Wednesday, August 30, 2017

It's that time again. Time to blog... and time to treat.

Tomorrow I'll start a short clinical trial -- four weeks -- in which we test the combination of  Rituxan with Imprime versus the standard treatment, just Rituxan. The trial is open to patients with relapsed/refractory follicular lymphoma, and I'm eligible which means that my lymphoma has relapsed.

That's elicited a few questions this week. (More on that later.) Does this mean your lymphoma is back? Did it ever leave? Is it getting worse? Are you okay?  To which the answers are yes, sort of, not really but sort of, and yes, definitely.

So here's the deal: follicular lymphoma, as I've known since the start is an incurable chronic disease. It never really goes away. That's bad. But it's often very slow growing. That's good. So five years ago, after I did my six rounds of Bendamustine and Rituxan, it went away. Sort of. And then slowly grew back, like pesky hedges that you didn't really notice were growing until they started overtaking your yard. So you get out the hedge trimmers and beat them back. Eventually, they'll grow again, but right now, there's no way to remove the hedges completely.

As has been the case for the more than six years since diagnosis, I've had no symptoms, other than the occasional small swollen lymph node. I feel fine.

So why treat? Well, not treating was an option, as was the option of just Rituxan. And Rituxan (and hopefully Rituxan plus Imprime) is a good treatment options for trimming back the hedges when they aren't too big and bulky. And right now, my hedges are just a little overgrown.

I'm also happy to have the chance to contribute in a small way to cancer research. It's through clinical trials that research moves forward. (There's a great post and podcast about that on our Dana-Farber blog.) If it weren't for clinical trials, today's approval of Car T-Cell Therapy wouldn't have happened. And, coincidentally enough, Car T-Cell therapy is an approach being tested in many blood cancers, including follicular lymphoma. And, may, big emphasis on the may, become a way to remove the hedges completely.

Talking about Cancer

For more than nine years, I've worked at one of the premier cancer centers. For more than six years, I've had cancer. Yet, I hesitated talking about my new treatment plans. For about a week, I procrastinated before telling my colleagues. I'm not sure why, to be honest. I think partly I was concerned about people being concerned. I don't like people worrying about me. But the other part of the answer is that I feel fine and until I'm sitting in the infusion chair tomorrow with stuff dripping into me, it doesn't feel like a big deal. I've known so many people who have had such challenging treatments, that a once-a-week treatment for four weeks seems kind of trivial.

In the end, though, I'm glad I ended up telling folks. It felt good to do, and the notes of support have been great to hear.