Friday, February 27, 2015

Follicular Lymphoma and Anxiety

The Journal of Clinical Oncology published a study a few weeks ago called "Anxiety and Health-Related Quality of Life Among Patients With Low-Tumor Burden Non-Hodgkin Lymphoma Randomly Assigned to Two Different Rituximab Dosing Regimens: Results From ECOG Trial E4402 (RESORT)."

As that very long title suggests, Follicular Lymphoma patients were divided into two groups. Both received four rounds of Rituxan, and if they responded, one group received Rituxan Maintenance, and the other Rituxan only after their lymphoma had progressed enough that it was necessary. The patients were given surveys to measure how much anxiety they had at various points along the way. they were also classified by the way they coped with their disease -- either through "active coping," or "avoidant coping."Active coping basically involves doing something -- either trying to change your the thing that;s causing you stress, or change your attitude about it. Avoidant coping is basically doing nothing -- trying to put it out of your head and hope it just goes away. As you might guess, psychologists think active coping is a better choice.

The researchers found some interesting things: anxiety related to their illness was about the same for both groups. Anxiety decreased over time for both groups. And Overall Quality of Life didn't change much over time. I think that has a lot to do with when all of this was measured -- AFTER that first treatment with Rituxan. It would be interesting to see how much anxiety there was for patients who watch and wait BEFORE they have an initial treatment.

I thought it was pretty interesting, too, that anxiety decreased over time. This isn't surprising. In my experience, and in conversations with other FL patients, I'd say it takes about six months after diagnosis to start to feel better, especially for watch-and-waiters. I think for many of us, we hear that word cancer and imagine the worst. It takes a while for it to sink in that we aren't going to die tomorrow, at least not from FL. (I should make clear that the patients in this study, like me, had low tumor burden, and so their FL was not as aggressive as it is for some others.)

One other important bit from this study: patients with avoidant coping styles were much more anxious than those with active coping style. In other words, pushing your problems away probably isn't going to make you feel better. I tell my kids this all the time -- you can try to pull the covers over your head and stay in bed, but all the only problem that will solve is a lack of sleep. Eventually, you're going to need to get up and deal with things.

The good news is, you are most likely all active problem solvers, or you wouldn't be googling "Follicular Lymphoma," or reading, or joining an online support group or a Facebook group -- however it is you first came across a link to this blog, you were doing something active to help you control your anxiety and learn more about your disease.

It's a better strategy, and I hope you are better for it.

Monday, February 23, 2015

Hematologic Malignancies Conference

A few days ago, the 2015 Congress on Hematologic Malignancies took place in Miami, Florida. This isn't a conference like ASH or ASCO, where new, cutting-edge research is being presented for the first time. Instead, it's a gathering of clinical oncologists -- the folks who take care of us directly -- meeting up to get practical advice on how to help patients.

(They were probably also hoping to gather someplace warm to escape the horrible winter that has hit most of the U.S. Not too bad there -- high 60F is better than what most of them probably left behind them at home.)

It's a small gathering, with just a few sessions (compared to something like ASCO, especially), so there isn't a whole lot of news about it online. But OncLive has done interviews with the people who are presenting, and one of the interviews is with Dr. Myron Czuczman from the Roswell Park Cancer Institute. He presented on sequencing therapies for Follicular Lymphoma. In other words: we can assume most of us with FL will need a series of treatments. So which one do you do first, and what comes after that? And that?

Myron Czuczman, MD, chief of the Lymphoma/Myeloma Service and head of the Lymphoma Translational Research Laboratory at Roswell Park Cancer Institute - See more at:
Myron Czuczman, MD, chief of the Lymphoma/Myeloma Service and head of the Lymphoma Translational Research Laboratory at Roswell Park Cancer Institute - See more at:

The brief article doesn't go into too much detail, but I found it encouraging to know that oncologists are thinking carefully about the issue. And it was interesting to see, even in a general way, what some of the issues are that have to be considered. As Dr. Czuczman says, there is no recipe to follow -- at every step, there are choices to be made. That's good for all of us to remember. (It also makes things more complicated, of course.)

One other thing that Dr. Czuczman does point out is that the choice of treatments should consider side effects and quality of life. While he doesn't say it specifically, I think it's worth remembering that quality of life involves the emotional factor that comes with being a Follicular Lymphoma patient. Obviously, every cancer patient deals with emotions. But ours are a little bit different -- many of us have to decide if we will be willing to hold off on receiving treatment. That's above and beyond the other emotions that we have when we are diagnosed.

So, I hope everyone who attended the Congress had a good time, maybe warmed up a little, enjoyed some seafood, and learned something new about blood cancers.

Wednesday, February 18, 2015

Memory Games and Lymph Nodes in Follicular Lymphoma

The Hematologist, a publication of the American Society of Hematology, published a piece last week called "Memory Games in the Lymph Node: The Inflammatory Origins of Follicular Lymphoma." It's a pretty dense article, but I think it says some interesting things about where Follicular Lymphoma comes from -- and, of course, that could provide some clues for how to get rid of it.

The author, Dr. Peter Johnson, reports on a series of experiments by French researchers. Dr. Johnson begins with some basic physiology about FL: it involves BCL2, which keeps cells from dying a natural death, and involves a build up of two kinds of cells: Follicular Lymphoma In Situ (FLIS), which accumulate in the lymph nodes, and  and Follicular Lymphoma-Like Cells (FLLC), which travel in the blood. These cells eventually become full-blown FL.

A particular genetic translocation (in other words, a switching of genes) is very common in FL (known as the t(14;18) translocation). However, this translocation also occurs in people without Follicualr Lymphoma. The question, then, is what makes things go wrong? Why do those FLIS and FLLC cells turn into cancer?

The French researchers used a mouse model to try to figure this out. Mice can serve as pretty good "model organisms" -- substitutes for people while researchers try to figure out how something works. We might not like to admit it, but mice are actually pretty close to people in terms of genetics; we share of 95% of our DNA. So using mice as models for genetic causes of cancer makes sense.

The researchers used a mouse with a human BCL2 gene that is only activated during something called V(D)J recombination. This is a very specific process that happens when an immature blood cell is turning into a specialized blood cell -- it is basically finding out what job it needs to do for the body. This is also the time that things can go wrong.

So basically, we have a mouse that is set up in a way that mimics how humans might get Follicular Lymphoma, if the right circumstances come along.

Next, the researchers introduce the right circumstances.

Over nine months, the researchers made the mouse produce antigens -- basically, reproduce those B cells that can get messed up. And, of course, the B cells got messed up. They found FLIS cells in the lymph nodes, and found that lots of memory B cells had problems. This is important -- memory B cells are the cells that hang around after the body has fought off an invader, to remind the body of how to fight it off again, the next time that invader returns. So now we cancer cells, which have had their "natural death switch" turned off, hanging around the body. Not good.

And it gets worse. When an immune system cell (like our B cells) pass through a "germinal center," located in places like lymph nodes, they sometimes get changed from one type of immune cell to another, depending on the body's needs. This is a normal thing, meant to help protect us. The problem is, Follicular Lymphoma cells that go through germinal centers tend to have a lot more changes than normal B cells.

So here's where we are: we have a bunch of B cells in the blood that are waiting for the right circumstances to turn into Follicular Lymphoma. Those circumstances happen. The cells go through germinal centers are change form in lots of ways, enough changes that the cells turn cancerous. And the ones that are special memory cells, meant to hang around in the blood, do just that. Ugh.

So what does all of this mean for you as a patient? Well, nothing, as far as your next oncologist appointment goes. But it does say something about how we might understand the origins of Follicular Lymphoma. For example, Dr. Johnson says that the study "would suggest that recurrent or chronic immune stimulation could provide an important predisposing factor for FL." Lots of activity for those B cells, changing to adapt to problems, might make one more likely to get Follicular Lymphoma.

But like everything else, this is still speculation. And even if it is true, it's a matter of predisposition -- making it more likely, but nor guaranteed.

This is a tough article to get through, and looking back at this post, I'm not sure I did much better at explaining it than the original did. What's important is that researchers are continuing to find out more and more about our disease at the genetic level, and at some point in the future, that's going to translate into a way to make us better.

Sunday, February 15, 2015

Obinutuzumab in Indolent NHL

The maker of Obinutuzumab has announced that a phase III trial has been stopped because were good enough to seek approval from the FDA for indolent NHL.

Obinutuzumab is a fully-humanized monoclonal antibody. In other words, rather than using mice cells in its manufacturing, as Rituxan does, Obinutuzumab uses only human cells. The idea is that the human cells might cut down on some of the allergic reactions that Rituxan can cause.

In this phase II trial, researchers looked to compare Obinutuzumab + Bendamustine with Obinutuzumab maintenance, with just plain ol' Bendamustine. They hoped to see some improvement
in Progression Free Survival, and in looking at 413 patients, they found some. They plan to announce the specifics soon.

Obinutuzumab is seen as an alternative to Rituxan. From a business standpoint, since Rituxan's patent protection will expire soon. While generic versions of Rituxan are expected to be available, there may be some patients who will switch to Obinutuzumab instead, especially since a number of studies (including this one) seem to suggest that Obinutuzumab will work on patients who have become resistant to Rituxan.

The landscape for Follicular Lymphoma is certainly changing. We're going to have quite a few choices -- even more than we have now -- in the very near future.

Wednesday, February 11, 2015

Good News for R Squared (Revlimid and Rituxan)

Lymphoma Hub is reporting good news on results of a clinical trial of R-Squared (Rituxan + Revlimid, also known as Lenalidomide).

Actually, it's great news: Adding Revlimid to Rituxan seems to overcome Rituxan Resistance.

The trial involved 43 patients with different types of indolent lymphoma, including 26 with Follicular Lymphoma. About half were resistant to Rituxan, and the other half or so had relapsed after Rituxan treatment within six months.

Patients received Revlimid every day for 8 weeks. They were then given Rituxan once a week for four weeks. The Overall Response Rate after the Revlimid was 30.2%, which is pretty good. However, adding Rituxan again was even better --  after 12 weeks of letting after letting the Rituxan do its job, the ORR was 62.8%, more than double. Clearly, the Revlimid did its work. Patients in the trial started out resistant to Rituxan, and ended up having it work again.

The results for the patients with Follicular Lymphoma were even better. The ORR after Revlimid was only 19%. But after Rituxan, it jumped to 65% -- more than triple.

R-Squared (or R + R) has been in trials for a while, but according to Lymphoma Hub, this is the first trial to report results. I think they give us a lot to be excited about.

Of course, this is a small study. And then, there are the side effects that come with Revlimid (see the article for more on that). But I think this is a good example of the kind of combination therapy that we'll see more of in the future. We know how complex cancer is, and attacking it from different angles.

I'm sure we'll see more about R-Squared in the future.

Monday, February 9, 2015


I'm linking to blog post from earlier today from Lymphoma Rock Star Betsy de Parry. (Betsy literally wrote the book on RadioImmunoTherapy for Follicular Lymphoma.)

Today, she wrote a blog post for the University of Michigan Cancer Center's Health Blogs. Betsy was treated for Follicular Lymphoma there in 2002 (that's over 12 years since treatment, kids). Her subject is scanxiety, that horrible feeling of uncertainty that comes a few days before a scan, and then during the scan, and then whatever time it takes to get the results.

I think most of us have been there, and understand what it means.

Betsy does a nice job of capturing that bad feeling, and of pointing out that it's hard to understand if you've never been through it. It's easy for someone else to tell you to relax. Not so easy to actually do it.

But Betsy ends on hope (and if anyone knows about hope, it's someone who been 12 years out):

And I learned to accept that coping with a little scanxiety for a few days here and there was a small price to pay for the peace of mind that came from knowing that just in case my body ever decided to betray me again, we’d know earlier rather than later, when betrayal was easier to conquer.

Nice job, Betsy. Thanks for sharing your experience.

Sunday, February 8, 2015

Cancer on TV

This morning, I got up earlier than usual so I could get so me work done while the family slept in. I have some duties at my job, and they have messed with my schedule; I'm trying to sneak in work when I can. The plan was to do a couple of hours of work, and maybe even sneak in a blog post, too. (I have about five posts that I plan to write, once I get some time.) I set myself up in the basement and turned on the TV for some background noise, which often helps me focus on what I'm doing. (A friend once told me this is because I'm a Gemini, and I need to do two things at once so my "twin" can stay busy. Whatever -- it seems to work.)

My background noise this morning has been a TV show called Red Band Society. It's a show about a special ward in a hospital in (I think) Los Angeles devoted to teenagers who need long-term care. They each have their own cool hospital room, they go to school with a tutor occasionally, and seem to be allowed to break out of the hospital without supervision whenever they want or need to. There's a cool kid with cystic fibrosis, a rich, spoiled cheerleader with a bad heart, a smart girl with anorexia, a former high school soccer star with cancer, and a few others. It's a teen drama, so it's kind of corny a lot of the time. But I think it makes its point -- young people (and probably all of us) need other people in hard times. that's where the title comes from: the teens in this ward wear special red identification bands on their wrists.

From what I can tell, the show is about to be cancelled; I think I heard an announcer say it was "the series finale."

I think I started watching this because it was kind of a test. The show Breaking Bad ended recently. Lots of people consider it the greatest television show ever made. I wouldn't know -- I've never seen it. I remember, 7 years ago, seeing the advertisements for it, and thinking it looked really good. And then, a week or two before it premiered, I was diagnosed with Follicular Lymphoma. And that was the end of Breaking Bad for me. No way I could watch a show about a teacher who was diagnosed with cancer and was worried about his family being taken care of so he started making crystal meth. That hit just a little too close to home. (Except the part about being a drug dealer.)

So when I saw a show about a bunch of people with illnesses, including cancer, it made me think of how far I'd come. I've seen plenty of movies about cancer, and TV shows, and goodness knows I've read a lot about it. But it was a nice reminder that things get better. Especially with a disease like Follicular Lymphoma, that can present in an indolent way like mine, the emotional issues are just as important as the physical one. Maybe even more important.

So if this is still pretty new to you, please keep telling yourself that it does get easier.


Now, as nice as it is to be able to see ourselves in the movies and TV shows we watch, and the internet articles and cancer memoirs that we read, sometimes they get it wrong.

In the finale, the former soccer star found out that his cancer had returned.

When his doctor told him and his mom the news, the doctor suggested he enroll in a clinical trial. The young patient ran from the room, and his mom looked at the doctor, worried.

"A trial usually means you're out of options. Are we?"

Now, this would have been the perfect time for the doctor to say, "No, that's not what a trial means. In fact, it's that misconception that keeps so many people out of clinical trials. But the fact is, in order for treatments to progress, we need more patients who are willing to join clinical trials, and not just as a last resort, so we can test out the treatments we have in the pipeline. And with the explosion of new treatments that we can expect in the next few years, based on our new and deeper understanding of the genetic causes of cancer, participation in trials will be even more important. So please stop believing that clinical trials are a last resort -- and tell your friends the same thing."

But he didn't say that. Instead, he looked at the mom significantly and said,

"I think the trial is his best hope."

And that would have been fine, if he said all of that other stuff I had suggested. But then they started talking about how cool it would be to meet Maroon 5as part of a Make-a-Wish program, and how much comfort it would bring to the mom to see her son so happy.

I know, it's TV, and the show was being canceled, and they needed to wrap things up. But I hate to see misinformation about cancer, especially when they do other things right.


The show ended with the teens together on the hospital roof, because patients are allowed access to hospital roofs whenever they want to go there. And the whole group sang the Rolling Stones song, "You Can't Always Get What You Want."

And I guess that's fitting in lots of ways, for them and for me.

Because, as Mick Jagger sings, "But if you try sometimes, you just might find, you get what you need."

Tuesday, February 3, 2015

FL in the UK: New Research

I know I'm way behind on posting. Life is just getting in the way, I guess. I always say, I'm grateful to be as busy as I am, and to be healthy enough to be able to work enough to stay so busy. But Lympho Bob is important to me, too, and it frustrates me when I can't get to it as often as I'd like.

But I'm here today, so let's move on.

As kind of a follow-up to my last post (the Lymphoma Report Card, that looked at availability of treatments around the world), I came across an article about new research on lymphoma in the UK -- what's happening in various stages of the pipeline -- published by the Head of Research for Leukemia and Lymphoma Research, a blood cancer organization. It has some detail about immunotherapy in DLBCL, acute Lymphoblastic Leukemia, Acute Myeloid Leukemia, Multiple Myeloma, and Hodgkin's Lymphoma. Alas, nothing on Follicular Lymphoma.

Same in their discussions of other new treatments and approaches to lymphoma, including some pathway treatments that "get at the roots" of diseases, and attempts to prevent lymphoma in the first place. All very interesting, but none of focused on Follicular Lymphoma specifically.

Until I looked at the comments.

Someone asked about Follicular Lymphoma (odd that it was left out of the article), and was given an answer -- two UK studies focused on FL. The first (from an article published last spring) describes a database at the University of Leeds, containing cell samples and medical records from NHL patients in Yorkshire. Researchers will be able to use the database to search for genetic similarities between newly diagnosed patients and those in the database.

The idea is that there are differences and similarities among cancers that the eye cannot see. For a long time, patients were classified based on how their cells looked under a microscope. The "follicular" in Follicular Lymphoma actually describes the way the cells look under a microscope. But now, of course, we can look much deeper into a cell, and see that surface similarities don't mean that two cancer cells are the same cancer -- they may have genetic differences that can't be seen with a microscope. The researchers at Leeds will be able to match up some of those deeper differences and help determine whether certain treatments will work better than others. It's potentially a very different way of looking at cancer treatment.

The other comment in the original article links to a second Follicular Lymphoma-related study. This one announces that a phase I-II trial will begin for BI-1206, a new monoclonal antibody. It works a lot like Rituxan, but with some very important differences.

The first is that it targets a different protein on the surface of the cancer cell. Rituxan targets CD20, while BI-1206 targets CD32b. Always nice to have a different target, in case the two were used in combination. The second difference, though, is the big one -- BI-1206 will also help maintain CD20 protein on the surface of the cells. That means it should cut down on Rituxan resistance, which often happens to lymphoma patients. Over time, the cancer cells stop reacting to Rituxan -- BI-1206 may cut down on that resistance. That would mean that a BI-1206/Rituxan combination would be especially effective.

Both of these FL research projects have received funding from Leukemia and Lymphoma Research. After that Lymphoma Report Card, it's nice to read some stories about some of the good things that are happening.