Tuesday, September 23, 2014

Patient Power on Follicular Lymphoma

If you thought that last Patient Power video was good, you're going to love this one.

It focuses on new treatments for Follicular Lymphoma, specifically, not just lymphoma in general.

The speakers are Dr. John Gribben from the Barts Cancer Center in England, and Dr. Wyndham Wilson from the National Cancer Institute. As with pretty much everything that Patient Power does, the tone is upbeat and the content is informative.

There's some emphasis on understanding the pathways that Follicular Lymphoma cells take, and on targeting not just the cells themselves, but the processes that they go through in order to do their jobs. So the treatments try to disrupt these pathways. Again, Idelalisib/Zydelig, Ibrutinib, and Revlimid get mentioned.

 They point out, too, that many newer treatments focus on Follicular Lymphoma as chronic, so instead of treating and then waiting to treat again, the treatments are taken every day, keeping the disease under control.

That brings up the question, of course, of which approach to take: try to get rid of it, or try to keep it under control.

CAR T cells get a mention here, too, as they did in the more general lymphoma video. (This video was also done at the iwNHL workshop; I'm guessing there was a session that focused on CAR T cells that got everyone excited.)

I'm going to give you Dr. Wilson's closing statement in full, because I think it's worth reading, even if you're going to watch the video, too:

I think I’d like to close with one comment is that when I first started in this field in the late 1980s, the average median time people lived with these is around 10 years, and we’re probably now up around 15 to 20 years. There have been concrete, very favorable changes. I also want to say that there are a fairly large segment of people that get therapy where the disease never comes back in their lifetime.  Given the fact that the average age for the more common types is around 60, I think many people with current therapies can, I think, be very optimistic that these will not be life-threatening diseases, that they can live long enough, and sometimes the disease never coming back. I think that patients should be very optimistic and not see a diagnosis of these as being something that’s really going to be transforming their life because most people generally will live a very good, positive life with them. 

That's pretty nice to see, isn't it? And while some of us started this journey well before the age of 60, I think that kind of statement gives us hope, too. Median Overall Survival statistics are complicated things, and it's worth thinking about them carefully. I've written about that statistic before, and why it doesn't mean much, but the important thing to remember for us younger folks is this: Median Overall Survival means that half the people survived for fewer than 20 years, but half survived for more. And there's no upper limit for those that survive for more than 20 years -- there's nothing that says we can't go for 50.

(Maybe I'll write about that some more sometime soon....)

Watch the video. It's just more reason to be positive.

1 comment:

Virginia Miller said...

Thank you for this posting, Bob! It is extremely encouraging!!