Thursday, May 30, 2013

New Hope for Vaccines?

Anti-cancer vaccines have a spotty history, which is too bad, because they sound so promising in theory: Remove some cancer cells, remove some immune system cells, put them together, train the immune cells to recognize the cancer cells as bad guys, shove them all back into the body, and watch the fun.

They haven't worked as well as hoped, but it seems like every failure has come with an anouncement that it tught researchers something new.

So here's the latest "something new," from Stanford: most cancer cells use the surface protein CD47 as a "Don' Eat Me!" signal. The immune system cells enounter the CD47 and leave it alone. The Stanford researchers have found that anti-CD47 antibodies can block that signal and allow an immune cell called a macrofage to attack the cell. Even better -- as it happens, the macrofage gives a tap on the should to some other, more powerful immune cells called CD8+ T cells and says "You want in on this?" And then the two work together to attack the cancer. The T cell involvement was a very pleasant surprise -- that's the cell that vaccine researchers have been hoping to spur into action.

The Stanford researchers hope to have a clinical trial in p;lace in 2014. You can read a full description of all of this at this link.

Tuesday, May 28, 2013

ASCO: Follicular Lymphoma and Rituxan

My computer is still broken, and this crappy loaner netbook is slow and dumb and doesn't let me do half the stuff I want to or need to. But it's time to soldier on.

Back to what I had planned to do almost 2 weeks ago: write about some of the research that's being presented at the ASCO conference this weekend.

ASCO is a conference for clinical oncologists -- not the researchers, but the people on the front lines who take direct care of us. So the presentations tend to be on the practical side.

I don't think anything being presented on Follicular Lymphoma is terribly ground-breaking, but there's still some good stuff there.

The one that looks most interesting to me is called "Impact of rituximab on the course of low-grade follicular lymphoma." It's got all the good stuff in there: Follicular Lymphoma, which I have. Low-grade, which I am. Rituxan, which I had. What's not to like?

The study, which was authored by a group from the University of Nebraska, looks at the Progression Free Survival and Overall Survival of patients who had Rituxan as their initial therapy (like me). The researchers loked at FL patients treated between 1981 and 2010. This would include people in both the Pre-Rituxan and Rituxan Eras (Rituxan was introduced about 1997). They split the patients into three groups: Group I (226 patients) had no Rituxan. Group II (84 patients) had Rituxan as a salvage therapy -- taken after chemo or another treatment stopped working. Group III (110 patients) had Rituxan as their initial treatment.

The basic conclusion is that PFS and OS were better (sometimes significantly better) for patients who has Rituxan, either as slavage or initial treatment. The median PFS for Group I was a little under 6 years. It was close to 10 for the Rituxan groups.

The median OS was even more encouraging. For Group I, it was about 10 years. For Group II, about 16 years. Group III hasn't been around long enough to measure -- that's a very good thing. The longest measurement they have is about 13.5 years. I would expect it to be even higher than 16 years.

Here's where I think this is all most significant: We still read that the median OS for Follicular Lymphoma is about 10 years. That's what it says on the Follicular Lymphoma Wikipedia page, which I'm guessing is the first stop for a lot of newly-diagnosed patients. Studies like this one complicate that figure in positive ways. The 10 year figure is old, but it's the best we've got, in some ways. It comes from a study that measured survival in a very comprehensive way, but before Rituxan was common. So a study like this gives us a better picture of what survival is like in the Rituxan Era.

So maybe we get a little bit of hope out of this one.

Saturday, May 25, 2013

Pan-Mass Challenge

Once again, my brother Mike will be riding in the Pan-Mass Challenge this year. He will be doing a 2 day ride this year (after a year of slacking off and doing a 1 day ride last year). This will be his sixth year riding, and he's raised over $35,000 to fund cancer research at Dana-Farber in Boston.
I assume that you, dear readers, don't need to be told how important it is to raise money for cancer research. But in case you want to send a link of this entry to some friends who might want to slide a little cash my brother's way, you can remind them that Dana-Farber has 22 clinical trials for Non-Hodgkin's Lymphoma going on right now, and 6 of them of are for Follicular Lymphoma, investigating treatments such as a lenalidomide and rituximab combination, a new vaccine, a couple of new inhibitors, and  a great big chemo/MIB/biological combo (Bendamustine, Rituxan, Bortezomib, Lenalidomide) that will impress your friends with its big words.
So even if you don't contribute to my brother (though I suggest you do), consider sponsoring some rider in the PMC. Here's the letter my brother sent out to supporters this year: 
May 17, 2013
 Dear Friends and Family:
 This year on August 3rd and 4th , I will be joining over 5,000 cyclists riding for my 6th year in the Pan Mass Challenge to raise research funds for the Dana Farber Cancer Institute in Boston.
As many of you may know from sponsoring me in the past, this cause is especially personal to me as I have had several immediate family members and close friends that have been diagnosed and treated successfully for many different types of cancers. Some, like my mother, Jean are currently patients at Dana Farber, and others, like my brother Bob, have been beneficiaries of the breakthrough research that has been conducted at the DFMC.
Since 1980, the PMC has raised over $350 million for cancer research and treatment at Dana-Farber. The majority of this impressive total is considered unrestricted support-critical, flexible funding that can be directed where and when it is needed most. As the PMC generates nearly half of the Jimmy Fund's annual revenue, every rider supports the efforts of more than 3,000 DFCI faculty and staff members as they make countless advances that have become the standard of cancer care and research.
I’m asking you to join me in the fight against cancer by sponsoring me in my ride with the 2013 Pan Mass Challenge. The doctors and researchers at the Dana Farber Cancer Institute in Boston are making tremendous progress in finding a cure for this terrible disease, but we need to continue to fund the fight and bring this to an end.
The easiest way to donate is to give on-line. The PMC site is a secure site.  To give on-line, you can go to the following link to my personal fundraising site:
Many thanks,

Thursday, May 23, 2013

Anne DeMatteo

I don't often write about people who have died, because I prefer to mourn privately, and sometimes there are just too masny good people I would have to write about. But every now and then, it seems like someone should be recogized publicly.

Earlier this week, Anne DeMatteo, a reporter and columnist for the New Haven Register, died. I never met her, though we did correspond a few times by email when she wrote something powerful that I really liked. Anne was diagnosed with breast cancer a few years ago, and the Register gave her a weekly column to write about her experiences. More often than not, she wrote about other people, often cancer patients, who were doing heroic things. She was, of course, one of those heroic people herself, describing her experiences and encouraging others.

Her funeral was yesterday, and as the Register article makes clear, she touched a lot of lives. Connecticut will miss having such an eloquent advocate for cancer patients.


My own computer woes continue, giving me limited access to the blog. I'll soon be back online full-time, I hope. I just don't know when, exactly....

Monday, May 20, 2013

Good Numbers

Now that I've gone and preached about not paying attention to numbers, I'm going to be a hypocrite and give you some of my numbers.

I got the blood work results from my annual physical. This isn't the blood work from my last oncology visit, which I don't pay attention to. This is just the basic stuff from my general practitioner.

My total cholesterol is 172 (should be under 200).
My HDL ("good") cholesterol is 48 (should be under 40).
My LDL ("bad") cholesterol is 110 (should be under 130).
My triglycerides are 71 (should be under 150).
My thyroid and vitamin D levels are healthy.

In short, I maintain my title as the healthiest cancer patient in town.


My computer is broken -- hard drive and/or operating system corrupted, so it boots up when it feels like it. I'm getting it fixed, and the loaner netbook I was given has been installing updates for the four hours. (It's currently on update #36 of 49.) My wife was good enough to let me borrow hers for a few minutes, after the kids were finished borrowing it for their own stuff.

I hope to have mine fixed, or my loaner updated, tomorrow. Or maybe Wednesday. I'll get back to allof that good cancer stuff soon. Especially ASCO commentary.

In the meantime, I'm going to celebrate my triglyceride numbers with some full-fat ice cream with sprinkles. Because I'm that kind of guy....a loner...a rebel....

Thursday, May 16, 2013

Follicular Lymphoma at ASCO

This year's ASCO Conference (that's the American Society of Clinical Oncology) will take place May 31-June 4 in Chicago. ASCO released abstracts on Wednesday night. Abstracts are the summaries of the presentations that oncologists who are attending the conference will use to determine which sessions are worth going to. And they give us some clues as to what the current research trends are.

ASCO time is always an exciting time, for cancer doctors and cancer nerds alike (Dr. Sharman says "It feels like Christmas morning and I'm 5 years old"). And for the next few weeks, we're likely to see lots of commentaries about some of the abstracts. As we get closer to the conference, we'll see lots of press releases touting the results. Dr. Sharman, linked above, discusses a session on Ibrutinib resistance -- a discovery about why Ibrutinibmay not work, or may stop working, for certain patients. He says it's a "MAJOR discovery" -- and I believe him, because he's awesome.

I will be adding my own commentary, for what it's worth. I'm no Dr. Sharman, but I've been reading ASCO, ASH, and other conference abstracts long enough to know what's exciting to me.

ASCO sessions often discuss research that's pretty close to being released in a peer reviewed journal, but they're more often kind of preliminary. Maybe a year or two into a long-term study, or results from a phase 1 or 2 clinical trial with a small number of patients. Or even the occasional in vitro study, where something hasn't even left the lab yet to be tested on real people. So even the really exciting stuff has to be taken with a sprinkling of skepticism.

But that sprinkling comes on top of a big steaming pile of hope. Because there's nothing more hopeful than imagining a big hotel full of oncologists, all feeling like 5 year olds at Christmas.

So for the next few days, I'll comment on some of the abstracts related to Follicular Lymphoma, and say why I'm hopeful. I encourage everyone to read on their own, and make some judgements themselves.

Now, time to open some presents.

Wednesday, May 15, 2013

Follicular Lymphoma's Regulator

This one seems like kind of a big deal.

Researchers at Weill Cornell were working on a new inhibitor that targets the EZH2 protein that they found to be present in a small number of lymphoma patients' cells. Developing an inhibitor, they figured, could help this small number of patients.

Well, it turns out that EZH2 isn't something that effects a tiny population. In fact, it effects Follicular Lymphoma patients, and some DLBCL patients -- perhaps a majority of patients with B-cell lymphomas.

So, yeah, kind of a big deal.

EZH2 is necessary for the body to develop a type of B-cell which, when it acts normally, helps fight invaders in the bloodstream. Its function is to allow the B-cells to keep dividing and attacking the attackers, basically letting them go nuts so the problem is solved. Normally, once the attacker is vanquished, the EZH2 goes away. Cancer, of course, occurs when cells stop shutting themselves off. So finding a way to control the EZH2 will mean being able to shut down the system,and get rid of the cancer.

The researchers have developed an inhibitor that will shut off the rogue EZH2. Even better, they think combining it with another inhibitor, one that targets BCL2, will make it even better. (No word on which BCL2 inhibitor they are using, but there are a few to choose from already in trials.)

You can read more details here, though there are a bunch of news reports online about this study. As I said, seems like kind of a big deal.

Sunday, May 12, 2013


I was emptying the recycle bin this afternoon when my daughter walked up to me, holding an empty cereal bar box. She didn't say anything to me, just held the box and looked at me, waiting for an answer to a question she wasn't asking. "Yes?" I said, emptying the recycle bin.  "This box is empty," she said, chewing the last cereal bar. "And what would you like me to do about it?" I asked her. "Wrap it in my magic towel and fill it up again?"

She gave me a typical "that's-not-funny" look and dropped the box into the recycle bin. I was referring to something she told me not long ago. When we have tacos, I put the soft tortillas in a clean dish towel and microwave them for a minute, as the instructions say. My daughter told me that when she was really little, she didn't realize I had put tortillas in the towel; she thought it was a magic towel, and when I put it in the microwave oven, warm tortillas magically appeared.

The lesson, of course, is that Dads are magical. To a kid, it's not at all out of the question that a dad could make tortillas appear out of thin air. Moms, not so much.

The great, great writer Michael Chabon has a wonderful book called Manhood for Amateurs, a bunch of reflections on being a man and a father. One of the essays, "William and I," starts out, "The handy thing about being a father is that the historic standard is so pitifully low." He tells a story about going to the supermarket with his twenty-month-old son. A woman he didn't know beamed at him, and said "You're such a good dad. I can tell." He wasn't doing anything particularly great (in fact, his dirty-faced kid was chewing dangerously on a wire twist tie). He was just there, with his kid, running an errand.

Would a mom holding her toddler at the grocery store get the same reaction? Yeah, right.

Chabon puts it even better a little later in the essay: "The father on a camping trip who manages to beat a rattlesnake to death with a can of Dinty Moore in a tube sock may rest for decades on the ensuing laurels, yet somehow snore peacefully every night beside his sleepless wife, even though he knows perfectly well that the Polly Pocket toys may be tainted with lead-based paint, and the Rite Aid was out of test kits, and somebody had better go order them online, overnight delivery, even though it is four in the morning. It is in part the monumental open-endedness of the job, with its infinite number of infinitely small pieces, that routinely leads mothers to see themselves as inadequate, therefore making the task of recognizing their goodness, at any given moment, so hard."

How can moms be magical when there's so damn much to worry about?

So I guess what I'm saying is, I want to thank my wife on this day for being the one who does all of the worrying. We balance each other well, in many ways, and know when to take turns being crazy (as someone once told us happens in good marriages). The one time I can remember the roles really reversing was soon after I was diagnosed, in a deep depression, worrying about her an the kids, and finally finding the courage to say so to her. He response was basically a stone-faced, "We'll deal with it," which is what I usually say to her in such situations. It was just what I needed.

And I want to thank my own mother, and my mother-in-law, worry-ers both, for all of their own sleepless nights.

It's easy to be magical. You tell your toddlers that the beans that you just ate were jumping beans, and that you can jump over the house, and to prove it you run out the front door, around the house, and in the through the back door, telling them that you went over the house, not around it, and they believe you, because they're small and you're a dad.

But it's mom who tells them, once all of that spectacle is over, "OK, now eat your beans."

That's the much more important job, isn't it?

Thursday, May 9, 2013

Dr. R Visit

Had my four-month follow-up with Dr. R today. Everything looks good (as I predicted).

As always, the visit is essentially a three-part check up. He does some blood work, does a physical exam, and asks me how I'm feeling.

Blood looks fine. Everything is solidly within normal range. As usual, there are a few things that will take a couple of days to analyze (like LDH and liver function), but problems with these are usually signaled by something amiss with the immediate blood tests, so I don't expect any panicked calls from him. The physical exam went OK, too. Nothing new popping up anywhere. At my last visit, I asked him to check on some bumps on my upper arm; he told me to keep an eye on them and let him know if they got bigger or if they increased. They may be slightly bigger, but only slightly, and they haven't increased. He wants me to continue to keep an eye on them. If they need to be checked, he'll send me somewhere else to do a Fine Needle Aspiration to get a small sample of the cells. [They won't let him do the FNA himself? This guy can do a Bone Marrow Biopsy and tear out a chunk of my hip, but he can't stick a tiny needle into me? What the hell?] He's actually not even sure they're swollen nodes. They might be lipomas (fat deposits, basically). No surprise that I have deposits of fat scattered about my body, if we're being honest.....

As for my own report to him about how I'm feeling, I told him I felt fine, which is true. We mostly chatted about the Red Sox, my oldest getting his driver's permit, and the like.  All in all, it was an uneventful visit.

I like Dr. R. He puts me at ease. My blood pressure was actually 10 points lower today than it was two days ago when I got my annual physical. I attribute the difference to Dr. R relaxing me, on the one hand, and my not anticipating a prostate exam today, as I did on Tuesday. [I told Dr. R that, and he offered to give me one anyway. "Too bad you weren't here last week. I had a medical student with me. We could have given him some practice." God knows what he would have said to me if my wife wasn't actually in the room with us.]

So we'll call this visit a success. The only problem (apart from the offer of a prostate exam) was the new computer system they had installed two weeks ago, part of their switch to electronic records. (Which, by the way, I am in favor of. My GP is on the same system, and knew I was going to see Dr. R today. I like having things so easy to share. I think it will cut down on mistakes and save money in the long run.) I had to answer 10 minutes of questions when I first checked in, to make sure all of the information was correct. [She seemed surprised that I knew the date of my diagnosis. I told her I celebrate it every year. That didn't surprise her, for some reason.] Then I had to answer questions from the nurse who took my vitals as she looked at the screen instead of me. ["Do you smoke?" "No." "Do you drink alcohol?" "I'm actually drunk right now...[no response, just typing]...Yes, occasionally..." She didn't even look away from the screen.]

Dr. R hates the new system. He meant to say "It's ironic that technology makes us less efficient," but it came out as "It's moronic," which we all agreed was OK, too.

Wednesday, May 8, 2013

Follicular Lymphoma: What's in the Pipeline?

The group PhRMA, the Pharmaceutical Research and Manufacturers of America (which represents the big pharmaceutical companies) issued a report last week called Medicines in Development: Leukemia and Lymphoma. Basically, it's a list of medicines currently in development for leukemia, the various lymphomas, and other blood cancers.

How many treatments are currently in development?

Over 240.

That includes 98 different treatments for lymphomas, including 7 that are listed specifically for Follicular Lymphoma (plus a whole lot more for indolent lymphomas, and more still for unspecified lymphomas, mostly in phase 1 trials).

That's pretty cool. It's impressive to see so many treatments in development in one place. More arrows in the quiver, indeed.

Now, I haven't spent too much time sifting through the particular treatments, but there are some things to keep in mind as you look at the report.

First, not all of these medicines will end up being approved for use. It's a pretty rigorous process, and it should be. There are many, many on this list that are in phase 1 clinical trials. It's not like they're going to be available next week. Only a small percentage will likely end up being approved, and it could take years before that happens.

Second, the number is inflated a little bit. A bunch of them have already been approved for one type of use, and they're in trials for a different use. For example, Bexxar and Zevalin are on the list. Zevalin has been approved as a consolidation therapy for Follicular Lymphoma, but it's on the list as "in development" because it's in trial for DLBCL and MCL, two other types of Non-Hodgkin's Lymphoma. Same for Treanda/Bendamustine. So a lot of the treatments listed aren't really "new," but they do have some potential new uses.

That said, even if 10% of these end up in the oncologist's office some day, that's still 24 more options than blood cancer patients have now.

There's also a video of a panel that discusses the report and the state of treatments in the pipeline, including a representative from PhRMA, someone from the Leukemia and Lymphoma Society, and a (multiple) lymphoma survivor. Worth a look and listen if you have an hour.


I have a 4 month check-up tomorrow with Dr. R. I don't anticipate any problems. I'm feeling good, and there haven't been any nodes popping up anyplace recently. I'll post an update tomorrow afternoon or Friday morning.

Monday, May 6, 2013

Survivors' Song

Lymphoma Rock Star Jamie Reno released a nice song on YouTube about a week ago, called "Survivors' Song."

Now, usually when I call some a Lymphoma Rock Star, it's because they do something great for Lymphoma -- advocates like of Karl Schwartz of and Liz McMillan of HOPE for Lymphoma, or authors like Betsy DeParry, or researchers like Dr. Bruce Cheson -- and so many others.  So the "Rock Star" title is usually kind of an honorary thing.

Jamie Reno, however, is an actual Rock Star, as the video makes clear. He wrote and sings the song, and features his hero Peter Frampton on lead guitar. Go to his web site, and you'll see that he's also an author and speaker, as well as a 16 year Non-Hodgkin's Lymphoma survivor.

"Survivor's Song" features some cancer survivors singing the chorus, as well as the great couplet "We have met the devil, stared him down and kicked his ass./We have tales to tell. We live for now, not in the past."

The video is linked above, but I'll just embed here, too. Enjoy.

Friday, May 3, 2013

Watching and Waiting

The excellent CLL and Lymphoma blog by Dr. Jeff Sharman had another very good post a few weeks ago, this one on Watching and Waiting.

As you probably know, I am a former watch-and-waiter, having waited for two years (to the day) between diagnosis of my Follicular Lymphoma and my first treatment with Rituxan. I guess I shouldn't say "former" -- really, unless we're being actively treated, we're all watching and waiting, looking for symptoms but trying not to obsess, and hoping that we won't need treatment. But it's kind of always there for us.

Which is why it's also known as "watching and worrying" -- or, as Dr. Sharman says, "watch and freak out." The point is, it's awfully hard to do, especially when you're first doing it. it makes no damn sense at all to have cancer and do nothing about it. Except that sometimes it does make sense.

Watching and waiting remains controversial, and lots of oncologists have moved away from it, since we now have Rituxan to provide a first treatment with minimal side effects, and a bunch more second-line treatments to try, with more on the way. Still, for some patients, the idea of holding off treatment for as long as possible is attractive, once they wrap their heads around it. As I said in a comment/response recently, I'm happy with my decision to watch and wait, 5+ years later.

Dr. Sharman's post does mention Follicular Lymphoma, though the new research he discusses is focused on CLL, another slow-growing, indolent lymphoma. Here's his list of the lessons we should learn about watching and waiting, based on new developments:

1)      Watch and wait was historically based on ineffectiveness of therapy

2)      Newer treatments have led scientists to revisit #1 but the answers are not in yet

3)      One risk of treatment is the emergence of resistance but not all patients experience this

4)      We may be able to begin measuring a patients risk for resistance based upon “subclonal driver mutations” soon

5)      To date, we do not have much insight into what sorts of therapies influence emergence of resistance

6)      Watch and wait is not crazy in appropriate patients – there may have been benefit to it for a long time that we are only just now starting to figure out.
7)    Patients should not wait too long otherwise they just feel lousy when they could have been feeling better with treatment.

You can (and should) read his full blog post here. I won't comment about the research on "subclonal driver mutations" that he mentions, because I'm not completely sure about their relevance to Follicular Lymphoma, but it's all very interesting stuff. As for the rest of the list, it raises some questions that have been around for at least 5 years. it would be great if they were finally answered, but for now, there's nothing to suggest that watching and waiting does any harm to anyone who is asymptomatic and is observing the "watching" part of things closely.