An Oncologist's Blog

Saw a link on Facebook to a relatively new blog by Dr. Jeff Sharman, a hematologist/oncologist at the Willamette Valley Cancer Institute. His expertise is CLL (Chronic Lymphocytic Leukemia), a slow-growing type of NHL (like Follicular), though it's clear he deals with patients with lots of blood cancers.

The relevant post to his blog has to do with Follicular Lymphoma, titled, "How I Approach Follicular Lymphoma (Part 1) -- Patients with Low Risk Disease."  The focus, as the title says, is "low risk " fNHL, as determined by FLIPI scores. (Fortunately, Dr. Sharman provides a helpful link explaining FLIPI scores. Just understand that the scores are used as a tool to determine treatment strategies, not as a predictor of survival. No sense in getting anyone worried here.)

I like Sharman's entry. (In fact, I like the whole blog.) It's great to see a doctor explain his decisions, especially in fairly clear language, and with links to the research he is talking about. Dr. Sharman clearly knows his stuff, and I'd be willing to bet that someone who takes the time to blog in this way is probably a good communicator with patients.

I look forward to Part 2.

Updates

I've spent the day cleaning up after a backyard camp out/sleepover/birthday party for my daughter (burnt marshmallow on the driveway, etc.) and napping (the girls needed our air mattresses, so I slept with just a sleeping bag -- on a rock, a stump, and a root, probing various parts of me throughout a sleepless night).

And while I've been away from the computer, there have been a couple of Lympho-Bob-related items in the news:

• On a slightly sad note, Robin Roberts is going to take a little time off from Good Morning America.  She's exhausted -- not surprising, given that she has a blood condition. Again, we wish her well.
• On a slightly happier note, Snoop Dogg, the Official Rapper of Lympho Bob, spend some time in Jamaica recently and has decided that he is the reincarnation of Bob Marley. He is changing his name to Snoop Lion. (There is a strong connection between Lions and Rastafarians. Google it if you want to learn more.)

With that, it's back to the Olympics.

More Olympics

Well, the Olympics Opening Ceremony was as odd as promised. Very British, very weird, kind of cool -- that seems to be the consensus. I thought the whole torch lighting was kind of neat, with all of the leaves coming together, but that's probably because I was exhausted by that point and anything would look neat. And Bob Costas didn't disappoint -- just as smart-ass-y as I had hoped.

I have been a little surprised, though, that there haven't been more cancer stories when NBC cuts away from the action to give us a human interest piece. Goodness knows there's enough human interest and drama on the court/field/water without having to break away for a short piece on some tragedy. And goodness knows there are plenty of human interest stories that involve cancer-less tragedies. But cancer is The King, isn't it? When you really want to hit them in the Kleenex, you break out some cancer, you know?

Anyway, Uptight Citizens Brigade put together a nice bit of satire called "NBC's Sad Olympics" that covers just this topic. Enjoy. (Especially the anonymous commenter who posted a couple of days ago to a 2008 Lympho Bob post called "More Cancer Humor."  Sorry to hear about your diagnosis, friend. I hope this helps a little. Good luck. And keep laughing.)

Olympics and Cancer

Ah, the Olympics Opening Ceremony is only a few hours away, and I can't wait. Apparently, rumor has it that the ceremony will feature, among other things, 70 goats, a forty-foot tall Lord Voldemorte, and Queen Elizabeth. Which sounds like the beginning of a sick joke. I can't wait to see if it's all actually true.

But, more important than all of that is that cancer is well-represented. Some of the cancer-related stories this year (I expect Bob Costas will give us more detail in his usual metaphors-as-thick-as-clotted-cream manner):

• U.S. swimmer Eric Shanteau will compete in the 100 meter breaststroke. This is his second Olympics; a few days before the 2008 trials, he was diagnosed with testicular cancer. He held off treatment for two months, competing in the trials and the Olympics, and then had surgery six days after he got back from China. Skip all of the Lochte vs. Phelps stuff and cheer for the cancer survivor instead.
• Petr Koukal, who is on the Czech badminton team, is also a testicular cancer survivor. He'll carry the flag for the Czech team during the opening ceremony. Watch for him and cheer. (Likely your only chance, since badminton is probably going to be shown at 3:00am.)
• Scottish runner Lynsey Sharp does not have cancer, but she worked last week to try to raise 10 million pounds sterling for a cancer charity. Cheer for her when she runs in the 800 meters.
• And cheer on the U.S. men's volleyball team for helping make a wish come true. They took off from Disneyland with a 15 year old boy named Tim Vorenkamp, who was competing in the USA Volleyball Boys Junior National Championship division two years ago when he was diagnosed with cancer.  Tim gets to hang with the team in London, thanks to the Make A Wish Foundation. (And he's one of a bunch of kids going to the Olympics because of Make a A Wish.)

Some great stories, especially those that involve athletes who don't give up on their dreams. Truly inspiring.

Anjoy Paul McCartney singing to all those goats tonight.

The Problem of Scanxiety

The New York Times had a nice piece a couple of days ago on Scanxiety -- the anxiety that comes from waiting for test results (like scans). The article focuses especially on laws (and voluntary practices) involving access for patients to check their own lab and scan results.

This has some good and bad parts.

The good is that patients don't have to wait for doctors to deliver the results. That's often where the scanxiety comes from  -- having a doctor say, "We should have results in three or four days," and then waiting by the phone on day three, day four, day five, calling the office and not getting a response, etc. Very frustrating. Being able to go online to find one's own results would be a big help, especially if a law required those results to be available within a certain number of days. I'm all for patient empowerment.

On the other hand, knowledge can be a dangerous thing. Having a lot of information, but not the skills to interpret it, can cause even more anxiety. A quick, hypothetical example: a newly diagnosed Follicular Lymphoma patient gets results that say he has stage 4 grade 1 fNHL. Everybody knows what stage 4 cancer means, right? Except with lymphoma, because it is a systemic cancer, stage 4 is usually as treatable as stage 2, because the Bendamustine or whatever is going to go to all of those places that cancer might exist, anyway. In other words, the treatment will hit all of the nodes, plus the liver and spleen, and other places, whether there are cancer cells present or not.

But a newly diagnosed patient won't know that. So they wait hours (maybe even days) for a doctor to call back and explain and answer questions. Double the anxiety, because of the misinformation.

I think of these online results as kind of like online college classes. Very helpful for many people in many situations, but sometimes you need to speak one-on-one, face-to-face, with a teacher, someone who can not only answer your questions, but adapt to what he or she sees in your body language, tone of voice, etc. ("Yes, I understand" seems straightforward in a student's email, but can have a hundred different meanings face-to-face.)

So, ideally, a patient will get results online and then have access to further information to help interpret. That would, hopefully, be a doctor or nurse who knows what it all means. But maybe a reliable web site (though there's no guarantee of reliability, or of a site understanding the potential complexity of a diagnosis). Maybe even a nice online support group (though, again, it could take hours or days for a reliable response; at the very least, you're likely to get some anxiety-reducing sympathy, anyway, from support group members).

So overall, I think I'm good with accessible, online results. It will likely take some time before the system is perfected, which means lots of anxiety in the meantime. But I think patient empowerment wins in the end.

Quality of Life

Psychology Today published a piece last week called "Does Your Oncologist Care about Your Quality of Life?"  The answer seems to be, in general, that No, most oncologists don't care -- at least not as much as they care about lengthening a patient's life.

The researchers asked oncologists about several scenarios involving treatment choices that produced differences in quality of life and length of life, and for the most part, doctors came out as valuing an increase of length. Which isn't surprising; what doctor would routinely say to a patient, "I could give you five years, but I'm going to recommend three really happy months"? For that matter, what patient, when faced with the choice -- at least at initial treatment decision -- won't take more time?

Of course, part of the problem with the study is that they never really define "quality of life," at least not in the report they provide of it. What does that mean? Side effects that are horrible, but only temporary (like hair loss or neuropathy)? Or something debilitating, like permanent heart damage that results in a sedentary life?  Or something worse?

I would imagine it would depend on a patient's circumstances, too. An 85 year old is obviously going to make different choices than a 30 year old, and one would hope that a doctor would take those factors into consideration.

I guess the real issue here is about communication, as the article's last sentence sums up: "If you ever face an illness forcing you to decide between living long or prospering, make sure it is your values that rule the day, not your doctor’s." The choices are ultimately ours, as patients, not our doctors'. I think I'm fortunate to have an oncologist who values quality of life -- sometimes even more than I do. There have been times when I have suggested a treatment, and it resulted in conversations about its downside, short- and long-term. His philosophy is "Do no harm," and he seems to understand that harm encompasses both the physical and emotional.

Of course, not everyone is so lucky to have an oncologist like mine. And that's where communication comes in -- and maybe a second opinion as well.

Bendamustine at ASCO (Again)

I know, I've written about this several times in the last 6 weeks, but it's worth putting out there one more time, because it's become even more clear how significant it is.

At this year's ASCO conference, German researchers showed updated results for their long-term study of Bendamustine + Rituxan vs. CHOP + Rituxan for first treatment of Follicular NHL patients. B+R results in longer progression-free survival with much less toxicity, when compared to CHOP + R. It's a big deal.

This was discussed once again in The ASCO Post, earlier this month.

When you read the piece linked above, be sure to click on the Figure on the left, too, for some cautions. Still no change in overall survival, and the results have not yet been published (and thus not yet peer-reviewed by other lymphoma experts). But that doesn't mean we can't get excited about it anyway. Even if this is the fifth time you've heard about it....