was just continuing to research things on my phone. You know, “Can I save my hair at all?” And then this thing came up and, “Yeah, you could use cold caps, or Paxman,” or something. I was like, “Oh, my goodness. It could be done. I can actually save my hair.” But it was right there at the office, and it was a bit too late.
I had my friend with me, and my friend’s husband is an oncologist in a different state. And I just immediately called him, and I asked him, “Okay, can I...is this legit? Can I actually do that?” And he said, “You know, cold caps is not FDA-approved, but they do have a Paxman machine. It has proven to be effective. So, maybe ask if, at the hospital that you’re getting treatment, if they provide that.” Well, then, “Okay, probably should I just reschedule my treatments and get some others dates so I could get this set up?” And he said, “No, this is more important. Just start your treatment now and you can look into it.”
So, anyways. I just did have my treatment that day, and then I looked more into it and I called around for a few companies out there. My hospital did not have the Paxman machine there. So, I did have to go the manual cold cap route. And I did some research about different companies and stuff, and I called — I think it was Polar Caps, the first one I went with. They sent me the kit in a week or so, so it was before my second treatment. And they sent me the instructions of how to use them and how to pack them in an ice box — and the whole nine yards — and I started doing them from there.
Jamie DePolo: So, it sounds like — I don't want to interrupt you — but it sounds like you had to do a lot of the research on your own. Like, your oncologist and your treatment center — nobody mentioned it to you there.
Heba Abdalla: Oh, no. Nobody mentioned anything about that. I mean, actually a lot of things I do research on my own. And Breastcancer.org is a great resource, especially for managing side effects, and people use a lot of things like vitamins or supplements, or tricks about, for example, icing your hands and feet for neuropathy — a lot of stuff that I get from Breastcancer.org because of people’s experiences. So, that’s been a great resource.
But my oncologist usually would just tell me — I mean, she’s a great person and a great doctor — but she would just stick to the list of, “This is going to happen to you probably.” You know, A, B, and C. But then not so much as how to handle all these side effects, unless I ask and do a deeper inquisition into it. But she would not — and I actually discovered that a lot of oncologists do that. It’s not only her. It’s just they think, “Okay, the most important thing is just treating you and getting the mass under control, or the cancer under control.” So, this is just part of life from now on, you know? You’ll deal with it, kind of thing.
Jamie DePolo: Okay. And so, it sounds like you used the kind of caps that you have to keep in a cold box with dry ice, and then also you have to — if I’m remembering right — you have to switch these caps out during your chemo treatment because they start to not be as cold. Is that right?
Heba Abdalla: Yeah. So, the way the cold caps work is you have to keep them on dry ice for an hour at least before you start using them, and they have to reach a certain temperature. But when you get the caps from a company, they usually send you the cooler, and the thermometer that you need to use — and obviously the caps — and either boxes or kind of sleeves to keep them in to keep them protected. And then they reach a certain temperature, and you start using them half an hour to 45 minutes before you actually get the IV treatments — the chemo treatments — and then you change them every 30 minutes from there. Like, every 30 minutes you get a colder one from the bottom, and then you put it back inside the box to re-cool again, and you do that throughout the treatment, and then for 4 hours after the treatment ends.
Jamie DePolo: So, it’s a significant commitment on your part in terms of both money and time, it sounds like.
Heba Abdalla: Definitely. Yeah, definitely. It’s a lot of work, and you know, I would say you would need somebody with you. Because when you’re hooked to all these machines and IVs and what not, it’s hard for you to get up and get a cap from the cooler and then defrost it a little bit so you can actually mold it onto the head, and do all that. So, you need somebody to kind of do these things for you, at least initially. I mean, I’ve done this a lot — a lot of times — and towards the end I was, like, “Okay, I can probably do this on my own a little bit, if I don’t have somebody with me that day.”
But definitely having somebody with you makes it a lot more tolerable. And unfortunately, the nurses — I mean, I’m sure it depends on the place you’re getting the treatment — but in my hospital the nurses usually do not like [to] help with that. They have more important things to handle, and they have patients they need to take care of. So, they can’t just take a chunk of their time and sit there next to me changing caps. So, that’s not an option.
Jamie DePolo: Okay. And now I want to ask you, too, about any headaches or side effects because — and, of course, we’ll get to the effectiveness of the caps — but some women have mentioned, I believe on our discussion boards, that they got a really bad headache. I mean, I’m going to say like an ice cream headache, but I know it’s probably 10,000 times worse than that.
Heba Abdalla: Oh, yeah.
Jamie DePolo: So, what was your experience there?
Heba Abdalla: So, the first cap that goes on is really bad. You know, you have all of a sudden just this very, very, very cold thing on your head. And it’s — I mean, again, for those who don’t know — dry ice makes the cold caps reach like negative 50 degrees Fahrenheit — you know, cold. It’s really cold. It’s not like a freezer cold. It’s just much, much colder. The first cap, you get this immediate headache, and kind of a nauseous feeling — like, “Oh, my goodness. What happened to me?” But then, as you change the caps — because you’re basically trying to maintain that state, you’re trying to maintain having your head so cold — it gets better. That first shock is the worst.
But then, again, on the boards I’ve read that you can take like Tylenol or something 2 hours or an hour before you start the capping, and it does help. It does help a lot with the pain.
Jamie DePolo: Okay.
Heba Abdalla: You also have to cover your forehead and cover the ears and any areas of your skin that could be — like it could touch the cap because you can get like a frostbite on any skin that’s not covered. They give you those, like, moleskin things that come with the kits, but what I have found to work best is like daily use pads — period pads, even. You just cut them in shape to shape them around your head and around your ears, and that really helps a lot. Because the moleskin, it really tends to stick to the skin so much with all the freezing.
Jamie DePolo: Sure.
Heba Abdalla: And then when I take them off, it’s really painful to take them off.
Jamie DePolo: Oooh. I bet.
Heba Abdalla: So, the period pads are actually better in that — or daily use pads — are better for that matter.
Jamie DePolo: What a great idea.
Heba Abdalla: Yeah, and I’ve had a lot of nurses will look at, “Well, what is she doing with all these pads?!” But you know, they know me. So, they ask questions and I tell them, and it’s like, “Mystery solved!” But I’m sure it looks weird to somebody who doesn’t know what’s going on.
Jamie DePolo: Yeah, but no, that’s very inventive. That’s great.
So, I know that you have small children, and we talked a little bit before — that’s part of the reason that you wanted to keep your hair, right, for your kids? Was that part of it?
Heba Abdalla: Yeah, definitely. So, again, the diagnosis really turned my life upside down, and it was really a shock to me. And even the bigger shock was the de novo metastatic breast cancer, because when I actually first got diagnosed, when I went to the surgical oncologist, she said, “This is a small lump.” It was less than 1 centimeter, and, “We can just do a lumpectomy and you’ll be fine. You can even do it when you’re pregnant. It’s not a big deal.”
And then when I did an MRI, just to check my lower back pain and my liver pain, they found the mass. So, it just changed, really within less than 24 hours. It was like, “You’re not even a candidate for surgery, for mastectomy. This is it. You just have to live with that. You have to get treatment, and you have to get the baby out,” and all that. So, just, it was a lot of changes all of a sudden, and I just needed something to be normal, you know? Like, it’s just everything was so different all of a sudden.
And I have this baby in my hands, and I have two other kids at home, and I just wanted something. I wanted them to look at me and see, “Okay, she’s not that sick, dying person. She still looks like mom a little bit.” So, that’s why I decided to do the cold capping. And every time I feel like, “Okay, this is getting too much. I can’t handle this. It’s just been making my days so much longer,” I remind myself that this is why I’m doing this. For myself, obviously, and for my self-esteem — to raise my spirits up a little bit — but also for my kids and my family.
In life, I cover outside of home because of my faith. So, people don’t really see my hair, anyways. So, it’s not for my image outside the house, but it’s just really for me and my family, and just to keep a sense of normalcy around the house a little bit. That’s what kept me going and to use it and to do it. Three times actually, and on three different treatments.
Jamie DePolo: Okay. Okay, and I imagine — I don't want to put words in your mouth — but it might have also given you kind of a sense of control, too? Like, it sounds like so many things were changing so fast. Like, this was one thing you could be in charge of.
Heba Abdalla: Yeah, definitely. Definitely, yeah. You know, a lot of the things with this disease are just thrown upon us, and I can’t really control it. All I could control is just doing my research and seeing how I could manage my side effects and how I can manage my image — and this was one of them, big time. Definitely. Like, I could control this. I mean, obviously it might not have worked, but at least I tried, and I did this, you know? With all the things that this disease keeps throwing at me, I just try to do my best, and I’m like, “Okay, this is how I control it.” I’m trying to research things, and how to make my life feel better. If it didn’t work, at least I have no regrets.
Jamie DePolo: Sure.
So, how did the cold caps work for you? Now, I know you’ve used them three times. So, if you could maybe talk about each time — was one time more effective than another? I know sometimes it depends on the type of chemotherapy that you’re being treated with. So, tell us a little bit about the effectiveness.
Heba Abdalla: Of course. So, when I reached out to the companies that I did — again, Polar Caps, and then I switched to Penguin later on — they would ask you which treatments you're on, and then they would kind of give you an estimated guess on how effective it would work. They would tell you, for example, some of them have 100% success rate. Some of them have 70% success rate, and so on.
So, mine — because as I mentioned earlier, I did have that first IV treatment, the Abraxane, without the cold cap. And then I started on the next, on the second one, I think that kind of made it not work as well as it should have, being on Abraxane, because my follicles were hit the first time, obviously, with the treatment. So, I lost about like one half of my hair on Abraxane, but it did not come out in lumps, and my hand was not full of hair falling out.
Jamie DePolo: Okay.
Heba Abdalla: It kind of just fell out uniformly. So, it looked more like my hair is thinning, more than it’s just, like, I’m getting bald.
Jamie DePolo: So, you didn’t have like big bald spots. It was just kind of like evenly thin.
Heba Abdalla: Evenly, yeah — evenly, evenly thin. And when I asked my doctor, like, “I’m doing this, and this is happening to me,” she’s, like, “You know, this is a sign that it’s working.” And she was actually surprised, because she was, like, “I didn’t think it would work. I didn’t want to tell you that...”
Jamie DePolo: Oh, God.
Heba Abdalla: “…but I didn’t think it would work.”
Jamie DePolo: Wow.
Heba Abdalla: Yeah! “But, it looks like it’s working because otherwise by the second or third treatment on Abraxane, you would probably have seen a lot of bald spots on your head, and at this stage people usually opt to shave their heads,” so they save themselves all the heartache about having hair fall out every day.
Jamie DePolo: Yeah.
Heba Abdalla: But yeah. She took it as a sign that this is working. So, that obviously reassured me a little bit that it is working. And she said, “Probably, if this is happening to you, then that means it’s working, and your hair follicles probably are going to be saved.” Like, even the hair that falls out would regrow faster than just not using anything at all, and that was true. I was on Abraxane for about 7 months, and 4 months into it, everything that fell out started to grow. Obviously, I looked like a mess because I have, like, different hair lengths. I have short, teeny, tiny bits of hair here and there, and then mid-sized hair, and then my regular hair length. It was just a mess, and I can’t even cut it short because you’re not supposed to cut your hair when you’re on the cap.
Jamie DePolo: Mm-hmm.
Heba Abdalla: So, you know, I rolled with it, which was okay. It’s hair, and it’s covering my head and I’m okay.
Jamie DePolo: Sure.
Heba Abdalla: The second time around I was — I mean, I had a few other lines of treatment between the Abraxane [and] the second one that caused hair loss: I had Xeloda and then Doxil and then Verzenio and Lynparza. I had a number of things until I had to take Halaven, and Halaven also causes hair loss, but obviously this time I was a pro at it.
Jamie DePolo: Yes.
Heba Abdalla: And I know what to expect. I just called Penguin Caps and told them when I need to start my treatment, and they sent me the kit, and it was easy, you know? I knew where to get the dry ice from. I knew how long it takes, and what to use. And so, it was definitely a much better experience second time around, and it was more effective as well. I lost maybe like 1/4 of my hair, but again, it looked like thinning more than anything.
And then when Halaven stopped working — again, maybe 6 months into Halaven — I went into something called GemCarbo, and I can’t remember one of them. They did like two treatments. Gemzar and carbo something, and...
Jamie DePolo: Carboplatin.
Heba Abdalla: Carboplatin.
Jamie DePolo: Yeah.
Heba Abdalla: And then I think one of them — I think carboplatin is the one that causes the hair loss, and the other one doesn’t. And again, it was just very familiar at this point. And I also lost maybe 1/4 of my hair on that one as well.
Jamie DePolo: Oh, wow. That’s very impressive.
Heba Abdalla: Yeah, but then again, towards the end of the treatment — even a few months into any of these treatments — the lost hair grows back. So, that means the hair follicles are saved and they can actually do what they need to do.
Jamie DePolo: Right.
Well, so it sounds like you almost got — if this is right, you can tell me — almost two benefits from using the cold caps. So, you kept, it sounds like, quite a bit of your hair, but then it also grew in a bit faster than if you hadn’t used the cold caps.
Heba Abdalla: Yes. I mean, I haven’t tried not using them. So I don't know the difference. If I hadn’t used them what would happen?
Jamie DePolo: Right.
Heba Abdalla: But from the boards on Breastcancer.org, I see that people have a hard time having their hair grow back sometimes on different treatments. So, I’m assuming that this is why the cold caps help you a lot with regrowth. Definitely.
Jamie DePolo: Okay, and so you were pleased with the result?
Heba Abdalla: Yeah. Again, it gave me a sense of normalcy. It’s nice to look in the mirror and just have a familiar face looking back right at you, you know? This is me. I look maybe a little bit different. My hair’s a bit thin, but this is me.
So, psychologically it helped me a lot. It helped my kids a lot, and that alone made it possible for me. It made me be able to put up with all the headaches and the freezing cold and the inconvenience of adding at least 4 to 5 hours on top of a very long day to begin with at the chemo center.
Jamie DePolo: Yeah.
Heba Abdalla: To me, the ends justified all the issues with cold capping.
Jamie DePolo: Sure. And did your children notice or say anything about your hair? Do you think they noticed at all?
Heba Abdalla: I mean, obviously, they know what I’m going through. So, it’s not like a secret that I’m doing chemo. But they never said, “Your hair looks thin,” or, they actually said, “Oh, my God. It’s working!” They know, from seeing lots of movies and stuff that people who do chemo, they lose their hair, and I didn’t lose mine. So obviously it is working, and I think they appreciate that. They never actually said that in so many words.
Jamie DePolo: Sure.
Heba Abdalla: But just the look in their eyes that they can see their mom look okay and kind of healthy is — I think it made a big difference on all of us at home.
Jamie DePolo: Mm-hmm. Mm-hmm.
Heba Abdalla: Obviously, the other problem that I get — and other people talk about it as well — is how frustrating [it is when] a stranger sometimes will come up to you and, like, “You look so healthy. You can’t have breast cancer.”
Jamie DePolo: Oh, yeah.
Heba Abdalla: You know?
Jamie DePolo: Yeah.
Heba Abdalla: And you can’t have it both ways. I mean, you either look healthy or you don’t look healthy. You can’t have it both ways.
Jamie DePolo: Yeah. A lot of people have said that to me, especially people who maybe are on treatments where they don’t lose their hair or they don’t look particularly sick, but they’ve still got metastatic breast cancer, and, you know, not everybody who has metastatic disease looks… I don't know what to….like, shriveled, and scary, and horribly sick. So it’s a conundrum, and maybe just us talking about it will help other people understand. Because you can still be very sick but not look like you’re very sick.
Heba Abdalla: Exactly. Exactly. Exactly. So, you know, you don’t want to look sick for your family, but at the same time you want people to be understanding and supportive of you, not based on how you look, but based on how you feel. Like, if I say I have breast cancer, I do have breast cancer. I’m not lying about it because I look okay.
Jamie DePolo: Right.
Heba Abdalla: So, yeah. It’s kind of — as you said — it’s a conundrum of how to keep the balance between the two. But definitely, cold capping helped me a lot to deal with just a lot of emotional and psychological trauma that came with the diagnosis at kind of an early age, with having young children and having my life ahead of me. And this just kind of eased the pain a little bit.
Jamie DePolo: Mm-hmm. Mm-hmm.
Well, Heba, you have so much experience. I want to ask you: if somebody were newly diagnosed and going to have a treatment that made them lose their hair and they were considering cold caps, what would be the top three things you would say to them? What would your top three pieces of advice be?
Heba Abdalla: So, I would say, you know, do you. Do what makes you feel okay with the diagnosis. It’s a lot to handle, honestly, as far as just accepting that one is sick and possibly dying. And it’s a life-changing diagnosis, really, especially if it’s stage IV.
Just do you. I mean, I know that this podcast is going to be heard by people of various stages of diagnosis. Maybe stage 0, I, II, III, whatever, and that actually changes the whole cold capping experience quite a bit. Because, I did it, personally, because I thought, “Okay,” — once I came to the realization that this is going to be my life, I’m going to just be on treatment for the rest of my life, one after the other — I was, like, “Okay, when would my hair come back? If I have treatments that cause hair loss or hair thinning, then when would my hair have a chance to grow?” So, that thought honestly played a big part of the decision as well.
Jamie DePolo: Okay.
Heba Abdalla: Maybe if I was an early stage, maybe I would [be] like, “Okay, I have six rounds of chemo and then maybe, like, radiation therapy or whatever.” I’m not trying to belittle anybody’s experiences; I know it’s still horrible to go through any of that. But I’m saying, personally, if I knew that this had some kind of end in sight, I might not have done it. I know personal friends who tried doing cold capping and they were, again, early-stage breast cancer, and they just couldn’t. They were, like, “I’m too sick.” You know, “This is making me nauseous, and I just can’t do it. “
And they have my utmost respect. I can’t patronize somebody: “Oh, you couldn’t handle that.” No. You know your body more than anybody else, and you know your needs more than anybody else. So, if you feel like you can’t do it, then you can’t do it. You know?
But just know that this is an option out there and it does work, and again, if it didn’t work, you tried your best and you gave it a shot.
Jamie DePolo: Mm-hmm.
Heba Abdalla: Again, the cost is another prohibitive thing. I mean, not everybody could probably handle that cost. It was a struggle for me for a little bit, and unfortunately the insurance does not cover it. At some point on one of the boards, I read that some women were able to get it through their insurance. So, I tried doing that, too. And my doctor was more than willing to write whatever code that she needed to for me to submit this through insurance. I think she wrote something about a hair piece or something like that.
And the insurance took it for a while, for a few months, but then they wrote saying, “We can’t accept this anymore. This is not an essential part of your treatment. So, we cannot accept this through insurance.” So, that in itself is another factor to factor in. I wish that people know more about it, but at the same time, I wish doctors know more about it. I wish the insurance can take some of the cost away. So, I think a lot of players need to be aware of this option and how it can help people psychologically go through a very traumatic diagnosis.
Jamie DePolo: Okay.
Heba, thank you so much. I really appreciate you sharing your story and all that you’ve learned and your experiences. I think this will help a lot of people.
Heba Abdalla: Thank you so much, Jamie, for giving me this chance. And I really hope this does help somebody, because Breastcancer.org has been amazing for me as a resource and just as a supportive tool. And the Community out there is just so amazing. People help each other without even knowing you, and they give you their hours and hours of research, and Googling, and personal experiences just to support you. And if — honestly — if it wasn’t for them, I probably would not even been doing cold capping. So, I hope this helps somebody. And thank you for giving me the chance to share my story.
And everybody who’s struggling with breast cancer, or any type of cancer — or any disease as a matter of fact — is in my prayer. And I hope this eases their pain, and I hope everybody’s healthy and happy.
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