"Cancer Songs" Follow Up

In my last post, I talked about Cancer Songs, and shared one of my favorites. I think music is really important to many of us. It can inspire us, help us move forward, and affect our emotions in positive ways.

A few days ago, I came across an article that adds another reason for thinking about the benefits of music for cancer patients.

The article is called "Thunderstruck": Plasma-Polymer-Coated Porous Silicon Microparticles as a Controlled Drug Delivery System." It was published in 2016 in the American Chemical Society Applied Materials and Interfaces.

Now, oncology research is barely my thing (I'm not a doctor or researcher), so applied materials research is kind of out there for me. But here's what I'm getting:

Researchers tried to coat a chemotherapy drug (Camptothecin, used in colon cancer treatments) with biodegradable porous silicone microparticles. the idea was that by coating the chemo particles, they would break down more slowly, making them available in the body for a longer time, so they would be able to kill more cancer cells. (Kind of like how some "slow release" pain killers have a coating on them to they break down more slowly and give you pain relief for a longer time).

The problem was, the method they used to coat the chemo particles was only coating half of them.

So they played music. Specifically, they played AC/DC's "Thunderstruck." The distortion from the guitar amps, or the heavy drum beats, or the lead simnger's voice -- something made the particles vibrate and jump around enough to coat them more completely. They found the better-coated chemo particles resulted in a "significant" time delay in cell death. The chemo did its job over a longer time.

First of all, I love that the researchers called their article "Thunderstruck." Good for them for having some fun.

Second, when I was a much younger person, I listened to more AC/DC than I could measure. Maybe I shouldn't have stopped? Something else to blame my cancer on -- a distinct lack of Brian Johnson and Angus Young in my life. All I have to show for it is some hearing loss.

Of course, that's not what they were claiming here. This was an in vitro study -- all of it measured in a test tube, not a real person. And even then, it wasn't the music that was being tested directly.

So for now, listening to any particular music won't kill your cancer cells.

But it can bring back some nice memories.

Cancer Songs

This week, Radiant Racheli posted a video called "Songs That Got Me Through Cancer." She mentions some good, inspiring songs.

I am very much in favor of a good Cancer Song (or a whole playlist of them). Music has played an important role in my life for a long time. I have songs that pump me yup and inspire me, songs that just make me happy, songs that get me thinking. My kids are all musicians (and I wish I could say the same about myself). If you way back into the archives of the blog, you'll find lots of videos of my kids playing, and maybe even a pic of me with my guitar.

I abandoned the guitar long ago, unfortunately, but music is still very important to me.

Last April, I attended the HealthEVoices conference with a bunch of other online health advocates. One of the exercises we did was to get into groups and create an album or CD of inspiring songs. We made playlists and designed a CD cover. It was interesting to see how much overlap there was. The advocates represented so many different illnesses and conditions, but there were still songs that inspired many -- like Rachel Platten's "Fight Song" (a favorite of Radiant Racheli's). Some of the older folks chose Gloria Gaynor's "I Will Survive."

I'm sure you can see a theme. We pick songs that pump us up and remind us to keep moving forward.

(Though, for the record, I am a big fan of sad songs. I don't enjoy being sad. But For me, personally, sometimes I enjoy feeling that deep emotion every now and then. And I really admire musicians who can move me to tears with words and sounds. I'm a softy that way. If you're a Hamilton fan, you can imagine what a song like "Quiet Uptown" does to me.)

But for an inspirational, moving-forward song? My choice is "Swim" by the band Jack's Mannequin.

Their lead singer, Andrew McMahon was diagnosed with Acute Lymphoblastic Leukemia just before the band's debut album was released in 2005. He eventually received a stem cell transplant and has been in remission since.

He wrote "Swim" after his experience. It's about moving forward, even in difficult times.


I love this song. The opening lyrics:

"You've gotta swim, swim for your life
Swim for the music that saves you
When you're not so sure you'll survive."

I think that "music that saves you" is probably for himself -- creating music gave him something to hang on to and stay inspired.

But I love that line because so many of us use music in this way, too -- as a source of inspiration -- even if we didn't write it ourselves.

I hope you all have your own Cancer Song. And if not a song, then a quote or a phrase -- something that keeps you moving forward.

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.

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

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.

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.