Saturday, March 30, 2013


Another quickie today: Could a single treatment be effective in virtually every type of cancer?

It's an accepted fact that when we say "cancer," as in "finding a cure for cancer," we aren't really talking about one single disease. There are at least 200 different types of cancer, probably more. Heck, there are anywhere from 30 to 60 types of NHL, so I'm guessing there are ultimately more than 200 types of cancer overall.

The number of types has increased because researchers have been able to look closer and closer at cancer cells and determine their genetic makeup. So while Follicular Lymphoma cells might all look the same under a microscope, a deeper genetic analysis shows that there are actually several types, and perhaps each of those types will respond better to a particular type of treatment.

This has been the basis of much cancer research for the past few years -- understand the differences that make each person's cancer unique to him or her. Treat accordingly.

So it's a little strange to see researchers saying the opposite -- that maybe all cancer cells have something in common that can be targeted with a single treatment.

That something is a protein, CD47.

Researchers have known that some blood cancers have CD47 on the surfaces. But now they are discovering that many types of cancer -- including breast, ovarian, colon, and liver, among others -- have an excess of CD47. Targeting this protein might help shrink cancer tumors, as has been happening in tests with mice already.

It's a strange concept, given what we've known about cancer for a few years now. But maybe these researchers on to something. Looks promising so far.

Wednesday, March 27, 2013

Conversation about Follicular Lymphoma

The Lymphoma Research Foundation added "A Conversation about Follicular Lymphoma with Dr. Christopher Flowers" about a week ago. Dr. Flowers is director of the lymphoma program at Emory university's cancer center.

It's a brief interview, with some basics about Follicular Lymphoma, and his take on some of the important issues of the field. He was asked, for example, about current research on treatments. He cites a couple of kinase inhibitors -- Ibrutinib and GS-1101 -- that have been making lots of news lately. They certainly seem to be the future of the field, at least as things are defined right now. It will be interesting to see how they get tested in trials in the next few years. In combination with other treatments? As maintenance options? Good, good stuff.

He also mention Bendamustine + Rituxan + Velcade for relapsed Follicular, plus R + R (Revlimid and Rituxin) for maintenance.

More arrows in the quiver.

Dr. Flowers also has suggestions about clinical trials (a great idea) and advice for newly diagnosed patients (get a second opinion and see a specialist who is up on the latest developments -- also great ideas).

So, nothing terribly ground-breaking, but it's always interesting to me to see what gets mentioned by those who are so deeply involved in the field.

Monday, March 25, 2013

Bendamustine: Good, But Not As Good as We Thought?

Lymphoma Rock Star Dr. Bruce Cheson of Georgetown has a video out today on Medscape News Today called "Is R-Benda a New Standard in Lymphoma?" (The link provides the 5 minute video of his commentary plus a written transcript of what he says.) Cheson reviews the article "Bendamustine plus rituximab versus CHOP plus rituximab as first-line treatment for patients with indolent and mantle-cell lymphomas: an open-label, multicentre, randomised, phase 3 non-inferiority trial," published lats month in The Lancet. This is the results of the article that explains the clinical trial that established that Bendamustine + Rituxan is superior -- vastly superior -- to R-CHOP, both in effectiveness and toxicity. In other words, B + R works better and has fewer side effects. As Dr. Cheson asks in his title, Bendamustine has pretty much proven itself to be the standard for Follicular and other indolent lymphomas.

Dr. Cheson has some fascinating commentary, however, which raises some questions about the study, and thus about whether B + R is as effective as this research would suggest.

For example, Dr. Cheson takes issue with the way the effectiveness was measured. The measurement used was Progression-Free Survival -- how long it takes for the disease to be present again. One problem, says Dr. Cheson, was that patients were tested every 6 months, in a way that wasn't consistent, which throws off the measurement. They were also tested with CT scans, rather than PET scans. A CT scan will show growth in nodes, but not necessarily the presence of cancer. The PET is a much more sensitive instrument, and could possible detect cancer earlier (as would a more frequent scan). It's possible that the disease was actually present much sooner in some patients than was detected.

Another problem, says Dr. Cheson, was with the side effects listed. Clearly, B + R has much, much less toxicity than R-CHOP, as measured by something like hair loss (inevitable in CHOP, nonexistent in Bendamustine). But Dr. Cheson, who frequently prescribes B + R, reports lots of patients with "profound fatigue" (something I have also heard from friends in the support group), though this study downplays this side effect. 

So, maybe, in some small way, Bendamustine isn't quite as good as thought? 

Now, all that said, Dr. Cheson isn't planning on stopping his use of Bendamustine, because it certainly does work. And despite what he says, I don't plan to call Dr. R and tell him we need to talk about whether or not Bendamustine is the best choice for me. That's the one we're planning on when I need treatment next, and I'm still planning on it. Even if it's "only" as effective as R-CHOP, it would still do the same job with much less toxicity, and to me, that would be worth it.

But maybe the most fascinating thing in this video comes at the end, when he addresses the question in his title: Is Bendamustine the standard?

Here's how he ends the video, before signing off:

It is an interesting and important day because we finally have the opportunity to carefully evaluate the data that have been presented for many years. Take a peek at the paper. See how you assess the data as published and how it may affect your practice. It is an interesting time. I predict that this study and the Bright study will be irrelevant in a few years, with all the new kinase inhibitors and proapoptotic drugs that are out there. But at least for now, R-CHOP and R-bendamustine are a part of standard practice, and now we have the opportunity to see the data on the basis of which practice was changed. [I added the emphasis.]

Maybe it doesn't even matter? Maybe we'll all be on Ibrutinib or some other kinase inhibitor in a few years? That's a pretty awesome prediction from a Lymphoma Rock Star.

It really is an interesting time.

Saturday, March 23, 2013

The Semantics of Cancer

A real quick post, as I deal with the wonderful busy-ness that comes from having three talented children:

Karin Diamond wrote in the Huffington Post a few days ago, a nice article called "The Semantics of Cancer." It seems at first like a release of frustrations at being given advice from strangers, a variation on the timeless "Things You Shouldn't Say to Someone with Cancer" article. Diamond, who has Hodgkin's Lymphoma, writes in particular about people who don't know her, but who make suggestions to her about how changes in food, or a reliance on spirituality, might help her cancer.

But the article is more than that. I think, ultimately, Diamond is talking of the dangers of being being judgmental, from both sides of the cancer aisle. Just as she doesn't want people to judge her choices, she tries not to judge other peoples' choices, either.

It caused a little bit of reflection for me, given what I wrote in my last post. I don't want to judge anyone's choice of food, or religion, or anyone else, and as a commenter wrote, sometimes feeling like you're doing something is the most important thing. And, as Diamond says, it's ultimately the patient's choice to do or try or believe whatever she thinks is best.

I guess my bias is for informed choices. I've always seen Lympho Bob as a place to share knowledge with others, but more importantly, to work through that knowledge for myself.

Recognizing, of course, that what I see as valuable is not necessarily what others will see.

Certainly lots to think about there.

Wednesday, March 20, 2013

Follicular Focus

The Lymphoma Research Foundation has a nice page called "Focus on Follicular Lymphoma" that gives some basic information on our disease, links to LRF resources, and the occasional profile of a patient or survivor. One of those profiles popped up yesterday, and while it is inspiring (the patient, Morrie, is an 18 year survivor), it also brings up some issues that are worth discussing.

Morrie was 44 when he was diagnosed, a father of two, and was recommended to watch and wait. So Morrie and I have a lot in common; I was in my 40's, a father of three, and watched and waited for two years.

I appreciate his desire to do something -- anything. For him, being proactive meant making changes to his lifestyle that he hoped would help. And they seemed to work. His macrobiotic diet coincided with  clean scan, and his return to an earlier diet (including meat and dairy) coincided with a return of the disease. He went back to the macrbiotic diet and has been cancer free since, with no chemo or radiation.

I think it's worth pointing out that the implication isn't truth. I was careful to say his diet change "coincided" with changes in his disease, but really, there's no hard evidence that diet will cure Follicular Lymphoma. It's a wacky disease, one that waxes and wanes on its own, with nodes getting bigger, but then sometimes getting smaller as well. And the whole notion of spontaneous regression is not unheard of. That is, sometimes Follicular Lymphoma just goes away on its own. Like I said, it's a wacky disease.

Is there a chance that the macrobiotic diet cured Morrie? Sure, there's a chance. Is there a chance that his disease would have behaved as it did even if he didn't eat what he ate? Absolutely. The point is, we really don't know. And it surprises me a little that the Lymphoma Research Foundation would post his story, given their focus on scientific research (their Follicular Lymphoma treatment options page doesn't mention anything about macrobiotics or other alternative treatments).

In a way, we're fortunate to have an indolent cancer (I know, I know, but hear me out -- I'm not saying it's "the good kind.") What I mean is, something slow-growing allows us the time to make the kind of lifestyle changes that Morrie made. As he says, some of the things he has done may not have helped, but they didn't hurt. that's not the case with some other, more aggressive cancers, where rejecting something like chemotherapy for a "natural" cure might result in dying. But, again, the flip side of that is that there's no way to know if whatever untested methods you are trying are actually working.

So, in the end, what I'm saying is, please fully understand what you're getting into with the choices you make. The internet is a wonderful place, full of all kinds of fantastic information. And full of lots of stuff that sound good, but isn't. As Follicular Lymphoma patients, we are fortunate to have more time than most cancer patients to investigate both.

Monday, March 18, 2013

Ibrutinib & Friends

Just on the heels of good news about Ibrutinib last month, more very exciting news about its cousins -- the other treatments known as Kinase Inhibitors. Apparently, as good as they have been so far, there's a chance we're not even using them at their full potential.

This morning, Medical News Today published a commentary on an article in the journal Nature Chemical Biology that described  a study of four Kinase Inhibitors. While Ibrutinib was not among the four, one of the findings of the study was that Kinase Inhibitors tend to all work the same, so we can perhaps assume that Ibrutinib can be included in this good news.

The study found that Kinase Inhibitors do m ore than what we assumed -- keep cancer cells from growing by blocking certain enzymes (kinases) from working. But there's more to it than that. In higher doses than are currently used, Kinase Inhibitors keep kinases from joining up with something called the Hsp90-Cdc37 chaperone system, which the article describes as "a complex of molecules in cells which play a vital role in the stability of proteins." It doesn't give a whole lot more detail about what that means, which is fine. The important thing is, if we use higher doses of something that already seems to work, then it will work even better. And there's also some indication that not only will a Kinase Inhibitor stop the kinases, it might also be able to destroy them.

According to the article, there are 25 Kinase Inhibitors being used right now (including two for Non-Hodgkin's Lymphoma: Ibrutinib and GS-1101, which several people in the support group have used with some success), and another 400 in development (not sure how many of them are targeted for NHL, but I'm guessing it's a few).

So, to sum things up: Kinase Inhibitors work -- for lots of different cancers, including NHL. They might work even better in different doses. It will be interesting to see how all of this is handled from here. Will trials start up quickly for the four that are discussed in the article? Will others follow quickly? Will doctors go off label on their own and see what happens? There's no mention in the article about possible side effects from higher doses, which certainly needs to be considered.

But, as always, an article like this brings just a little bit more hope.

Friday, March 15, 2013

Cancer-Sniffing Dogs

The BBC News had a report yesterday on cancer-sniffing dogs. They are trained to smell cancer on people's breath. Which is pretty amazing.

The dogs are able to detect compounds present in the breath. They've been trained to detect prostate and bladder cancers; breast cancer seems to be their latest discovery.

This is all very early, of course, and much wider testing will have to be done eventually. The hope is that an "electronic nose" can be developed that will serve as an early detection device (though I say just keep using the dogs, which provide some stress relief along with the cancer detection -- a nice bonus).

As you may know, one of the first cancer-sniffing dogs was George, a standard schnauzer.

As you may also know, I have a standard schnauzer named Strudel. 

Strudel is not a cancer-sniffing dog. I know this because I was diagnosed with Follicular Lymphoma a year after we got her. Not only did she give me no warning then, but she seems to take no notice of my cancer now.

Here's Strudel on Valentine's Day. Is she sniffing cancer? No. She is asking if she can play ball, even though there is three feet of snow on the ground.

And here's Strudel playing with a rubber bone. Maybe she's in training to sniff out bone cancer?

And here she is on her birthday. Is she sniffing cancer? No. She is sniffing birthday cake and ignoring everything else. Because she's like that.

So, as cool as it would be to have a cancer-sniffing dog like George the Standard Schnauzer, I have Strudel, who does lots of thing beside sniffing cancer.

I know what you're thinking -- She must be really good at stress relief, huh?


Tuesday, March 12, 2013

Follicular Lymphoma: Curable?

I've been kind of chewing on an article for a while, partly because it's kind of technical, and partly because I'm still not sure how I feel about what it's saying.

The article is "Curability of Advanced Indolent or Low-Grade Follicular Lymphomas: Time for a New Paradigm?" by Dr. Fernando Cabanillas, published in the Journal of Clinical Oncology earlier this year.

Dr. Cabanillas starts by saying that NHL experts have accepted a particular paradigm (that is, a particular way of seeing things) for a very long time: aggressive lymphomas are curable, and indolent lymphomas (like Follicular) are not. And, he says, maybe it's time to rethink that way of seeing things.

Paradigms are important. They way we look at things shapes the way we approach them. It's a kind of prejudice, in a way: if you think all Irish are drunks, you'll lock up your liquor cabinet when they come to visit. But the problem is, you end up missing out on some nice blarney and Guiness stew.

Bad analogy, even if it's timely. But the point is, if you see Follicular as incurable, then maybe your research focuses only on extending responses, or decreasing toxicity -- something other than finding an actual cure.

And this is exactly what Dr. Cabanillas wants NHL experts to rethink: the limitations that come from assuming Follicular Lymphoma is incurable.

Right now, aggressive lymphomas like DLBCL are considered "cured" if the patient does not suffer a relapse within 2 years. About 95% of the time, this hold true: make it two years, and you are most likely in the clear.

However, if we apply that same criterion to Follicular Lymphoma, we're going to be disappointed. Even if a patient goes beyond 2 years (someone like, say, me), there's no guarantee that the lymphoma is "cured."  Quite the opposite -- most likely, it's coming back. Maybe in 2 years. Maybe in 5 years. Maybe sooner or maybe later. 2 years means nothing.

So one of the things Dr. Cabanillas suggests is, maybe be stop comparing Follicular and other indolent lymphomas to their aggressive cousins. Maybe 2 years shouldn't be the "cured" cut off. or 5 years. Maybe we need to say it's 10.

He offers some statistics that suggest that stem cell transplants or high dose chemotherapy just might result in a long-term cure. The problem is, no one looks at survival statistics long enough to really know.

It's an intriguing article. I'm all for looking at things in new ways. But it still kind of bothers me.

I guess it's because this seems like kind of a high-stakes approach to things. What I mean is, the kinds of treatments that result in a possible cure are highly aggressive, with potentially bad side effects. And the cure is possible -- people do get allo transplants and still suffer relapses.

Is it worth it? Is it better to manage instead -- living for years while watching and waiting, getting Rituxan, trying Bendamustine or some other less toxic treatment, and living with it for years? Does the potential lifestyle setback justify the reward?

I wish I had an answer. It's the central dilemma for Follicular Lymphoma, given our lack of a clear path for treatment.

So I guess my wish is that an article like this keeps researchers focused on a cure. I'm sure not going to reject one when it happens. But I'm not convinced it's here yet. I need more than a manipulation of numbers. I don't regret my treatment decisions, and I look forward to being able to make more decisions over the years.

Saturday, March 9, 2013

Why Cancer Vaccines Fail

Time magazine has an excellent piece on recent research into why cancer vaccines fail.

Most cancer vaccines -- including those created for lymphoma -- use a mineral oil called IFA that is meant to jumpstart the immune system. However, the IFA tends to collect at the injection site, rather than traveling through the body. The T cells, which are the immune system cells that would fight the cancer, double back and attack the IFA, rather than seeking out and destroying the cancer cells.

The research tried to replace the IFA with a water-based ingredient that does not do as good a job at stimulating the immune system, but may make up for that by having more T cells work more efficiently.

It's fascinating how one small change might make a big difference, if a problem can be seen through a different pair of eyes.

As I've said before, I find the whole idea of a cancer vaccine to be particularly fascinating, mostly because I saw the excitement from Dr. C, the lymphoma specialist I saw soon after I was diagnosed. I've been watching the vaccines, particularly BioVaxID, for 5 years now, waiting for a breakthrough, maybe this is the start of one?

Wednesday, March 6, 2013

Transformed Follicular Lymphoma

The current issue of the Journal of Clinical Oncology features a very interesting article called "Autologous and Allogeneic Stem-Cell Transplantation for Transformed Follicular Lymphoma: A Report of the Canadian Blood and Marrow Group." It offers what I think are some surprising results for the best way to treat transformed Follicular Lymphoma.

A little background (though, if you're reading this blog, my guess is that you already know a little something about transformation): FL is an indolent, slow-growing lymphoma. It can tale months or even years to progress  to something that needs to be treated. However, for some patients, their FL is particularly unstable genetically, and it transforms -- changes from fairly slow-growing cancer into an aggressive, fast-growing cancer. there are several types that it transforms into, but the most common is Diffuse Large B-Cell Lymphoma. Based on the estimates I have seen, anywhere from 15% to 50% of FL patients will transform.

DLBCL is most often treated with CHOP, often in combination with Rituxan. R-CHOP is pretty effective, especially when the transformation is caught early. When it isn't, or the R-CHOP doesn't work, patients typically have a Stem Cell Transplant. In this procedure, the patient is given high dose, aggressive chemo, which essentially wipes out the immune system including the bone marrow. Stem Cells are them introduced into the body, and they remake the immune system much quicker than the body could remake it on its own.

There are two types of SCTs: Allogeneic and Autologous. With an "Allo," a donor is found whose cells match up well with the patient. After the heavy chemo, the donor's cells are introduced into the patient. It often has great results. But it often results in some bad side effects as well. With an "Auto" transplant, the patient has her own Stem Cells removed, gets the chemo, and then has the same cells reintroduced into her body. The plus side is that there's no worry about the body rejecting these unfamiliar cells. The downside is, there may be some cancerous cells among the ones that were reintroduced.

[That's a really over-simplified description of SCTs. If you want a better description, watch this.]

Now, typically, Allo Transplants (using someone else's cells) are thought to be higher risk, but more effective. Research seems to bear this out.

Except for now, for Transformed Follicular Lymphoma.

The JCO article linked above describes a study of 172 patients with Transformed FL. 22 had an Allo transplant, 97 had an auto, and 53 had R-CHOP or other chemo + Rituxan. After 5 years, the overall survival was  46% for patients treated with the Allo, 65% with the Auto, and 61% with R + chemo.

This was a surprise. Now, there are some issues with comparison -- these patients weren't all part of the same tightly-controlled study, but were looked at retroactively. So it's possible that there were some slight variations in care that caused the results to be what they were. But at the very least, the study calls into question whether or not Allo is the way to go.

The JCO has a nice feature on its web site where they ask experts in the field to do a brief podcast commenting in the articles they publish. For this article, the expert comment comes from Dr. James Armitage of the University of Nebraska Medical Center (something of a Lymphoma Rock Star). The big take-away for me: look deeper into the statistics for transformed FL, and there are a whole bunch of factors that affect which of the three options will work best. And as surprising as it is that Auto seems overall more effective than Allo, it's even more surprising that the chemo option is just as effective as the Auto.

This certainly doesn't answer the question of which treatment is best. As we all know, there are darn few easy answers when it comes to treating Follicular Lymphoma. But even raising more questions has its benefits.

My guess is that there will be a lot more conversation on this topic in the next few months.

Monday, March 4, 2013

Colon Cancer Awareness

March is Colon Cancer Awareness month. To celebrate and increase awareness, a large inflatable colon was set up in Times Square on Friday. (There's a nice joke in there about yet another ass from New York that's full of hot air, but I'm certainly not going to be the one to make it.)

I don't usually promote awareness of other cancers, but a couple of weeks ago I had a conversation with someone, and the inflatable colon reminded of it.

Which says something about the people I have conversations with.

It was a conversation with someone who is of an age where he needs to start thinking about getting a colonoscopy, which is, of course, one of the best methods of early detection for possible colon cancer problems. And it's an easy way, too.

Which is what our conversation was about: all of the build-up that seems to have been placed around colonoscopies, like they're the worst thing in the world.

Here's the deal: you need to take some stuff that makes you uncomfortable for a few hours. And then it's over. And when you get the scope, you have the option of being knocked out. You wake up and it's over. You leave the office and get an Egg McMuffin and stay home from work for the rest of the day and that's it. Just deal.

Because, as I told the person I spoke with, the other option is potentially having colon cancer. So, your choice: a few hours of discomfort, or a few months or years of a lot more discomfort. I'll skip the details of the second option.

So, lymphoma patients, get your colonoscopies anyway.
Caregivers, get a colonoscopy; you know what cancer is like, and you know you want to avoid it.
Friends and relatives of lymphoma patients: get one. Don't get cancer. No fair stealing all that attention from the cancer patient in your life.

Saturday, March 2, 2013


I try to avoid discussing politics in this blog, because politics are so often unhopeful, and Lympho Bob is really about hope. But I will go there when cancer is involved.

And with the sequestration -- the automatic spending cuts to discretionary funding that started yesterday -- has a big effect on cancer.

An article in today's Daily Beast discusses the effects that the cuts will have on cancer research, at a time when research is really kicking into high gear. This will probably end up slowing things down, which is a shame, particularly because it was so avoidable.

Now, everyone else with a cause or a worry will say the same thing, and I suppose, if I'm being objective, that other causes have a point. But that, to me, is the frustrating part -- there's no conversation happening anywhere that lets anyone decide just what is important. As comfortable as I am as a watch-and-waiter, inaction bugs me when action would solve the problem.

The article, you will notice, has a distinctly Lymphoma tinge to it. The head of the Leukemia and Lymphoma Society is quoted, as are several lymphoma patients (including my pal Liz McMillan, founder of HOPE for Lymphoma, the great Facebook-based nonprofit that supplies information and  support to lymphoma patients. Friend them if you haven't already -- here's a link).

That's because the article was written by Jamie Reno, Lymphoma Rock Star. Nice to see our type of cancer getting some love.

Will anything change? I hate to be unhopeful, but I fear it won't. We're in such a divisive way right now, and I don't know why. What I am hopeful about is that some time soon, someone will break through it all and say something that will at least get our elected officials to talk to one another. In the meantime, let's hope that the breakthroughs we're already enjoying will continue to carry us through.