Stage IV Hodgkin lymphoma survivor: An immunotherapy clinical trial put me in remission

Cancer doesn’t run in my family, so when I noticed a small swelling on my collar bone in March 2020, I just shrugged it off. I travel a lot for work, and I carry a heavy tote with a computer around. I figured my left shoulder was just injured from the straps. I had no idea it was actually a symptom of Hodgkin lymphoma. I was only 32.

But the lump didn’t go away, even after several months. Then, the intense itching started. That’s when I finally went to see my family doctor. He ordered an X-ray, which indicated the lump was either cancer or a fatty mass. He ordered a CT scan to get a better look at it. When those results came back, he said it was probably cancer. And I told him, “Well, if that’s the case, then I’m going to the best place in the world for treatment.”

I grew up in Huntsville, which is only about an hour north of Houston. MD Anderson is practically in my back yard. I’ve heard about its reputation for years. So, why would I go anywhere else?

Why I joined an immunotherapy clinical trial

At MD Anderson, I met with Dr. Sairah Ahmed, a lymphoma and myeloma specialist. First, she confirmed my Hodgkin lymphoma diagnosis. Then, she recommended a clinical trial that could only be found at a few places, including MD Anderson. It involved a new combination of chemotherapy and immunotherapy drugs that she thought would put me in remission.

Dr. Ahmed told me a more conventional, standard treatment plan was also an option. But when I asked her what I should do, she said, “Well, the reason you come to a hospital like this is because we have access to drugs, treatment plans and clinical trials that no one else does, isn’t it? They’re all right here, at your fingertips. But the choice is yours.”

When Dr. Ahmed put it like that, the answer seemed obvious. If she thought the new combination of drugs would offer me the best chance of a cure, then that’s what I wanted to do. She was the expert. I joined the clinical trial.

My Hodgkin lymphoma treatment

Today, I am so glad I did. Because the standard treatment for Hodgkin lymphoma is a combination of chemotherapy drugs called “AVBD,” which stands for doxorubicin (Adriamyacin), bleomycin, vinblastine and dacarbazine. In the clinical trial I joined, the bleomycin was taken out and replaced with one of two immunotherapy drugs: either brentuximab or nivolumab. I was randomly assigned to the brentuximab arm of the trial. I received my first IV infusion of it on Aug. 17, 2020.

I could tell pretty quickly that my body was responding well. The grapefruit-sized tumor in my chest had grown so large by the time I was diagnosed that it touched all the major internal organs there. It had also spread to my spine. But after only two rounds of treatment, it started shrinking rapidly. Sometimes, the lump on my collar bone seemed to be getting smaller overnight. By the end of October, my scans were almost completely clear. And by the time I rang the bell to mark the end of my treatments in February 2021, they showed no evidence of disease at all.

My secret to dealing with Hodgkin lymphoma treatment side effects: communication

Over the six months I was receiving cancer treatment, I developed almost every side effect you can imagine, including nausea, fatigue, mouth sores, loss of appetite, body rashes, joint pain and hair loss. But as long as I communicated with my doctor about them, there was usually something she could give me or recommend to help.

Looking back now, I think Dr. Ahmed was pretty amazing. Because I would message her at all different hours of the day. And no matter how early or late it was, she would respond almost immediately. She went to really extreme lengths to make sure that I felt heard and comforted, and that made my experience at MD Anderson exceptional.

Finding my new normal after overcoming stage IV Hodgkin lymphoma

Today, I’m still trying to find my new normal. Because before my cancer diagnosis, I worked a lot. But when I started treatment, I had to go on sick leave. So, I went from working practically all the time to not working at all. That was a pretty big transition. Now that I’m back on the job, I’m still learning my limits. How many days can I go without crashing? How many hours of sleep do I need?

And I do still sleep a lot. I get colds really easily, too. But I still feel really lucky and blessed. Because I am here — even after a stage IV cancer diagnosis. And I’m still in remission, nine months after finishing treatment. MD Anderson’s Adolescent and Young Adult program helped me coordinate the freezing of my eggs before beginning treatment, too. So, I’ll still have that option available to me, when it comes time to start a family.

I’m also pretty excited about my involvement in this clinical trial. Because I was able to have this amazing treatment option first. And now, because of me and other clinical trial participants, more cancer patients may be able to have it someday, too.

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