Rare Disease Report

Treating and Diagnosing Rare Cancers in Young Adults

OCTOBER 31, 2018
Krista Rossi
Treating a rare cancer such as Hodgkin’s lymphoma is difficult at any age; however, when young adults are faced with a rare cancer diagnosis, the challenges are significant. With new clinical trials underway, such as those evaluating brentuximab vedotin (Adcetris), hope is not out of reach.

In an exclusive interview with Rare Disease Report® (RDR®), Robert Chen, MD, associate professor at City of Hope’s Department of Hematology & Hematopoietic Cell Transplantation in Los Angeles, California, and his patient, Jeremy Hernandez, spoke about the challenges of receiving a rare cancer diagnosis in young adults as well as the hope clinical trials bring.

RDR®: What are the traditional challenges of both giving a rare cancer diagnosis and treating a rare cancer?

Chen: Typically, a rare cancer is harder to treat because fewer people have it. Oftentimes advancements, in terms of treatment strategies, are slower. However, because the disease is rare, it’s harder to recognize what it is, and so it’s hard to make the correct diagnosis.

RDR®: What are the associated risk factors in comorbidities with rare cancer?

Chen: Rare cancer depends on a type. If we’re talking about Hodgkin’s lymphoma, cancer of our lymph nodes, we all have lymph nodes in our body, and they’re part of our immune system that’s used to fight infection. 
The typical symptom of Hodgkin’s lymphoma [is that] patients present with a painless lump in their neck or armpit area. If they have a more advanced-stage disease, they can present with fever, chills, night sweats, nausea, and fatigue.

RDR®: What are some important factors to consider when diagnosing and treating rare cancers like Hodgkin’s lymphoma in young adults or children? 

Chen: It all depends on the kind of disease. Hodgkin’s lymphoma can specifically affect people in younger age, around their 20s. There’s a peak in that age group.

When you’re thinking about treatment for Hodgkin’s lymphoma, because patients are young when they’re diagnosed, you have to worry about latent toxicity from the treatment. Not only do you want to cure the patient, [but] you [also] want to make sure they don’t have long-lasting side effects.

RDR®: Are there any other risks associated with different types of treatments with Hodgkin’s lymphoma?

Chen: At this time, it is not known what causes Hodgkin’s lymphoma; [however,] we do know that it’s not genetic.

[In terms of] side effects with treatments, traditionally with chemotherapy, there can be nausea and vomiting. Some people can get into lung toxicity as well, and that’s with a traditional multi-agent chemotherapy treatment.

RDR®: Jeremy, what do you think patients should keep in mind when they are diagnosed with Hodgkin’s Lymphoma?

Hernandez: I think the main thing is to be positive. You have to be thankful for each day.

[Also, you have to] ask questions about your treatment. See if there are new trials [you can participate in] and drugs [you can take] because luckily enough, I was able to enroll in a trial and take [brentuximab vedotin].

I had 12 rounds of [brentuximab vedotin] over a couple months. My main symptoms were nausea and fatigue. At the time I was diagnosed, there was a tumor compressing my spine, and so I lost control of my legs and I wasn’t able to walk. That was something I needed to learn—how to walk again.

RDR®: What do you both feel is important to consider in the doctor-patient relationship when diagnosing and treating rare cancers like Hodgkin’s lymphoma? 

Hernandez: [It is important to consider] communication, being aware of new treatments, and trying to take them when they’re given.

Chen: For me, as a doctor, I always want to give my patients the newest information available, [since there are always] new treatment strategies and new drugs being developed. For me, it’s my responsibility to tell them what is the most cutting-edge [news] and give them all that information so they can make important decisions.

In Jeremy’s case, we were lucky enough to have this new drug called brentuximab vedotin being evaluated in clinical trials. The reason why the drug is important is because it delivers the treatment specifically to the cancer cells only, and not to normal cells. This is important because it tries to increase the efficacy while limiting the toxicity.

RDR®: What are some exciting innovations that are on the horizon for Hodgkin’s lymphoma treatment and even other rare cancers?   

Chen: We’re always trying to come up with newer ways to treat patients. For Hodgkin’s lymphoma, specifically, there are different ways to use brentuximab vedotin—using combinations with it, trying to improve efficacy, and also moving it to the frontline patients as well.

With cancers in general, we have, brentuximab vedotin as an example of targeted therapy, meaning we can target the treatment specifically to cancer cells. There is definitely more, new drugs being developed and we are trying to model that to different kinds of lymphomas as well.

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