13 Years

Today is my diagnosiversary.

13 years ago today, I was diagnosed with Follicular Lymphoma. 11 years ago today, after two years of watching and waiting, I had my first Rituxan treatment. 

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13 is considered an "unlucky" number by many. I can't say it's been entirely unlucky for me. As hard as the last year has been in so many ways, I know I'm lucky to be here. I'm lucky to have a form of Follicular Lymphoma that has grown slowly, responded well to treatment, and stayed stable since then. As much as I'd like to say I have stayed healthy for so long because of things that I did, of steps that I have taken to actively push my cancer away, I know that's probably not true. 

I've gotten plenty of advice over the years from people who tell me what to eat and how to behave in ways that will "cure" me, but I haven't seen any evidence that those things will help (as much as I would like there to be). I'm pretty good about eating my fruits and vegetables and getting up and moving, but my cancer cells are going to do what they're going to do. They just aren't good listeners.

That's just the nature of Follicular Lymphoma. It can "wax and wane" -- go for months or years without growing. And it might even shrink, on it's own. It's easy to think that whatever we did during that time was the cause of that good behavior from cancer cells. And that's OK, as long as we don't let that thinking keep us from doing things that are proven to help, like conventional treatments. Eating more broccoli won't help a cancer that has turned aggressive.

Let me be clear -- I'm not saying we don't have any control over anything. I don't believe that, either.

As my 13th diagnosiversary has been approaching, and I've been thinking more and more about "luck" and the role its played in my life as a cancer patient, a quote keeps coming back to me. It was from a book about athletes that I read (and re-read over and over) when I was a kid. One of the chapters was about the baseball player Ty Cobb, a great baseball player and a less than perfect human being. Someone accused him of being lucky, and he said "I make my own luck." 

There are lots of other quotes about luck out there that say something similar -- luck isn't about chance, but about being prepared for a situation so you can take advantage of circumstances. (I'll stick with baseball for another example -- "Luck is the residue of design," said Branch Rickey, probably a better role model for a young boy reading books about baseball.)

So eating vegetables and exercising probably aren't going to cure my cancer. But they will help keep me strong, if and when I do need treatment. And learning all I can about Follicular Lymphoma -- its biology and its treatments -- will help me work with my doctor to make good decisions when I need to. 

And, of course, doing all of those things helps me feel in control. Even if eating an apple every day won't keep the cancer away, it helps my mental health. At a time when many of us are feeling even less in control than we normally would be, even as cancer patients, it's an enormous help to know I am doing what I can to understand what is happening with my body now and where it might go in the future. There are so many things I can't control, but so many that I can. 

I can make my own luck. I can narrow the path that I walk on.

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A few weeks ago, my wife and I were doing some cleaning, and we make a really remarkable find -- the folder I had kept with notes and materials from my first few months of oncologist appointments. 

There are some typed notes, lists of questions for my first oncologist Dr. R, and then for the Lymphoma specialist I saw a few days later, Dr. C. Reading the notes brings back a lot of memories, good and bad. I can almost feel all of the up and down emotions from those few few weeks and months after diagnosis. 

(For those of you who are just starting all of this, I'm so sorry for you -- all of that unknown future, all of that focus on tests and results and figuring out what they all mean, all of those decisions about treatment options. It all sucks. A little part of that is always with us, buried, even after 13 years. But seeing it all again in my notes and in the questions I was asking brings it all up to the surface. I can only say I hope your questions are being answered and you're getting the support you need. If I can help, let me know.)

One piece of paper especially brought back memories. It was from one of my first appointments with Dr. R, after the diagnostic tests were done, and we finally had a picture of where we were. It's a plain piece of thin paper, with torn edges. I recognized it immediately. At that appointment, I didn't bring paper, or maybe my wife was using the notebook we had brought to take notes. So as Dr. R spoke, I took notes on the only paper I had available -- that "sanitary" paper that they put on the exam table, and then throw away and replace for each new patient. As Dr. R spoke, I sat on the table, spread my legs apart, and wrote furiously on the exposed paper. When the appointment was over, I tore it off and brought it home.  

The notes are all over the place, written wherever I could find blank space, shifting my legs to give me more empty space to write on. They are "all over the place," too, in terms of what I was writing, shifting from very hopeful to very pessimistic, but ending with hopeful (which isn't surprising). I remember coming home feeling better about my situation, having a slightly better understanding of what I was dealing with. It was a good feeling that would disappear a few days later after I talked to the specialist, Dr. C. (When he made the referral, Dr. R had warned me that Dr. C would be very straightforward. He was, and it put me into a very dark place for a couple of weeks.)

Another piece of paper that we found was a list of questions for Dr. C, and the first one was especially interesting --

"I am watching and waiting. What exactly am I waiting for?"

It's a question that can be read two ways, and it was written so long ago that I don't remember which one I meant.

"What are we waiting for?" can mean "Which changes in my body should we be looking for that will signal it is time for treatment?" That's a pretty standard question for people who are watching and waiting.

But "What are waiting for?" can also mean "Why are we waiting?" as in, "Why aren't we treating right away?" That's also a pretty standard question for someone on W and W, and certainly one I was asking myself in those early days. I remember thinking the idea of not treating was ridiculous the first time I read about it. I couldn't wrap my brain around it. I think a lot of newly diagnosed folks feel that way. I eventually came around to understanding the watch-and-wait approach and accepting it. (And I'm glad I did it.)

But those two ways of asking the question -- what changes am I looking for, and why am I even waiting in the first place -- kind of represent the two sides of a patient after a diagnosis. There's the physical stuff, the symptoms that need to be watched for. And then there's the big questions about goals for treatment, and how to handle the uncertainty of it all -- the mental and emotional parts of being a cancer patient. 

I've said it a lot on the past, and I still believe it -- for many of us, Follicular Lymphoma is as much an emotional disease as it is a physical one. With an indolent, slow-growing cancer, we often go months or even years without physical symptoms. But that doesn't mean we don't have the emotional symptoms that come with it all -- the fear, the worry, the guilt. What are we waiting for? Is that bump on my arm a mosquito bite or a swelling lymph node? Why am I worrying about this? Why not just get treatment? Should I call the doctor? Am I being paranoid? Why aren't there easier answers to all of this?

Both of those things matter -- the physical symptoms and the emotional symptoms. They mattered 13 years ago, and they still matter today.

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That question, "What are we waiting for?" has one more meaning to me.

I'm going to go back to sports for this one.

That question comes up a lot in sports movies. Usually about two-thirds of the way through the film. The team or the athlete has already shown how awful they are. There's no way they're going to win. And then something happens. Some breakthrough. Something that brings the team together, or that inspires the athlete with a spark of hope. There is a sudden realization that they might actually have a chance. They just need to come together, to work harder, and they can do it! And somebody says,

"Well, what are waiting for?!"

And then there's a cool training montage, of that group of awful athletes working together to learn how to win, or the single athlete digging deeper and finding the strength and will to make the impossible happen.

It's usually both really goofy, and really inspiring.

[And while I'm thinking about lots of sports movies that have this scenario (there are dozens), the one that keeps coming to mind is Rocky II. 

I love all of the Rocky movies, though Rocky 2 is my least favorite of them all. But that's what's in my head. And bonus -- in a later movie, an aging Rocky goes on to be diagnosed with an aggressive Non-Hodgkin's Lymphoma.]

And it's this third meaning of "What are we waiting for?" that I think we all need to keep in mind. 

There is so much beyond our control. So many things that we can't do.

But that doesn't mean we are helpless. It doesn't mean there is nothing that we can do.

We can take care of ourselves, physically. We can eat well, and exercise in whatever form works for us, and stay away from others who are sick.

We can learn all we can about our disease. We can know enough to ask the right questions and understand the answers and ask more questions if we don't like the answers we get. We can be active members of our care team, not just passive recipients of what others decide.

We can support each other. We can answer questions and give encouragement and share our story with people who need to hear it.

And if I've learned anything in 13 years, that's it . When someone asks "Well, what are we waiting for?" the answer should be "I'm not waiting for anything. I can start today, right now, to take control of the things I can control. I can make my own luck."

And that's true if you were diagnosed last week, or 13 years ago. It's never too late to get started.

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As always, thanks for reading. It has been a privilege to share my story with you. Thanks for being here with me.

FDA Approves Lymphoma Treatment for Dogs

The FDA gave conditional approval for the first oral tablet to treat Lymphoma in dogs.

The treatment is called Laverdia-CA1, also known as Verdinexor. The treatment blocks some proteins from leaving a cancer cell, making it difficult for the cell to reproduce. 

In case you're wondering, Verdinexor has been tested for humans, too -- I found studies for Influenza and Lymphoma. But it doesn't look like they've been very successful.

But, really, this post isn't about treatments for humans, anyway. I wrote it mostly because I've been thinking about my dog a lot lately. She didn't have Lymphoma, but this gives me an excuse to post some pictures of her.

She was always very good about putting up with my nonsense. I miss her.

Stay well.

 

Concerns about Bispecifics

OK, that didn't last long.

I'm not talking about the whole "2021 is going to be so much better than 2020!" (and that's all I'll say about that).

Clinical trials for Odronextamab have been paused for safety reasons.

Odrenextamab is a bispecific that I wrote about just a few weeks ago. Here's what I said:

"Bispecifics have the potential to be even greater than monoclonal antibodies like Rituxan (also known as MabThera) or Obinutuzumab (also known as Gazyva). Lymphoma experts are excited about that potential, and they had lots to say about some of the presentations at ASH. The first was Odronextamab, which has been going by the name REGN1979. I wrote about this last year. REGN1979 is one of those bispecifics that attaches to the cancer cell (through CD20) and to an immune cell (through the protein CD3). The ASH presentation that is getting people excited is called "Odronextamab (REGN1979), a Human CD20 x CD3 Bispecific Antibody, Induces Durable, Complete Responses in Patients with Highly Refractory B-Cell Non-Hodgkin Lymphoma, Including Patients Refractory to CAR T Therapy." 

I won't give any more background about bispecifics (you can go to the link on your own). But here's the problem (which was announced a couple of weeks after the ASH presentation) -- some patients are having issues with Cytokine Release Syndrome (CRS), a potentially deadly side effect. 

CRS can occur with some immunotherapy treatments (it's fairly common in CAR-T). When the immune system has a sudden rush of white blood cells attacking an invader (or a cancer cell that they have been told is an invader), the cells can send out signals (cytokines) that cause more white blood cells to be released. White blood cells are usually good things, since they fight off invaders. But too many, especially all at once, can cause many problems. Some of them are mild, and some are very serious. Enough patients in the Odronextamab trial had more serious versions of CRS that they put a pause on it.

The company developing and testing the bispecific is pausing the trial, not cancelling it, meaning they are not enrolling any new patients. The FDA has requested that trial protocols (basically, the procedures that need to be followed) be changed to account for the CRS.

The important thing to remember is that CRS, while serious, is also fairly common. One of the problems with early CAR-T trials was CRS, in some cases very serious CRS, resulting in death. (Technically, it was a Cytokine Storm, which happens immediately after a treatment, while CRS is usually what they call a similar reaction that happens over time). Researchers made it a priority to look for signs of CRS so they could be dealt with immediately. 

Just my guess (and this is a good time to remind you that I'm not a doctor or a cancer researcher, just someone who reads a lot) -- the trial will be paused for a while but will probably go on with some changes to manage patient safety. 

It's a also a good time to remind you that all treatments have safety issues -- nothing is without side effects. That's why clinical trials exist. They help determine how effective a treatment is, but also how safe it is, and approval only happens when the side effects are determined to be worth the cost, given the effectiveness. I know I sometimes get caught up in the numbers, and focus on things like Response Rates. I have to remind myself to pay attention to safety, and to make sure I'm making that clear to you, too.

We're getting into a little bit of a doldrums period now, where there isn't as much research news to share for a month or so. But I'll keep looking. 

On the other hand, there's a special day coming up soon, so keep an eye out for that....

2021: And So It begins

So here we are. 2021.

I know lots of people are hoping that turning the calendar will mean a whole new world. I sure hope so -- at least a little bit new, if not "whole" new. I have a few fairly big changes coming up. My oldest, who had been living with us since the pandemic started, left this morning to move to another state, about 6 hours away. We'll miss him. My other two kids will be going back to school in a few weeks. More things to worry about.

On the other hand, lots of things will stay the same. And that's OK, too. There are good things happening in my life, even if there are lots of bad things happening around me too. I hope that's true for you, too. 

So as I was trying to decide what to write about for my first post of 2021, I thought about the mood that I should go for.

Something big and exciting, since it's the new year, and we should start off with some excitement?

Maybe something dark, to capture the overall mood these days?

No, I'm going with a small bit of god news -- the FDA's approval of Riabni, a Rituxan biosimilar. 

A quick lesson in what a biosimilar is:

Some cancer treatments are chemicals. They are made from non-living things. Other are biologicals. They are made from living things.

Chemical treatments are relatively easy to create. The chemistry provides a kind of recipe. Add the right ingredients in the right way, and you get the treatment. It's fairly easy to copy.

Biologicals are harder to copy, since they are made with living parts. A lot more can go wrong. I like to think of it this way -- a chemical treatment is like making a cake, where you go to the store and buy the eggs and flour and other ingredients. You follow the recipe and you have a cake. 

But a biological is different. Same recipe to follow, but imaging you have to grow the wheat for the flour, and raise the chickens for the eggs. Still possible to bake the cake, but with those living ingredients, there is a lot more chance for things to go wrong.

Rituxan is biological -- it's made using mice. There's a long process that goes into it, but it's basically trying to mimic a part of the immune system, so it needs some living parts.

A biosimilar is to a biological treatment what a generic is to a chemical drug. It's a copy of the original -- as safe and effective (if it is approved by something like the FDA, which makes sure this is the case), but hopefully less expensive, since the company who makes it didn't need to put millions and millions of dollars into researching and development and marketing. (Riabni will cost about 23% less than Rituxan.)

So there you have it --  my first post of 2021. Nothing ground-breaking or earth-shattering. And nothing dire and sad. 

Just a small victory for some Follicular Lymphoma patients, who may be able to pay a little bit less for their treatment. 

I'll take that -- small victories for all of us. Moving forward, even if it's in tiny steps. Living a life that's just a little bit better than it was before.

I look forward to celebrating more small victories with you all this year.

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.

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.