The Fred Hutchinson Cancer Research Center in Seattle, Washington is one of those top-notch lymphoma places that I hope you never need to use.
Their news service posted a great piece a couple of weeks ago called "How Cancer Survivors are Teaching Researchers — Even Decades Later," and it discusses some long-term (very long-term) research that they do on cancer survivors. They have something called the Long-Term Follow Up Program that keeps up with patients after a Stem Cell Transplant or Bone Marrow Transplant -- some patients have been followed for over 40 years. Of course, that gives researchers an awful lot of information about cancer survivors. They learn about emotional as well as physical things.
But Fred Hutch isn't only interested in transplant survivors. As the article also discusses (and what is no doubt more interesting for us), researchers at the Center have also been engaged in a long-term study of Follicular Lymphoma patients. The study started in 2001, and involved advanced FL patients who hadn't been treated before. 500 patients were given either R-CHOP or CHOP + RadioImmunoTherapy. The first results of the trial were published in 2013, and found that both groups did really well -- over 90% were still alive after 5 years.
Long-term follow-up is especially important for Follicular Lymphoma patients, because our disease is so slow-growing. The R-CHOP vs CHOP + RIT trial had excellent long-term results as well. Over 80% of patients are still alive. There is no difference in Overall Survival between the two groups, though Progression-Free Survival was a little better for the RIT group.
But the big picture here is all of the information that the study provides. So many studies focus on relatively short-term results that it's hard to know if there really is a benefit. If a treatment cures one cancer but gives you another one 10 years later, is that really a success? Long-term follow-up helps answer that question, and provides more detail about other issues, physical and emotional, than can help doctors and patients make decisions about treatments.
And again, when we have a disease with an Overall Survival that gets close to 20 years for a lot of us, then that kind of information matters. Quality of Life matters for us. Treatments need to help us now, but not hurt us later.
There's a little more to the article -- some stories of individual patients. It's a nice piece, and a nice reminder of a couple of things: 1) as patients, we need to think about the many years we may have left, and 2) long-term clinical trials can help us out a lot, but people need to volunteer for them if they're going to work.