Stephenie’s Classical Hodgkin Lymphoma Story

At 26, Stephenie was nearing the end of her master’s studies at the University of Georgia when she developed some unusual symptoms like bumps on her neck. She thought nothing of it, but her sister pushed her to get examined which led Stephenie to make an appointment at her university’s health center. Her doctor was thorough in his exams and tests, which led to Stephenie receiving a Hodgkin’s lymphoma diagnosis as a young adult.

Her life rapidly changed as she found herself making appointments to begin cancer treatments while at the same time taking finals and writing her final term paper to finish her master’s program. Less than a week after graduating, she began chemo and would go on to try two other chemotherapy regimens as well as two stem cell transplants. 

Today, Stephenie celebrates 5 years of being in remission and shares her cancer story with us, including the importance of doctors providing individualized cancer treatments and care, dating while receiving cancer treatment, experiencing graft-versus-host disease, being a patient advocate, pushing on when cancer treatments fail, and her advice to others on their own cancer journeys.

• Name: Stephenie P. 
• Diagnosis (DX):
  • Hodgkin Lymphoma
• Symptoms
  • Bumps along the neck
  • Night sweats
  • 25-pound weight loss
• Age at DX: 26
• Treatment:
  • Chemotherapy
    • ABVD
    • ICE
    • Brentuximab
  • Radiation
  • Stem cell transplants
    • Autologous
    • Allogeneic

If I can help one person get through their journey, then sharing my story is the least that I could do.

Stephenie P.

Symptoms & Diagnosis 

Tell us about yourself

My name is Stephanie. I am a Hodgkin lymphoma survivor for 5 years now. I’m still getting back into a lot of my hobbies. I had to do a lot of after-cancer rehab. I have 2 beagles, spend a lot of time at home, cook a lot, and do a lot of baking.

When did your symptoms first occur?

It was back in 2015. I think it was around the beginning of the year, I started noticing I got these bumps on my neck. As the months passed by, they weren’t going away. I think I waited 3 or 4 months before I actually went to the doctor to check out the lumps in my neck. 

I was at the University of Georgia at the time getting my master’s degree. I went to the university health center that they assigned to every student. I went to him and said, “I have these lumps on my neck and they’re not going away. I haven’t been sick or anything, so I don’t know what’s going on.” He asked me all these other questions like, “What other symptoms are you having?” I said, “Well, I don’t think I’m having any other symptoms really.” Then he started asking me questions like, “Have you been having night sweats?” I said, “Well, yeah, I have been getting really hot in the middle of the night.” He asked, “Are you sweating so much that you’re soaking through your clothes?” I said, “Yeah, actually. It’s never been that much before.” Then he asked me if I was feeling more tired than usual. I said, “I don’t know. It’s finals and I just ran a half marathon.”

I didn’t really take those things into account that those could be symptoms that all added up to something else. I don’t even know if I would have gone to the primary care doctor at all if my sister hadn’t pushed me to do it because I went to go visit her during that time and I said, “I have these lumps on my neck.” She was looking at them and she’s like, “You should get that checked out.” 

Examining the symptoms with tests

He wanted to do some other tests after that. I said, “Well, what could this be?” He listed off a lot of things that it could have been. I just remember the last thing he said was cancer. I was so surprised because he was just my university physician. I don’t know how many cases he gets like this or how often he sees something like this, but I’m really grateful that I was assigned to him because I feel like any other doctor would have been like, you’re young, it’s probably nothing. I was really grateful that he took it seriously. 

He listed off a lot of things that it could have been. I just remember the last thing he said was cancer.

He gave me the next steps and he was very quick about it. I feel like a lot of times you’re waiting around for the next step. But he was like, “Alright, today you’re going to go and get more x-rays. Tomorrow I’m going to schedule you for this.” So there was no in-between time working with him. If I can give a shout-out to Dr. Kevin Sanville at the University of Georgia, he literally saved my life. I’m so grateful.

Accelerating testing due to imminent insurance changes

It was a complicated time for me because I had just turned 26, so I only had that month left of being on my parent’s insurance. I think that’s part of why he wanted to speed it up so that I could get all that testing done and it’d be covered. 

We did x-rays, I had my first CT scan, and then I had a follow-up with him where he went over all the results from those things. He said, “There’s a good possibility that this is cancer.” We had to move on to getting biopsies. 

It’s good being in a university town. There’s a lot of doctors, a lot of medical practices there. He sent me over to do the biopsies, we got the results back, and then he set me up with an oncologist who was in town. Luckily it was a practice that’s all over the state. They knew that I was graduating so I wouldn’t be there for my entire treatment, so they made sure to set me up with somebody I could still transfer easily with wherever I went.

Getting tested before beginning cancer treatment

I had 3 biopsies so that they could be certain. They took one out from my neck, from my underarm, and then I did the bone marrow biopsy and it moved really fast after that. To get me ready for chemo, they had to get all these other tests done to make sure that my body could handle the chemo. I had to do a pulmonary function test to make sure my lungs were good. I went to a cardiologist to get an echocardiogram to make sure my heart was good. There were a bunch of doctors I had to go to before. 

I had to go see my dentist too. That really freaked me out because they said chemo can mess with your gums and your teeth. My teeth were expensive. If you ask my mom, she’ll say she paid $6,000 for my braces. I remember making an emergency appointment with my dentist. That was a crazy experience, going to your dentist and saying I need you to check me out because I’m about to go through chemo. 

My dentist was on top of it. Unfortunately, his sister was diagnosed with breast cancer so he knew when things happen, they have to happen fast. My dentist had the office on vacation that week and he was like, “Everybody’s out of the office.” I was freaking out, so he opened the office just for me and he did everything himself. I left with a huge bouquet of flowers, too. It was very nice.

Describe being told you have cancer

The way I found out I wish was different because it was actually from my surgeon who did the biopsies. He called me a few days afterward and said, “Yeah, we got the pathology and it looks like it’s Hodgkin lymphoma. You probably want to follow up with your oncologist.” 

I was sitting in bed recovering from the biopsy, so I was just on the phone with him. I didn’t really know what to do. I was at my apartment by myself at the time. My roommate wasn’t home so the first thing I did was I called my sister. She was living in New York at the time and she was working at a corporate job so she knows that when I call, she needs to answer. She said that she was in a meeting, but she ran out into another conference room to take my call. 

» MORE: Reacting to a Cancer Diagnosis

I didn’t know what to do because I didn’t get the news from my oncologist, so I just waited for my roommate to get home. We made a plan because I was like, I know a lot of people are going to want to know what’s going on, but it’s going to be really frustrating for me to keep telling them over and over and getting all the people’s reactions. She was like, “I’ll help disseminate the information so that you don’t have to deal with all that.” Then she took me out to dinner. 

I did go to the oncologist the next day so I didn’t have to wait that long before we figured out what the next steps were. I just really wish that the surgeon had done the correct procedure and waited so that I could get the news in my oncologist’s office.

Chemotherapy

Where did you receive medical care?

I started out at the office that they had there in Athens, then eventually I graduated and had to move out of my apartment. The easiest thing was for me to move back home with my parents. Luckily, there was an office that was 15, 20 minutes from my parent’s house so I transferred over to them.

Describe your first oncologist visit

There’s no such thing as “good cancer.”

That was a blur. I had two of my college friends come with me because I was away at school, so my parents didn’t come. They came with me to absorb all the information that I could not absorb. They said, “We want to start treatment as soon as possible.” They gave me the whole “Hodgkin lymphoma is a blood cancer, so we’re really good at curing those. You’ll do 6 months of chemo and you’ll be good.” I got that line, “You got the good” cancer. That’s all I remember.

There’s no such thing as “good cancer.” There are so many different types of cancer and everybody’s journey is different. No matter what, even if you don’t have to do chemo or you don’t have to do radiation, some people have to get surgery. It’s different for everybody and it’s hard on people in different ways. There is nothing good about getting a cancer diagnosis, so I can’t believe that doctors still say that to people. I guess it’s their way of trying to make you feel like everything is going to be okay but there’s a different way that you can do that.

Juggling finishing school and beginning treatment

After that, we had to schedule my port placement, and then they talked about my chemo schedule and doing 6 rounds of ABVD which would take 6 months. I feel like it was different for me because I was in my master’s program and I still had to graduate. I had to reschedule all my finals with my professors and it was my last semester. I had to do my final term paper. 

They actually wanted me to start chemo before graduation. I think graduation was May 8th. I remember that because it was my sister’s birthday and they wanted to start chemo the week before that. I was like, “Can I just graduate first and then start chemo?” Luckily, they said we can do that. I graduated Friday and I started chemo on Wednesday.

Did you have any side effects on chemo?

Starting treatments, I really did not know what to expect at all. I just went. It wasn’t as bad as I thought it was going to be. It was pretty easy. I arrived at the cancer center, then they knocked me out with diphenhydramine. I woke up and I was done for the first few months. The side effects, luckily for me, were very little. 

I did lose my hair after the first month of treatment. I was putting off shaving my head because my aunt is a hairstylist and I wanted to try cool things before I had to shave my hair off. We did cute short hairstyles and we did purple hair for Hodgkin. It was fun. 

» MORE: Hair Loss and Regrowth After Chemotherapy  

I didn’t get too nauseous with ABVD. I think the first time my nausea got really bad was my third treatment. I did get really tired. I tried to stay active. I had a very busy schedule all the time just because I was in graduate school. I was used to being on the go a lot so I still kept a pretty busy schedule. Then after a month or 2, I had to start pulling back because I was getting so tired all the time. I’m not a nap person at all, but I would sleep so much. I think those were the biggest side effects for me during chemo.

Changing chemo treatments

The first protocol that they did with me was a scan and they said that nothing had really improved, so we had to move on to the second round of treatment, which was a different chemotherapy regimen. We did a scan after that too, and it still showed no improvement.

The second chemotherapy treatment that they had me on was the ICE regimen. That stands for all the all the chemo drugs they give you. That was tougher because it was multiple days of chemotherapy instead of once every 2 weeks. It was more tiring because you’re getting more drugs.

Learning to live with uncertainty 

I was just rolling with the punches at that point. Before I got diagnosed, I was a really organized, scheduled person, and I realized really quickly that that wasn’t going to work for this. I had to learn how to live with ambiguity, uncertainty, and, whatever they threw at me. I took it and figured out a way forward. I was like, alright, let’s keep rolling. What’s the next step?

Stem Cell Transplant

Considering a stem cell transplant after unresponsive chemo

That’s when they started talking about possibly having to do a transplant. I got all this research about transplants. I was hooked up with The Leukemia & Lymphoma Society, so they gave me a lot of information and people to talk to about transplants. 

This was something I’d never heard of before. I’d heard people get live, solid organ donations, but I didn’t know anything about stem cell transplants or bone marrow transplants. It was a lot of talking to people and getting their experiences. 

I was on brentuximab during that time just so that they could keep everything at bay. Then they referred me to the transplant oncologist so it was more appointments and more education on what stem cell transplant would be and how to get me ready to get to that point.

Preparing for a stem cell transplant

The first transplant I got was an autologous stem cell transplant. That’s when they extract your own stem cells from you and put them back into you. I’m not a sciencey person, so I try to understand it as best as I can. I had to do these self-injection shots of filgrastim because that’s what makes your stem cells grow. I did that for 5 days. After that, you have your collection day where they take all of your stem cells out. It involves sitting in a chair all day and it’s like giving blood, but they put it through this machine that sorts out all the blood products and all the stem cells, and then it puts the blood back into your body. 

It’s a long process and I was there for a long time getting my stem cells collected. There’s a certain amount that they need to collect from you before they start the rest of the process. I was hoping that they had enough that I only had to do one collection day because I heard people had to do 2 or 3 days of collections. I only had to do one day of stem cell collection.

Describe your experience with getting a stem cell transplant

That was tough to get ready for the stem cell transplant. Not just the stem cell collection, but there are days of high-dose chemotherapy that you have to go through. It was different drugs that they gave me at that time. Those were long days in the chair at the hospital. I think there were 3 days of high-dose chemotherapy before my first transplant.