Refining Modern Transplant Therapy: Current Studies in Myeloma - See more at: http://www.patientpower.info/video/refining-modern-transplant-therapy-current-studies-in-myeloma#sthash.ABqY7xuf.dpuf
Now, Myeloma ain't Follicular Lymphoma. It's a semi-distant cousin, another kind of blood cancer, so the information in this video (which describes a specific clinical trial) isn't directly relevant for us, but it has some important lessons.
(And I should point out that I am sharing this at the request of Karl from Lymphomation.org, who posted it to the support group and asked that it be shared widely. Given all that Lymphomation as done for me, and all of us, it's the very least I can do.)
So what does a trial for Myeloma have to do with us, as Follicualr Lymphoma patients?
It's the idea of clinical trials in general that's so important.
As the Patient Power video points out, clinical trials are vital to us as cancer patients. Without trials, there is no progress. If new treatments don't ever get tested out, then they don't ever get approved. All of those arrows in the quiver that I like to talk about just end up on the ground, not ready to come to our aid.
Dr. James Omel, who is featured in the video (and who is both an MD and a cancer patient) reminds us in the video that "we owe a deep amount of gratitude to the patients that went before us, and we need to pass that on to patients who come after us by joining trials." Karl likes to call clinical trial participants as "heroes." It should be clear why.
Here's the connection to Follicular Lymphoma. Myeloma is another of those cancers that has a bad habit of coming back even after a seemingly successful treatment. If that's the case, as it often is with Follicular Lymphoma, then if we are taking a "management" approach to our disease (getting treatment as it is needed, rather than going for a cure), then a trial seems like a pretty natural choice.
Why? Well, here's how I think of it: if Dr. R were to tell me that I needed treatment, and I knew, or assumed, that I would likely need treatment again in a few years, and maybe again a few years after that, then it really wouldn't matter which treatment I had, would it? Of course, I'd want one that would be effective, and with few side effects as possible. But that opens up a lot of possibilities, doesn't it?
So why not include a clinical trial on that list of choices?
Now, I'm encouraging clinical trial participation, even though, as many of you know, I have never been a participant myself. And I think maybe my own experience might explain why some of us don't participate.
I've had the discussion about trials with Dr. R, and he knows I am open to them. But I didn't do it when I needed treatment, mostly because of convenience -- or inconvenience. Despite my living so close to some major cancer research centers, a trail really wouldn't have been convenient.
Like lots of asymptomatic Follicular Lymphoma patients, I haven't really missed a lot of work because of my disease, or had too many major disruptions to my life. I think if my FL were presenting is a different way, and it was keeping me from working, then, ironically, it would be easier to participate in a trial. I could go to Boston or New York for treatment as frequently as necessary.
But for me, the most convenient place to go, the one that would have caused the fewest disruptions, would have been Yale. And back then, Yale's lymphoma trials were focused msotly on T-Cell lymphomas. Just not convenient.
So maybe the nature of our lymphoma works against us, in a way. We want our treatments to be effective, with minimal side effects, but also convenient. And we don't always live near a research center that is conducting a trial that fits our situation. Easier to just go with Rituxan or Bendamustine in the doctor's office.
If that's the case for you, too, then I suggest you do what I do. While our need for convenience might put us at a disadvantage, one advantage that we asymptomatic folks have is time. You have the time to educate yourself, which is why you read this blog (I assume). So add something else to your reading list: every now and then, take a look at the list of clinical trials to see if one is happening near you. Talk to your oncologist about it. See if it fits your situation. And then, if the time comes for treatment, you'll know if there's one nearby for you.
If you've never looked for trials, it's incredibly easy. The good folks at Lymphomation make it even easier for you to search. Click here and see for yourself.
Be a hero. (If it's convenient.)