Research Study for Anaplastic Large Cell Lymphoma: Zach Witt's Story

When John and Pam Witt got the news that their son Zach's lymphoma had relapsed, they felt helpless and scared. But doctors at The Children's Hospital of Philadelphia were optimistic about an experimental treatment that they believed could save the 5-year-old's life. Zach's lymphoma is characterized by changes in the ALK gene. These changes in the make the lymphoma cells grow out of control. An ALK-inhibiting drug called crizotinib was developed to target the gene directly, which turns off that driving signal.


Research Study for Anaplastic Large Cell Lymphoma: Zach Witt's Story

John Witt, Father: In October, early October, perhaps late September of 2010, we noticed some lumps one day which very quickly were growing and led us to our pediatrician where, after some testing, diagnosed him with anaplastic large cell lymphoma. And so he started on a conventional chemotherapy and was responding quite well to that. And he was treated until March of last year, 2011, and seemed to be­­ everything seemed to be going great. And then sometime late in March we were seeing things which brought us back again to CHOP where after a week or 10 days of hospital stay and some diagnoses it did confirm that it was a relapse of his lymphoma. Well it's a kind of an overwhelming and somewhat of a helpless feeling because while he's on treatment it came back and so now what, you know.

Richard Aplenc, MD: So I met Zack probably a little over a year ago when he came here with lymphoma that was not responding to standard treatments. We had a trial and still have a trial open here of a new medication that we thought might be effective for him given the kind of genetic changes that have occurred in his lymphoma.

John Witt, Father: When the doctors gave us the option of participating in the study, of course, we had a meeting, and at that point we were considering some more severe standard chemotherapy or this. And we had some apprehension because of being an unknown, but we had a meeting with the doctors and I really sensed, as they were explaining the drug and what they hoped it would do, excitement and hope. And when we came out of that meeting, Pam asked one of them, "If this was your child, what would you do?" And he didn't even hesitate, he said, "I would go on the study."

Richard Aplenc, MD: And so he came here and enrolled on that trial and had a very remarkable response to therapy. Before his lymphoma was resistant to chemotherapy. So we would give him chemotherapy and it would have no impact on the lymphoma. And now on this medication his lymphoma is gone and it's been gone for over a year, which is remarkable.

Yaël P. Mossé, MD: Seven of the eight patients with lymphoma who went onto this trial having had a lot of prior treatment, including more than a year of intensive chemotherapy, and oftentimes when the disease comes back these children also had what we call transplant, which is lethal doses of chemotherapy. Of the eight patients with lymphoma who went on, seven of the eight have had substantial benefit from this drug and their symptoms cleared within days or a couple of weeks of starting this pill.

John Witt, Father: We were very amazed at how quickly he responded to this medication. Really, in two days he was very obviously responding in a dramatic, positive way.

Richard Aplenc, MD: He's been able to go back to school and run around and just be a kid and so that's been really very wonderful to be able to watch and to play a small role in.

Pam Witt, Mother: The second day that he was on the drugs we decided to take a walk down to the playroom, and he literally went out of his room and ran down the hallway. I mean, you couldn't believe it was the same kid that was laying in bed all day. So, it was just a miracle. The drug saved his life.

John Witt, Father: We haven't seen any side effects and I tell people who haven't met him, I tell them I have a son that has lymphoma. I said, "If you saw him here you wouldn't believe me that he has lymphoma," because he runs on high octane all day long and he's doing very well.

Related Centers and Programs: Cancer Center