Double-hit lymphoma survivor: ‘If I hadn’t gone to MD Anderson, I wouldn’t be here’
By the time I was diagnosed with stage IV double-hit B-cell lymphoma in early 2019, I was in really bad shape. Scans showed that the cancer was everywhere, and the lesions inside my skull were putting so much pressure on my brain that they were giving me double vision.
The first thing my doctors did was correct another hospital’s misdiagnosis. Then, they hit the cancer hard and fast with intense chemotherapy. As a result, I’ve been cancer-free now for four years and counting.
My double-hit lymphoma symptoms
My lymphoma symptoms started appearing in December 2018. First, I developed severe pain in my right hip. Then, I noticed a swollen lymph node on the right side of my groin and another one on the left. It wasn’t long after that when I started experiencing double vision.
My local doctor thought the swollen lymph node was just a cyst. But he ordered an MRI to be sure before we scheduled surgery to remove it. That’s when we discovered I had cancer. My initial diagnosis was regular B-cell lymphoma, a type of non-Hodgkin lymphoma. I didn’t find out it was actually double-hit lymphoma until I got to MD Anderson.
How I got to MD Anderson
I’m originally from northern Virginia. I moved to Houston in 2016. So, I’d never heard of MD Anderson before my cancer diagnosis.
But my mom is a registered nurse, and my mother-in-law’s brother is a doctor. So, when they heard I had cancer, both of them said, “Get to MD Anderson. NOW.”
They told me that for something this complex, you have to go to the best. And MD Anderson is ranked No. 1 in the nation for cancer treatment. It’s also practically in my backyard, so I had no excuse not to go.
My double-hit lymphoma diagnosis
Once I arrived at MD Anderson, I knew I was in the right place. Everyone there made such a positive impression on me. The level of concern I received just while making an appointment was light years ahead of everyone else. And the knowledge and speed with which my care team worked was so far above what I’d experienced elsewhere, it blew my mind.
At MD Anderson, the first thing lymphoma specialist Dr. Jason Westin did was order his own tests and scans. That’s how we discovered I had a different kind of lymphoma than I’d originally been told.
Dr. Westin explained that “double-hit” meant two different genes had switched places in my DNA. But it’s a much more aggressive type of lymphoma than regular B-cell. It grows very fast and is harder to kill. So, if I’d gotten the original treatment I’d been prescribed, I wouldn’t be here today. I’m really glad I went to MD Anderson.
My double-hit lymphoma treatment
The cancer was so advanced by the time I had my initial office visit with Dr. Westin that he scheduled my first round of chemotherapy for the very next day. He told me I needed a strong regimen called R-EPOCH. I also needed another type of chemotherapy to kill the cancer on my skull. R-EPOCH wouldn’t be able to reach it through the blood-brain barrier.
Each chemotherapy treatment would require me to be admitted to the hospital. So, I spent 50 days over the next four months at MD Anderson.
The treatment was brutal. I dropped 20 pounds due to nausea alone. I also had some serious low points emotionally, when I was feeling so discouraged that I didn’t know if I could go on. But I got a lot of support from my wife and the online lymphoma community. They told me not to give up because I was almost there.
Fortunately, I listened to them and kept going. And the treatment worked. The cancer went into remission, and it’s been gone since June 2019.
My life today, four years into remission
I only come back to MD Anderson now for my annual check-up. When I think back to those early days of 2019 and remember how sick I was, I’m truly amazed at how far I’ve come. Back then, the cancer was everywhere. My scans were black with it, over my entire body.
And then, just two months later, it was all gone, thanks to MD Anderson and some very strong chemotherapy. Even Dr. Westin was like, “That’s kind of insane.”
The promises I made to myself during double-hit lymphoma treatment
I promised myself two things while lying in my hospital bed that first day at MD Anderson:
Once I got done with chemo, I was not going to look like a guy who’d just got done with chemo.
If I survived, I would find more ways to give back.
I fulfilled my first promise by walking two miles every day during my treatments — even when I was hooked up to an IV with three different bags of chemo flowing into me. I also had a whole workout regimen that I did every single day. So, when I got done, I’d met my goal: my body did not look like it had just gone through 20 rounds of chemo.
I’m fulfilling my second promise now by supporting various veteran causes. I’m a veteran, and this year, my U.S. Naval Academy classmates and I are bicycling across the country to our 40th reunion to raise money for one of these charities. One leg of that journey is a 600-mile ride between Toledo and Annapolis.
Doing this is pretty far out of my comfort zone. But for me to be here and riding 80 miles a day at all is incredible, considering where I was four years ago. So, I am grateful. None of this would be possible if it weren’t for MD Anderson.