Tuesday, December 29, 2020

2020: The Lympho Bob Year in Review

This is probably my last post of 2020, so I'll use it to first say Goodbye to a pretty bad year. 

I don't need to tell you why it's bad. So much worry and anxiety. Poor health for many of us (I added a new health issue my list this year. It's not cancer-related. I'm not going to get into it.) Loss of loved ones for some of us. Loss of Quality of Life for all of us, with nowhere to go and no one to see. A lot of that is likely to continue, for a few more months, anyway.

But you know me -- I don't dwell on the bad stuff for long. Hope, even a little bit of hope, always shines through.

So in looking back at a bad year, I want to focus on the good stuff.

Here are my five biggest Follicular Lymphoma stories from 2020. They're not all completely great, but I can find some happy hopeful stuff in there somewhere.   

#5: Covid-19

Like I said, it's not all happy news. I couldn't ignore this, given the way it changed our lives this year. But I won't put it any higher than #5 on this list, either. 

Looking back on the blog, I started writing about Covid back in March. I really didn't have a lot to say about it, because so much was unknown, other than how it was making me feel. We got a little bit of guidance early on, but there was still so much unknown.

And there's still a lot we don't know, especially about how a vaccine will affect Follicular Lymphoma patients -- those who are immuno-compromised because they are currently in treatment, or who recently had treatment, or even whose immune systems have been affected by treatment long ago. No real answers. Maybe we'll get more information as more people are vaccinated and we have more data. I see FL patients online debating this, with some saying their oncologists think they should hold off and others thinking they should get it as soon as possible. Everyone's situation is different. Trust your doctor's advice.

But find some hope in the vaccine, even if you can't get it right away. Trust science. Encourage others to get it. Hang in there. We'll get through this.

 

#4: R-Squared

R-Squared is the combination of Rituxan and Revlimid (which is also known as Ledalidomide). It made news in 2019 when it was approved by the FDA for use on previously treated Follicular Lymphoma patients. It was an important approval because it showed that a non-chemotherapy treatment could be as effective as traditional chemo. Side effects were different, but not better or worse. 

The big news for R-squared in 2020 was that it was also shown to be effective in FL patients who have not yet received treatment. An ASCO presentation on Complete Metabolic Responses confirmed that untreated FL patients did very well with R-Squared. 

But what really puts it on the list is just how excited Lymphoma specialists are about it. I like to post articles and videos of experts kind of summing up what we know about Follicular Lymphoma, and R-Squared is always something they talk about, whether for the approval for Relapsed or Refractory FL, or the future approval for untreated FL. I don't know of any attempt to seek FDA approval  for untreated FL right now, but my guess is that it will come in the next couple of years. We're going to keep hearing about this for a while.

 

#3: Tazemetostat

Tazemetostat was approved by the FDA in June (as far as I know, it is still in trials in other parts of the world) for two groups of Follicular Lymphoma patients. The first is those with an EZH2 gene mutation. The EZH2 gene is important in telling cells that they are supposed to die, so a mutation mans those cells keep on growing and living, which is of course how cancer develops. Tazemetostat is an EZH2 inhibitor, meaning it stop EZH2 from keeping cancer cells alive. 

The other group is a little larger and less specific -- FL patients who do not have any other alternatives. It's good that they have an approved treatment to try, even if they don't have the EZH2 gene mutation. 

This one is really interesting to me. Lymphoma experts are very excited about it. But only about 25% of FL patients have the EZH2 mutation, and about 69% of patients had a response. To me, those aren't really spectacular numbers, at least compared to some other treatments.

On the other hand, those 25% of FL patients have a really good chance of being helped, and if I was one of that group, I'd want the option. 

I also think that, like many inhibitors, Tazemetostat may end up having a life as part of a combination therapy, along with one or more other treatments. 

But, really, it's the excitement from Lymphoma experts that puts this on the list. If they're excited, then I'm excited, too.

 

#2: CAR-T: ZUMA-5

There has been a whole lot of news about CAR-T for a few years now (see the CAR-T and Follicular Non-Hodgkin's Lymphoma blog for more up-to-date info -- I can't keep up with them).

And there's too much CAR-T news from 2020 to mention here, so I'll focus on what I see as the Big News, and what, once again, seemed to get experts so excited -- the ZUMA-5 trial.

A couple of different CAR-T treatments have already been approved for aggressive lymphomas, including Transformed Follicular Lymphoma. The ZUMA-5 trial focuses on indolent lymphomas -- the kind of slow-growing, less aggressive FL that many of us live with (including me). The phase 2 trial involves a fairly small number of Follicular Lymphoma patients (80), but the results have been very positive, with 94% having a response, including 73% with a Complete Response.

This is, once again, one of those treatments/trials that experts are very excited about. ZUMA-5 is a phase 2 trial, so we're probably not going to see this approved very soon (though, who knows? The makers may give it a shot). With numbers like those, it seems pretty likely to be approved. We're looking forward to that.


#1: Survival

In some ways, "survival" should be #1 on the 2020 list because we've all survived it. It's a low bar -- "I made it out alive" -- but I think it's an OK one in a year like this.

But that's not really why I put it at #1.

Looking back at what I wrote this year in the blog, I see a bunch of research on survival in Follicular Lymphoma.

Trends in Treatment and Survival in Follicular Lymphoma.
 
New Information on FL Survival.
 
Improved Lymphoma Survival Over 20 Years.
 
Plus a couple more articles with advice on how FL patients should think about their post-treatment lives. 
 
The overall message in all of this is the same --
 
Follicular Lymphoma patients are living longer lives.
 
Treatments are getting better. Newer treatments are allowing patients to live with a better Quality of Life. When I was diagnosed in 2008, the median overall survival for FL patients was still considered to be 8-10 years. Most research these days that looks at long-term follow-up of FL patients hasn't even reached a median OS yet. Patients are living too long to measure it. But many experts guess that it's about 18-20 years. 
 
How great is that?
 
There have been enough reminders this year that survival has to be #1. Not just because we made it through this tough year. But because it's getting easier for more FL patients to live longer and better lives.
 
We made it through this year. We'll make it through the tough few months at the start of next year, and we'll move beyond it. Remain hopeful. That's not just an empty saying. There are so many reasons for hope.
 
Thanks again for being with me during this tough year. I look forward to sharing more with you in 2021.



Friday, December 25, 2020

Wishing You Peace

Today is Christmas, for those of us who celebrate it. 

Like everything else this year, Christmas is different for us. We almost always travel around this time of year, to see either my family or my wife's (sometimes both). Not this year. We're blessed to have all three of our kids at home with us. By the end of next month, all three will be out of the house, back to school, all in different states. So having them here -- safe and healthy, soon to be off again -- is extra special.

We've spent the week watching our favorite Christmas specials and movies, drinking eggnog with rum or bourbon, and enjoying being with each other. We look for small reasons to be happy.

On this day, for the last few years, I've tried to take the opportunity to wish you all Peace. It's a common phrase at Christmas -- "Peace on Earth" -- and I try to wish everyone Peace in their lives, especially "inner peace." With so much happening around us, some "outer peace" is not a bad idea, either. So I wish you both kinds.

There's another Christmas phase that keeps coming to mind these days. It's from the Christmas hymn "O Holy Night," one of my favorites. (And if you're curious, this is my favorite version of it. It was on the first Christmas CD that my wife and I bought after we were married, so many years ago. It brings me lots of nice memories.)

The phrase from the song is "A thrill of hope, the weary world rejoices." 

You don't have to read too far back into this blog to know that "Hope" is one of the most common words that I've written. I write about research into Follicular Lymphoma treatments, mostly because it gives me hope. (And I hope it gives you hope, too.) These days, that "thrill of hope" has come with every bit of good news about Covid vaccines, treatments, and lower incident numbers, as much as it has come from news about new Follicular Lymphoma treatments. 

We are a weary world, aren't we? And even a small bit of hope brings a thrill, doesn't it?

So there are my wishes for you today.

A more peaceful world all around you.

A peaceful world inside you.

Lots of hope for the future, near and far.

And some small breaks from the weariness of it all.

Thanks for reading. Stay well.