Wednesday, March 4, 2020

Follicular Lymphoma Treatment Updates

If you've been reading the blog for awhile, you know I like to read and report on "state of the field" pieces that I find online. These are articles or videos from lymphoma experts that talk about where we are in terms of treatment, and maybe what we might expect in the near future.

I like to think I keep up with things pretty well, so these "where are we now?" pieces don't always give us anything new. But it is nice to see what gets lymphoma experts excited these days.

Here are a couple of them for you:

First, "Deep Data Dive Needed for Upfront Treatment Selection in iNHL." This was published last week on OncLive, and features a review of a presentation from Dr. Sonali Smith from the University of Chicago. The article is set up as a series questions about changes in the way indolent Non Hodgkin's Lymphoma is treated, based on recent clinical trial results. (This isn't strictly about Follicular Lymphoma, then, but FL is the most common indolent, slow-growing lymphoma, so a lot of it applies to FL).

The questions:
Can the “Chemo-Free” R2 Regimen replace Chemoimmunotherapy?
Can Obinutuzumab replace Rituximab?
Should patients receive Maintenance therapy? 

The answers?
Well, if you were expecting a simple "Yes/No" answer, you haven't been reading about Follicular Lymphoma too much. There are a lot of "maybe" or "it depends" answers here. R-squared is an alternative to traditional chemo, but not in all cases. It is effective, and does have different side effects than chemo, but not necessarily fewer of them. Obinutuzumab is a good alternative for some patients, but Rituxan still works fine, and there's no difference in Overall Survival between them. And maintenance? I'm not even going to bother answering that one, except to say that, yes, sometimes it's a good thing.

So that's the state of were we are -- lots of questions that still need answers.

Or do they?

You can look at this as being a frustrating lack of definite answers, which is understandable.
Or you can look at it as our having lots of choices. To me, I take comfort in knowing that there are lots of options for me. Rituxan has a way of not working after a while if patients get too much of it. there's some suggestion that Obinutuzumab might work for those patients.

See? Options are good.

The other one to share is called "Follicular Lymphoma: Recent and Emerging Therapies, Treatment Strategies, and Remaining Unmet Needs," published a few months ago in The Oncologist. (Thanks to reader Christine for sharing the link with me.)

Unlike the first one, this article is meant to be comprehensive, giving generalist oncologist (not lymphoma specialists) an overview of Follicular Lymphoma: statistics about who gets it, how it is staged and risk-stratified, and how patients at various places in their FL experience can be treated (newly diagnosed with no symptoms, newly diagnosed with some symptoms, previously treated, etc.).

It also has a pretty good list of treatments that currently in trials -- pathway inhibitors, bispecifics, antibody-drug conjugates. You can read about some of them here and here, if you want a little more detail. If that first article is hopeful because it suggests we have lots of options right now, then this one is super-hopeful because it shows that there are lots of options that might be available to us in the near future.

Of course, it also describes some of the challenges that we face, too -- effective treatments that also mess with our Quality of Life, especially if we need to take multiple treatments over many years (which is the case for a lot of us); we're still unsure of the best sequence for treatments -- which comes first, and after that stops working, what to try next, etc. And difficulty in figuring out which patients are likely to transform, or to need treatment within 2 years after their first treatment (EFS24).

So there are still lots of challenges out there, but lots to be happy about right now, and lots to be hopeful about in the future. I look back at the state of the field in 2008, and I'm amazed at how far we've come since then (there have been 12 treatments for Follicular Lymphoma approved by the FDA in the 12 years since I was diagnosed. How cool is that?)

Stay educated, everyone. But mostly, stay hopeful.


4 comments:

Blade Runner said...

Hello Bob.

Just this week I was diagnosed with follicular lymphoma grade 1-2 of 3. They called it low grade follicular lymphoma. For the past few days all i have done was read as much as i can about what i have and treatments. I am so glad i stumbled upon you blog. I am a 52 year old male that does not drink and smoke and thought i would continue the tradition of living into my 100's with my family history of doing the same till this bomb of information hit me and my wife of 27 years. I read many of your blog post tonight and i am happy to read how you and your family are doing. It made me feel the best i have felt since finding out my diagnosis. I will see my oncologist for the first time next week and i am so nervous and scared but reading your post has helped me a bit with the anxiety. Thank you.
Best
Dave

Lymphomaniac said...

Hi Dave.
I'm Bob -- 52 years old, married 27 years, diagnosed with FL stage 1-2 of 3. (Also, I don't smoke, but I do like the occasional scotch.)
Wow. Lots of parallels.
Since we're on how alike we are, let me also mention that I was diagnosed 12 years ago, haven't needed treatment in 10 years, and am feeling pretty good today.
I'm sorry to hear you got the diagnosis, but I'm glad the bog was able to help a little with your anxiety. Those first few weeks after diagnosis are burned pretty well into my brain, so I have a pretty good idea of how you might be feeling, especially before the first oncologist appointment. I know, for me, seeing the doc and getting some questions answered helped a lot. I hope it helps for you too.
You didn't ask for it, but I'm going to offer some advice. For that first appointment, have someone with you if you can, and have that person take notes. Ask questions (here's a good list: https://sarahcannon.com/blog/entry/12-questions-to-ask-at-your-first-oncology-appointment). Don't leave without feeling like you have had all of your questions answered. Try not to focus too much on statistics, as tempting as that can be: you are an individual, not a number. Everyone's situation is different, and the doc can help you understand your own unique situation. There is lots of reason to be hopeful with FL.
I'm happy to share any information, or answer any questions, that I can. Write them here, or feel free to email me at bobtalisker@gmail.com
And keep us updated. I'm sure lots of people reading know how you're feeling, and want to hear how you're doing.
Bob

Blade Runner said...

Hello Bob.

Thank you so much for writing back. Due to the covid19 my wife will not be permitted to my 1st appointment but she can attend with video chat. I think both of my daughters will be in attendance as well. Seeing that they are both biology majors they probably understand more than me. I sent the link of questions to my wife and the link to your blog. When i woke this morning the 1st i said to her after saying i love you was "i sleep really good because i came across this gentleman's blog and it really helped put my mind at ease and i feel asleep after writing to him."
Thank you for your email i will be sure to write to you as well. I will also try not to over burden you with questions or letters.
I am so glad to read how long you have not needed treatment for your FL. That is great news!
I am a numbers guy and that is very good advice about trying not to get caught up in them. Much of the information on the net seems to be a good bit out of date i am finding.
Oh the other thing. I have only told a handful of family and friends. And only my boss and HR know my diagnosis. I am still struggling to figure out if i should tell people or not. I don't want anyone to treat me any differently than they do now.

Best regards
Dave

Lymphomaniac said...

Dave, I'm glad I could help you sleep. (I'm a teacher, so I'm good at putting people to sleep.)
Numbers: just be careful with them. Every time I've gotten depressed about FL, it was because I let numbers get into my head. The oncologist that I got a second opinion from told me "Everything you read on the internet is already out of date." He meant that there are so many good treatments being developed, and so many statistics that haven't been updated, that we should be hopeful about the things we aren't even able to read about yet.
Glad your family will be able to attend the appointment virtually. Having Bio majors in the family can be helpful. And I hope it will be a comfort to them to able to be there and find out more. My kids were 10, 8, and 6 when I was diagnosed, which was hard. Now they are 23, 21, and 18, and I've seen them all graduate from high school and beyond. There is much to look forward to -- for both of us.
Feel free to email before and after your appointment. I'm happy to help.
Bob