Saturday, September 27, 2014

More from Patient Power on Follicular Lymphoma

OK, I lied --  Patient Power isn't done with their video series of interviews from the International Workshop on NHL. Here are two more videos featuring Dr. Wyndham Wilson of the National Cancer Institute (he was in the video on new treatments for FL that I linked to a couple of days ago).

 The titles of the videos pretty much tell the story:

1) Learn the Signs and Symptoms of Follicular Lymphoma -- I think most of us know what this one is going to say. We (or someone we love) has kind of been there already. If you're reading this because you think you might have lymphoma but you're not sure -- go see your doctor.

2) Watch and Wait or Continuous Therapy for Follicular Lymphoma: Where Are We Now? -- Lots of us know the basics of this one, too -- after a diagnosis, if things are slow-growing, there are no symptoms showing, and there might now be reason to treat, is it better to hold off on treatment, or better to start right away? Dr. Wilson gives a little history of how Watch and Wait came about (in the pre-Rituxan era, before we had so many options, particularly options with relatively mild side effects). Wilson rightly points out that the patient's emotional needs are a factor, and looks ahead with some optimism about newer treatments and how they might be combined in the future. things will look a lot different in 10 years.

As far as I can tell, that's it for the Patient Power videos on Follicular Lymphoma from the iwNHL workshop. I could certainly be wrong.

Andrew Schorr, who founded Patient Power, deserves a lot of credit for bringing so much information to patients, directly from the mouths of the researchers and doctors who are doing such great work for us. He likes to sign off with "Remember, knowledge can be the best medicine of all."

Truer words are rarely spoken.


Thursday, September 25, 2014

Cancer as Chronic Condition

One more video from Patient Power: Dr. Owen O'Connor, head of Hematology and Oncology at NYU, discusses looking at cancer as a chronic condition.

It's a short video, and Dr. O'Connor brings up the idea that maybe we don't need to approach cancer as something that needs to be cured -- maybe we can just try to control it. It's certainly not a new idea, and he doesn't really add anything new to that conversation (it's one that's been going on since I first became a patient six years ago). But (especially given his credentials), it's a good reminder that the conversation is out there, and that we have a choice about how we approach our cancer.

Dr. O'Connor pints out that the "controlling" approach might be especially appropriate for older patients, who might have a tougher time tolerating a more aggressive approach. He also hints that maybe for patients with an indolent cancer, without symptoms, controlling might be better than trying to cure.

It's an interesting question, one with emotional component, just like there is when we think about Watching and Waiting. If someone like me, diagnosed at 40 years old, was given a third option (other than chemo and W & W), of taking a pill every day to control my cancer, would I take it? It's a nice middle ground -- you feel like you're doing something, but you're not worried about the severe side effects. (Which isn't to say that the "controlling" treatments have no side effects. They just seem less severe than traditional chemo.)

It's an interesting question.

And one we might all start thinking about.....

Tuesday, September 23, 2014

Patient Power on Follicular Lymphoma

If you thought that last Patient Power video was good, you're going to love this one.

It focuses on new treatments for Follicular Lymphoma, specifically, not just lymphoma in general.

The speakers are Dr. John Gribben from the Barts Cancer Center in England, and Dr. Wyndham Wilson from the National Cancer Institute. As with pretty much everything that Patient Power does, the tone is upbeat and the content is informative.

There's some emphasis on understanding the pathways that Follicular Lymphoma cells take, and on targeting not just the cells themselves, but the processes that they go through in order to do their jobs. So the treatments try to disrupt these pathways. Again, Idelalisib/Zydelig, Ibrutinib, and Revlimid get mentioned.

 They point out, too, that many newer treatments focus on Follicular Lymphoma as chronic, so instead of treating and then waiting to treat again, the treatments are taken every day, keeping the disease under control.

That brings up the question, of course, of which approach to take: try to get rid of it, or try to keep it under control.

CAR T cells get a mention here, too, as they did in the more general lymphoma video. (This video was also done at the iwNHL workshop; I'm guessing there was a session that focused on CAR T cells that got everyone excited.)

I'm going to give you Dr. Wilson's closing statement in full, because I think it's worth reading, even if you're going to watch the video, too:

I think I’d like to close with one comment is that when I first started in this field in the late 1980s, the average median time people lived with these is around 10 years, and we’re probably now up around 15 to 20 years. There have been concrete, very favorable changes. I also want to say that there are a fairly large segment of people that get therapy where the disease never comes back in their lifetime.  Given the fact that the average age for the more common types is around 60, I think many people with current therapies can, I think, be very optimistic that these will not be life-threatening diseases, that they can live long enough, and sometimes the disease never coming back. I think that patients should be very optimistic and not see a diagnosis of these as being something that’s really going to be transforming their life because most people generally will live a very good, positive life with them. 

That's pretty nice to see, isn't it? And while some of us started this journey well before the age of 60, I think that kind of statement gives us hope, too. Median Overall Survival statistics are complicated things, and it's worth thinking about them carefully. I've written about that statistic before, and why it doesn't mean much, but the important thing to remember for us younger folks is this: Median Overall Survival means that half the people survived for fewer than 20 years, but half survived for more. And there's no upper limit for those that survive for more than 20 years -- there's nothing that says we can't go for 50.

(Maybe I'll write about that some more sometime soon....)

Watch the video. It's just more reason to be positive.

Sunday, September 21, 2014

An Upbeat Expert on Lymphoma

Patient Power, the cancer education group, has a great video up called "An Expert's Upbeat Perspective on Progress in Lymphoma."

You'll have a hard time finding a better title than that. I challenge any lymphoma patient to read that link and somehow manage to resist clicking.

In case you have resisted so far (I admire your self control), the video is an interview from the 2014 International Workshop on Non-Hodgkin Lymphoma (iwNHL), a conference for Lymphoma experts. the very upbeat speaker is Dr. Myron Czuczman, who is head of Lymphoma/Myeloma department at Roswell Park Cancer Institute in Buffalo, New York.

Dr. Czuczuman gives us about 8 minutes of subdued excitement without taking a breath. The title of the video really is accurate -- you can feel how excited he is about all of this.

Some highlights for me:
  • He discusses newer, targeted agents (like Revilmid, Ibrutinib, and Idelalisib/Zyedelig), and how they are different from traditional chemotherapy in the way they (mostly) spare healthy cells and cut down on side effects
  • He remembers how monoclonal antibodies (like Rituxan) were once considered the 'magic bullet" that would lead to a cure (not exactly the magic bullet, but Rituxan is still pretty darn awesome)
  • He mentions the "pizza delivery" system of using targeted agents to bring treatments directly to cancer cells
  • He starts to mention -- and then pulls back from -- discussing CAR T cells, where the body's T cells are "re-educated" to find CD19 or CD20 proteins on lymphoma cells and then destroy them, so the body's own natural defense system is being called into play, rather than using an outside substance. that's still too far down the line to get excited about, but he's excited anyway.

He ends with a pretty interesting statement: "The number of therapies we have, in some ways, make it difficult, because getting the right combination, the right sequencing, which ones are best combined." This is a variation on something I wrote about a few days ago -- there are so many good possible treatments out there that we don't have the resources to try them all.

The solution, according to Dr. Czuczuman? Encouraging more patients to join clinical trials. He says we have lots of "building blocks" now, and the more we learn about them, the better foundation we have for developing more treatments in the future.

Another excellent video from Patient Power. Watch it for the excitement about the future from a lymphoma expert.

Wednesday, September 17, 2014


If you've been following the cancer research world in the last year or two, you know that Immunotherapy has been getting lots of people excited.

If you havcen't been following the cancer research world, and you don't know much about Immunotherapy, here's your chance!

MedicalXpress has a nice article on the basics of Immunotherapy -- how and why it works, and why it holds so much promise.

Basically, researchers have discovered that cancer happens because the body's immune system gets turned off, so it doesn't recognize cancer cells as things that don't belong. The research focuses on why that happens, and how to make it stop. Specifically, the research has so far been focused on proteins such as PD-1 (probably the best known) that appear on T-cells (part of the immune system that is supposed to attack invaders), and keep them from doing their job. The researchers have developed anti-PD-1 antibodies, which block PD-1 and allow T-cells to do their clean-up work.

It's fascinating research, really, and a very different approach than traditional chemo. Instead of killing the cancer cell, it tries to chip away at the different small things that a cancer cell needs to grow and survive. Much more targeted, and ideally leading to better responses with fewer side effects.

So while this article isn't about Follicular Lymphoma, it does provide a nice introduction (and, to me, a lot of hope) to the way cancer treatments are going. There is already work being done on immunotherapy in lymphoma; no doubt we'll see more in the future.

Saturday, September 13, 2014

Clinical Trials for Follicular Lymphoma

Someone put a link to my last post (on Duvelisib) on the Magic NHL Forum. One of the responses came from Karl, who is President of Patients Against Lymphoma, the group that runs Karl is someone I have great respect for, so when he talks about lymphoma, I tend to listen.

Karl's comment was that the news about Duvelisib is "encouraging but also worrisome. The number of competing investigational products increases the challenge of not only getting initial approval but also learning how to best use each of those that achieve that milestone."

Does this mean we might have too many arrows in the Follicular Lymphoma quiver?

I don't think so. But it does mean that having so many might make it hard to test all of them well, figure out the right doses, determine the best combinations of new and old treatments to attack the disease in the right way, and do it all with patient safety in mind.

In other words, we don't necessarily need fewer treatments. What we need is...well, I'll go back to Karl's words: "We must increase the enrollment rate in trials commensurate with the rate of new study drugs ... and hopefully identify new ways to evaluate efficacy in a shorter time."

I think that second part, identifying new ways to evaluate efficiency in a shorter time, is kind of starting to happen. We've seen new processes from the FDA that are meant to get treatments to us more quickly -- Fast Tracking, Breakthrough Designation, and Accelerated Approval -- that are already having an impact on blood cancers.

But maybe more importantly -- and something more under our control as patients -- is that first thing, increasing enrollment in trials.

I've mentioned this before, and it's worth mentioning again, especially in light of Karl's comment about Duvelisib. Treatments don't mean much if they can't get tested, and there's no one who can test them but us, Follicular Lymphoma patients.

I think we have an advantage when it comes to clinical trials. We have lots to choose from, for one thing. And many of us, even at the time when we need treatment, might have a slow-growing enough course of disease that we can afford to be part of something that might not work. In other words, we'd have time to try something else if the trial didn't go the way we liked.And one final advantage -- most of us have the time to plan out our next steps. We can look into trials whenever we like, and know which might be appropriate for us if and when the time comes.

So whatever our hesitation, trials should be something that we at least talk about with our oncologists. As for myself, I have not yet been a part of a trial (I have only had one type of treatment so far), but I check in regularly to know what's out there, and what I might be qualified for.

How do I do it? Easy. Go to's page on clinical trials. It will not only give you a way to search for trials by disease, by location, etc. It will also give you advice about what to look for, questions to ask, and other important background info.

So, thank you Karl,for your thought-provoking comment about new treatments, and for the reminder that we all really need to think carefully about what our own role might be in making sure those arrows make it into our quivers.

Wednesday, September 10, 2014


Some news in the world of pharma companies in the last week that is probably relevant for Follicular Lymphoma patients:  AbbVie, Inc. has announced a partnership with Infinity Pharmaceuticals to develop and commercialize Duvelisib, a kinase inhibitor. CNN, plus a whole lot of other news outlets, have details on the deal, and who is going to make money if things go well, which is great, but I really don't care.

What I do care about is that someone thinks they can make money off of Duvelisib, which means they'll probably put some effort into eventually making it available to us.

Duvelisib is, as I said, a kinase inhibitor. Protein kinases are enzymes that are necessary for certain functions to happen to cells. Kinase inhibitors block those enzymes from doing their job, and thus they keep cells from doing things they aren't supposed to do.

Duvelisib is, specifically, a PI3K inhibitor, which means it blocks an enzyme that is necessary for a cancer cell to grow and survive. There are actually several different types of PI3K inhibitors, and they block different parts of the enzyme. And there are a bunch of different PI3K inhibitors already developed or in development, including Idelalisib, so we have a pretty good idea that this type of treatment, in general, will work. (In fact, maybe it is the recent excitement about Idelalisib that pushed these companies to make a deal?)

So far, Duvelisib has been studied in a couple of phase 1 clinical trials, and one phase 2 trial involving refractory indolent NHL patients (which, I assume, includes some Follicular Lymphoma patients). Lymphoma Hub has some basic information about Duvelisib, including information about these clinical trials, as does, under its alternate name IPI-145.

Wall Street is excited. That seems like a good reason to keep an eye on this one.

Sunday, September 7, 2014

Blue Ribbon Time

It's that time of year -- country fair time. Time to test my skills in the garden and the kitchen against my peers. (And my daughter.)

Long-time readers know that I have won blue ribbons for my tomatoes for the last two years. And that I am in competition with my daughter for the most blue ribbons (last year, she won for best cupcakes, best decorated cake, and best clay sculpture).

Let me begin with this -- it was not a good summer for vegetables. (You can probably guess, from that sentence, how well I did at the fair in the vegetable categories.) This was an unusually cool summer (until a few weeks ago), so my warm-weather veggies like peppers and eggplants never really got going. And when I went away for two weeks in July, all of my veggies had growth spurts, which either split some of their vines (tomatoes) or exhausted their fruit (cucumbers). Plus, we've had a groundhog problem, and this critter loves zucchini leaves and flowers. It was just not a good year.

All I had to enter in the fair was a few tomatoes. Without dwelling on it, I ended up with two third-place ribbons, for my Big Boy tomatoes and my green cherry tomatoes. There will be no three-peat this year for Lympho Farmer Bob.

Lympho Baker Bob, on the other hand, did OK for himself. While I expected some love for my Boston Cream Cupcakes (truly awesome) and Chocodoodle Snickerdoodle cookies (pretty darn good), and got none, I did win blue ribbons for my Chocolate Chip Banana muffins and my Ginger Carrot Bran muffins. So now I am officially both an award-winning baker and an award-winning gardener. My children aren't happy about my strutting around like a proud rooster.

My daughter, on the other hand, won a blue ribbon for her frosted chocolate cake, and some second-place ribbons for her sculptures and cupcakes. She will be the first to admit that she didn't put as much effort into things this year as in the past. And I though my two blues meant that she and I were now tied....but no. She won another blue ribbon for her homemade earrings. So she's ahead of me in the overall blue ribbon tally.

Which is great. As I've written before, I think this kind of competition is good for her. It's fun, with little pressure, and it gives her a chance to work hard at something and see the results pay off.

And just as importantly, it gives me a chance to do the same thing. I know lots of people have "bucket lists," with things they want to do before they die, and sometimes a cancer diagnosis really makes that list more important. But I've never been a bucket list guy. I don't want to someday look at my list and regret that I didn't get to do X or Y. Too much pressure to check something off.

I'd much rather enjoy the experiences as they come. Going to Scotland and England and seeing my kids enjoy themselves so much was a joy for me. I'd love to go back, and see and do the things that we didn't get a chance to see and do this time. If I don't get to do that, no regrets.

Same with the blue ribbons. If I'd come away this year with nothing, then no big deal. Getting up at 4:00am to bake muffins before I got the kids to school, and turning them in by 8:30am -- that was the fun experience. The ribbons are just the icing on the cake (pun intended).

I don't ever have a day where I don't remember that I have cancer. But that doesn't mean I have to stop myself from taking the opportunities that come to me.

Thursday, September 4, 2014

Lifestyle Risks for Follicular Lymphoma

The Journal of the National Cancer Institute's Monographs has published a massive and fascinating study of risk factors in 11 types of Non-Hodgkin's Lymphoma, including Follicular Lymphoma. They come to some interesting conclusions, and they come with an important warning.

But first, the massive study itself: The International Lymphoma Epidemiology Consortium looked at 20 case-controlled studies of NHL (that is, studies that compared people with NHL to people without it), looking at a total of over 17,000 NHL patients and over 23,000 non-NHLers. They did some statistical wizardry to make sure everything was comparable, and then broke it all up into the 11 types of NHL to see what they could find. The studies came from a big chunk of the world -- North America, Europe, and Australia -- and they looked to see if there was any connection between getting an NHL subtype and factors such as medical history, family history, lifestyle, and occupation.

Of course, around here we're most interested in the Follicular Lymphoma study, aren't we?

For this study, they looked at 3,530 FL patients, comparing them with over 20,000 non-NHLers in the control group. Follicular Lymphoma has always been one of those funny cancers that hasn't had a lot of risk factors associated with it. Up until now, there seems to have been a connection between smoking and contracting Follicular Lymphoma, but most other factors have been big maybes. Maybe it's higher if you worked on a farm. Maybe it's higher if you were around certain chemicals. Maybe it's higher if you had serious infections. But nothing really definite.

This study did find some more definite connections. Comparing Follicular Lymphoma patients to non-NHL patients, they found that the risk of contracting Follicular Lymphoma is higher if you
  • have a first-degree relative with NHL 
  • had a high body mass index as a young adult
  • worked as a spray painter
  • are a woman with Sj√∂gren syndrome (an autoimmune disease)
On the other hand, risk is lower if you
  • have asthma, hay fever, and food allergy 
  • have received  blood transfusions 
  • have high recreational sun exposure 
  • have worked as a baker or miller
  • are a university/higher education teacher 
Now, to me, those are some really specific risk factors. (Do you know how many spray painters there are in the U.S. right now? Me neither, but it can't be many.)

So here are the important things to take away from this:

First, a risk factor does not automatically result in a health outcome. We've all known people who have smoked their whole lives who never developed lung cancer (or Follicular Lymphoma, for that matter). A risk factor shows an increased possibility of something, but not a definite outcome. From these lists, I have two of the factors that result in higher risk, and  two that result in lower risk. The two from the lower-risk helped me about as much as my non-cancer-sniffing dog has helped me. And there's no guarantee that the higher-risk factors resulted in my diagnosis.

Second, and maybe more importantly: I think we all have a tendency to want to know why we got this disease, especially because there's no obvious connection between risk factors and diagnosis. We can't say "Oh, I got it because I ate too many avocados as a kid. Everyone knows avocado eating leads to Follicular Lymphoma." There's nothing obvious that leads us to that conclusion.

And I think it's bad to try to make that connection. While it might satisfy our curiosity, I don't think it helps in any other ways. We have Follicular Lymphoma, and we're doing our best to educate ourselves about it and deal with it. Why dwell on the past? Does it help to say, "Oh, I never should have taken that job as a spray painter!" or "If only I'd taken that job as a baker, and spent my days off getting some recreational sun exposure!" That's done. That won't change the fact that we are Follicular Lymphoma patients right now. If knowing about risk factors just results in guilt, we're better off not knowing. We have enough negative emotions to deal with as it is.

So what's the point of a study like this?

Well, according to the researchers, it's not about individuals, and it's not about regretting the past. It's all about the future. If we can understand the kinds of risk factors that lead to different types of NHL, then maybe we can start to find clues about what causes it. There won't be a direct line between cause and effect -- cancer is never that easy. But maybe researchers can start asking some new questions about who gets NHL and who doesn't, and why. And maybe those broad questions lead to narrower ones, and they can start investigating things on a genetic level and figuring out why spray painting and BMI turns on some switches in our cells.

So, in some ways, this study doesn't matter. In others, it may matter a lot, some day.

For now, though, close this blog and leave the guilt behind.

Monday, September 1, 2014

Happy Lymphoma Awareness Month!

It's September, at that means it's time again for Lymphoma Awareness Month! Woo hoo!

I always find it a bit ironic -- as if lymphoma patients, their caregivers and loved ones needed to be reminded about lymphoma.

Really, this month is about making others aware -- people who might have it and don't know it (though we sure hope that isn't the case for anyone), people who misunderstand what it's all about, even people who have the power to do something to help us (funders, donors, legislators, voters). It's good for people to know what lymphoma is, and WHY they should know it.

To that end, some excellent organizations have put some things together to help us make others aware.

Patients Against Lymphoma, the good folks behind, have posted an updated brochure that provides some basic information about lymphoma  -- types, symptoms, treatments, etc. It can printed on both sides and distributed to anyone you think might benefit from the information.

The Lymphoma Research Foundation is again conducting their "Light it Red" campaign, encouraging people to light up buildings and landmarks in red lights to raise awareness of lymphoma (and other blood cancers) and give hope to lymphoma patients. They've got a nice list of buildings and landmarks that will be lit up, including Niagara Falls in New York and Canada, the National Concert hall in Dublin, Ireland, and the TD Garden in Boston, among others. 

And of course, the Lymphoma Coalition, made up of Lymphoma research and support organizations from around the world, publishes their annual "Know Your Nodes" quiz.  (I got 8 out of 10. Feel free to try to beat me.)

Does "awareness" really matter? Does it make any difference?

Yeah. I think it does. More people being aware of lymphoma means that more people will take it seriously if they think they might have it. (And if you do think so, get the heck off your computer and go to a doctor. Don't trust anything online that says you might or might not have it. Get a medical professional to tell you for sure.)

And, more importantly, in the last month, a whole lot more people became aware of ALS, thanks to the ALS Ice Bucket Challenge that has been spreading all over the internet. (And yes, Lympho Bob did participate.) It not only raised awareness, but also raised millions of dollars for research on the disease. Pretty darn nice.

So take some time to celebrate this month -- our month. Cancer isn't really something to celebrate, but being alive sure is.