Tuesday, December 31, 2013

Follicular Lymphoma: The Best of 2013

For the last 3 weeks or so, I've been seeing lots of end-of-the year lists, proclaiming the best of, or the worst of, or the top whatever: Sports Illustrated's top sports moments of the year, for example (one too many sad Boston sports moments in there), or Ralfy's Single Malt Scotch of the Year for 2013 (an excellent choice).

I thought it might be fun to put together my own "Top 10" list for Follicular Lymphoma. Despite what the blog post title says, this isn't necessarily the ten "best"; it's not even the ten most significant. More like the ten that struck me most.

I know some of these end-of-year lists are designed specifically to get people discussing, and this one is probably no different. So feel free to argue for a different order, or to leave some things out altogether and suggest new ones.

Here they are, in descending order:

10) Approval Sought for Idelalisib/CAL 101 for Indolent Lymphoma. This could potentially be higher that #10, but I'll let you fight that out. Gilead, manufacturer or Idelalisib, submitted an early application to the FDA, based on phase 2 clinical trial data. Significant for a couple of reasons: it's the first kinase inhibitor to go through the process, and an approval could bolster other phase 2 data-based applications (and maybe speed things up for other treatments). I've been following this for a little while, because some support group folks were in the trial, and were having some great success.

9) Ibrutinib Makes Everyone Lose Their Minds with Excitement. The FDA approved Ibrutinib for Mantle Cell Lymphoma patients in November, giving it "Breakthrough Status" and approving it early. It also achieved a 100% response rate in 15 patients (10 complete, 5 partial) when combined with CHOP in DLBCL patients in August. It's currently in a phase 2 trial for Follicular Lymphoma, and its mind-loss-causing abilities seem like they might be justified.

8) GA101 plus CHOP Kicks Butt. Results of a phase 2 trial of Follicular Lymphoma patients showed that G-CHOP achieved a 93% response rate. GA101, also known as Obinutuzumab, seeks to be an improvement on Rituxan; it is humanized (no mouse parts) and glyco-engineered (designed to latch on better). A phase 3 trial seems to be justified.

7) Some Guy Stays Alive for 5 years and Thinks He's Special. I wanted to include someone telling his or her story of being a Follicular Lymphoma patient, and I thought, "Why not me?" So here's my Lympho Bob entry from last January 15, when I celebrated my 5 year Diagnosiversary. It might seem a little pompous, but it's really quite the opposite -- take it as an example of my humility and self-control that I didn't put myself higher. (And yes, I beat out the other three, because none of them are FDA-approved for FL yet. At least I did something...)

6) Learning from Cancer. OK, so my own story isn't the only one to make the list. I have to include something from Michael Buller's Thinking Out Loud blog. My all-time favorite post of his is his Top 10 Perks of Being Treated for Follicular Lymphoma -- funny, insightful, very positive and hopeful -- but written in 2012. My favorite from this year is 10 Things I've Learned from Cancer -- equally insightful and inspiring truths -- lessons that I hope any newbies learn along the way. (Bonus: there's a part 2.)

5) Transformation no so common? This one is exciting and hopeful, but worth being cautious about. Researchers found that the overall transformation rate for 600+ Follicular Lymphoma patients was under 11%, far less than the 30% that seems to be the consensus. Excellent news, but I've seen the figure anywhere from 15% to 50% of FL patients will transform. This gets #5 based on the hope it inspires, but I'm still not sure we're suddenly that low.

4) Bye Bye Bexxar. This is why it isn't really a "best of" list -- Bexxar, one of our RIT options, is not going to be made anymore. Nothing worse than our quiver being an arrow short. Jamie Reno (speaking of "best of") wrote about his own experience with Bexxar, and his disappointment, in reporting on the decision. Plus, Jamie's just worth reading. You won't find too many better writers on cancer.

3) Bendamustine Kicks Butt Even Better than CHOP.  A researcher team has been pitting  Bendamustine against R-CHOP for several years: head to head, mano a mano, B cell to B cell. After giving updates at conferences, they finally subjected their results to peer review. Bendamustine won big -- better results with fewer side effects. Probably cemented Bendamustine + Rituxan as the preferred first treatment for Follicular Lymphoma (along with Watching and Waiting, straight Rituxan, and a bunch of other things). Worthy of the bronze medal.

2) Survival Stats. When I was first diagnosed, someone wrote to me to tell me how worried he was that Wikipedia said that the Median Overall Survival rate for FL was 8 to 10 years. Those are complicated numbers to calculate and to explain, but they were fairly accurate -- for 1997. There is some suggestion that our current median Overall Survival is at least 18 years, and likely higher. Lots of reasons that number is also complicated (starting with the ways "median" and "overall survival" are defined), but the number makes my heart skip a beat in a good enough way that it's staying at #2.

1) Rituxan + Pidilizumab for Follicular Lymphoma. I'll admit to a bit of "recency bias" -- the stuff we have experienced most recently is the stuff we tend to believe the most. And since this bit of news came less than a month ago at the ASH conference, I might be giving it too high a ranking just because it's fresh in my mind. But given how excited people are about T-cells and Immunotherapy, I think this one holds the most reason to be excited. Rituxan gets a new best pal in Pidilizumab, which tells T cells to get off the couch and do their job. Extra points for being part of a larger trend, but ultimately the one on the list that gets me most excited.


So while there might be some argument about the list, there's no argument that this was a damn good year for Follicular Lymphoma. We have some pretty special stuff in the pipeline, and even if only a small percentage lives up to its promise, we're in for a bright near future.

Thanks for a great year, everyone. I hope next year is good to you all.

Sunday, December 29, 2013

Follicular Lymphoma and Genetic Profiling

Interesting and encouraging news from the journal Nature Genetics:  new research from Britain gives an even more complete picture of the genetic mutations involved in Follicular Lymphoma, including transformation.

I'll be honest -- I haven't read the full article. I don't get free access for a few months, and they want $32 for a copy of the article. I can't afford it at this time of year. Spent my last $10 on a handmade nose warmer for my wife. (Not really, but her sister did buy her one, and she loves it.)

So I'm getting my information from a report from MedicalXpress and from the abstract for the original article. But even those less-than-ideal sources show that there seems to be some really good stuff from this research.

The researchers did a series of genetic analyses of the DNA of a single patient as his or her disease progressed over time. By doing this, they were able to map out the initial genetic mutations, but also see if any new ones popped up when this patient transformed from indolent Follicular Lymphoma to a more aggressive form.

What the researchers hope is that they have found a number of mutations that can help them target FL at a number of stages: at the initial onset of the disease; when it begins to resist treatment (which happens for most patients, which is why we need to switch to different treatments along the way); and at transformation. Much of the newer research is very targeted to genetic mutations, so it's possible that different treatments could be created to deal with Follicular Lymphoma at these different stages.

In case you're wondering, the specific mutations were identified include those in linker histones (histones are the proteins that the DNA winds itself around to form a spiral shape; linker histones kind of seal of the ends of the spiral); JAK-STAT signaling pathways (this is one of those Kinase things that are, in general, an important part of FL research these days); and NF-κB signaling (a bunch of proteins that are involved with transcribing DNA, making sure it gets copied correctly when a cell divides). Plus some others. You know, just in case you were wondering. (I love you little cancer nerds who bothered to read to the end of the paragraph.)

Very important early research, but with the usual cold water:
First, it is indeed early research. They've identified the mutations. It will likely take years to find treatments that will target these mutations, and then more years to test them in trials and get them approved.
Second, this is the DNA of a single patient. We know how complex cancer is, and it is probable that these are not the only mutations that lead to Follicular Lymphoma, or resistance to treatment, or transformation. But it's a good model to follow on other patients to get a bigger picture.

So, as always, we shake off the cold water and towel ourselves off with a little more hope for the future.

Good stuff.

Friday, December 27, 2013

Immunotherapy is #1!

The well-respected journal Science named cancer immunotherapy its breakthrough of the year for all of science (beating out significant research on human cloning, among other breakthroughs). It's a nice stamp of approval for something that might be able to affect all of us in the near future.

Immunotherapy is, of course, the general name for the processes that try to get the body's immune system to fight cancer on its own. The article cites some amazing results on stage 4 melanoma patients, and perhaps more relevant for us, on acute lymphocytic leukemia (which I wrote about recently) with T-cell therapy, where the patient's T-cells (which normally attack invaders) are removed and re-engineered to recognize cancer cells, and then put back in.

The big reason, it seems, for giving the breakthrough award to immunotherapy is that it has changed the way researchers look at cancer. The focus isn't on the tumor or the cancer cells, but on the immune system. Instead of changing the cells (say, with chemotherapy), it's about changing the attack system. It's like building a team around pitching and defense rather than big bats.

Of course, immunotherapy has been in around for a while. Antobodies like Rituxan are technically a type of immunotherapy, though it works in a different way than the re-engineered T-cells. But it's the same general principal -- use what we know about the body's defenses to help the body defend itself.

As the article notes, we're still pretty early in the research here, especially with T-cells. It works amazingly well for some patients, but not all. And as for Follicular Lymphoma, we're even earlier in the research than for melanoma or ALL. And I'm still personally still impressed with cancer's ability to find ways around our attempts to fool it. So we're still a way off with all of this.

But, as I said, it's quite a stamp of approval from Science, and certainly reason for hope in the (perhaps near?) future.

Tuesday, December 24, 2013

Merry Christmas

A couple of weeks ago, some students from Berklee College of Music did a "pop up performance" at the Museum of Fine Arts in Boston, singing "O Hold Night" in the cafeteria.

It kind of has it all for me. For one thing, I love a flash mob -- people showing up unannounced and bringing some unexpected joy to others, just for a few minutes.

Plus, "O Holy Night" is one of my favorite Christmas songs. And the young man who sings lead, Mark Joseph, just nails it.

Plus, it's at the Museum of Fine Arts, which brings back some nice memories of living in Boston. On one side of the MFA is Northeastern University, where I met my wife. On the other is the Fens, and behind that, the neighborhood where my wife (then my girlfriend) lived. I spent lots of time walking behind the MFA with Isabel on the way to class.

And finally, there's Berklee, where my son spent a few days last summer at a jazz saxophone workshop. I don't post braggy videos of my kids much any more, but they still bring me just as much joy, particularly with their music.

Quite the formula for happiness.

I want to wish a Merry Christmas to all of you who celebrate it. And for those of you who don't, I wish you a day full of peace.

Sunday, December 22, 2013

Sloan-Kettering on Lymphoma

Sloan-Kettering has a series of videos, posted a few days ago, that come from an early October forum called Lymphoma: The Latest in Diagnosis and Treatment.  It's a series of 5 videos, lasting about an hour in total. I'm going to post the first one here, called "Understanding Lymphoma."

The panel consists of three of the big names at Sloan in blood cancers.

It's an interesting series, though I would caution against paying too close attention to it. It's about lymphoma -- all 75 types of lymphoma -- Hodgkin's and Non-hodgkin's, B cell and T cell, indolent and aggressive -- break it down any way you like. So if you're feeling particularly cancer-nerdy, it's a nice, but very incomplete overview of lymphomas.

Just pay real close attention, and make sure that whatever they are talking about is really relevant to your situation, and not someone else's.

If you want to focus on one segment in particular, go with "Advances in Treatment Options for Lymphoma." Even if, say, radiation isn't likely to be in your future, it's always fun to watch cancer experts get excited about future treatments.

(I know this is a short one; expect the next few posts to be short. Lots to do as the holidays speed up toward us. They'll get longer soon.)

Wednesday, December 18, 2013

ASH: Patient Power

As I predicted a couple of days ago, the website Patient Power has posted its quick summary of the ASH conference. "more excitement among blood cancer specialists than ever before."

I think the big winner at ASH was CLL -- Chronic Lymphocytic Leukemia. CLL isn't my area, so I don't follow it very closely. But it's pretty clear that the major stuff that came out of ASH was related to CLL. I'm happy for them.

But I think Follicular Lymphoma did pretty darn well, too. Andrew Schorr, founder of Patient Power, mentions Follicular Lymphoma briefly, pointing out that there are some new combinations, and more treatments that will let people live with FL for a long time as a chronic condition. He promises more videos on some of the specifics soon. In the past, that means interviews with Lymphoma Rock Star-level experts about the things that they were excited about in their fields.

Schorr's video segment is called "Optimism and Changes Ahead for Blood Cancer Patients," and while it is short on details (for now), it certainly does convey that optimism. He finishes up with this: "The word here is excitement -- probably more excitement among blood cancer specialists than ever before."

Sounds great to me.

Monday, December 16, 2013

ASH: Blood Cancer Blood Test

This is about a week old now, but it's worth taking a look at: a post-ASH press release from Sloan-Kettering touting its new blood test, to be used as a diagnostic tool for blood cancers.

The blood test will look for 400 variations in genes that signal a blood cancer. It could, for example, show that chromosomes 14 and 18 have switched places, which would indicate that the patient has Follicular Lymphoma. Those 400 different variations can detect a variety of lymphomas, leukemias, and myelomas.

Here's why it's important: because it will be used as a tool not only for diagnosis, but for treatment decisions as well. As genetic research gets more and more sophisticated, we are finding that cancers that seem the same under a microscope might actually be different if viewed on a genetic level (that is, much more closely than we can see with a simple microscope).

To give you a Follicular Lymphoma example, a key sign of FL is the 14;18 translocation, with those two chromosomes switching places and causing all kinds of problems -- it basically shuts of the bcl2 protein that tells the cells to die. However, Follicular Lymphoma also sometimes shows another switching involving the protein BCL6. Now, a standard look through a microscope will show that the cells from a biopsy look the same -- like Follicular Lymphoma cells. But only a genetic analysis will show that there is either one or two of those chromosome switches taking place.

Now imagine that we have a patient diagnosed with Follicular Lymphoma who had the new Sloan-Kettering blood test. Her doctor knows that the 14;18 chromosome is often dealt with successfully with something like Bendamustine. But imagine that this doctor also knows that early results from a clinical trial for a new treatment (let's call it Bobimab) has shown remarkable results if the patient has BOTH translocations. The doctor knows that this patient would be an excellent candidate for that trial because the test shows both translocations.

Much less guessing. Much more targeted treatments. This is what personalized medicine is supposed to be all about.

(And if anyone from a pharma company or a university lab is reading, please feel free to name your next Monoclonal Antibody after me. Bobimab is much less intimidating than what you usually name things, with all of those Vs and Xs and Zs.)

For now, the test will take 3-4 weeks to get results back. For someone with Follicular Lymphoma, that's not a big deal. For someone with a more aggressive blood cancer, treatment will have to start right away, so maybe it would be more useful for a second round of treatment. I can also see the test getting easier over time, with results coming back faster (though that isn't something that Sloan-Kettering is promising).

All in all, I think this should be bigger news than it is. All or most of this information is already available, but I think this is the first test that can detect so many variations at once. And I'm guessing the test is scalable: as more genetic information is discovered, it can be added to the test.

Very cool stuff.

Friday, December 13, 2013

Rituxan + Pidilizumab for Follicular Lymphoma

I think most of the main ASH announcements are over now. We'll have to wait for the post-ASH commentary that will likely come over the next few weeks. (I imagine Patient Power, for example, will have a wrap-up video sometime soon.)

But does that mean the Follicular Lymphoma news is over for now? Absolutely not. In the latest issue of The Lancet Oncology is a report on a phase 2 study of Rituxan and Pidilizumab that shows some promise -- good activity against Follicular Lymphoma cells, with side effects that aren't too horrific.

I'll be honest -- I don't know a whole lot about Pidilizumab. From what I can tell, Pidilizumab has been studied as a treatment for solid tumors as well as lymphomas. A phase 2 study of DLBCL patients after auto stem cell transplant was pretty successful. I believe that this is the first phase 2 on Follicular Lymphoma patients.

Pidilizumab seems pretty cool. It is, like Rituxan, a Monoclonal Antibody (which is why it has that -mab ending on the name). Just as Rituxan targets the protein CD20 on B cells, Pidilizumab targets something called PD-1, which stands for Programmed Cell Death 1. PD-1 does a job we don't want it to do: it blocks T cells from killing off the cell. So when a cell has PD-1 on its surface, it signals to T-cells that it should be left alone.

So guess what kind of cells has PD-1 on it? Yeah. Follicular Lymphoma. Grr. The FL cells have other substances within them that trigger PD-1 to block the T cells.

But Pidilizumab seems to do the job. It targets PD-1 and blocks it, thus allowing T cells to come and do their job. (It "unleashes" the T cells, as the article puts it, which sounds much cooler.)

So how successful is Pidilizumab, when combined with our old pal Rituxan? In this small phase 2 study, 29 Follicular Lymphoma patients were given the -mab combo, and 19 of them (66%) had a response, with 15 of those 19 (a little more than half overall) having a Complete Response. That's pretty good.  Rituxan has about a 40% response rate, with 11% CR. So combining the two increases the effectiveness.

More importantly, it does so with about the same side effects as Rituxan alone.

So Pidilizumab certainly seems like a keeper. Obviously, a phase 3 trial, with more participants, is going to be the next step. There's some suggestion that maybe trying it on its own, in a trial with a direct comparison to Rituxan, might also happen in the future.

Certainly something else to keep an eye on. Maybe another arrow in the quiver.

Wednesday, December 11, 2013

What Does The Spleen Do?

I guess there's an OK chance that you've actually seen this video, since it's had 500,000 views on YouTube in 2 days, but I'm posting here because I thought it was pretty funny.

It's a parody of the very popular video (over 250,000,000 views) "What Does The Fox Say?" which tries to answer, in song, the question of its title. That video/song was created by the Norwegian band Ylvis. Extremely silly, very catchy, and lots of fun.

The video I am embedding below is called "What Does The Spleen Do?" and it was created by a group from the Harvard Medical School. It also attempts to answer the question of its title -- with much less success, but with all the catchiness of the Fox song.

This is, of course, very relevant to Follicular Lymphoma; stage IV lymphomas often have spleen involvement.  Dr. R taps on mine regularly.

For the record, the spleen really is a blood filter (which is why B cells can collect there), and plays some other roles in immunity. But what's more important, after you watch the video, is knowing what it doesn't do.


Sunday, December 8, 2013

ASH: Gene Therapy

The ASH stories keep rolling in.

This one is from Yahoo! News -- a big enough deal to make it to the mainstream press. The piece is called "Gene Therapy Scores Big Wins Against Blood Cancers." The focus is not on Follicular Lymphoma, but it seems important enough, and adaptable enough, to consider it a possibility in our futures.

Gene therapy involves removing T cells and reprogramming them to go after cancer cells. A little reminder about how the body normally works: when an invader (bacteria, or a virus) enters the blood stream, it is attacked by white blood cells. There are several types, including B cells (which go nutty in ways that result in Follicular Lymphoma) and T cells, which attack the invaders in a variety of ways. (Here's a nice video that shows you more detail, if you're interested.) As long as things are working normally, the immune system can identify anything that doesn't belong and take acre of it. 

Of course, cancer is the definition of things not working normally. Cancer cells don't belong, but they are able to mask themselves in ways that make the immune system think that they do belong. And they have the nasty ability to figure out how to get around any attempts to get them to drop that mask. (Cancer cells are stupid smart.) 

Gene therapy messes with cancer cells in cool ways. T cells are removed from the patient's body and then reprogrammed in ways that allow them to get behind the mask, identify cancer cells as invaders, and get rid of them. 

This isn't a single process; there are several presentations, from different teams, targeting different cancers, that fall under the general idea of "gene therapy." It seems like one project that targets leukemia (both acute and chronic) is the longest and most successful. The Yahoo article discusses a couple of others that deal with "lymphoma," but they don't give any indication of what type (Hodgkin's or Non? Aggressive or Indolent? Can't say.) I tried to search the ASH abstracts using just the names of the universities that are mentioned in the article, to see if I could find which sessions discuss gene therapy. I couldn't find them very easily. Oh well. 

I also looked in the "ASH News Daily" newsletter that gets published during the conference, to see if there is anything in there about it. I'll look more later; I got too distracted by the "Hematology Crossword Puzzle" on page A8 of the Saturday edition. (The clue for 16 Across: "Pre-endoscopy rectal cleansing." Five letters. I wish I was kidding...Don't doctors want some vocabulary-based entertainment that gives them a little bit of a break from work, for crying out loud?)

Anyway, the Yahoo article is certainly exciting, and it's one more reason for some hope. I've got a couple more press releases and news stories that I'm looking at, that I hope will be worth sharing over the next couple of days.)

Saturday, December 7, 2013

ASH Day! Zevalin and Follicular Lymphoma

It's opening day of the ASH Conference! Woo hoo! Lots of talk about blood cancers from some stupid smart people!

(I'd normally go all Boston with that and say "wicked smaht," but yesterday I overheard two college students talking about the Honors College at their school, and one of them said, "Yeah, you have to be stupid smart to get in there." I love it. I assume he was using "stupid" as an adverbial intensifier, like "very," or "wicked." I'm going to try to find any excuse to use that phrase all the damn time now.)

Anyway, today is the opening day of the ASH conference, and that means lots of drug companies and universities will be putting out press releases over the next week to tout the results of the research that will be reported at the conference. I saw my first last night, from Spectrum Pharmaceuticals.

I like Spectrum's press release, because it mostly gives information without any spin, which some press releases give. (Of course, there's only so much spin a drug company can give without the FDA getting upset.) But Spectrum provides the session numbers and titles of the presentations that involve their products, and some basic information about the products themselves.

They highlight three treatments that are being discussed at ASH. The first is Folotyn, which is discussed as a treatment for T cell Lymphoma and for Multiple Myeloma. The second is Marqibo, also known as Vincristine Sulfate Liposome, which is already approved for Acute Lymphoblastic Leukemia (ALL), and is here discussed as part of a treatment regiment for DLBCL. I like that one of the presentations is substituting Marqibo for a the NON-Liposomal Vincristine in CHOP, which makes CHOP into CHMP, which is perfrect, because Marqibo sounds like the name of a species of monkey that my son the animal lover would be especially fond of.

Enough monkey jokes: Marqibo is like Oncovin, which is the "O" in CHOP, but it is covered in a fat-like substance that slows down how quickly it is absorbed by the body. The idea is that this may cut down on toxicity, and also allow it to stay in the bloodstream and do its job a little longer. That's what the ASH presentations are getting at.

As you know, I know a little about DLBCL, and much less about T Cell Lymphoma, ALL, and Myeloma, so I won't say anything else about those other Spectrum products. But it's the third one discussed in the press release that is relevant: Zevalin.

Zevalin is a type of RadioImmuno Therapy (RIT) that uses Rituxan, which can find CD20 markers on Follicular Lymphoma cells, to deliver a little shot of radiation directly to the cell. It's a very cool, extremely underused treatment for Follicular Lymphoma, and I'm very happy that it's getting so much play at ASH. The other approved version of RIT, Bexxar, has been effectively discontinued by its manufacturer, so we need some good news about Zevalin to keep the RIT option alive for us. Spectrum highlights seven different presentations at ASH that discuss Zevalin.

Not all of the presentations offer good news for Zevalin, but enough of them do for Spectrum top brag about them. They confirm that Zevalin works well when administered after other treatments when there is miminal remaining disease, extending the effectiveness of the initial treatment; but also that Zevalin works well as an initial treatment in indolent lymphoma, even with bulky disease (larger tumors), which seems to go against some previous studies. However, it seems less effective, and less cost-effective, than Rituxan Maintenance.

ALl of which might explain why there was less spin in the press release: kind of a mixed bag when you look at the overall results.

So I'll provide my own spin (reminding you, of course, that this comes from a Cancer Nerd, and not a medical professional): the less-successful outcomes for Zevalin doe not, and should not, spell disaster for it. If anything, they help us narrow down how and when it can best be used. That's ultimately the point of a trial -- to give us fairly narrow instances for when a treatment is likely to be more successful than another treatment. My hope is that there is enough good news about Zevalin at ASH to keep it out there as an option, maybe even to get people just a little more excited about using it. We already know some circumstances when it is useful, and I think the ASH presentations confirm that. Maybe Spectrum knows that, too, and that's why they bothered putting out a press release in the first place.

I would hate to see Spectrum take the RIT option away completely. That would be stupid stupid.

Thursday, December 5, 2013

ASH: Choosing Wisely

This comes from the American Society of Hematology itself, rather than research presented at their upcoming conference: their list of 5 hematology procedures that should be questioned. I'll say right off that none of them are directly related to Follicular Lymphoma, but it's an important list anyway.

The list was released as part of the Choosing Wisely campaign, sponsored by the ABIM Foundation. The campaign is working with medical organizations like ASH to highlight procedures that are commonly done, but not necessary. The campaign actually has two sets of lists: one for doctors (like the ASH list), and one for patients, with advice on things like when it's necessary to get allergy testing, or have a colonoscopy, or stress tests.

I think the lists are important mainly because they encourage conversation. Often, we have to make decisions as patients when we are not in a state to think rationally. And too often, doctors do things because it's the way they've always been done. The lists encourage us to question ourselves and our doctors, and make sure that whatever decisions we make are the right ones, doing more good than harm.

Now, that said, I think it would be just as dangerous to accept the advice on one of these lists without question as it would to do what a doctor says without questions. And that's the main point here -- ask questions, get information, make good decisions.

As for the ASH list, it offers five "commonly used tests and treatments to question" because they are used improperly. As I said, none deal specifically with Follicular Lymphoma, though one does deal with lymphomas:

"Limit surveillance computed tomography (CT) scans in asymptomatic patients following curative-intent treatment for aggressive lymphoma."

To be clear: these are CT scans after treatment for aggressive lymphomas (say, DLBCL) that have been treated with the intent to cure (with, say, R-CHOP as an initial treatment), when the patient has no other symptoms that would justify a scan. The reasoning behind this suggestion is 1)  there is no evidence that CT scans to look for signs of returning cancer do much to increase Overall Survival, and 2) there is some evidence that all that radiation can cause secondary cancers later on.

So where does this leave me? As an asymptomatic Follicular Lymphoma patient, not much. But what it does do is get me thinking: do I need a scan?

I haven't had one in a long time -- coming up on 4 years in the spring. Do I need one? I don't know. I don't have any symptoms -- and goodness knows I look for them all them time. No bumps that are growing. No weird fevers or chills. My blood work is always good. But part of me really wants to know what's going on inside. Rituxan gave me a Partial Response. Is it any worse? Is there an area growing that I should be keeping an eye on?

I bring this up with Dr. R pretty much every time I see him. And I'll bring it up again. And I'm guessing he'll tell me the same thing he tells me every time: "Yeah, maybe. It's been a while. We'll see how things look at the next appointment and decide if we should do one. It might be time." And then he puts me off again. Which is probably what he should do, given my lack of symptoms.

And that's why I value a list like ASH's: it makes me ask questions and start a conversation with my doctor. Even if it's a question that isn't directly about my cancer, it gets me thinking.

The danger, of course, is that our thoughts sometimes get away from us. I've been doing this long enough to get a post-it and write "ask about CT" and stick on the calendar for January when I have my appointment. Five years ago, reading questions about scans might have had me up at night wondering why I wasn't getting one and what I was missing. I don't miss those days, and I feel for those who are going through them now.

But in the end, asking questions -- and getting answers -- is worth a few hours of sleep. Education is key to survival, physical and emotional.

Monday, December 2, 2013

ASH: Follicular Lymphoma and Lifestyle Factors

OK, I'm going to start this one off with a great big warning about being very careful about what you read. The information in this ASH abstract looks really, really good to me, but we're also talking about a relatively small study (123 patients) that is retrospective (looking back at patients who were treated 30 years ago, in some cases), and it deals with statistical analysis of a group (always something to be wary of when considering the impact on your own life).

The abstract is for a paper called "The Influence Of Lifestyle Factors On Tumor-Related Markers and The Microenvironment In Follicular Lymphoma (FL): Novel Interactions and Collective Impact On Survival," and it looks at the correlation between some specific biomarkers (that is, some proteins on the surface of the Follicular Lymphoma cells) and certain lifestyle factors (specifically, Body Mass Index [BMI], diet, and smoking habits). As I said above, the study looked retrospectively as 123 Follicular Lyimphoma patients, and found some fascinating correlations:

  • Patients with high CD7 biomarker tended to eat lots of fruit, veggies, and starch, especially carotene-rich veggies.
  • Smokers tended to have lower CD7 levels.
  • More fruit was associated with higher CD10 levels.
  • High BMI was associated with higher Overall Survival.
  • High CD7 levels were also associated with higher Overall Survival.
  • High BMI and high CD7 levels combined were associated with even higher OS.
So what might we read from this?

Well, I'm writing this while I take a lunch break, pretty thrilled that my non-smoking, fat-butted/high BMI self is eating a clementine. Hooray for Lympho Bob.

What should we read from this?

Probably not quite as much. I'll say it again -- it's a small retrospective study that found some interesting correlations, but I'm guessing that are plenty of carrot-eaters out there who still struggling with their Follicular Lymphoma. Trends do not add up to individual truths. These trends will need a lot more study before they can really be considered worthwhile, and even then, even with a sampling of 10,000 FL patients, things won't necessarily hold true for individuals.

This is probably a good time to remind everyone of how ASH works, and what it all means. The ASH conference is often the first chance that many researchers get to present the results of their research and get a little feedback. At some point, they will need to subject their results to "peer review" -- having other experts in the field look very carefully at the data and determine if it's all as good as it seems. Presenting at ASH is just the first step. Not all of what we see is going to result in something that shows up at our oncologist's office and treatment room. We have to remember that.

For me, looking at ASH abstracts gives me some hope. It gives me something to look forward to. But there's never any promise of success that goes along with it. If things don't work out, that's OK -- I'm happy to move on to the next thing that might give me some hope.

So the takeaway here probably isn't all that startling. Even if we don't have a definite correlation between specific lifestyle factors and Overall Survival for Follicular Lymphoma, we all know that we shouldn't smoke, we should eat more vegetables and fruits, and we should keep our weight down. That probably helps everyone's OS, not just Follicular Lymphoma patients'.

Still, that whole BMI link to Overall Survival is kind of nice, given how much pie I ate over the last few days....