Not Knowing

Wow. My last post, where I commented on a letter to the editor, got a few more comments, and a whole lot more page views, than I normally get. Many thanks to Anjou and Karl from Lymphomation.org for sharing the link.

One of the things I commented on in the post was the letter writer's saying that someone at Dana Farber in Boston said the letter writer's Follicular Lymphoma was probably caused by "pollutants in the air," and I wrote that it seemed like a strange thing for someone from Dana Farber to say, since we really don't have hard evidence that air pollutants are a cause. However, someone commented on the post, saying that he or she also was told by Dana Farber that FL was caused by air pollutants or pesticides.

I've been thinking about that for two days, and I feel the need to comment. (Not just because it seems like I was wrong, and I hate being wrong, as my wife and kids will be happy to tell you.)

I don't doubt that these two patients were told that pesticides or air pollutants were the cause of their Follicular Lymphoma. I also don't doubt that they might be one of many causes of Follicular Lymphoma. But it still seems strange to me that the doctor would put that out there as the cause.

I haven't looked up the studies that I remember about pesticides being a cause of Follicular Lymphoma. I think they were from a while ago. From what I can remember, researchers looked specifically at farmers, or people who would have handled or been around pesticides a lot. And they might have also extrapolated from that, and figured that homeowners sometimes use even more pesticides than farmers, and so some percentage of Follicular Lymphoma is likely to come from pesticide use.

From what I can remember, the number certainly wasn't all Follicular Lymphoma patients, or even a majority of them. So it seems strange to me for a doctor to say that was the cause. And if it was stated as "pollutants in the air," without any other explanation, then that seems borderline irresponsible. Something that vague doesn't answer the question of "why?" and might even just cause more panic.

So why am I so annoyed by this?

I mentioned it briefly in my last post, and I've written about it before, but I'm going to give a longer explanation here, if only so I can stop thinking about it.

First of all, let me say that I am no fan of pesticides, and I'm all for reducing their use. If you have read the blog during the last few Septembers, then you've heard about my prize-winning vegetable garden. And that garden is absolutely chemical-free. No artificial pesticides, just companion planting, beneficial insects, and the occasional shot of hot pepper wax.

So I have to think my Follicular Lymphoma was not caused by excessive pesticide use. Would I like to know for sure what did cause it? Maybe -- but only if I could be sure. And I don't think that's possible.

You might remember way back in January, there were a lot of stories online about a study that found that most cancers are probably caused by random genetic mutations, rather than things like lifestyle habits. That didn't sit well with a lot of people. They would rather be able to name the thing that caused their cancer, not just bad luck.

I think that's probably even more true for Follicular Lymphoma patients, especially those of us with an indolent variety. We sit and watch and wait and wonder, never really knowing what's going to happen next, or when, or where, or how badly. There's a whole lot of Not Knowing involved. It's stressful, in a different way, I think, than other cancers are stressful. We look and feel healthy, but there's this time bomb that might go off at any time. Or maybe it won't. It's a chronic emotional disease as much as it is a chronic physical one.

So wouldn't it be nice to be able to answer one question? If not what, and when, and where, and how, then maybe why? Can you give me that, at least? Can you tell me how I got this damn disease?

Here's why I don't think it's worth asking, or answering: Because we don't know for sure, and probably can't know for sure, and there's nothing good that can come from a partial answer.

I've said it before -- as cancer patients, we have enough negative emotions to deal with. There's sadness, anger, and uncertainty, and more. If we get an answer that might true -- "It was pesticides" -- then what do we end up with? Maybe someone who spent a lifetime working in landscaping, taking care of his family, and now he has to add guilt to the list?

And that assumes that pesticides really were the cause. There's a good chance, even for the farmer, or the landscaper, or the homeowner with the really big tomatoes, that it was just bad luck.

So, for that question, I say it's better to just not know. Better to keep the focus on the present and the future, staying healthy now and learning what we can about out disease.

Because Hope can't come from look backward and dwelling on the things we can't change and the things we can't know.

Understanding Our Cancer

I came across a letter online today that had been written to the editor of a newspaper. I'm not going to mention the newspaper, the letter writer, or some other key details, because they don't matter. What does matter is the way the letter writer wrote about follicular lymphoma, which was not good. You don't have to read too much of this blog to know that I think it's important to stay informed, and to be accurate about the information we make public.

The letter was, in the end, not about cancer, but rather about a candidate who wants to be president of the United States. This candidate listened to the letter writer's story about cancer, which the letter writer appreciated. I'm not going to mention the candidate's name.

Here's how the letter begins:

When I was first diagnosed with lymphoma cancer in August of 2014, I was shocked and afraid. I didn’t want to believe it. I started treatment with the Dana Farber Cancer Institute in Boston that November, and they determined that surgery was necessary to find out just what type of cancer it was.

So far, so good. I'm pleased that the writer found Dana Farber, one of the top cancer hospitals in the country, and the folks who will receive money for research from next weekend's Pan Mass Challenge. I think the phrase "surgery was necessary to find out just what type of cancer it was" probably means a biopsy. I know I had to have a node removed in outpatient surgery to figure out what was going on with me.

The letter continues:

When the report came back, they found out that I had follicular lymphoma, a rare disease they believe to be caused by pollutants in the air.

 OK, here's where I start to have a problem. First of all, I'm not sure I'd call follicular lymphoma "rare," given how many people are diagnosed with it each year (30-40,000 in the United States alone, the second most common type of NHL). The last part of that sentence is what really bothers me, though: "they believe to be caused by pollutants in the air."

Really? I have to say that I have never seen anyone, anywhere say say for sure what causes Follicular Lymphoma -- and I can't believe doctors at Dana Farber would throw that one out there. Now, I have seen a bunch of speculation about what the cause might be, and there was a study that said maybe some people who worked with certain chemicals or pesticides might have had a higher incidence. But nothing definitive.

I have two problems with the "pollutants in the air" statement.

First, it seems like something like that could cause widespread panic -- you can't even go outside and breathe without getting cancer. Second, though, for people who already have FL, it just causes unnecessary worrying and potential guilt. When did I breathe bad air? Should I move away from where I live? If I stay, am I dooming my family to cancer, too? The fact is, we don't know what causes Follicular Lymphoma. As a patient myself, I completely understand those "How did I get it?" questions. But at some point, when there are no answers, it doesn't make sense to ask anymore. It doesn't lead to anything good.

The letter goes on:

The only known treatment uses the body’s genetic code to fight the cancerous cells, but the method has been waiting for FDA approval for over three years. When approved, these types of treatments will help millions of Americans suffering from cancer without the need for chemotherapy and radiation.

OK, this is just silly. "The only known treatment" is one that isn't available yet? I don't think I need to spend too much time on this statement (even though it's the worst of the bunch). You all know that there are lots of treatments available to us. There are some in the pipeline that do "use the body's genetic code" -- mapping the human genome has been a wonder in helping us understand the way cancer works. Not sure which of these the letter writer is talking about, but apparently it has been "waiting for FDA approval for over three years."

And there's another problem. There's a kind of criticism here of the FDA that I think is unfair. It's their job to make sure a treatment is worthwhile before it gets approved -- that it will improve on other treatments that do the same thing, or that it will do something new, or that it will have fewer side effects, or that it will be cheaper. As much as I would love for treatments to move along more quickly, I also recognize that they need to be proven first.

And, of course, the FDA has found ways in the last few years to speed up approval of certain treatments, if early trial results show the treatment works and is safe.

The letter then goes on to describe the writer's encounter with the particular presidential candidate, and how the candidate listened, and would fight for cancer patients.

I would be thrilled to hear all of the presidential candidates (and my goodness, there are a lot of them) say that they will fight for cancer patients, by supporting the FDA in its accelerated approval process and increasing funding for cancer research. I look forward to all kinds of statements from them on that front.

I'm not sure what to make of this letter writer. Maybe just misinformed? Maybe just hearing what he wants to hear (that FL is rare, that maybe some exposure to a chemical was one possible cause, that there is a great potential treatment out there that is still in the approval process) and took all of those possibilities as fact. Or maybe the letter writer presented Follicular Lymphoma in a way that made it scarier, to make his preferred presidential candidate look better for being a good listener?

I don't know.

But I do believe that any time we describe out cancer, we need to be accurate, especially if that description appears online. Too many people are looking for answers online, and stumbling across bad information just makes a difficult situation even worse.

The lesson for readers is this -- be aware of the source of information that you come across. If something seems to good to be true, or so bad that it keeps you up at night, then verify it (as you know, I always recommend Lymphomation.org as an excellent first stop if you have questions). I know of people who don't want to know anything about their cancer, just trusting whatever the doctor recommends, and that's fine -- we all handle this the way that makes sense to us. And others (me included) want to know everything they can. And that's great, too. But what's bad is being in the middle -- sort of knowing, and not really being sure what's true.

The Pan Mass Challenge

This year, once again, my brother Mike is riding his bike to raise money for cancer research, through the Pan-Mass Challenge. The PMC has been going on for 35 years, and has raised over $350 million for research at Dana-Farber in Boston. In his years of riding, Mike has raised almost $50,000 for cancer research. He's very close to that total. Maybe you can help him get there?

Below is Mike's fundraising letter, with a link to his online fundraising page. Please consider visiting and making a contribution. It helps all of us.

I'm extremely proud of my brother for all the hard work he has put in to this ride over the years, and grateful for all he has done for us.

Thanks for considering a donation.

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Dear Friends and Family:

This year on August  1st, I will ride for  my 8th  year in the Pan Mass Challenge to raise research funds for the Dana Farber Cancer Institute in Boston. 

As many of you may know from sponsoring me in the past, this cause is especially personal to me as I have had several immediate family members and close friends that have been diagnosed and treated successfully for many different types of cancers.  This year, I'm  riding in support of my brother, and several other close friends and colleagues that are in various stages of cancer treatment.  All are either patients at the DFCI, or beneficiaries of their ongoing research. 

Since 1980, the PMC has raised over  $350 million for cancer research and treatment at Dana-Farber. The majority of this impressive total is considered unrestricted support-critical, flexible funding that can be directed where and when it is needed most. As the PMC generates nearly half of the Jimmy Fund's annual revenue, every rider supports the efforts of more than 3,000 DFCI faculty and staff members as they make countless advances that have become the standard of cancer care and research.

I’m asking you to join me in the fight against cancer by sponsoring me in my ride with the 2015 Pan Mass Challenge.  The doctors and researchers at the Dana Farber Cancer Institute in Boston are making tremendous progress in finding a cure for this terrible disease, but we need to continue to fund the fight and bring this to an end.

The easiest way to donate is to give on-line. The PMC site is a secure site. 

To give on-line, you can go to the following link to my personal fundraising site:

 

http://www.pmc.org/profile/MM0386

Many thanks,

Mike

Natural Killers and Lymphoma

Fascinating research out of Germany: Lymphoma cells seem to have the ability to switch off the body's immune system if certain immune cells get too close to the lymphoma cells. Understanding how and why that happens might provide some new targets for researchers.

The original research appears (or will appear) in the European Journal of Immunology; unfortunately, I can't find the article, or even a title. All I have to go on is a piece from Medical News Today. But it's fascinating enough that I want to comment on it here, even without seeing the full original article.

The research described focuses on particular cells called Natural Killer cells (known as NK cells). NK cells are a type of white blood cell, and an important part of our immune system. When things are working normally, the NK cells will attack viruses and even new tumor cells. They are very special cells -- unlike many white blood cells that work when they are given a signal by an antigen, NK cells can recognize invaders all on their own. Imagine a dog that needs its owner to give a command before it attacks an invader versus a dog that can figure out who belongs and who doesn't.

NK cells kill  by releasing toxic chemicals. Cool video about it here.

What the researchers in this study found was that NK cells are shut down when they get too close to lymphoma cells. (Here's where lack of access to the original article might be a problem -- no idea if the research focuses on particular types of lymphoma cells or not).

When NK cells were placed near the lymphoma cells in live mice, they shut down. When they were then repositioned away from the lymphoma cells, they started working again within a few hours.

So what it is about lymphoma cells that shuts down the NK cells and keeps them from doing their jobs (that is, from killing the lymphoma cells)?

There are two possible things that happen.

The first is that the lymphoma cells release something called IL-10, or Interleukin-10. IL-10's job is anti-inflammatory. When the body is invaded (say, during an infection), IL-10's job is to make sure the response isn't so overwhelming that the immune system starts to damage healthy cells as well as the invader. When things go wrong, this means IL-10 is getting too good at its job, and not letting the immune system go after the bad guys. IL-10 in the lymphoma cells seems to do its job too well, and block NK cells.

The second way is that the lymphoma cells deactivate the NK cells' NKG2D ligands. The ligands are the things on the surface of the cell that let them attach to invaders and hold them down while they poison them to death. Watch that video above and you'll see the ligands in action. When they don't work, the NK cells can't hang on to the bad guys, and they get away.

The interesting part of this comes from what we do with all of this knowledge. If we follow the path we have been following, that means we develop treatments that target IL-10 and whatever deactivates the ligands. Once they are shut down, the NK cells can do their job and clean up cancer cells before they get out of hand.

But there's another possibility -- removing the NK cells and activating them, and then returning them to the body. This skips that step that shuts them down, and lets them get to work.

(I'm not sure how that will work, exactly, but it sounds like a kind of lymphoma vaccine.)

So, this information isn't going to lead to a treatment any time soon. But it does give us another path to follow.

More importantly, it gives us another piece of that big puzzle -- all of the small things that need to be dealt with in order for the Big Thing to be taken care of. As much as we'd like to have a single treatment that can wipe out Follicular Lymphoma (or any type of cancer), we're learning more and more that it's going to take at least a few different treatments to target different steps that keep cancer cells from being killed off.

The important thing, the hopeful thing, is that we're learning more and more.

Pixar, Cancer, and Staying Positive

I went to see my (non-cancer) doctor this morning for a quick look at my lungs. My family and I went to Montreal, Canada last week for a few days to see some of their wonderful Jazz Festival and magnificent churches, among other sites (and to eat smoked meat and poutine, among other foods). I came back with a bag of Montreal bagels and a chest cold, or allergies, or something. It's gotten a little worse over the last week. The doctor says it's bronchitis, and told me to take something to loosen the congestion and call hr Monday if it's worse. I'm sure I'll be fine in a couple of days.

Of course, I couldn't help but flash back 8 years, to the summer of 2007. Around this time, early July,  I was on my second round of bronchitis. It eventually turned to pneumonia, and then more breathing problems in the fall, which led to a scan that showed a swollen node in my chest, and then another one popped up a couple of months later near my hip, and then a biopsy, and then a diagnosis....

It's funny how, even after seven and a half years, just a small little thing like a cough that wakes you up in the middle of the night can bring back a whole flood of memories. Like I told my new oncologist a couple of months ago, Follicular Lymphoma is an emotional disease as much as a physical one -- maybe even more of an emotional disease. For a lot of us, we show only the smallest physical signs of lymphoma. It's the emotions -- sadness, fear, anxiety, anger -- that are so much more visible.

******************

As I was waiting in the doctor's office this morning (why is it that when I get there 15 minutes early, I'm still called in 20 minutes late?), I flipped through a copy of Entertainment Weekly, my favorite trashy doctor's office magazine. It was maybe a month old, and it had a review of the new Pixar movie Inside/Out.

If you haven't seen it, I highly recommend it. It's about an 11 year old girl named Riley whose family moves to a new city. We see Riley's reactions to her new life through the five emotions that exist in her brain -- Joy, Sadness, Anger, Disgust, and Fear. I won't say more than that, though it's easy to find trailers online if you want them.

Now, my favorite Pixar movie has to be Up. The opening scene (again, I won't say much) made me cry for a week. And Dug the Dog made me laugh for about the same time (and made me rush home to hug my own dog). As a story, Up just can't be beat. It's one of my favorite movies of all time.

But as far as a cartoon that will make you think as it makes you feel? Inside/Out is as good as it gets.

Again, I don't want to give too much away, but I'll quote from that EW review: "Sadness...almost steals the show."

As we walked out of the theater, my wife said, "You need a little sadness. It's a necessary thing because it leads to Joy."

And that's a message that we need to hear, as cancer patients.

There's a essay online by the psychologist Barbara Held called "Combating the Tyranny of Positive Attitude." She reminds us that we are often told how important it is to be positive, especially in the face of illness -- a positive attitude is essential to our recovery! And then we we are not positive, we get the double whammy of feeling bad, and then feeling guilty that we feel bad. (The excellent writer Barbara Ehrenreich discusses this in a more cancer-related essay called "Smile! You've Got Cancer!")

A friend of mine was recently diagnosed with breast cancer. She seems to be doing well. But after she told me of the diagnosis, and we traded a few emails, I made sure to give her what I think is the best advice I have received as a cancer patient, very much in line with Barbara Held's: it's OK to have a bad day. Sometimes we suffer from the tyranny of positive attitude -- people telling us that staying positive is an important, even necessary part of our treatment. And we feel that pressure to be positive all the time. But you know what? Sometimes we have bad days. Things get overwhelming, and the only thing we want to do it sit on the couch and eat ice cream for lunch and watch bad television. And I say that's OK. We are cancer patients. We are entitled to bad days (and to ice cream for lunch).

And that's what Inside/Out is telling us. Sadness is OK. We all experience it, and it can lead to Joy.

So, for me, Inside/Out might be the perfect cancer movie. There's no actual cancer involved, but it helps you do the things that a cancer patient is supposed to do.

I've written several times about a famous and inspiring speech by the basketball coach Jim Valvano, who was receiving an award for courage as he was dying of cancer. in the speech, Valvano says this:

When people say to me how do you get through life or each day, it's the same thing. To me, there are three things we all should do every day. We should do this every day of our lives.

Number one is laugh. You should laugh every day.

Number two is think. You should spend some time in thought.

Number three is, you should have your emotions moved to tears, could be happiness or joy.

But think about it. If you laugh, you think and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.

Inside/Out will give you all three of those things in a couple of hours. I'm telling you -- the perfect movie for a cancer patient.

Don't shy away from the Sadness. You need that to get the the Joy.

Early Relapse in Follicular Lymphoma

There's a Follicular Lymphoma-related story that's been in the news over the last few days. It's a little more negative than I like to write about, but I've seen it discussed on about 8 different cancer news sites (like this one), so I think it's probably worth writing about.

The stories come from an article in the Journal of Clinical Oncology called "Early Relapse of Follicular Lymphoma After Rituximab Plus Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone Defines Patients at High Risk for Death: An Analysis From the National LymphoCare Study."

That's a pretty scary title. So let's look at the details.

First, this was a retrospective study. That is, the researchers looked at data from patients that had already been collected a while ago. In this case, the data comes from the National LymphoCare Study, a very large (almost 3000 patients) study of FL patients that has already resulted in a whole bunch of great articles and presentations. For this particular study, the goal was to see if there was a relationship between early Progression of Disease and Death. In other words, if patients get treated, but the disease comes back within two years, does that mean they are more likely to have a short Overall Survival?

Unfortunately, the answer seems to be that, yes, they do.

OK, before we get upset, let's look at the details:

The study looked at 588 patients that received R-CHOP as their first treatment. Of those patients, about 19% of them had early POD (that is, the disease came back within two years). Of the rest, 71% went longer than two years before the disease came back, and the rest either didn't follow up with the study or died of something other than lymphoma within two years.

Those 19% that had the disease return within 2 years ended up with a lower Overall Survival over 5 years -- 50%. Of those who went over 2 years, the Overall Survival was 90%.

The researchers conclude that this means patients in this group are at much higher risk of death that other FL patients, enough that they should be considered a special subgroup.

This isn't great news for some of us. But let's step back for a minute.

First of all, it's important to remind ourselves that we are dealing with numbers here, not people. None of us is merely a statistic, and statistics cannot predict what our futures will be. they can only tell us what happened in the past.

That said, if you do want to focus on statistics, then please keep this one in mind -- the population described here (Progression of Disease in less than 2 years) applied to only 19% of those in the study, and that group had a 50% OS of less then 5 years. 50% of 19% means that this issue doesn't even effect 90% of us with Follicular Lymphoma. So changes are good that, if you are under that 2 year mark, it's not going to effect you.

But for those of you unfortunate enough to be in that group? Well, I'll say again, statistics that look at the past are not a prediction of what will come in the future.

The researchers make it clear that they think this is enough to consider this as a special population. That's a good thing -- it means oncologists should pay special attention to someone in this situation. And paying special attention means they can offer some help (and maybe change those statistics in the future).

The kind of help they recommend might mean treating things more aggressively -- perhaps going for a Stem Cell Transplant right away. And of course, we know that STCs have a pretty good chance of success. (See Lymphomation.org for more on STCs.)

The researchers also suggest that patients in this special group could be directed toward clinical trials that are focused on more aggressive types of Follicular Lymphoma. We've seen the many new treatments in the pipeline, and we know that genetic testing is allowing us to move toward better targeting of treatments for patients.

So all of those news articles about this study have scary titles. But remember that nothing is certain - even the negative outcomes that cancer news writers like to predict in their headlines.

There's still a whole lot to be hopeful about, kids. Stay positive, even when you read the bad stuff.