Lymphoma survivor: Why I recommend hepatitis C testing
I’ve never taken illegal drugs, and the only time I ever had a needle in my arm was when a doctor was on the other side of it. So my best guess is that I contracted hepatitis C from a blood transfusion I received after a car accident when I was 19.
Back in 1985, donated blood wasn’t tested for hepatitis C, as it hadn’t really been identified yet. Then, it was just known as “non-A/B hepatitis.” And for years, the only real treatment was a combination of interferon and ribavirin, which wasn’t very effective and caused unpleasant side effects.
So, when I found out I had hepatitis C in 2009 (from a blood test performed for a life insurance application), I figured I only had about 10 good years left. My son was 2 then, and I realized while changing his diaper one day that I probably wouldn’t live to see him graduate. I thought about getting my affairs in order.
Then, one day I overheard a doctor say that most people who have hepatitis C will die with the disease, but not from the disease. It took being diagnosed with non-Hodgkin lymphoma in December 2015 to learn that MD Anderson could cure me of both.
A non-Hodgkin lymphoma diagnosis
I discovered I had cancer when I went to the doctor about a lump in my throat. I’d let it go for several months, but it grew and shrank several times before I’d finally had enough.
My doctor said the lump was probably a “thyroglossal duct cyst,” or a growth on my thyroid, and referred me to an ENT for confirmation. The second doctor agreed, so we scheduled surgery to remove it. But the lump turned out to be a swollen lymph node. A biopsy revealed it was non-Hodgkin lymphoma. My family doctor referred me to MD Anderson, so I made an appointment at the location closest to my home, MD Anderson in Katy.
There, I met with Dr. Nikesh Jasani. He asked MD Anderson pathologists to re-examine the specimen from my throat and ordered additional scans. Those showed I had a mass in my stomach and nodules in my spleen, lungs and throat. That made my cancer stage IV. He also refined my non-Hodgkin’s lymphoma diagnosis to a subtype called Marginal Zone Lymphoma, or MZL.
The hepatitis C drug that helped shrink my cancer
Dr. Jasani referred me to Dr. Felipe Samaniego and Dr. Harrys Torres for additional treatment at MD Anderson’s Texas Medical Center location. When I met with them, I asked whether we were going to tackle the hepatitis C or the lymphoma first. To my surprise, they said “both,” because lymphoma has proven very responsive to a new drug for treating hepatitis C.
I took ledipasvir/sofosbuvir for 12 weeks, and by the end of the second one, the hepatitis was undetectable in my system. The only side effect I experienced was a slight headache sometimes. And though the drug shrank all the nodules away into nothing, it didn’t reduce the mass in my stomach. An additional biopsy found that my cancer had advanced. The mass was a different kind of non-Hodgkin lymphoma: diffuse B-cell.
To treat the remaining cancer, I completed six months of “R-CHOP” chemotherapy (rituximab, cyclophosphamide, doxorubicin, vincristine and prednisone) in 2016. And I’ve shown no evidence of disease since December of that year. Now, I’m just on a “maintenance” chemo — a targeted therapy called rituximab — to extend my remission time, and maybe stop the cancer from coming back at all.
Why I urge other cancer patients to get tested for hepatitis C
I didn’t know that having hepatitis C put people at greater risk for developing marginal zone lymphoma and other cancers, but I do now. So, I tell everyone who’s been diagnosed with cancer to get tested for it.
Treatment options were so limited when I was first diagnosed with hepatitis C that my primary care doctor suggested I take a “wait and see” approach. At that time, the medicine I took to treat it was still being developed.
But the future is so bright now for people with hepatitis C. There’s a new drug at hand with a phenomenal cure rate, and a lot of people have been waiting a long time for it. My treatment was an unqualified success.