Read reno's new book, "Snowman
On The Pitcher's Mound"
By Jamie Reno, Exclusive to Lymphomainfo.net
On a cold, gloomy night in November 1996, I sat in my doctor's office staring blankly out the window into the darkness as he gave me the grim diagnosis: "stage IV follicular non-Hodgkin's lymphoma cancer." A few days later, I began a grueling regimen of CHOP chemotherapy that made me very sick but put me back into remission for about two years.
When my cancer made an unwelcome return in early 1999, I was determined to find a treatment that would give me a longer remission and fewer side effects. Mind you, this was pre-Google; information was a little harder to come by in those days. But I did as much web surfing as I could, reached out via phone and email to dozens of people with the same cancer as me, read as many cancer books as I could, researched every possible lymphoma cancer treatment (traditional, experimental, holistic and even off-the-wall), contacted cancer organizations and support groups, and even tracked down the creators of several lymphoma drugs and spoke to them personally.
After poring over all the information I'd accumulated, I made the decision to enroll in a phase three clinical trial of a then-experimental treatment called radio-immunotherapy, also known as RIT. The drug, which has since been approved by the Food and Drug Administration (two of them actually: Zevalin and Bexxar), was virtually unknown at the time. Even my oncologist was only vaguely familiar with it and suggested it wasn't right for me. But I was resolute, and hopeful. The percentage of complete responses among lymphoma patients who had taken RIT in trials was higher than with chemo, the remissions were evidently longer, and the side effects were relatively minor. It was still a risk, but I was willing to take it.
Radio-immunotherapy saved my life. Since that trial, RIT has been the subject of considerable controversy. Publications ranging from Newsweek to the New York Times have reported the fact that RIT is simply is not being utilized as much as it should be by lymphoma patients for reasons that have nothing to do with its efficacy. There are all sorts of issues ranging from inequitable Medicare reimbursement rates to unfounded fears by patients and even some doctors that this treatment is dangerous and problematic because of has a radiation component.
There are numerous false notions about RIT and unfortunately not enough oncologists are doing anything to dispel them. For example, there is no evidence that it increases the risk of secondary concerns any more than chemotherapy. It's also not true that there is too little data to make an informed decision about RIT. An enormous amount of data has in fact been collected in the nearly two decades since trials for RIT began in 1990. Meanwhile, tens of thousands of lymphoma patient who could potentially benefit from this treatment remain either unaware of it entirely, or remain misinformed.
Significantly, in September 2009, the FDA approved Zevalin for frontline use in combination with chemotherapy (known as consolidation therapy.) That means that for the first time, lymphoma patients can now take RIT when first diagnosed. And a long-range clinical trial whose results will be announced next year will likely give Bexxar the same front-line status. It is my hope that eventually both Zevalin and Bexxar will be available as a front-line stand-alone therapy (without chemo). The trials for this are very promising, too.
RIT is of course not for everyone. There are numerous treatments for lymphoma that are effective and FDA-approved, and many more in the clinical trial pipeline. I simply want lymphoma patients to be aware of all their treatment options and make informed decisions. RIT is just one weapon in the increasing arsenal to battle this treatable and beatable disease. But it saved my life and it could save yours.
