Tuesday, December 31, 2013

Follicular Lymphoma: The Best of 2013

For the last 3 weeks or so, I've been seeing lots of end-of-the year lists, proclaiming the best of, or the worst of, or the top whatever: Sports Illustrated's top sports moments of the year, for example (one too many sad Boston sports moments in there), or Ralfy's Single Malt Scotch of the Year for 2013 (an excellent choice).

I thought it might be fun to put together my own "Top 10" list for Follicular Lymphoma. Despite what the blog post title says, this isn't necessarily the ten "best"; it's not even the ten most significant. More like the ten that struck me most.

I know some of these end-of-year lists are designed specifically to get people discussing, and this one is probably no different. So feel free to argue for a different order, or to leave some things out altogether and suggest new ones.

Here they are, in descending order:

10) Approval Sought for Idelalisib/CAL 101 for Indolent Lymphoma. This could potentially be higher that #10, but I'll let you fight that out. Gilead, manufacturer or Idelalisib, submitted an early application to the FDA, based on phase 2 clinical trial data. Significant for a couple of reasons: it's the first kinase inhibitor to go through the process, and an approval could bolster other phase 2 data-based applications (and maybe speed things up for other treatments). I've been following this for a little while, because some support group folks were in the trial, and were having some great success.

9) Ibrutinib Makes Everyone Lose Their Minds with Excitement. The FDA approved Ibrutinib for Mantle Cell Lymphoma patients in November, giving it "Breakthrough Status" and approving it early. It also achieved a 100% response rate in 15 patients (10 complete, 5 partial) when combined with CHOP in DLBCL patients in August. It's currently in a phase 2 trial for Follicular Lymphoma, and its mind-loss-causing abilities seem like they might be justified.

8) GA101 plus CHOP Kicks Butt. Results of a phase 2 trial of Follicular Lymphoma patients showed that G-CHOP achieved a 93% response rate. GA101, also known as Obinutuzumab, seeks to be an improvement on Rituxan; it is humanized (no mouse parts) and glyco-engineered (designed to latch on better). A phase 3 trial seems to be justified.

7) Some Guy Stays Alive for 5 years and Thinks He's Special. I wanted to include someone telling his or her story of being a Follicular Lymphoma patient, and I thought, "Why not me?" So here's my Lympho Bob entry from last January 15, when I celebrated my 5 year Diagnosiversary. It might seem a little pompous, but it's really quite the opposite -- take it as an example of my humility and self-control that I didn't put myself higher. (And yes, I beat out the other three, because none of them are FDA-approved for FL yet. At least I did something...)

6) Learning from Cancer. OK, so my own story isn't the only one to make the list. I have to include something from Michael Buller's Thinking Out Loud blog. My all-time favorite post of his is his Top 10 Perks of Being Treated for Follicular Lymphoma -- funny, insightful, very positive and hopeful -- but written in 2012. My favorite from this year is 10 Things I've Learned from Cancer -- equally insightful and inspiring truths -- lessons that I hope any newbies learn along the way. (Bonus: there's a part 2.)

5) Transformation no so common? This one is exciting and hopeful, but worth being cautious about. Researchers found that the overall transformation rate for 600+ Follicular Lymphoma patients was under 11%, far less than the 30% that seems to be the consensus. Excellent news, but I've seen the figure anywhere from 15% to 50% of FL patients will transform. This gets #5 based on the hope it inspires, but I'm still not sure we're suddenly that low.

4) Bye Bye Bexxar. This is why it isn't really a "best of" list -- Bexxar, one of our RIT options, is not going to be made anymore. Nothing worse than our quiver being an arrow short. Jamie Reno (speaking of "best of") wrote about his own experience with Bexxar, and his disappointment, in reporting on the decision. Plus, Jamie's just worth reading. You won't find too many better writers on cancer.

3) Bendamustine Kicks Butt Even Better than CHOP.  A researcher team has been pitting  Bendamustine against R-CHOP for several years: head to head, mano a mano, B cell to B cell. After giving updates at conferences, they finally subjected their results to peer review. Bendamustine won big -- better results with fewer side effects. Probably cemented Bendamustine + Rituxan as the preferred first treatment for Follicular Lymphoma (along with Watching and Waiting, straight Rituxan, and a bunch of other things). Worthy of the bronze medal.

2) Survival Stats. When I was first diagnosed, someone wrote to me to tell me how worried he was that Wikipedia said that the Median Overall Survival rate for FL was 8 to 10 years. Those are complicated numbers to calculate and to explain, but they were fairly accurate -- for 1997. There is some suggestion that our current median Overall Survival is at least 18 years, and likely higher. Lots of reasons that number is also complicated (starting with the ways "median" and "overall survival" are defined), but the number makes my heart skip a beat in a good enough way that it's staying at #2.

1) Rituxan + Pidilizumab for Follicular Lymphoma. I'll admit to a bit of "recency bias" -- the stuff we have experienced most recently is the stuff we tend to believe the most. And since this bit of news came less than a month ago at the ASH conference, I might be giving it too high a ranking just because it's fresh in my mind. But given how excited people are about T-cells and Immunotherapy, I think this one holds the most reason to be excited. Rituxan gets a new best pal in Pidilizumab, which tells T cells to get off the couch and do their job. Extra points for being part of a larger trend, but ultimately the one on the list that gets me most excited.


So while there might be some argument about the list, there's no argument that this was a damn good year for Follicular Lymphoma. We have some pretty special stuff in the pipeline, and even if only a small percentage lives up to its promise, we're in for a bright near future.

Thanks for a great year, everyone. I hope next year is good to you all.

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