Talk to the Doc

The lesson for this one seems really obvious, but that doesn't mean we get it all the time.

Researchers interviewed 374 survivors of Non-Hodgkin's Lymphoma about their Health-Related Quality of Life (HRQOL) -- basically, how much their disease interfered with their "normal" lives (and I know "normal" is a funny choice of word, cause nothing is normal after that diagnosis).

Specially, they wanted to know about their physical, daily, emotional, social, and sexual lives. Did the lymphoma cause any problems to their bodies? Did it affects them at their jobs? Do they get depressed? Did it make it harder to get close to people, or stay that way?

Important questions, and probably not the kind of thing that a doctor will ask about, apart from the physical stuff. I think that's partly because they tend to be so focused on the disease, but also because it's hard for them to deal with. (There's no kinase inhibitor for emotional problems, after all.) It's up to patients to start those conversations.

Some numbers: 94% of the patients said they would start a conversation about physical problems. 82% would start one about daily problems. 76% for emotional issues, 43% for social issues, and 49% for sexual issues.The reasons they gave for not talking? Probably not surprising: Nothing can be done about it. It's not the doctor's job. They were talking to another clinician (another medical doctor or a mental health specialist, I presume).

In some ways, it's a little scary that people aren't willing to share problems with their oncologist, especially if the problems are obviously related to the lymphoma. On the other hand, there's no indication that the patients talked to someone other than a clinician. For some problems, I think it's legitimate to talk to, say, an online support group. That certainly helped me quite a bit. As much as I love Dr. R, there are questions he can't answer -- and those questions have a lot more to do with the social and emotional aspects of cancer than the physical ones. I want to know if that low-grade fever means my condition is getting worse? I'm talking to my oncologist. I want to know if it's normal to feel like people at work are treating me differently? I'm asking another patient.

Do I want people at work to avoid me? Absolutely. I kind of wish some of them would leave me hell alone. But that's not the point.

The point is, we all do better with a wide support network. Sometimes a doctor helps. Sometimes a spouse helps. Sometimes a semi-anonymous stranger on the internet can help. The bigger point is to get help when you need it. Especially when a key part of your support network isn't doing the job.

This all made me think about someone I know, a cancer survivor, who didn't tell anyone about her cancer, at least not right away. She had some valid reasons for it, as I found out later. But she only started sharing after she couldn't hold it insider any more. She started opening up to a few people, including me, and that helped. But I couldn't help but wonder if she would have been better off with different choices.

I think it's important that we be advocates for ourselves. For me, that means learning as much about Follicular Lymphoma as I can, so I can ask the right questions and understand my treatment choices.

But it's just as important to be emotional advocates for ourselves. That means surrounding ourselves with people who are going to help us, whether they are friends in our lives or virtual friends online. And if they can't help. we need to find people who can. And if we can't get rid of them, then we need to talk to them and make sure they give us what we need form them.

There's more than just a doctor involved in all of this. But as someone who is interested in us, and who has some expertise, that doctor seems like the perfect person to practice some communication skills on.

Talk to the Doc.

Dr. R Visit

I had my 4 or 5 month or so check up yesterday with Dr. R. Everything looks fine.

As usual, we do a three-part visit: I get blood work done (complete blood counts, plus LDH), he does a physical exam, and we talk about how I've been feeling. Without a scan, it's about as thorough a check of my lymphomic health as I can get.

The results: Blood work looks "perfect," as he said. My check on how I'm feeling (good -- nasty asthma this fall, but I'm still running three days a week) led to the physical exam. The last few visits, I've had some lumps on my upper right arm. Hard to say what they are -- they are kind of on the edge of the area of where the nodes are located, but they're spread out, and they don't grow terribly fast, if at all. They aren't bothering me (that is, they aren't making my arm swell, the way the nodes in my leg did, leading to the Rituxan). The only bother is that I wonder what they are. Maybe nodes, says Dr. R.; maybe collections of lymphoma cells under the skin; maybe lipomas, fat deposits under the skin. But at this point, nothing that causes alarm.I'm keeping an eye on them.

I go back in early January. He doesn't think a scan is necessary, though maybe we'll do one next year just to see how everything looks inside. Of course, he said that last year, too. At one time, I would get nervous if I went too long without a scan. I feel less anxious about it these days.

**********************

One comment about the office: I can officially say I don't like it. Over a year ago, Dr. R and colleagues private practice was taken over by Yale New-Haven Hospital. It's actually a branch of the hospital now, so when I go, I have to check into the hospital and get a bracelet and everything else. Since this has happened, my visits have been less satisfying.

Don't get me wrong -- I love Dr. R. I love the nurses and office staff. The phlebotomist draws blood and I barely know the needle is in. But lots of other stuff is just....off. My appointment was for 10:15, but my reminder call said it was for 12:00, so I had to call and get that straightened out. They didn't do blood work (which I thought was strange, and asked Dr. R to do it), so I had to interrupt my visit to get blood taken. When the nurse reviewed my history, she had the wrong pharmacy down. None of a big deal, really, but it's all different from the way it was before. I don't know if it's the computer system messing things up, or if it's human error that comes about because they have so much extra stuff to do. I've given it a year, and I don't like it.

No plans to change oncologists. Just one more thing on the road to making me a grumpy old man.

************************

But the upshot is: it was a good visit. I'm still a pretty healthy guy, for a cancer patient, and happy (and a little grumpy) about it.

Marriage and Cancer

First of all, let me express my now-annual disappointment at not being awarded a MacArthur Genius Grant. Even worse, they raised the amount given this year from $500,000 to $650,000. Frankly, I could have used both the money and the ego boost.

Even worse, there were no cancer-related geniuses named this year, no one who is showing us some new pathway to curing cancer. The closest we have is some guy who has found a way to make sure that people who need health care can get it, efficiently and effectively, while lowering costs.What the heck does that have to do with me?

So disappointing.

Meanwhile, a new study appearing in the Journal of Clinical Oncology shows that outcomes are better for cancer patients who are married. The researchers looked at data from over 700,000 people diagnosed between 2004 and 2008 with one of the ten most deadly cancers (including Non-Hodgkin's Lymphoma). The numbers are kind of startling: "unmarried cancer patients, including those who were widowed, were 17 percent more likely to have metastatic cancer (cancer that spread beyond its original site) and were 53 percent less likely to receive the appropriate therapy." They speculate it's because married patients are more likely to have someone come to the appointment with them and ask question and remember important information. Probably true.

I think you can't discount the idea that you have a support system next to you. (Ideally, anyway -- you hear horror stories of people whose spouses just shut down and stop helping, but I like to think they are rare.)

Of course, I have my own excellent support system in my wife. She keeps me sane, asks questions, remembers stuff I don't (during doctors' appointments, and at lots of other times), and generally takes care of me.

And I was smart enough to marry her.

Which, I guess, makes me a genius.

Raw Fear

Just read a nice piece from Slate called "My Leap of Faith in Medicine," by Danielle Ofri.

Ofri is a medical doctor, and a PhD in Biochemistry -- she's wicked smaht, in other words. But she never really got how fearful it can be for a patient to talk to a doctor, until her 18 month old had a minor medical procedure that required anesthetic (he had "tubes in his ears," which you parents might be familiar with). Seeing her baby lying on a table brought what she called "raw fear" to her heart, and her advanced degrees did nothing to help her.

The lesson she learned?

"When I sit with a patient now, deciding on a treatment, I still lay out the risks and benefits as systematically as I can. But then I take a moment to acknowledge the raw fear that cannot be assuaged by even the most convincing clinical data. This conversation can’t eliminate the necessary leap of faith. But at least there is some recognition of the stomach-plummeting sensation that occurs when the patient edges their toes out onto that clear glass bridge."

It's a nice reminder for physicians that sometimes we patients get irrational with our fear. A kid getting tubes in his ears is tough enough. As cancer patients, it's even worse. I want honesty, but I want some compassion, too. Some recognition that I'm scared about things. As Ofri says, that won't make it go away, but it's nice to know the doctor understands how I feel.

This has nothing to with the fact that I have an appointment with Dr. R on Thursday. Just a coincidence that the article appeared this morning.....

(Really, I have no reason to be scared. Things seem to be going well. I'll let you know on Thursday.)

Grading Follicular Lymphoma

Another thick artcile from a medical journal: "Immunophenotypic Features and t(14;18) (q32;q21) Translocation of Chinese Follicular Lymphomas Helps to Distinguish Subgroups," by a Chinese research team, to be published very soon in the journal Diagnostic Pathology.


The researchers looked at the genetic make up of different grades of Follicular Lymphoma to determine whether or not grading is helpful. In some ways, what they have to say isn't really all that new. But the way they got there is, and may have some important implications.

First, some background: Follicular Lymphomas are graded as 1, 2, or 3. Grading is a measure of, basically, how aggressive the disease is. (This is different from staging, which tells where in the body the lymphoma is occurring.) This has traditionally been a microscope issue, counting the number of large (and more aggressive) cells there are in a sample. Grade 1 and 2 are typically considered indolent, or slow-growing, less aggressive lymphomas -- not as many large cells. Grade 3 gets a little trickier. A Follicular Lymphoma graded 3A is generally thought to be indolent as well, and is usually treated as such. Grade 3B, however, while appearing to be Follicular Lymphoma, is often more aggressive, and is treated as an aggressive lymphoma, such as DLBCL (which stands for Diffuse Large B Cell Lymphoma -- it's those Large Cells that get all aggressive).

The grading scheme was developed by the World Health Organization, and is still a little controversial -- particularly the stage 3 splitting into A and B. They're still working on that one....

The article linked above tries to address this issue. Rather than looking only at the numbers of large calls, they did some funky genetic analysis, to see if there were differences on a much more "morphologic" level, to use their word (that is, looking at the form, not necessarily the behavior of the cells).

The group looked at 115 specimens from Chinese FL patients, and did some genetic testing to look for some very specific markers: CD10, a surface protein common to FL cells; BCL6, a protein commonly found in DLBCL cells; BCL2, which is thought to cause resistance to lymphoma treatments; MUM1, another protein present in DLBCL; and the t(14; 18) and q(32;q31) gene translocations (they switch places, perhaps causing Follicular Lymphoma).

In short, they looked at a lot of stuff in the cells.

What they found was a lot of stuff that distingushes the different stages.

You can see the stats for yourself, but basically, Grade 1 is more "Follicular-y" than Grade 2, which is more so than 3A. Grade 3B is the least Follicular-y of them all. That is, it contains the most DLBCL cells of all the stages, and the most markers associated with DLBCL.

As I said, I don't know if this is really news. We knew that grades 1, 2, and 3A act more like indolent lymphomas, and 3B acts more like an aggressive lymphoma. What's new is that there is morphological confirmation -- that is, it's not just a matter of behavior, but of actual cell make-up. They conclude with this: "Thus we hypothesize that FL may in fact be a heterogeneous indolent lymphoma encompassing entities with distinct molecular pathogenesis and genetic characteristics."

In other words, we might actually be talking about 4 different lymphomas here. They found that FL with the CD10 protein, for example, was more likely to have MUM1 and t(14;18) translocation. This suggests that it started in a different way, genetically, than other types. There are important implications there for how we might treat it, especially since we seem to be moving toward genetic-based treatment options.

The upshot of all of this: for now, it doesn't change a thing. But it might help focus the debate about the WHO grading classification, and that could influence the way treatment decisions are made down the line. More likely, it will help researchers focus on diagnosing and treating by distinguishing between different sub-groups of Follicular Lymphomas. This might help us figure out which treatments will work best for which patients.

A thick article with a minor immediate payoff, but promising for the future.

Cancer's Super Responders

Really cool article from Yahoo! News a couple of days ago on Cancer "Super Responders." These are patients who respond to treatment when no one else does. Researchers can now learn from these Super Responders to help further refine what we know about particular cancers, and how we can treat them.

 Up until a few years ago, the closest we could look at a tumor was through a microscope. Two cells for, say, Follicular Lymphoma, looked pretty much the same under the microscope, something like this:




And then a few years ago, we mapped the human genome. Now we can look even deeper, and see that, upon closer examination, not all Follicular Lymphomas (or other cancers) are necessarily the same.

This very helpfully answered the question, "Why do some patients respond to a treatment but other patients don't?" Well, it's because those patients actually have variations of the same cancer that aren't exactly the same. There are small genetic differences that make a treatment work for one person but not for another.

Which is where the so-called "Super Responders" come in. Oncologists used to speculate that there was something about that patient that made them respond. Now they know what that something special might be.

So now, a bunch of major research hospitals are going back and looking at old biopsies of Super Responders and doing some genetic testing to see just what made them so different. Eventually, we can catalog the differences in genetic makeup, and begin to tailor treatments to sub-classes on particular cancers.

Right now, it costs about $5000 to do a full mapping of a patient's genome, finding all of the differences between a "normal" set of 20,000 genes and the ones that have mutated.  In a few years, the process will cost less than $1000 -- not much more than a 10 mL vile of Rituxan from Walmart (with coupon).

(Yeah, I'm a little freaked out that you can buy Rituxan at Walmart -- with a coupon. Just doesn't seem right that something so amazing is so easily available....)

Anyway, in a few short years, it will be really inexpensive to get ourselves mapped, and this will 1) help researchers figure out which mutations matter for which cancers, and 2) help oncologists figure out which treatments are most likely to work.

It's pretty exciting. I'm not sure we're in for a CURE anytime soon -- still a lot of work to be done once mutations are identified -- but it's very promising stuff.

Lymphoma Awareness Day

Happy Lymphoma Awareness Day!

Smack dab in the middle of Lymphoma Awareness Month, today is the day to make the world aware of what Lymphoma is and why it's important. 

Of course, everyone here knows why it's important -- cause we have it, or love someone who does. We're plenty aware, thanks very much.

But others are not. So, even if you don't do so today, maybe take some time over the next couple of weeks to educate someone who needs it. Post the Lymphoma Research Foundation's "Know Your Nodes" quiz to your Facebook news feed, for example.

Or (if we're being more inclusive) find an online presence and "light it red" in honor of Blood Cancer Awareness Month. (That's what I'm doing with this post, in case you were wondering.)

This is our month, people. Let's make the most of it.