When you treat a cancer that can’t be cured, you don’t just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.

High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 – The Fine, But Not Fine Podcast

When you treat a cancer that can't be cured, you don't just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.

1. High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 13:25
2. 150 Appointments: What Rare Disease Treatment Actually Costs – Ep. 32 10:01
3. Two Days in the Halls of Power – Ep. 31 20:41
4. Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30 08:06
5. Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29 09:26

Podcast Transcript

[00:00:00] 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.

Let’s talk about side effects because when you’re treating something that can’t be cured, side effects are just part of the process, right? Your cholesterol creeps up, you manage it. Something else drifts maybe a little out of range, and you watch it. That’s the deal. You don’t panic. You manage. Your doctor manages this.

But every so [00:01:00] often, you get a side effect that isn’t something you manage. It’s actually something that stops the show. And this is an episode about, the side effect of my treatment when it got serious enough that we couldn’t just watch it anymore. We actually had to stop the medication I was on, and then I had to go find out why.

So let’s get into that. So a quick refresher for anyone new. I am managing mycosis fungoides. It is a type of cutaneous lymphoma, and it’s a rare and incurable cancer that often presents on the skin. So generally, it’s not something that goes away. It’s something you live alongside with and treat for pretty much ever.

And one of the treatments I’ve been on is a medication called Pegasys Interferon. It’s an injectable. And this is where the liver comes in. Every four weeks, they monitor my blood for certain impacts, right? So, there are two numbers that really [00:02:00] impacted me for the liver, and that’s ALT and AST. Those are liver enzymes.

I believe it’s alanine transaminase. I’m sure I’m not saying that correctly. And aspartate aminotransferase, okay? Think of them as really kind of gauges that really say how hard your liver is working, essentially how stressed it is. And mine went up and not kind of at the point where you go, “All right, we’ll keep an eye on it,” we certainly went through that, but they went high enough that keeping an eye on it wasn’t really an option anymore.

Because here’s the thing that nobody really tells you when you get into this. Elevated but manageable is one situation. You can live in that range. It’s watched for a long time. But numbers high enough sustained long enough can cause permanent liver damage or be a sign of a reaction to medication that’s greater, you know, a bigger deal, okay?

So they took me off Pegasus, not tapered, not let’s just see, it’s [00:03:00] off, and then let’s see how your blood work is after that. And that’s because the risk of staying on was bigger than the benefit at that point. And that really left that question hanging in the air. Was my liver just reacting to a powerful drug, in which case take the drug away and it should settle?

Or was there something underneath, something the drug maybe created or revealed that I would be carrying no matter what? You know, is it a hepatitis? Is it something autoimmune? Is it a specific liver disease with its own name that I don’t know about? So essentially the same numbers on the page, but completely different futures.

And there’s no, you know, feeling your way to that answer. You can’t intuit it, or at least you shouldn’t. You really do need to find out, which is how I ended up seeing a liver specialist So now here’s something I didn’t know until I experienced it. You don’t just get a referral, right? You, you kinda have to earn it.

Before they’d even send me to see the liver specialist, I had to [00:04:00] clear, I don’t know, a gauntlet of blood work. They had to rule out hepatitis. They had to rule out HIV. They had to rule out a whole list of things, essentially one by one, and that was kind of a big, a big round. So I went to the lab, and there were nine vials, not the little tiny ones that they mostly use nowadays, but the full-size, old-school vials, nine of them lined up on the counter like a science fair.

And they actually had, a phlebotomist and the supervisor, doing all of this ’cause it’s not very common, I guess, to do that full series of everything. And you know, it’s kinda one thing that’s worth naming for people. You know, the system makes you prove it’s worth seeing the specialist before it lets you see one, and I get it.

You rule out the cheap to test things first. You earn your way up the ladder, and that’s fine, you know, if you’ve got the time and the transportation, the flexibility to show up for blood draws. And, you know, that wasn’t a, a heavy lift, but sometimes it can be a heavy lift for [00:05:00] people. But that’s the reality.

There aren’t as many liver specialists at Duke where I go. Most all of them are specialized in transplants, which I was hoping wasn’t something I would need a specialist for and didn’t, you know. But it is just the reality of getting a referral into a specialist. And one thing that I thought was kind of weird is when they were doing the blood draw, I had to do additional paperwork specifically for the HIV draw, and that was basically that I really wanted to do that blood test and have it billed to my insurance company.

And when I asked about it, I was like, “Why are you asking me for this HIV test that I’m okay with having it done through my employer-sponsored plan as opposed to wanting to pay for it myself?” And I guess, at least from what they told me and had, I’m not entirely certain how accurate that is, we kinda have to take it from a little bit of experience, was that even though HIPAA requires that to be private information, there is really [00:06:00] such a fear that it will be disclosed in a workplace and someone will be discriminated against that people actually choose to pay for that test themselves instead of having it go through their employer-sponsored plan.

Now, I, I was obviously shocked at that, but I did have mine go through my employer-sponsored plan. That’s not something I was concerned about, and it was really appalling to me that people still today, how many decades in with AIDS, still, still feel that way because there’s something that’s backing up that feeling.

Well, after that obviously came the waiting. You don’t, um, get a referral to a specialist for the most part, at least in my situation, and go in immediately. It was going to be something like, you know, several months for me to get in to see them. And I got in earlier because I made a decision. I told them essentially, “If you get a cancellation, any cancellation, just call me.

I’ll be there.” And I think that’s important to mention because call me last minute and I’ll drop everything is a privilege. A teacher, for [00:07:00] example, can’t drop everything. They’re in front of a classroom. They probably have to pay for their own substitute. An hourly worker can’t, you know, think last minute means lost wages, potentially a write-up or both.

A single parent, maybe a server, a home health aide, for them, the cancellation list is a door that’s technically open and really practically closed. And I got in faster because my life had slack in it, and a lot of people’s lives don’t. And the entire time I was waiting to get in, my treatment plan was essentially frozen ’cause you can’t make decisions about a systemic drug when the open question is whether your liver is okay.

So we leaned back onto the light box three times a week back in the doctor’s office, not at home, because that’s a better, light box for treatment. And that’s kind of the part nobody really warns you about when you get diagnosed with a chronic illness. It’s never one appointment. It is the web of [00:08:00]appointments because one unanswered question can freeze everything else in place.

So the appointment finally comes, and it was a cancellation that I went in for that was pretty much fairly immediate. And there were things that really stood out to me that were very different. We spent a lot of time having conversation going back through my re- medical record for years. Basically, what was this?

How was this drug? You know, when did you have COVID? When did you have all of these things, right? And so we went through all of that. We went through and talked about the, obviously the pre-visit blood work I had to have, and then there was a lot of at visit blood work that needed to be done to essentially rule out, , o- other rare diseases essentially.

And then the centerpiece was a test I’d never had before, never heard of it, but why would I? I’ve never been overly focused on how my liver is performing. And it’s an ultrasound. I believe it’s called a FibroScan, a liver elastography test. Essentially, they send a little pulse or a thump on [00:09:00] your side.

They put this kind of wand on your side, and they send this thump through your liver, and then they measure how that thump travels because soft, healthy liver tissue and stiff, scarred liver tissue carry that vibration differently. Doesn’t hurt, super quick, kind of fascinating really once you, you know, stop being nervous if you’re nervous about it.

Essentially a little knock on the door of your liver saying, “Hey, you doing okay in there?” And after the consult, you know, obviously I did that one more round of blood work, which was quite a bit, and because of the type of blood work it is, you know, that didn’t come as a covered by, a large amount. So that was about fifteen hundred dollars worth of blood work for me at that time.

And then, you know, it’s, you know, all of that waiting to rule out the last scary things kind of one by one. So here’s what it all added up to. My liver is okay I do not have hepatitis. I do not have HIV. I don’t have anything autoimmune, none [00:10:00] of the specific addition, conditions they were looking for. Mm, liver tissue not hardened in any way that worried them.

You know, the big question we were answering is, was this the drug or was it something underneath something else? And it was the drug, which means taking me off of the Pegasys interferon was exactly the right call. Remove that thing stressing the liver, and the liver gets to recover. So I walked out with something I did not have going in, real confirmation, not a guess, not a probably, a tested this is the baseline answer.

Now, there are a couple of footnotes, and I’m gonna be honest here. One, my liver tends to react when I’m on medications that stress it. Apparently, that’s how mine is wired, and that’s something to know going forward because it impacts treatment choices or treatments that are available to me. Secondly, this is a real one, if I lose weight, my liver will work better, and that’s not a maybe.

The data out there is clear on it, [00:11:00] and weirdly, that’s its own kind of good news because most of this I cannot control, right? I have an incurable lymphoma. I didn’t choose it. I didn’t choose how my liver reacts to a drug, but that one lever, that weight, that’s a lever I actually have my hand on, and I’m in a good enough spot to not worry that losing weight means my cancer is advancing, and that’s something that I’ve had in my head for many years of my life.

So overall, my liver’s good, and I got to hear it from someone who looked at a whole lot of blood work and a pulse through my own tissue and my medical records before they said it. So here’s where I want to land. We say we manage side effects, and we do, but manage is doing a whole lot of quiet work in that sentence ’cause managing assumes access: access to the watching, the repeat blood work, the specialists a lot of people don’t get referred to, the months of waiting, and the [00:12:00] cancellation slot you can actually take.

When my numbers crossed the line, the system had a path for me. Pull the drug, earn the referral, run the tests, get the answer, and I could walk that path because I had the slack or the space to walk it. My dermatologist this whole time still bending over backwards to make the logistics work on her end, and I don’t forget that.

But it was a relief to walk out of that liver appointment, with a pretty good feeling, and then it was a relief to get the information after the final assessment was made, and I want that to be available to everyone, not just the people whose lives have room in them to do all of the appointments and take the time and go, on the last-minute call-in.

And because my liver is okay shouldn’t come down to whether you can drop everything, right? My liver’s fine. I’m fine. But not everyone gets to find that out, and that’s the part that’s not fine.

[00:13:00] 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.