In this episode of Fine, But Not Fine, I’m sharing my journey with Narrowband UVB light therapy—how I started, how I adapted, and how I made it work for me.

At first, this treatment meant driving to my doctor’s office three times a week, juggling appointment scheduling, and reshaping my daily routine around it. But after a year, I transitioned to a home light unit—a total game-changer that gave me flexibility, saved me hours of commuting, and allowed me to take control of my treatment.

My Experience with Narrowband UVB (NBUVB) Light Therapy – Eps. 6 – The Fine, But Not Fine Podcast

In this episode of Fine, But Not Fine, I’m sharing my journey with Narrowband UVB light therapy—how I started, how I adapted, and how I made it work for me. At first, this treatment meant driving to my doctor’s office three times a week, juggling appointment scheduling, and reshaping my daily routine around it. But after a year, I transitioned to a home light unit—a total game-changer that gave me flexibility, saved me hours of commuting, and allowed me to take control of my treatment.

Transcript – Ep. 6

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, healthcare battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Starting Narrowband UVB (NBUVB) Light Therapy: The Clinic Phase

Hey there, and welcome back to Fine, But Not Fine. Today I want us to talk about my experience with Narrow Band. UVB, light therapy. NBUVB, how I started, how I adapted, and ultimately, how I made it work for me. And if you’ve ever had a long term treatment that required a serious time commitment, you probably understand how much it can shape your daily life.

For me, it started with driving to my doctor’s office three times a week, but after a year of that, I transitioned to a home light unit, and I used that for another four years, which was a total game changer. Oh, and along the way, I did somehow manage to turn this whole experience into a laundry room makeover, because if I was going to spend that much time in there, it might as well look nice.

Navigating Appointment Scheduling Challenges

Now let’s get into it. When I first started Narrow Band UVB, my dermatologist, as I mentioned earlier, had me coming into the office three times a week for treatment. Now, it wasn’t difficult, but it did require some planning. Scheduling was a little bit of a puzzle, and this is because I could only book appointments one month at a time, and the slots from month to month, or even the days within the week, the slots just weren’t always the same, and since the office was only open Monday through Friday, I really kind of had to be strategic, because my treatments at that time had to be spaced out with at least one day in between. So there really wasn’t much wiggle room at all.

Inside the NBUVB Treatment Room: What to Expect

Now, the treatment itself was simple. I’d check in, I would go to a private room that was all set up for me, and this was the room that held the Narrow Band UVB equipment. I would lock the door. I would undress completely. I would put on my protective goggles, and they’re like you would see if you have ever tanned in a tanning booth in your life, or seen that. I’d pop in my airpods. I’d stepp into this walk-in light booth. It was six sided, and then I would turn it on.

NBUVB Treatment Duration and Progression

And in the beginning, it started with literally just a few seconds at a time. You know, it could have been 15 seconds or 20 seconds, something like that. And it would gradually increase with each session, because this is light, it can burn you, right?

So, the dosing was all managed by a medical professional, and in the beginning, the goal was to increase the time I spent until clearing was achieved. So basically, to see my patches on my skin go away, and my reaction to it had to be monitored to make sure, as I mentioned, I wasn’t getting burned. So like a sunburn.

Managing NBUVB Side Effects: The “Crispy” Feeling

If I did get pink, and that’s really difficult for me, because I’m a very pale and very pink person, if I did get pink, I referred to it as being a little bit crispy. And I would tell the medical professional that was, you know, overseeing my care, that I was a little crispy. Or even sometimes I could walk in and she’d be like, OH, we’re turning the dose down, right. And that dose would go down, and that dose would hold at a lower level until my skin didn’t look like I’d been had a really bad sunburn, essentially, and then it would be appropriate to increase it again and move forward. And it worked really well.

The staff was awesome at the dermatologist that I went to get this done at. But you know, the time commitment was, you know, it’s a small amount of time in the booth, seconds or minutes. Most of your time is spent getting dressed and undressed. But I led a marketing team that managed multiple marketing campaigns and all of the requisite activities you can imagine with that. So between driving to the office, driving to the doctor’s office, undressing, treating dressing again, and getting back to my day it it became a challenge to fit in, and I did make it fit in. I built my schedule around it. Every month I had to build my schedule around it, so I would have to have very clear standing meeting times that just weren’t interruptible, and then I would have to work other things around that.

So, my approach was that I would try and book my appointment as late in the day as possible, and this is because the doctor’s office had several people who’d been receiving light treatment who preferred first thing in the morning, and that’s when they came in. I wasn’t going to try and move in on a crowded time. I also carpooled to work with my husband, so I’d try for an appointment sometimes around 3pm or later, with a goal of being as close to the end of the business day as possible, because these were short visits, right?

But if I had a 3pm appointment, what I would do afterwards is I would go to a park nearby, I would walk, and I would clear my head as I wondered what the future held for me. Then after picking up my husband, hitting the road, going back home, you know, we’d have dinner, then I would sit down, and I would finish up any work that I had that needed attention that happened after I left the office.

Transitioning to Home NBUVB Light Therapy

So it should come as no surprise that after a year of this, I started looking for a way to continue treatment that didn’t require so much back and forth and scheduling magic. And that’s when I asked my doctor about a home unit, and that year was really important, because we needed to know it worked and that we would need to continue it to make it worth the investment.

Now, getting a home unit did take some effort. My doctor had to prescribe it, and insurance approval wasn’t instant. They had to review this. This is an unusual purchase, home medical equipment. There needs to be an excellent case for it, and that case needs to really involve that it’s better for the insurance company in addition to being good for the patient.

But after some back and forth, I did finally get insurance approval for home medical equipment, and the unit I received was a three panel system from NatBio, used to be called National Biological, and I think they’ve recently shortened that, and it’s not a full walk in booth like at the doctor’s office, but it’s enough to do the job and something that I had room for in my home, because these are not small booths.

Okay, at that time, the cost was about $5,000 and my portion was right around $1,500. And it’s on casters, so I can roll it out to use, and I can fold it closed and store it up against a wall or something, if I want to. And having it at home was a total game changer.

The Pros and Cons of NBUVB Home Light Therapy

I got a lot more flexibility, obviously, because there was no more scheduling around office hours, I could treat when it worked for me, and that usually was before I got dressed for the day, or at the end of the day, when I would be changing from work clothes to home clothes, or maybe going before bed, or something along that lines, there is a caveat here.

Often what happens when we can do treatment at any time? We don’t do it on a schedule. So, if this is something you’re considering, I would strongly encourage you to have an at home schedule that you stick to as much as possible, but take advantage of that flexibility so that it works for you. Don’t keep delaying it.

Now also, I got the benefit of no more driving to my doctor’s office for treatment, because that was on the opposite side of the town of where I worked, and it wasn’t on my way home to where I lived that made life easier. I didn’t have to interrupt the middle of my work day. I could have a full work day right at the same effectiveness.

When you get a new piece of equipment, like a light box, you have to start really low and come back up, because your light bulb age is different than the light bulb age where you were getting treatment, and the power may be different. And there are a whole bunch of things. So you kind of have to step back and then work your way up.

But I did have to track my sessions and follow my doctor’s guidance. I was executing his prescription. I kept a spreadsheet with dates, times, doses, the time between treatments, and my reactions and sometimes, you know, I could really be a toddler and get sick of it all and skip treatment on a day. I might do it the next day or a couple days later, and I’d mark that on this sheet. I’d put in there something like being toddler, didn’t want to do it.

You know, I had to be honest here. My doctor really, he needed accuracy and how I was delivering his prescribed treatments. Because if he doesn’t know what’s going on, it doesn’t help him do his job. And he needed to know the human side. He needed to know I didn’t feel like it because I was ticked off. I HAD to do it. That’s actually important information.

The Laundry Room Makeover Side Effect

Now here’s where things took a little bit of an unexpected turn. Obviously, I needed a place to set up my home unit and in my house, the best spot, well, that was the laundry room. At first I thought, okay, not a big deal. I’ll just treat in there. But then reality kind of hit. If I was going to stand in my laundry room several times a week, kind of staring at the same walls, even though I know I’ve got goggles on. It’s the concept, right? While taking my lymphoma treatment and thinking about the fact that I’m standing in there taking a treatment for lymphoma, which is not a great thing to think it needed to look better than some laundry room, right?

So, in what might be the weirdest side effect of a medical treatment ever, we redid the entire laundry room, and we —my husband —painted the walls this lovely, deep ocean blue. It is a small laundry room y’all. There is no way we could both fit in there at the same time. It holds the washer and dryer and it had a door.

Anyway, we took everything out and reorganized. We had like that one, you know, ventilated shelf from when the house was built. We took that out and replaced it with shelves that were more functional for what we needed in that space. Knowing that I was also going to be doing treatment in that space. In general, we just made the space feel more pleasant overall. And it sounds silly, but mentally, it helped so much. Instead of dreading standing there and an ugly space for treatment, you know, getting really negative about the fact that I had this incurable lymphoma, I had a fresh, clean space that felt intentional, you know. And sometimes when you’re dealing with something ongoing, just those little things like making your environment slightly better can actually make a really big difference. And for the next four years, that was pretty much my routine.

Now, at one point, we did try reducing my treatments from three times a week to two, and then we tried once, we kind of played around. This is sort of what the doctor does, right? But as I mentioned, I have really fair skin, and I burn very easily. I was that kid growing up that always had to wear the t-shirt at the pool because I would blister. It’s just terrible, right? So if I went too long between sessions, I’d have to lower my exposure time again, which meant losing some of the progress that I’d made, and the patches might come back.

Pausing NBUVB Light Treatment

And after a total of five years on Narrow Band UVB, one at the doctor’s office and four at home, I had a spot removed, and it’s a … they call it a dysplastic nevus, and I may not be pronouncing that correctly. It wasn’t anything major, like, ooh, we’ve pulled off a spot danger, danger, but it made us pause and reassess, because the stats are something like, people with a dysplastic nevus are 10 times more likely to develop melanoma, and here I am, multiple times a week going into this box and exposing myself to Narrow Band UVB light. Now, there’s nothing that’s a direct connection that says if you’re in the light box, you’re gonna get melanoma. But the challenge is, you know, I’ve been doing this a long time, there isn’t really good research on what happens if you keep doing this light treatment for a long time, and we needed to consider the risks of continued UV exposure, and the light box just wasn’t working at maintaining but not eliminating the patches that I had, and after a certain amount of time, especially on a treatment like I had, you know, it made sense to kind of step away and see how my skin would do without it.

Transitioning to New Treatment Provider

Now, this was the point that I’d mentioned before, where, you know, my doctor one day said, I think that the best thing for you may be to go see that specialist at Duke. Now that we were getting into a territory where the expertise and what would come next in treating me would be important.

Now it’s important to know really very seriously, that Narrow Band UVB light treatment was a really effective early treatment for me. It gave me years of relief, and transitioning to a home unit was one of the best decisions I ever made.

Your Medical Treatments Should Work For You

But the biggest lesson really is that medical treatment should work for you, not the other way around. And if there is something in your treatment routine that isn’t working, it’s worth discussing it with your doctor and seeing if there are other options, whether that’s getting a home unit like I did for narrow band UVB light treatment, or adjusting your schedule, or even if it seems unrelated, making your treatment space more comfortable, because those small adjustments can have a tremendous impact. And at the end of the day, I learned that managing a long-term condition it’s not just about the medical side, it’s also about making sure the lifestyle side is sustainable too.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story, question, or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going you.