What Is Mycosis Fungoides? – Ep. 2
Mycosis Fungoides—it sounds rare because it is. In this episode, I break down what this disease actually is, how it affects the body, and what it’s like to live with a cancer most people have never heard of. I’ll share my diagnosis journey, the symptoms that led me here, and the challenges of navigating treatment options for a condition that doesn’t have a one-size-fits-all approach. Whether you’re newly diagnosed, know someone with it, or just want to understand more about rare diseases, this episode is your crash course in Mycosis Fungoides.
- Resources
What is Mycosis Fungoides? – Ep. 2 – The Fine, But Not Fine Podcast
Transcript – Episode 2
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 Fungoide 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.
Hey everyone, and welcome back to Fine, But Not Fine. If you listened to episode one, you already know a little bit about my story, how I was diagnosed with a rare disease, ignored my first call from my doctor, and ended up scribbling notes on sticky notes while trying to process it all. But today, I want to take a step back and talk about the disease itself, Mycosis Fungoides.
What is Mycosis Fungoides?
One of the biggest challenges of having a rare disease is explaining it to people and sometimes even doctors. The name alone usually throws medical professionals back to their med school days. Mycosis Fungoides sounds like some kind of fungal infection, but spoiler alert, it has nothing to do with fungus, because it’s actually a form of Cutaneous T-Cell L, and we abbreviate that as CTCL, which means it’s a type of blood cancer, but it primarily affects the skin. And because it’s rare, even many healthcare providers just don’t fully understand it, which can make getting the right care even more complicated.
A Quick Disclaimer
Now, before we dive in, I need to say this. I am not a doctor. My primary career is marketing. I’m just someone who’s been living with this for years, more than a decade, and I’m sharing my personal experience now. If you have questions about the patient experience, I’ve got you. If you have medical questions, go see your doctor or your specialist. That is their job. It is not mine.
Understanding Cutaneous T-Cell Lymphoma (CTCL) and its Rarity
All right, let’s get into it. Now, in this episode, I’ll break down what Mycosis Fungoides is and where it fits in the world of cutaneous lymphomas. How many people have it, and why it’s often misdiagnosed, what staging means for this disease, and where I fall, how it affects me personally, on my skin, the treatments I’ve tried, what’s worked and what hasn’t, and some resources if you or someone you love has this diagnosis.
The Basics of Mycosis Fungoides
So let’s start with the basics. Mycosis, Fungoides is a form of Cutaneous T-Cell Lymphoma, that CTCL abbreviation I mentioned, and that is a type of Non-Hodgkin’s Lymphoma that affects T cells. It’s a part of our immune system. But instead of showing up, say, like you might think, you have swollen lymph nodes as a starting point, like many other blood cancers, this one primarily affects the skin.
Now, CTCL as a whole is extremely rare. Only about 3,000 to 4000 people in the US are diagnosed each year, and Mycosis Fungoides is the most common type of CTCL, but most common still means it’s incredibly rare compared to other cancers, and it often starts with patches or plaques on the skin. Dry, itchy, discolored areas that really look like eczema, psoriasis or just weird skin spots that won’t go away.And that’s why so many people go years before getting the right diagnosis. And for some people this, the disease stays in the skin indefinitely. But the reality is, it can progress.
Mycosis Fungoides Staging and Progression
Now, like many cancers, Mycosis Fungoides is staged, and staging helps determine how widespread the disease is and what treatment options make sense. But staging in mycosis fungoides is a bit different than in other cancers. It’s more about how much of your skin is affected and whether it’s moved beyond your skin, so there are numbers and letters.
So for example, in Stage 1, you have stage 1A and stage 1B, 1A is raised red patches, and these patches are called patches/plaques, and they in this stage one a. A, they would affect less than 10% of the skin on your body. In 1B the plaques would affect more than 10% and then you get into stage two, which is kind of like stage one, but maybe you have enlarged lymph nodes, or maybe in 2B You’re getting small tumors on the skin, but lymph nodes aren’t effective. And then you get into 3, which is more widespread and at least a tumor. And your lymph nodes may be swollen, but they don’t have cancer in them yet, 4, where cancer has spread to the lymph nodes or blood or other organs, think like the liver or lungs.
My Personal Experience with Mycosis Fungoides
Now, for me, right now, I’m stage 1A, and that means that less than 10% of the skin on my body is affected, and it hasn’t spread to lymph nodes or organs. And that’s a really good place to be, because I don’t want that to happen. And early stage disease is really they call it indolent. It’s very slow moving, and the treatment options are much, much less aggressive. But as I’ll get into, that later treatment is still a journey, and it’s really not always straightforward for me.
Mycosis, fungoides first showed up on my skin, these little, tiny patches that wouldn’t go away, and they were dry and really, really, really itchy, and they would kind of grow, and if I try and put a cream on it, it might sting or something wasn’t right. It was never quite right. It didn’t react like a typical rash would that I could get rid of. And I had them for a while before I finally got a biopsy that actually confirmed what it was.
And I have gone through phases where I’ve had, we call them flares, right? And they get really crazy and really big, and then, you know, everything is fine. And then, depending on how treatment is going, you know, one thing happens or another thing happens. And now I’m at a spot where I have some patches that are very much like they were when I was first diagnosed, in some especially the one on my lower leg, it’s pretty much my calf down to my toes that sometimes, and I know this is not for real, but sometimes it’s like is there would voluntary amputation work to get rid of the itching and the pain, because it can be actually painful to touch. And I know that’s, you know, kind of an exaggeration, but when you’re at the end of your rope and you’re scratching your skin so much from itching that it’s bleeding and it’s scabbing and it’s weeping, and you don’t want it to get infected, and it makes me cry sometimes, because that’s how bad it can be and how bad this particular area is on my leg.
Now, since there’s no cure, treatment is about managing symptoms and slowing progression. And let me tell you, I’ve been through a few different treatments with mixed results. Really, my first big treatment, though, it was narrow band UVB, light therapy, or photo therapy, NBUVB. And it’s the best way I can think of to describe it is it’s like a medical tanning, you know, I stand in a light booth and I get controlled UV exposure. And I’ve done it both in the clinic and at home, because I do have a home machine, and while it helped with my skin lesions, and it did for a very long time, there is some concern with doing this kind of light treatment perpetually, because there hasn’t been research done on the other impacts, and I have actually had a pre cancerous skin lesion removed, and that’s always sort of this concern, how much light is too light? Okay, too much light.
I’ve also done topical treatments. These include topical steroids to control the inflammation and topical chemotherapy. I think the technical name is a Meclorethamine. We also call it nitrogen mustard, yeah, like World War One kind of stuff, and it slows down the skin cell changes. And they helped, but they they just weren’t enough on their own. And I still do use a topical steroid today when I have a patch, a new patch or something that comes up, and try to use that.
I have also done methotextrate, it’s a kind of an oral chemotherapy. My liver wasn’t a fan, so that was very short lived. I had another oral medication, probably in the winter of 2022, and it really just gave me crippling headaches. So that one got scrapped, and I’m currently using targretin, which is also an oral chemotherapy. It’s technically a retinoid, which is a vitamin, a derivative that’s used for ctcl, and like in the beginning, it was like magic. It’s like everything kind of went away, and it was really awesome, but the results have diminished, and I.
I’m going to have to move on to another treatment, and some of these treatments like this targretin, and right now I actually have to get through a specialty pharmacy. And let me tell you, they are very, very expensive. We’re talking thousands of dollars a month, is what I see on the bill that gets sent to insurance. I have to pay hundreds of dollars based on my insurance.
And what I’m waiting for right now is my next treatment, which would be interferon therapy. It’s right now in the drawn-out pre authorization, denial, denial, and now external review phase, but when we get through all of this, this would be a weekly injectable that should provide me some relief.
Resources for Further Information
Okay, now it’s important to know that if you or someone you love has this disease, you are not alone. There’s some great resources out there, including the cutaneous lymphoma foundation. Their URL is cutaneouslymphoma.org There is the lymphoma Research Foundation, which is lymphoma.org and the National Organization for Rare Disorders. I believe it’s rarediseases.org.
Now that’s my super quick rundown on Mycosis Fungoides, what it is and how it affects me and what treatments I’ve been through. In my next episode, I’m going to tackle workplace disclosure and weighing what to tell your employer about your condition.
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.
3 Replies to “What Is Mycosis Fungoides? – Ep. 2”