Saturday, January 19, 2019

Deciding When To Re-Treat

I'm going to link to an article today -- "Deciding When to Retreat" by Terrilyn McCormick.

I've linked to Terrilyn before. I think she's a really good writer, and she is able to describe the Follicular Lymphoma patient experience really well.

In this piece for Blood-Cancer.com, Terrilyn talk about her decision to start treatment again. She had Rituxan three years ago, and her FL progressed. The doctor said she could hold off for a while, but she chose to try Rituxan again. She explains why. Partly physical and partly emotional.

It's a decision we have all made or will have to make. Even after a successful first round of treatment, there's s chance that the lymphomas will come back, and we'll need to make that decision -- when to treat, how to treat, what to treat with.

As you can see from Terrilyn's article, I'm not sure there's a right or wrong decision here. We discuss it with our doctor and do what's best for us.

I commented on the article that I misread the title at first. I thought "Retreat" meant "turn back" or "run away," like an army retreating. But, of course, she meant it as "treat again."

What's amusing to me is that those two meanings are complete opposites. Terrilyn isn't running away -- it's just the opposite. She's facing the trouble head on. As she says making that decision can be empowering. For a disease that keeps many of us in a kind of in-between state, making the decision to get treatment can make us feel in charge again.

Good luck, Terrilyn. I'm sure the article has inspired some folks.

Tuesday, January 15, 2019

11 Years

Today is the 11th anniversary of my diagnosis with Follicular Lymphoma.

That means it is also the 9th anniversary of my Rituxan treatment.

If you want to know how I spent my day, it was pretty much the way I had planned it. There were a few small differences -- went the gym instead of a walk outside, and two of my kids came to the movie with us -- but it mostly went the way I had planned it.

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I get reflective on this day, as you can imagine. It comes at a good time of the year for reflection. The business of the holidays is over, but a new year has really just begun.

To be honest, I've had a hard time writing my Diagnosiversary piece this year. I usually start reflecting a few weeks before, and a kind of theme comes into my head. I've been trying for a few weeks, thinking about the events of the last year, and I'm feeling a little stuck.

One word keeps coming back to me: Liminality.

It's a good word -- one of those words that you find on a "Learn a Cool New Word Every Day" desk calendar.

It means being in a kind of in-between state. Still part of one thing, but knowing that some other thing is well on its way.

That's where I am now. Feeling like one part of my life is ending, and another is beginning, but I don't quite know what to expect.

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2018 was an eventful year. My father was diagnosed over the summer with lung cancer. He died in October. My mom died almost 5 years ago, from ovarian cancer. So it's been a strange few months, not being able to call them to share a story, or ask for advice, or just chat. I've spent some time at their house, going through some things, collecting some memories.


Going through so much stuff also inspired me to start cleaning out my own attic, so I've been going through even more memories -- finding some of my own stuff from high school and college, and finding a lot of my own kids' stuff, too. There's been a lot of looking backward in the last couple of months.

And then there is the looking ahead. My oldest child will graduate of college at the end of the year. This afternoon, he came back from being abroad for three weeks. My youngest will start college in the fall. My middle child is halfway through his second year of college, six hours away from us. We're going to be "Empty Nesters" soon.

Looking back and looking ahead.

Still part of one thing, but knowing that another thing is coming.

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And then there's the whole Follicular Lymphoma thing.

11 years. That's a new thing, too. When I was diagnosed, the median survival rate for FL was 8 to 10 years. I'm on the "good" side of the median now. But I'm still not sure what comes next. I know that there are lots of FL patients who can go years -- even decades -- without needing treatment. But I also know plenty of FL patients who have needed to be treated more than once, or whose disease got more aggressive, or who transformed. I have always assumed that, at some point, I would need treatment again. How could I not expect that?

Still part of one thing, but knowing that another thing is coming.

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I'm re-reading what I just wrote, and it all sounds kind of negative. I don't mean it to be. 11 years is absolutely something to celebrate, and that's just what I did today.

But then there's that nagging Liminality.

Of course, it's not like it's a new feeling for me. I've been in that "halfway, not knowing" state for 11 years, after all. Two years of watching and waiting. Then treatment (and even then, not knowing for sure if it was working or not). And then 9 years of pushing the worst out of my head and trying my best to live my life. It's a state of mind that I am mostly comfortable with.


I've never been a "Sunshine on My Face" cancer patient. Those are people who get a diagnosis and use it to appreciate life more. Strawberries taste better. The sunshine on your face feels warmer. Every day is a gift.

It's not it's bad to be that way. But it's not me. I'm more of a "Snowplow" cancer patient. Snow is great, for the first few inches. And when it piles on, there's no point in getting upset about it. You put on your gloves and boots, put your head down, and plow through it. There's too much to do to marvel at it, or be pissed off about it.

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I guess that's how I deal with the Liminality, the Uncertainty, the In-between-ness. Not to ignore it, or delight in it. Not to wish for the past. It's to live day by day. If you've been reading for a while, you know I'm an optimist, and Hope is my general position in life.

Living day by day is essentially hopeful. You're assuming that another day is coming tomorrow.

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I'm looking forward to a new year -- my 12th as a Follicular Lymphoma patient, and my 10th since my Rituxan treatment. I don't expect to resolve anything. I'll face some new challenges, personal and professional and medical. I'll try to put my head down and plow through. I'll learn what I can. I'll keep writing.

Thank you all for another year. I love hearing from you in the comments, and in email and Twitter. It's fuel for my plow.

Good health to all of you.
Bob

Thursday, January 10, 2019

Are Biosimilars Safe?

Are biosimilars safe?

When they have been approved by the FDA or another country's regulators, then yes, of course they are.

The Washington Post published a piece yesterday that showed that there are some who are calling the safety of biosimilars into question.

Let's step back a second and remind ourselves of what biosimilars are and why this is important.

A biosimilar is sort of like a generic drug. A generic drug is a copy of an approved drug. The approved drug is kind of broken down to the chemical formula can be copied. The generic version is usually sold for less money -- the original drug is allowed to have exclusive rights to selling the drug for a period of time, which allows the company to make back the money they spent on research and marketing. After that period of time, other companies are allowed to develop their own generic versions.

Like a generic drug, a biosimilar is a copy of something that has been approved already. The difference is, a biologic is not made from a chemical formula. It is made from something living. That makes it more complicated to copy, but it can certainly be done. The FDA has approved 16 biosimilars. The European Medicines Agency has approved 40 of them.

And that approval is important. It means the FDA (or the EMA, or another regulator) has looked at the test data and made sure that the biosimilar does the same job as the original -- it is as effective and as safe.

So why would some people want to question the safety of biosimilars?

Well, like generic drugs, biosimilars can be sold for much less money. (The Washington Post article says they can 10% to 50% cheaper than the originals.) So the makers of the originals have good reason to have patients use the originals and not the copies.

The article does not mention specific people, companies, or organizations that are raising doubts.

So what does this mean for us as Follicular Lymphoma patients?

So far, there is only one biosimilar approved for FL by the FDA. It is a replacement for Rituxan. It was approved a couple of months ago, so I'm not sure how widely it has been used. (I'd be interested in hearing from anyone who has had a Rituxan biosimilar, in the U.S. or elsewhere.)

If a biosimilar is an option, and you've done some research online about it, be careful. If you come across something that questions its safety, even if it's from someone within the cancer industry. The best person to talk to is your doctor.

I assume that everyone reading knows enough at this point to question things that we read online, especially treatments that are not approved. Maybe a friend of a friend allegedly had success with a juice treatment, or someone on a message board went to Mexico and allegedly got cured. But those treatments are not proven and have not been approved. We know better than to put our faith in false promises.

So it's kind of weird that we have to question what people say about treatments that have been approved by the FDA.

But it's a good lesson, I guess. Whatever the treatment is, we should know enough about it to have an informed conversation with our oncologist. We should come out of the conversation with information about its effectiveness, and about its safety. That's what it means to be an empowered patient.



Monday, January 7, 2019

Cause of Death in Follicular Lymphoma

First post of the new year.

I've been sitting on an article for over a month, trying to decide how to comment on it, or if I even wanted to.

But I decided it's probably as good an article about Follicular Lymphoma -- and my approach to being a patient -- as I'm ever going to find. So here goes.

The article was published in The Journal of Clinical Oncology, and it's called "Cause of Death in Follicular Lymphoma in the First Decade of the Rituximab Era: A Pooled Analysis of French and US Cohorts."

Death. Ugh. I don't like to talk about death.

But I think there's some good news (along with the bad news that always comes from talking about death) in this study. That's why it seems fitting -- nothing is ever completely positive or negative when it comes to FL, and I always end up looking at the positive.

The study looked at two groups of patients (734 from France and 920 from the United States), and examined how many of them died within 10 years of diagnosis, and what the causes of death were. They found about an 80% Overall Survival rate for the two groups combined. The causes of death were: Lymphoma (10% of the group), causes related to treatments (3%), other cancers (about 3%), other causes (2%), and unknown causes (3%).

I've rounded those numbers, because if I said "10.3%" instead of "10%" or "2.9%" instead of "3%" then it would all seem much more specific and thus more real and we'd all get hung up on numbers. And I don't want that to happen. Doctors and researchers can carry numbers out to multiple decimal points if they like. We're patients. We have other issues to think about.

(And if you still need to remind yourself about why statistics don't matter, look here.)

The authors of the study take two lessons from all of this: First, it's a problem that so many FL patients die from lymphoma. (This includes transformed FL and EFS24 patients -- those who had immunochemotherapy but whose FL returned within 24 months). Overall Survival has increased, say the authors, but 10% is just too high. In fact, right after the article came out, the talk on Twitter among FL experts was that they needed to do a better job at getting that figure down.

The second takeaway is that the 3.0% treatment-related causes is also too high. These include, for example, infections related to treatment because of a weakened immune system, or heart damage. They call for less toxic treatments that won't do more damage than they are helping with. (I think researchers are working hard on this.)

Now, as a patient, I know my first reaction to seeing this study, and those numbers, and some of the commentary, is to focus on the negative. And that is completely understandable. I remember seeing some survival statistics a couple of weeks after I was diagnosed and getting hit very hard emotionally by them.

But I'm always an optimist, as many of you know, and I see lots of reason for hope in this study. Look beyond the title -- anything with "Death" and "Follicular Lymphoma" so close together is going to put you in a mood to look for the negative. So force yourself to look at the positive:

First, the reaction of the Lymphoma community is great. Experts looked at this study, and their first reaction was not "Hey -- Overall Survival is up. We're doing a pretty good job." No, the reaction was, "Not good enough. we need to try harder." Remember that -- good things are coming. These folks are relentless.

Second, Overall Survival for 10 years is about 80%. Do you know what it was when I was diagnosed in 2008? Well, neither do I. But it was a lot lower than 80% -- low enough to put me into a deep depression for two weeks. OS is getting higher.

I think it's easy to focus on the 20%. Don't forget the 80% -- it's 4 times higher than the "bad" number.

Third, in some ways, this study doesn't tell us much of anything new. People who transform are at higher risk of a lower OS. We knew that. Same with EFS24 patients. We knew that, too. Most of us are fortunate enough to be in the 80%. For those who unfortunately are not, there is greater awareness in the last few years that this population needs to be watched carefully and treated as soon as possible. More needs to be done to help them, but awareness is a good first step.

I'm sure some of you have heard the phrase "Follicular Lymphoma is something that people usually die with, no from." I think that study bears this out -- 90% of people with FL will die of other causes. FL is not a good thing, but it remains treatable and manageable for many of us.

So there you have it -- first post of the new year. It sums up my experience as a Follicular Lymphoma patient pretty well. Good news along with the bad. Hope for the future. And a wish that we all hang on tight, take a deep breath, and try not to be overwhelmed by things that seem bad.

I'm looking forward to a good year. I hope you all are, too.

Monday, December 31, 2018

Some Year-End Thoughts

It's the last day of 2018, and I was hoping to have something really great for you to end the year.

Maybe a look at some Follicular Lymphoma research from this month? I have seen a couple of things out there, but let's just say that they weren't really something I wanted to end the year with. Maybe I'll get to them in a few weeks.

I thought about doing a "best of" column, like I did one year. But honestly, that's a lot of work, and I haven't had the time or energy lately to do it.

So what I think I'm going to do is just unload a few thoughts I've had lately about being an FL patient (you don't really want to hear my thoughts about other parts of life and the world, I'm sure).

  • I'm almost finished with Year 10 as a Follicular Lymphoma patient. I'll celebrate my 11th diagnosiversary in a few weeks. As I've said before, my 10th year was a special one, because when I was diagnosed, the Overall Survival rate was considered to be 8-10 years. So getting to year 11 really means something. The OS is closer to 20 years now, so I look forward to chasing that milestone, too. It's good news for all of us -- FL is still incurable, but we have made great progress in the last 10 years.
  • I have a new oncologist, and I am very happy about that. I like him, which is important. But just as important is that he seems like someone that I will be able to see for many years. That stability matters to me, and probably to lots of cancer patients. There is so much up in the air for us -- knowing that we'll see the same doctor is important. I'm glad I found one that I like.
  • I'm happy to be writing more. Not so much on the blog, but in other places. I love you all, and I won't ever stop writing here. But it's really satisfying to be able to reach some new people, and get a positive response from them. Writing for Blood-Cancer.com and Lymphoma News Today has been great. It's a different kind of writing -- a little more restrictive. The great thing about the blog is that I can write whatever I want. No word count targets or Search engine Optimization issues to worry about. That said, it's nice to hear positive feedback, no matter what the venue or who the reader.
  • I'm excited about Immunotherapy in its many forms. The journal Science named Immunotherapy its "Breakthrough of the Year for 2013." That was a good choice -- it's only gotten more important in the 5 years since then. There have been a bunch of Immunotherapies approved for FL or in trials that seem to be doing well. My new oncologist was excited about a couple of them -- CAR-T and Bispecifics. There are a bunch of others, too, and they all attempt to use the body's own immune system to fight cancer cells. We'll see more of that in the next few years, I'm sure, along with some other non-chemotherapy treatments.
I'm looking forward to the new year. Lots of changes for me. I've experienced some loss over the last year, and that will make things hard. But my youngest child go off to college in a few months (she got into her number 1 choice -- yeah!), and that will bring some new challenges and opportunities to me and my wife.

I've always tried to look to the future with hope. It's just part of my natural disposition, I guess. Some people look to the future, and tell themselves stories about what might happen, and their stories focus on the bad things. When I tell my stories, I always focus on the good things. I am always the hero of my own story.  What's the point of telling it, otherwise?

I hope you all have an excellent 2019. Be sure to stop by -- I'll be here.

Tuesday, December 25, 2018

Peace

As many of you know, today is a day when many people around the world celebrate Christmas. In the last few years, I've been writing on this day to wish everyone peace. "Peace on Earth" is a traditional Christmas saying, and as cancer patients, we could all use some peace.

It's been kind of a rough year for me. My own health was pretty good, but I lost my dad to cancer a couple of months ago. That put a bit of a cloud over things. At the same time, though, I was able to see him a lot. He lived two hours away, and I drove up to spend the day with him  once a week. That helped bring me some peace.

As my 11 year diagnosiversary approaches, I've been thinking a lot about that balance -- there is so much to take away our peace, we need to find ways to achieve some.

For many Follicualr Lymphoma patients, peace comes on the day when they realize that they made it through a day without thinking about cancer. It can be such an all-consuming thing, even for those of us who have an indolent, slow-growing type. And for many, they wake up one day and they can't remember thinking about cancer the day before. It's a beautiful thing.

I don't think I've ever had one of those days. Most mornings, I check in with the online support group that joined almost 11 years ago. At about 9 or 10 in the morning, I get a Google Alert email with links to articles about FL. At some point, I check Twitter, and while many people get fun tweets from the Kardashians or other favorite celebrities, my Twitter feed is filled with stuff from Rock Star oncologists and other cancer advocates. And many days, I'm working on a blog post or an article for Blood-Cancer.com or Lymphoma News Today. I don't think I've had a day in nearly 11 years when I didn't think about cancer at least once.

And, weirdly, for me, that brings peace.

For many people, a day without thinking about cancer is an excellent day. For others, finding a way to push those thoughts away is the goal. For me, it's wrestling those thoughts to the ground and sitting on them and looking them right in the eye. That's the balance. That's the peace.

So wherever you are on your cancer path -- a hardened veteran or newly diagnosed and scared -- I hope you have discovered that things that give you balance, the things that give you peace.