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Episode #24 - Surviving Hodgkin's Lymphoma

Sherry Hughes:

Hello, everyone. And welcome to our Medical Minute podcast. This is episode 24. I'm Sherry Hughes, and I'm in the driver's seat today. Steve Abbott has taken the day off and Jill is here with us, and we do have a guest. Josh Robinson, hello.


Josh Robinson:

Hey, happy to be here.


Sherry Hughes:

Glad you could be here with us as well. And again, Steve taking a little time off. You think he's out somewhere, enjoying-


Jill Hunt:

Yeah. I'm sure that he's somewhere drinking plenty of water. Plenty of water. But he is definitely missed.


Sherry Hughes:

Yeah, that's an inside joke we keep telling him, which Steve is also a cancer survivor.


Josh Robinson:

Gotcha.


Sherry Hughes:

We always tell him to drink up.


Jill Hunt:

He keeps trying to convince me that there is water in wine.


Sherry Hughes:

Yeah, yeah.


Josh Robinson:

Ah, okay.


Sherry Hughes:

And he might be somewhere, having a little vino. Yeah.


Jill Hunt:

I do not doubt it in the least.


Sherry Hughes:

Yeah. Well, today we are here to talk about a cancer of the blood. It is called Hodgkin's disease, aka Hodgkin's lymphoma. And you may be aware that there are two types of Hodgkin's, so to speak. One is Hodgkin's, and the other is non-Hodgkin's.


Jill Hunt:

Two types of lymphoma. We have either Hodgkin's lymphoma or non-Hodgkin's lymphoma. When you get into non-Hodgkin's lymphoma you have a lot more subcategories. What makes Hodgkin's lymphoma so unique is that there's a special cell that is associated specifically with the Hodgkin's lymphoma. It's called a Reed-Sternberg cell. Would you like to guess the name of the person that identified the cell for the first time?


Sherry Hughes:

Hodgkin's, right?


Jill Hunt:

No, it was Reed Sternberg.


Sherry Hughes:

Reed Sternberg.


Jill Hunt:

And the other thing that's a little bit different about Hodgkin's lymphoma versus non-Hodgkin's lymphoma, non-Hodgkin's lymphoma can be found anywhere in the body, versus Hodgkin's, when Hodgkin's lymphoma is diagnosed, it's usually above the belt. Usually in the chest area, it's either neck, chest, or underneath the arms. It doesn't mean that it can only be found there, but in most cases that's one of the characteristics that makes it a little bit more different than non-Hodgkin's.


Sherry Hughes:

And we invited Josh in today because, Josh, you were diagnosed with Hodgkin's. Can you tell us when that was? And if you even knew at the time, had you even heard of Hodgkin's disease?


Josh Robinson:

Yeah, I had no idea what it was. I got the diagnosis August 2020. And I had-


Jill Hunt:

In the middle of COVID.


Josh Robinson:

Yes, so it happened in the middle of COVID. Had no idea what Hodgkin's was. I had no idea that it was going to be cancer. Of course you Google your symptoms and I saw it as maybe the fifth option on there. I was like, "Well, that's how the internet is when you Google your symptoms." Of course, cancer's going to show up at some point. Thought its maybe a cyst and had a surgery and found out that it was indeed Hodgkin's lymphoma.


Sherry Hughes:

Wow. And so you said you actually had a cyst. We know that Hodgkin's affects the lymphatic system. But, Jill, you were talking to me earlier about, I said, what lymphatic system that's everywhere in the body, right?


Jill Hunt:

The lymphatic system runs the body, just like all of the veins and the arteries do. It's another highway system. And as you're going through that highway system you have little rest areas, and that would be your lymph nodes. And with any type of lymphoma, the problem happens when things get hung up and those cancer cells start growing in those lymph nodes.


Sherry Hughes:

And you know what? You talked about, Josh mentioned a cyst. Cancer cells start growing in the lymph node. Is that when you start to feel like one of the nodes being a little bit more inflamed or?


Jill Hunt:

It's funny, whenever we see patients, I don't ever use words like cyst or mass or anything. I just ask, "Do you feel any lumps or bumps?"


Josh Robinson:

Right.


Jill Hunt:

I'm guessing you had a lump or a bump?


Josh Robinson:

That's exactly what it was. Maybe six months before I got the diagnosis, I went and saw my doctor. I was like, "I feel like you got to check me. Is my testosterone low? Is something going on?" And did blood work, did everything. And it was all good.


Jill Hunt:

So were you noticing more fatigue?


Josh Robinson:

I was noticing a little bit of fatigue. And also around that same time, I had gotten exercise bands to work out at home because pandemic, we can't go to the gym anymore. And I was doing bicep curls and I kept on feeling a little bit of clicking going on in there. And I just put it off for, again, around six months and finally saw the doctor again. This time I told him about what I thought was a cyst going on. He was like, "Let's go ahead and get that removed. How does surgery next week sound?"


Sherry Hughes:

Wow.


Josh Robinson:

And at that point I should have realized, "Oh, well, there's probably something going on," but I thought, "Oh, it's COVID. Maybe they've got a lot of openings right now."


Sherry Hughes:

And you're a young guy.


Josh Robinson:

Right.


Sherry Hughes:

I mean, oftentimes people hear cancer. We know it can affect no matter what age you are, no matter what your ethnicity is, you can be diagnosed with cancer. But often time we think it's for older folks.


Josh Robinson:

Yeah, yeah.


Sherry Hughes:

And here you see Josh, a young guy, just getting started in his life. And he's saying that he's feeling some irregularities that end up becoming a diagnosis of cancer.


Jill Hunt:

And that actually, with Hodgkin's lymphoma, the age that it standardly hits is between 20 and 40. So it does tend to hit some of the younger population more frequently.


Josh Robinson:

Right. Especially the one that I got diagnosed with, that was lymphocyte-rich, originally was categorized I think as mixed cell. Second opinion proved to be lymphocyte-rich. And that was specifically impacted men around my age.


Sherry Hughes:

And you know what? We're talking that you're in that 20 to 35 age group, that is super young. What did you feel like, or how did you feel when you found out? Was it during the surgery or after the surgery that they let you know that there was a cancer?


Josh Robinson:

It was a couple days after the surgery. And I got a call, just thinking they're just letting me know everything was good. I can take out the glue. But yeah, they called said that I had cancer and my world kind of flipped on top of itself. Never would've thought that that would've been the case.

I just felt kind of alone, because you would hear things growing up like, "Oh, so and so had cancer," but I never thought it would happen to me, let alone at that age.


Sherry Hughes:

Yeah, exactly. And, Jill, you were talking about the fact that this particular cancer is one that is really very treatable.


Jill Hunt:

Right. Absolutely. I mean the five-year survival rate is 95%.


Josh Robinson:

Right.


Jill Hunt:

Most people do the first line of treatment, and it's done and they're cured. It doesn't change the fact that when you're in your twenties and thirties that you're still facing a cancer diagnosis and the treatment that goes along with it. Because I mean, Josh, you can speak to the fact that it wasn't a walk in the park.


Josh Robinson:

No. Yeah, it was definitely not a walk in the park. I thought it would be, after the first round of chemo. Not to jump too far ahead, I did three rounds of chemo, so six doses. And I remember after the first one thinking, "You know what? That wasn't too bad."


Sherry Hughes:

Yeah. No big deal.


Josh Robinson:

I actually went out and played street hockey, just skating around. Not with anyone else around because, one, no immune system and COVID going around. But went around, skated around. After the second dose though-


Sherry Hughes:

You knew.


Josh Robinson:

... that's when I realized I was in for it. And it was a tough ride after that, especially the last two doses.


Sherry Hughes:

Yeah. And we talk about, Josh mentioned his immune system. That is something that Hodgkin's affects very dramatically, because your immune system is taking a huge hit.


Jill Hunt:

Well, obviously you've got a little bit of disconnect because the lymph nodes and the lymphocytes are being affected. But to speak a little bit to what Josh was saying, the treatment that you get knocks your cells down even more.


Sherry Hughes:

More.


Jill Hunt:

So definitely. And in the midst of a pandemic, I can't imagine all of the extra precautions that were being taken.


Josh Robinson:

I was a bubble boy for the entire ... Well, my wife as well. We did not leave the house, unless it was to go on maybe a hike or something like that. And even when we went out and did that it was heavy precautions, double masking and hand sanitizer always. And other than that, seeing people through the front window.


Sherry Hughes:

Yeah. But as we say, life goes on and you handle it, because at the time you actually were planning a wedding at the time?


Josh Robinson:

Actually the story behind that is, we moved in together that summer to try and tiptoe our way like, "Hey, we think that this is the way it's going." We both wanted to get married, but we wanted to live together first.


I think we had lived together for maybe a month and a half, maybe two months. And I get my diagnosis and we start going to all the meetings. And every single time they looked at Allison, they were like, "Oh, well, who's this person in here with you?" It's like, "Oh, well, that's my girlfriend.": And we sat down and had a conversation like, "Hey, we want to get married. We want to do this. And okay, if we want do it eventually, let's go ahead and do it now and go into this as one unit."


Sherry Hughes:

Wow. So you didn't let the diagnosis of cancer, I guess, stop you from living.


Josh Robinson:

Right.


Sherry Hughes:

And it's something that we try to tell people all the time, that it's a circumstance. It's something that's going on and is serious, because it happened to me as well, but you don't want to stop living. You really want to live even more.


Josh Robinson:

Right. We went to the courthouse on a Friday, basically eloped, and started chemo on Monday. Great way to spend a honeymoon, but now we're I think almost a year and a half, almost two years out from it, and celebrating with a wedding this summer.


Sherry Hughes:

I love it, I love it.


Jill Hunt:

Very nice.


Sherry Hughes:

And we have a couple, just maybe a couple minutes left. I want to talk about, you mentioned chemotherapy. Was there radiation as well associated with your-


Josh Robinson:

Not directly, no. Of course there was some radiation that I got from the PET scan, but I just did three rounds of the ... I'm blanking on it now, I used to know the term so well.


Jill Hunt:

ABVD?


Josh Robinson:

AVBD.


Sherry Hughes:

Yeah, okay.


Josh Robinson:

Yes. ABVD with the red devil in there.


Jill Hunt:

Yes.


Sherry Hughes:

The red devil.


Jill Hunt:

And so for our viewers, we like to use all kinds of acronyms but we like to keep it simple. So AVBD, it's four letters and it's another cocktail, no umbrella included, but it's four drugs that are given as part of that treatment plan.


Josh Robinson:

Right. I'm going to try and remember it, azithromycin, vinblastine.


Jill Hunt:

Uh-huh (affirmative).


Sherry Hughes:

Those are tough too.


Josh Robinson:

I forget the rest of them.


Sherry Hughes:

Yeah. Overall, your diagnosis, we talked about the fact that a lot of people want to get out there and be advocates, like myself. But sometimes, you know what, you don't really want to talk about it that much, but you know it's important to help people.


Josh Robinson:

Yeah. If it weren't for the whole trying to maybe help someone around my age that's going through this, then I would not be here. Again, I feel like it's split after people finish up their treatments. It's, do you want to get involved, do you want to be an advocate like you were doing? And for me, I'd rather just live a life, just not-


Jill Hunt:

And leave it in the past.


Josh Robinson:

And leave it in the past, yeah. Not pretending that it didn't happen. Although there are some nice days where I kind of forget about it. But yeah, I just want to leave it in the past and move on from it all.


Sherry Hughes:

Well, you know what? We're so glad that you're here. We're so glad that you're doing well. There's so much more to cover, so we're going to do a part two. And when we come back next week we're going to be talking about how do you know if you might have Hodgkin's, or what are those symptoms and what should you be looking out for. And also, we'll dive a little bit more into Josh's life and where he is right now, and how you can survive this and other cancers as well.

Thank you for joining us this week. We want you to Like this podcast and share it as well so we can get more people in the conversation, and hopefully you're getting some good education from this. Josh, thank you for being here with us.


Josh Robinson:

Of course.


Sherry Hughes:

And don't go away because we're going to have that part two. And, Jill, you're going to be talking more about those symptoms, right?


Jill Hunt:

Absolutely.


Sherry Hughes:

All right. Thanks and have a good one.


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