CD47

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.

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.

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.

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.

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.

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.

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?
 Ha.

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?

Hmmm.