Monday, October 17, 2016

Follicular Lymphoma: Where We Are Now

Many thanks to the commentor who (just this morning) provided a link to a session on Follicular Lymphoma at the European Society for Medical Oncology meeting last week. (The commentor is listed as "Unknown," which is kind of cool -- we have lots of mysteries with FL, but The Unknown Commentor is kind of a fun mystery.)

ESMO 2016 took place in Copenhagen, and has tries to "bridges the gap between researchers, clinicians and patients and unites all stakeholders focused on finding the most effective cancer treatment solutions available today."

The link to the session is from LymphomaHub, and includes photos of slides from the presentation, as well as commentary. The presenter was Dr. Michele Ghielmini from the Oncology Institute of Southern Switzerland. The presentation is called “Follicular Lymphoma (FL): Novel Developments Beyond Chemotherapy.” Since it took place last week, it's probably about as up-to-date a discussion of Follicular Lymphoma as we'll find.

The link to LymphomaHub is pretty easy to read, and you can read the whole thing on your own, but I'm going to list a few things that I think are highlights.

  • Dr. Ghielmini is a big advocate of Rituxan. Chemotherapy does not provide much benefit as a first treatment for FL, especially when long-term side effects are taken into consideration. Chemo is best reserved for later treatments. That seems pretty well in line with what a lot of people are saying, though there are still plenty of oncologists who recommend R-CHOP or R-Bendamustine as a first treatment.
  • The current median Overall Survival rate for Follicular Lymphoma patients is about 15 years. He gets this from some recent published data. He also gives some other OS figures: FL patients younger than 40 have a median OS of about 24 years. There are lots of factors that determine whether a patient is on the plus or minus side of that 24 years, but it's a very encouraging number for those of us who were diagnosed at a young age.
  • Rituxan Maintenance is still controversial. There's lots of evidence that says it's a good thing, and lots that says it's not necessary. Tough decision for those who have to make it. Like many decisions with FL, I think it will come down to Quality of Life -- do you have the time and money to do it? Will doing it give you peace of mind?
  • R-Squared (Rituxan + Revlimid/Lenalidomide) seems to be as effective as Rituxan + Chemo, though there needs to be more long-term follow-up to see if the great response rates mean a long Progression-Free Survival (it helps lots of people at first, but will it keep helping them for a long time?).
  • "Small Molecules" or pathway treatments such as Idelalisib, Ibrutinib and Venetoclax. Dr. Ghielmini showed the most recent results for Idelalisib and Ibrutinib. We've known about these results for a while -- nothing new presented here. A little less well-known, though, are results from early trials for Venetoclax (also known as ABT-199). It's a BCL-2 inhibitor, and the latest data is from a very small phase 1 clinical trial for Follicular Lymphoma. (Maybe we'll see updated results soon?)
  • There are lots of trials that are investigating combinations of various treatments. There are lots of folks who think this is the best way to go. Single agents might work well, but cancer is sneaky enough to find ways around those successes. Blocking more than one path or attacking in more than one way seems like the best way to go.
  • Finally, the LymphoHub piece concludes with: "In future, we need to develop combinations based on the oncogenic alterations of each individual tumor." This is also probably true. As much as we can find general approaches that seem to work for lots of people, in the end, we'll probably need to find treatments that are based on biomarkers for each individual patient to give the best chance of success.
So, overall, this was a nice article for summing up much of what we know about Follicular Lymphoma and its treatment, as of last week, anyway.

But as Dr. C, the lymphoma specialist I saw a week after I was diagnosed, told me almost 9 years ago, "Anything you see online is already out of date." As up-to-date as Dr. Ghielmini's presentation is, it doesn't include everything (no mention of CAR-T, for example). And it doesn't include results from trials that we'll probably see in 6 weeks or so when ASH takes place.

And that's not a criticism of Dr. Ghielmini. It just means that we all have lots more to be excited about as Follicular Lymphoma patients. As great as things look right now, especially compared to 9 years ago when I was diagnosed, there's still lots more great stuff to come.

(Thanks again, Unknown Commentor, wherever you are......)


Jurup said...

Thanks Lymphobob. I meant to sign off on my comment but pressed "publish" too soon. Glad you liked the link.
Best wishes

Anonymous said...

Because this is such a long term disease, and things are changing rapidly, I really, really, really think it is time to quit posting OS. When I was diagnosed 3 years ago, my onc at MDA in Houston told me the OS was 20 years. And he followed that soon it will be 25 and the thing that is going to keep it from going much higher is the fact that half the patients dxed are over 60. Made sense to me, but I doubted him. Then over breakfast I read my paper 3 days later and read this article that basically said OS was 20 years for FL:

Then Stanford does this study where they put a year range on the group of patients from the 1960-75, 75-86, 87-96, 97-2003. The 1st 2 groups had a Median OS of 11 years, then it jumped to 18.6 years in the 3rd group....keep in mind, this group did not use Rituxin initially (but likely later on) and the 4th group had yet to reach Median OS and this group had Rituxin and SCTs available to them.

My point is, this group with a Median OS of 18.6 years was diagnosed 25 years ago. So to hear 15 makes it sound like we are digressing....but we are not. It all depends on which study you read. All of them are different. In the past you published an article from Dr. John P. Leonard who states that 80% of FL patients will die with their FL and not from their FL.

So who do we believe, Bob? Is Dr. Leonard just trying to make us feel good?

Anonymous said...

....just to follow up on the previous comment. If you look closely, that 1 slide references the Stanford study where patients diagnosed in era 3 had a Median OS of 18.6 years. It is on the right side of the slide. I guess we are better off going to Stanford than Europe!!! Stanford's patients from a quarter century ago had a Median OS higher than what Europe has today I guess. Recently saw something you published about Median OS being 32.6 years also. It can be confusing.

Lymphomaniac said...

I post Overall Survival statistics because I think it's the first question (or one of the first) that a cancer patient asks -- How much time do I have? Median OS statistics can't answer that question for any individual one of us. That's just not how it works. But most of us want to know -- Do I have a chance to (see my kid graduate, see my daughter get married, see my grandchildren be born, live to retirement and travel to Italy, etc. etc.)? It's a natural thing to wonder. OS is the closest thing we have to telling us that.
When I was diagnosed almost 9 years ago, the OS was 8-10 years. I was 40 years old and my kids were 10, 8, and 6. I prayed that I'd be alive for 5 years. And every year or two, someone would publish a study (or even just a guess) about what the OS was for Follicular Lymphoma. And it inched up every year. 12 years, 15 years, 18 years. I'm at a point now where I don't worry as much about what a general statistic says. I focus more on how I'm feeling and what's happening with my own body, and on learning as much as I can about FL and what my future might be, in terms of treatment.
But there are a lot of people who aren't at the same place I am. And if seeing a 15 year OS (or 18 years, or 24 years) makes them feel better, then I'm happy to provide that number for them. I say it a lot, and I still stand by it -- this is an emotional disease as much as a physical one.
I don't worry about which study gives which figure. When it comes to statistics, I've learned that, personally, I like to ignore the ones that make me feel bad and pay attention to the ones that make me feel good. I don't care if they disagree. I know that I'm way better off than FL patients who had the disease pre-Rituxan, and I feel confident that I'll be around in 10 more years when some very cool treatments that we haven't even thought of yet are available to me.
(And I'm happy to talk more about OS and what I think it means.)

Jurup said...

Just thought I would share another optimistic article on treatment options:


Anonymous said...

Bob, In your Blog on November 30, 2015 you posted a link titled ASH: Life Expectancy for Follicular Lymphoma. The referenced study is archived, but it stated that the Median OS for pts who responded well to their 1st treatment was over 32 years....but for All pts it was 25 years. Let's just go with that one.

Just a bit skeptical about this study above with the photos of hand help printouts and a reference to the Stanford Study that is not even mentioned. This study above, as you said, does not mention CAR-T either. One real positive note though is that the expectation for the 40 year old pt is a Median OS over 30 years!

Overall, one frustrating item is that Rituxin is our main drug and nothing has come along in the last 20 years that is better....well that we know of. Maybe time will tell as these immunotherapies have a chance to prove themselves.

maria jana said...
This comment has been removed by a blog administrator.
Barbara Patch said...

You were a bright light when I was first diagnosed 3 years ago and are still a source of illumination!

Lymphomaniac said...

Thank you, Barbara. That makes my day.