A Third Inhibitor is Withdrawn

Well, this is getting silly now.

The maker of the PI3K inhibitor Parsaclisib has withdrawn its New Drug Application with the FDA. This comes a little more than a week after Idilalisib was withdrawn from the market for Follicular Lymphoma, and about six weeks after Duvelisib was withdrawn.  

Unlike the other two PI3K inhibitors, Parsaclisib was not yet approved by the FDA. It had applied for accelerated approval, but after discussions with the FDA, it decided not to go through with the application. They were not confident that they would be able to meet the requirements. Like the other two, this was called a "business decision." The application would have covered relapsed/refractort Follicular Lymphoma, and MZL and MCL, two other lymphomas.

I haven't seen a whole lot of analysis or commentary about any of these withdrawals. On Twitter this morning, I saw someone comment that there would probably be more of this happening with NHL treatments, as the large number of treatments (especially PI3K treatments) would mean more competition, and so more data to show that this version of the treatment would be better than others -- either more effective or safer. Another commentor said everyone is afraid of bi-specifics.

As I said in my post about Idelalisib, it does seem we've reached a point where we (patients, doctors, the FDA) will need to start focusing on quality over quantity. It's great to have so many options for treatment, but if the differences between those treatments are minimal, then someone is going to win that competition. 

And as good as PI3K inhibitors seem to be (they seem especially popular as a third-line treatment, after two other treatments have failed), the treatments that have gotten the Lymphoma community so excited in the last few years have been R-Squared (Rituxan + Revlimid), CAR-T treatments, and more recently, bi-specifics. What do they al have in common? They are as good as, or better than, traditional chemotherapy. And by "better than," I mean they are either more effective (they work on as many patients as chemo does, for as long) or they are safer (with fewer or less severe side effects).

But really, the biggest thing that the "exciting" treatments has going for them is durability. They have shown that they can work for a long time before a patient needs another treatment. And that matters. 

When I was first diagnosed in 2008, the assumption about Follicular Lymphoma was that patients could expect a lifetime of treatment. The disease would become more aggressive over time, and treatments would need to become more aggressive as well, with less and less time between them. Maybe the first treatment would last 5 years, and then the next 2 years, etc.

That's certainly still the case for some patients. But if newer treatments are also providing durable responses, then we would have less need for a wide range of choices. In other words, there's less need (and maybe desire) for 10 treatments that will each last 2 years when we could have 4 treatments that each last 5 years. Fewer treatments means fewer side effects to deal with, and better quality of life.

At least that's what seems to be happening. Remember, I'm not a doctor or a cancer researcher. Just a Cancer Nerd -- a patient who reads a lot.

Whatever the case, I think we don't need to be worried about treatments being withdrawn from use or from the approval process. There are lots of options still available and lots more being developed. We can afford to be picky (and patient). 

I hope to give you some good news next time.

Bi-Specifics: The Basics

Well, this was one of those tough blogging weeks. I started three different posts, and then abandoned them for different reasons. That happens fairly frequently. Maybe I start a post, and then realize I don't fully understand the science behind it, so I don't want to post it because I might be giving incorrect information. Or maybe I decide that the information isn't as significant for Follicular Lymphoma as I had first thought. It happens. 

It's kind of rare that it happens three times in one week, though. Frustrating.

So I'm giving up on writing something significant for now.

Instead, I'm linking to a piece from Cancer Therapy Advisor called "Development and Clinical Application of CD19xCD3 and CD20xCD3 Bispecific Antibodies." It's an interview with Dr. Andreas Klein from Tufts Medical Center. He discusses the two main types of bi-specifics that are in development. Remember, a bi-specific is a treatment that connects to a protein on the surface of a cancer cell (the way Rituxan does), but also connects to a protein on a T cell, a powerful immune cell. By bringing the immune cell close to the cancer cell, the T cell can work on the cancer cell the way it would work on a virus or bacteria. 

CD19 bi-specifics are currently used on Leukemias, and CD20 bi-specifics are used on Lymphomas, like FL. I found it interesting that Dr. Klein sees bi-specifics as kind of in competition with CAR-T treatments. That makes sense -- the commentaries I saw after ASH this year did seem to try to compare those two types of treatments -- cost, effectiveness, safety. 

It's an interesting interview that gives some nice background on bi-specifics. 

I'll get back to writing soon. Wish me luck.

Idelalisib No Longer Available for Follicular Lymphoma (in the U.S.)

The maker of Idelalisib (also known as Zydelig) has announced that it will no longer offer the treatment in the U.S. for Follicular Lymphoma (and for Small Lymphocytic Leukemia).

According to the press release, the FDA's approval had been based on a phase 2 clinical trial. It was expected that a phase 3 trial (with a larger number of patients) would be conducted, and if the trial showed similar results (a 54% response for FL), then final approval would be given. Partly because of Covid, the company had problems recruiting patients for the trial. They decided that it was better to withdraw the treatment from the market for FL and SLL. 

Idelalisib has also been approved for Chronic Lymphocytic Leukemia (CLL) in the U.S, and it will remain available for patients with CLL. It will also remain available for FL patients in the E.U, the U.K., Canada, Australia, New Zealand, and Switzerland.

I say Covid is "partly" to blame because, from what I could tell, Idelalisib wasn't a very popular treatment. The sales for the first quarter of 2021 (January to March) was about $16 million. That's a lot of money, but not compared to Yescarta, the CAR-T treatment made by the same company, which had 1st quarter sales of $160 million. 

I don't think that's a coincidence. Certain treatments seem more and more to be the future of Follicular Lymphoma, and based on the excitement that I hear when I listen to Lymphoma experts, CAR-T (and lately, bi-specifics) are going to be the choice of doctors, especially for relapsed/refractory FL.

If all of this sounds familiar, it's because just over a month ago, the maker of Duvelisib also announced that it would be pulling its treatment from the U.S. market. Duvelisib and Idelalisib are both PI3K inhibitors. There were 4 available, and now there are two.

I have to say, I'm not entirely surprised. Last June, I wrote a post where I asked, are there too many inhibitors available for FL patients? All four (and another being featured at ASCO) did slightly different things. But it seems like there wasn't going to be room for all of them.

And that seems to be the case. Losing two options like this doesn't mean that they are bad treatments. If anything, it might mean that they are good treatments -- good enough that 5 different companies want to get in on the action. If an oncologist suggests one, either alone or in combination, it's probably still worth having that conversation.

It probably says more about the state of treatments overall for Follicular Lymphoma, rather than any one individual treatment.

I know I always get excited about approvals for new treatments -- or even about applications for new treatments. When one gets approved, I usually say it's "another arrow in our quiver" -- another option for treating our disease. (That's the phrase that the Lymphoma specialist used when I saw him about a week after I was diagnosed. It's stuck with me for 14 years.)

And I'll continue to get excited about new treatments being approved. But maybe we're at a point in Follicular Lymphoma research where the bar is being raised -- where the newer options (R-Squared, CAR-T, bi-specifics) are going to be so good that we'll see fewer new treatments being approved. Instead, we'll see better treatments being approved -- treatments with greater effectiveness, or fewer side effects, than what we have available now. 

If that's the case, then you won't hear me complain. I'll gladly write less if it means we have better options available to us. 

(I'll probably still write just as much.)

Something tells me this is going to be a very interesting year for FL patients. 

14 Years

Today is my 14th Diagnosiversary. I was diagnosed with Follicular Lymphoma on January 15, 2008. 

That means it is also the 12th anniversary of receiving my first round of Rituxan. 

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Every year on this day,  I try to take some time to reflect on the number of the diagnosiversary. For example, my number five diagnosiversary was significant because that's typically the smallest number that Overall Survival is measured in. I figured if I made it to 5 years, that must have meant something important. 

The number 14 is a little different. It has some personal significance. When I was a kid, my favorite baseball player was Jim Rice, left fielder and designated hitter for the Boston Red Sox. He was a great player, voted into the Baseball Hall of Fame. He wore number 14, so I did too, whenever I could. (Fortunately, baseball and hockey uniform numbers for kids sports usually corresponded to sizes, so uniforms with numbers 1 through 4 were size Small, 5 through 8 were Medium, etc. As a larger-than-average child, number 14 was usually a Large or Extra Large, so I got to wear my favorite number pretty frequently.)

So I suppose I should be happy with diagnosiversary number 14 for that reason. It has brought some good memories of my childhood.

In terms of cancer, I'm happy with the number 14 for another reason. Somewhere, long ago, I read about a study that looked at long-term survival of Follicular Lymphoma patients, and it found that none of the patients in the study had transformed after 14 years. If you're unfamiliar with what transformation is (most of you already know, I'm sure), transformation is the process of having fairly slow-growing FL cells turn into faster-growing, more aggressive cells, usually meaning the FL has turned into Diffuse Large B Cell Lymphoma. The cells become something new, and usually more dangerous. 

I wrote about that "14 years and no transformation" statistic in 2012, though I must have also seen it earlier, based on this post from that year. 

So 14 has had that significance for me, too. For a long time, at least 10 years, I've been kind of looking forward to this year, thinking if I could make it this far, it would be another important milestone -- less danger of transformation. 

I've since seen that "no transformation" number go out to 16 years, and I've also seen someone post online saying that she transformed after 14 years. (I don't remember how long it had been since she was diagnosed, but it was more than 14 years.)

So I don't think I'm fully out of danger, as far as transformation goes. But it does feel less and less likely as I go along. That's a little bit comforting.

Still, that idea of "transforming," or changing in lots of different ways, has been rolling through my head for a few weeks now, as I have been aware of my diagnosiversary coming up. It seems like a good topic for reflection on this day.

And just to really emphasize why "transforming" should be the theme of my reflection this year, consider this -- when I started writing about Jim Rice a few days ago, I went to YouTube to find a  video of him hitting home runs. I found one, and as I watched, at about the 1:45 mark in the video, Rice hits a home run off of one of the light towers in Fenway Park. The announcer describes it as "up there with the [electrical] transformers. And he transforms a 4-0 ballgame into a 7-0 ballgame." It's fate. Year 14 is about transformation and change.

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I'm not giving any new information to anyone here when I say that having cancer changes you -- it can transform you from one person into another.

I've thought about this question a lot over the last 14 years -- if cancer changes us, who are we supposed to become?

I think I've written about this before, but there's a line in the song "The Rainbow Connection" that always makes me think about this. (And one of my kids is teaching himself banjo right now, and "Rainbow Connection" is in his play list, so I've been thinking about it even more lately.) The stanza goes like this:

Have you been half-asleep, and have you heard voices?

I've heard them calling my name.

Is this the sweet sound that calls a young sailor?

The voice might be one and the same.

I've heard it it too many times to ignore it.

It's something that I'm supposed to be.

Someday we'll find it, the Rainbow Connection,

The lovers, the dreamers, and me.

I've heard it too many time to ignore it/It's something that I'm supposed to be.

What am I supposed to be?

If cancer changes me, what does it change me into?

That's what I've been asking myself for 14 years.

But asking the question that way gives all of the power to cancer, as if the disease decides who I'm supposed to be after I change.

Maybe, after 14 years,  the better question to ask is, what do you want cancer to change you into?

There is so much in life that we can't control. The Covid pandemic has just made that more and more obvious. But those of us who have been diagnosed with cancer already knew that. We can't control the genes that mutated and caused the cancer. We can't control the treatments that we are given to fight the cancer. We can't control the ways our bodies change, either because of the cancer, or the side effects of the treatments, or the side effects of the things we do to deal with the side effects of treatments. 

But we can become someone different.

We can choose to become someone different. 

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I still don't know who I'm "supposed to be," as the song says. But I think I know who I want to be, and maybe what the world needs me to be.

I like to think, in 14 years, I've become more compassionate. Part of that has been because I was lucky enough to be a part of HealtheVoices, where I got to meet a lot of other online health advocates. I learned so much from them, not just about how to be a better advocate, but about their diseases and conditions -- cancer, HIV, diabetes, IBS, and about 30 others. But it's especially true of mental health issues. I've always been sensitive to the kinds of mental and emotional issues that some with having cancer, especially Follicular Lymphoma. But I've learned even more about the kinds of mental health issues that the rest of the world deals with, too -- anxiety and depression and other conditions that keep people from being who they want to be. I try to be much more sensitive to that, and to remind myself that other people are suffering in ways that I can't see. It's hard sometimes to step back and look at others when we're dealing with so much of our own stuff. But it's so important.

I've come to realize that there are two kinds of people in the world who have gone through some stuff -- and all of us who have been diagnosed with cancer have gone through some stuff. When we encounter someone else who is having a hard time, we can have one of two reactions. First, we can say "I've been through hard times, too. I had to deal with it, so you have to deal with it, too," and basically abandon those people to deal with things on their own. But the second reaction is to say, "I had to deal with something hard, and maybe I'm still dealing with it, but I know how awful it feels, and I don't want anyone else to have to go through what I went through." 

When I can choose who I'm "supposed to be," I want to always remember to choose be that second person. The compassionate one. The one who does what they can -- even if it's something small -- to make someone else's life just a little bit easier., especially if we know how hard it a time they're having because we've been through it ourselves.

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Back to Jim Rice, my boyhood hero who wore number 14 on his uniform.

There's a story about him that I won't ever forget. 

It was in August 1982. There was a 4 year old boy sitting just behind the Red Sox dugout. Someone hit a line drive -- very fast and very hard -- that hit the boy in the face. Jim Rice saw what happened and immediately grabbed the boy and brought him from the stands into the dugout. He was in an ambulance and on his way to the hospital within 3 minutes. He had emergency surgery. He lived and he was OK. The doctors said Jim Rice's quick action probably saved his life, because if he had waited for emergency workers to come and get him, the boy might have had too much damage to his brain.

Jim Rice's first instinct was to help. 

(So was his second instinct -- he visited the boy in the hospital, and asked the hospital to send him all of the bills for the boy's medical expenses.)

That's the change I have chosen, and the one I hope I'm living.

Maybe not so dramatic as Jim Rice's. Maybe not saving someone's life.

Maybe it's just being kind. Maybe it's just being more open to understanding others, especially those that our first instinct tells us to look the other way. Maybe it's just figuring out what someone else needs, and deciding that if it is something that you can give, then giving it.

Just being compassionate. Recognizing pain in the world, in whatever form we see, and knowing exactly how that pain feels. And then doing something to make it go away, even just a little bit, even for a short time.

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I hope you all get the chance to do a little reflecting some time, to think about the ways you have transformed and changed. And to think about the ways you have chosen or can choose to change.

Because, really, that's what this blog is all about. Increasing knowledge and taking control of your life, even in a small way.

And I hope you all get the chance to celebrate 14 years, if you haven't already. It's a nice place to be.

And as always, thanks for reading.

Betalutin Update

The makers of Betalutin provided an update this week on their phase 2 clinical trial called PARADIGME. 

There wasn't much to report, which is I guess kind of the story. 

Some reminders about what Betalutin is:

Betalutin (also known as ¹⁷⁷Lu lilotomab satetraxetan) is a RadioImmunoTherapy (RIT) treatment being developed in Norway. RIT is kind of an exciting treatment, in my opinion. In general, RIT works by bringing radiation directly to lymphoma cells. Radiation can be very effective in treating cancer, though it works a lot better on solid tumors than liquid tumors like those in blood cancers, since blood cancer cells don't stay still. RIT works by attaching a tiny bit of radiation to something like a Rituxan molecule. The Rituxan finds the CD20 protein on the surface of the lymphoma cell, attaches itself to the cell, and then delivers the tiny bit of radiation directly to the cell. In theory, it's a great system -- fewer side effects because the radiation is delivered right to the cancer cells.

There have already been two RIT treatments approved for Follicular Lymphoma, and that approval happened years ago -- Zevalin and Bexxar. I was personally very excited at the idea of Zevalin when I was first diagnosed, because I had heard from a few people who had been given Zevalin and had very long remissions from it (even longer than my now almost 14 years). 

There are still some stories in the news about Zevalin, but no longer about Bexxar -- it was discontinued by the manufacturer because so few people used it. 

And that's the problem with RIT, at least in the United States. Very few people use it, despite it helping so many people. 

The reasons don't have much to do with effectiveness or safety, both of which are very good for Zevalin. Instead, they have more to do with rules for how it gets used. Because it is radioactive, any doctors administering Zevalin have to go through a large amount of training before they can be approved. That means regular oncologists won't be able to give the treatment, though they can refer patients to specialists who can give it. But with few doctors who have had that training, and lots of other options available, most oncologists just try a different treatment that they themselves can give to the patient. There has also been some question about how doctors are reimbursed for the treatment, creating enough of a hassle to just not use it. 

It's really too bad. I think RIT can offer an alternative that could help a lot of people, if it were easier to get to patients.

So the press release about Betalutin pointed out a different problem -- Covid-19 has made it harder to recruit patients into the trial. Like many FL treatments, one of the side effects of RIT is lowered immunity. That's not so good while Covid is around, especially with the new variant. 

The good news is, they have managed to recruit 106 patients, which is great for a phase 2b trial (their goal is 120). And they announced last August that they had made some changes to the trial that had helped it. Last February, they released data that showed good effectiveness and safety, with 65% of Relapsed/Refractory FL patients in the trial having a response, including 30% Complete Response.

So I'm hoping things continue to go well for Betalutin. I have an emotional attachment to RIT, given how excited I was about it many years ago. But I do think, even with a a rational head, RIT is a good approach to dealing with FL, and gives a different way of dealing with the problem. One of the studies that I was excited about many years ago was one that used RIT as a salvage treatment. That is, patients were given R-CHOP and then followed up with Zevalin, which cleaned up any cancer cells that Rituxan and chemo didn't get to. That approach made sense to me then, and still does -- it's the basic idea behind the combination treatments that are so popular these days. Cancer cells find ways to stay alive, so going after them in different ways (chemo + antibodies + radiation; or antibodies + inhibitors; or chemo + CAR-T) may catch those cells that the other treatments missed.  

And maybe some success from a new RIT will inspire change in the way it is administered in the U.S. and allow more people to get it. I don't know what the rules are in Europe and elsewhere, but maybe they are different enough that it would be easier to administer there.

I'm hoping maybe we'll get another update by ASCO. I'm looking forward to hearing more.

Managing Relapsed/Refractory Follicular Lymphoma

As I mentioned in my last post, the journal Haematalogica published a nice piece recently called "Prospects in the Management of Patients with Follicular Lymphoma Beyond First-Line Therapy." It's a nice summary of where we are and where we might be going. (And by "we," I mean those of us who have already had some kind of treatment.)

The article basically goes through the options that are available for patients who have already had a treatment, and whose FL has come back, or whose treatment failed. In the last 10 years or so, we've seen new treatments types become available -- PI3K inhibitors (Idelalisib, Copanlisib, and Umbralisib) , Immunomodulators (Lenalidomide), Epigenetic Therapies (tazemetostat), and CAR-T. Add these to the ones that were already available -- traditional chemotherapy (CHOP, Bendamustine, and CVP), Rituxan, radiation (for some stage 1 and 2 patients), RadioImmunoTherapy, and Stem Cell Transplants -- and you have a pretty good bunch of choices for FL patients.

One of the main points that the authors make is, despite all of these choices, there is still no clear Best Choice for R/R Follicular Lymphoma. It seems like all of our situations are just a little bit different from one another, and with so many choices, and so much incomplete data from clinical trials, it's impossible to handle it any way than to consider each patient's individual situation. and make a choice from the list.

(This is worth mentioning -- the authors say that "the flood of data derived from phase II studies, and the lack of randomized studies comparing treatment strategies" are part of the problem. There are so many new types of treatments that the FDA gives special consideration to many of them, allowing them to be used on patients even though they have only gone through a smaller phase 2 trial. The good thing is that they get to patients sooner; the bad thing is they don't come with the large amount of data that a phase 3 trial would bring. Same with the lack of "randomized studies." Clinical trials can be run in two basic ways -- give a bunch of patients the new treatment, or "randomize" the trial and give half the patients the new treatment and half an old treatment, and compare the two groups directly. Randomized trials are a little harder and more expensive to run, so they aren't used as often. Same deal as relying on phase 2 trials -- less information to use later on. So we have more treatments available to use in the last 10 years, since they got to us faster, but not as much information as we'd have if we'd spent 15 years on them. Nothing is easy with this disease.)

It's probably not worth going through every one of the available options. (I've pretty much been doing that for 14 years.) But there is a really cool-looking image in the article with many of the different treatments going after an FL cell, of you want to take a look.

I think it's more important to think about some of the other points the authors make about treatments for R/R FL patients.

One important point they make has to do with sequencing therapies. (It's important to remember that this is written by Lymphoma experts for other doctors.) For many of us, that first treatment won't be the last treatment, and neither will the second treatment. If that's the case -- we might live a long time, but those years will involve a bunch of treatments -- doctors need to think carefully about how side effects might build on the side effects of treatments that have come before. They might also need to consider things like "location and socioeconomics." Not every treatment is available at every cancer center, and even the expense of traveling for a couple of hours once a week might need to be considered. Not everyone can travel easily, and not everyone can afford to take a day off of work once a week, let alone being able to afford an expensive treatment itself. I like to think that doctors keep those things in mind, but it's good for them to be reminded of factors like that. 

And just as important, an treatment recommendations should "incorporate the patient’s goals." Some of us might be OK with taking a pill every day for a year or two (like with some inhibitors). Others might want to just "get it over with" and do all of the treatment at once (like with RIT). As patients, we have goals for how our lives will be lived. Doctors need to consider those goals. The "best" treatment isn't always the best treatment.

Which is related to the next point that the authors make -- Quality of Life matters, and needs to be preserved. If an FL patient has the potential to live for years with the disease, the treatment shouldn't cause such severe side effects that those many years are difficult. A treatment might offer the possibility of a cure, but with long-term side effects that case nerve damage of make the patients more vulnerable to infection. There needs to be an honest and careful conversation about that before a treatment is decided on.

Finally, the authors look to the future. Even as we have lots of good options available to us, there are still more on the way. (They mention bispecifics as an example.) There are also lots of combinations being studied. Sometimes, two treatments work together in ways that are better than the two individual treatments -- R-Squared is a good example.

The hope is that the newer treatments will mean fewer or less severe side effects, and longer times between treatments. We're learning more about the biology of FL, too -- more potential biomarkers, and more about the pathways that cancer cells take to live and grow. All of that knowledge may lead to better treatments.

There's a lot here to be hopeful about. The treatment options really have changed a lot in a pretty short amount of time -- even in the almost 14 years since I was diagnosed. The article isn't written to us patients in particular, but that lesson is definitely worth learning.

The other lesson here for patients is also important -- with so many options, it's important that we know what they are, and what the implications are for each of them. I don't think we need to know all of the science behind every treatment -- we're not doctors or researchers. But we should know which questions to ask, and we should insist that our doctors take the time to answer them and explain what we need to know. A very good place to start is to think about your goals -- what kind of life you hope to live after the treatment is successful. That's a good place to start, and a good doctor should be able to start a conversation from that point.

I'm looking forward to exploring more of this with you all this year.

A Reminder About Survival Statistics

Happy New Year, everyone! Here's hoping that 2022 is an excellent year for all of us. We deserve a good year.

I wanted to start off the new year by looking at an article the journal Haematologica called "Prospects in the Management of Patients with Follicular Lymphoma Beyond First-Line Therapy." It's one of those articles that I like, where a Lymphoma expert or two will look at "where we are" in terms of treatment. I thought that would be a nice way to start the year. 

And I may still do that for the next post. However, the first sentence of the article's Introduction made me smile:

"While the median overall survival (OS) of patients with follicular lymphoma (FL) was under 10 years over two decades ago, the vast majority (~80%) of patients diagnosed today are likely to be alive 10 years after their initial diagnosis, and their expected median OS may exceed 20 years."

This seems like a good excuse to write a reminder to everyone about just what Median Overall Survival means, and why it's important. And if you're new to Follicular Lymphoma and/or the blog, it's good for you to understand what Median OS is, and whether you're understanding it in the hopeful ways you should. 

I was diagnosed in January 2008, and I remember reading then that the median overall survival for FL was 8-10 years. A family member probably read the same easy-to-find source, and wrote to tell me how worried he was when reading that. I was worried, too. I was 40 years old with three kids (the oldest was 10) and I wanted to see them grow up. And now I find out that I'll die at 50. The day I read that was not a good day.

Of course, both my family member and I were reading that statistic wrong. It's a much more complex (and more hopeful) statistic than that. Keep reminding yourself of this phrase: Statistics are not destiny.

It's important to understand the two parts of "Median Overall Survival." The first is the word "median." In statistics, the median is the exact middle of a group of data points. In other words, suppose we wanted to find out how long Follicular Lymphoma patients lived after they were diagnosed. (Which is exactly what we want to find out here.) We could look back at the records of 1001 FL patients and find that information. Then we line up all of those numbers side by side, from the smallest number (position number 1, maybe 6 months) to the largest (position number 1001, maybe 50 years). That's 1001 numbers. Now we look at the number that in the exact middle, whatever the number of months or years is -- the number in position 501. That's the median, the exact middle. There are 500 numbers before it in our list, and 500 after it. 

That's different from the "average" or "mean."

Now look at what the authors of the article are saying -- "The expected Median Overall Survival may exceed 20 years."

That means that half of FL patients will die less than 20 years after they are diagnosed. BUT it also means half will live longer than 20 years. 

Here's why that's especially important: The median age for FL diagnosis is 65. There's that word "median" again. That means half of FL patients are diagnosed when they are younger than 65. And half when they are older than 65. 

Put those statistics together. Someone diagnosed at 65 has a 50/50 chance of living for more than 20 years. (And remember, too, that the "less than 20 years" could be 6 months, but could also be 10, 15, or 19 years.) Someone diagnosed at age 65, then living 20 years, will have roughly the same survival rate as the general population. 

I find great comfort in that. There's no guarantee, of course, that any of us will live to any particular age, but it also means that there's no guarantee that we'll die sooner than we'd like, either.

Two more important things to consider. The second half of that phrase, the "Overall Survival" part, means that the statistic is looking at when people die. It doesn't matter what they die of. It could be of Lymphoma, or a secondary cancer, or complications from treatment. But it could also be from a heart attack, or a car accident, or eating a bad banana. That's what they mean by overall survival. There is a statistic used to measure death from the actual disease, but it's rarely used because Overall Survival is much easier to measure. 

I find that comforting, too. You might have heard or read someone say that many FL patients will die with the disease, not from the disease. That's what the "Overall Survival" statistic is getting at. For many patients, they will be diagnosed at 65, live 20 years (a "normal" lifespan), and die from some other cause. 

One final important thing to note -- this isn't the first study to say our Median OS is around 20 years, and they usually hedge a little by saying "around 20 years" or, in this case, "may exceed 20 years." They never give an exact figure. And there's a good reason why -- no one knows, and for a very positive reason. Not enough people have died yet to measure it.

If we need 1001 people to die before we can measure median OS, and only 800 of them have died, then we can't measure the median yet. We can guess that's it's about 20 years, but it may be higher. And given the trend since the last time they measured, it might very well be higher. Treatments are better then they were in the past, and they continue to get better. (That's the actual point of the article above.)

So here's the lesson from all of this. Being diagnosed with Follicular Lymphoma is awful. Treatments, even the least aggressive ones, are also awful. Watching and waiting, whether it's for the first treatment or between treatments, is still awful. 

But if the goal is survival -- staying alive for as long as possible -- we're all in a much better place today than FL patients were 20 years ago, and we're likely to be in an even better place as time goes on.

Statistics are not destiny. You can't look at a bunch of numbers that say something about a bunch of random people from the past, and expect to learn something about yourself in the present. They just don't work that way.

But that doesn't mean we won't al look at statistics and wonder what they say about it. Numbers seem so definite and sure. 

When I've been depressed about my diagnosis, statistics were somehow part of the cause. If that's the case with you, then you have two options. First, stop looking at them. Or second, remind yourself of what the numbers really mean, and that statistics aren't destiny. Your life is your own. May it be a long, happy one.

I'm looking forward to 2022.

I hope you are, too.