Jamie Reno (@jamiereno) published a blog post · October 1st, 2013
The Lymphoma Cancer Drug That Saved My Life Should Be Saved
My favorite college journalism teacher once told me I should never start a story with the tired cliché, “It was a dark and stormy night.“ Well, sorry professor, but I’m about to break that writing commandment. Why? Because it really was a dark and stormy night in the fall of 1996, when I nervously sat in my oncologist’s office as he gave me the dire diagnosis: "Jamie, you have stage IV follicular non-Hodgkin's lymphoma."
Cancer?! I could not believe what I was hearing.
A few days later, while still in shock and denial, I reluctantly began a chemotherapy regimen called CHOP, with which I am sure many of you are familiar. It made me really sick but put me in remission for about two years. When the lymphoma recurred in early 1999, my doctor wanted me to do chemo again. My response? "Thanks, doc, but no thanks."
Instead, I told him I had 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, Bexxar, which has long since been approved by the Food and Drug Administration (two RIT drugs have, actually: Bexxar and Zevalin), was virtually unknown at the time.
Even my oncologist was only vaguely familiar with it.
But I had done my homework. I'd learned that 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.
I’m glad I did. I have not been treated for my cancer since, though last fall, after 13 years of remission, we did discover enlarged lymph nodes in my abdomen and I am now in “watch and wait.” Bottom line? Radio-immunotherapy saved my life.
Since that trial, RIT has been the subject of considerable controversy. Publications ranging from Newsweek, my longtime employer, to the New York Times have reported that RIT has not been utilized as much as it should by lymphoma patients for reasons that have nothing to do with its efficacy.
There are all sorts of reasons for this, ranging from inequitable Medicare reimbursements and other money issues to unfounded fears among patients and even some doctors that this treatment is dangerous and problematic because of its radiation component.
But there is frankly no justifiable reason why Bexxar, the drug that saved my life and the lives of so many others, is now being discontinued by GlaxoSmithKline (GSK).
As I was the first to report on my national news blog The Reno Dispatch back in August, GSK has announced that it will stop producing and selling Bexxar in February 2014.
A spokesperson for GSK told me the decision to discontinue Bexxar involved a "thoughtful and careful evaluation of patient needs and the clinical use of the therapy…. There are other treatment options available for patients with relapsed non-Hodgkin’s lymphoma."
But those other options are not as good.
Bexxar and Zevalin, which is thankfully not being abandoned by its manufacturer, Spectrum Pharmaceuticals, are clearly the best option for many men and women who have follicular, the most common type of non-Hodgkin’s lymphoma, which is the seventh most common cancer in the United States.
GSK told me that its “commitment to the oncology community will continue through our efforts to develop and deliver other therapies to help address the unmet needs of patients living with cancer."
Really? I don’t see how a company that is committed to cancer patients dumps this amazing drug. The way I see it, GSK never properly marketed or promoted Bexxar- and now it’s about to go away for good. It's a mystery and a tragedy that a cancer treatment that works so well and has such minimal side effects could not be saved.