Wednesday, February 29, 2012

The Cancer Closet

I may just change the name of the blog to Lympho Mary. You'll have to excuse me for linking to, and commenting on, so many of Mary Elizabeth Williams' columns, but her writing has really been speaking to me a lot lately.

Her most recent piece is called "The Sickness Closet," and it describes peoples' attempts to keep their illnesses (not just cancer, but MS, autoimmune diseases, and others) from certain people. The reasons vary, from fear of losing a job or clients, to wanting to avoid others' pity.

I find it such a fascinating topic because it brought back so many thoughts I had early on about who to tell, how to tell, and when and why. It made me think of my wife's reaction, very early on, when people asked her what they could to help, and her replying, "Tell other people. Spread the news for me." (I didn't know she had told people that, or that she had struggled with the telling -- not until fairly recently.)

I remembered telling my own colleagues in an email. A friend suggested I let them know, because they were going to catch word of it, probably, and either (1) make into something worse than it was, or (2) keep asking me about it. So I sent an email, letting them know what I knew at that point (which was almost nothing). I gave a select few the address to this blog, and they were great about reading and responding (and, I assume, sharing news with others). It was a fairly smooth process, as cancer-related processes go. People stayed informed, and didn't bombard me too often with questions (or, worse, advice). I'm lucky to be in a job where I don't have to worry about news of the illness making me lose clients or customers.

Of course, with this blog, I hope it's clear that I'll talk pretty freely about my cancer with whoever wants to know about it. Within reason, of course -- sometimes I censor myself because I'm not sure the people who are getting the information can handle what I'm about to tell them. So I keep it short and general. If they ask more questions, I know I can give them more.

It's funny, though, that the only group that I don't tell much to is work-related: I rarely tell my students. Of course, there aren't many opportunities to do so, without it coming out as one of those TMI situations, where they get to hear about my lymph noes without really asking or wanting to know. But there have been a few situations where my cancer has come out. In one course, I've mentioned this blog, and how it fueled my interest in social media. In another class, I talked about online identity, and I gave enough information about myself that a student asked if I was a cancer survivor. I said "Yes" after a little bit of a pause. I paused partly because I started a speech in my head about the  complexities of the word "survivor," because technically, I am a survivor, but I also know that the word implies something else to many people: that I beat it. I just went with a simple "Yes."

I could have given the speech, but I didn't, because I was a little hesitant to say, "Yes, I'm a survivor, but I'm also a patient." Why not tell my students that? I don't know. Sometimes I think, like one of the people in Williams' story, that I don't want them to pity me. Other times, I think it's because I don't want them to think I'm weak in some way. (I'm at an age and of a size where students rarely try to take advantage of me, but that "new teacher" fear of losing authority is still there, and always will be, I suppose.) Part of me is afraid that students will "check out" somehow, and stop paying attention.  I don't know. I've always been careful about the details that I reveal to students, because I've learned to craft a certain image of myself for them. I don't want to upset that image (although being a little bit vulnerable, a little bit aware of my own weaknesses, is certainly part of that image).

So, once again, Mary Elizabeth Williams has given me lots to think about. It's her last couple of lines that really sum up why it's such an important topic that makes such a deep connection, probably with lots of cancer patients and survivors:

There’s so much about illness we can’t control. That’s why we care so much about the one thing we always still have power over:  the way we get to talk to you about it.

Monday, February 27, 2012

Killer Robots

This news is about a week old now, but it's fascinating enough to share anyway. Scientists  at something called the Wyss Institute for Biologically Inspired Engineering (which sounds like something from a Monty Python skit, but which is actually based at Harvard) have developed a killer robot made from DNA. How cool is that?

As explained in an article on, the robots are constructed from DNA, which makes them extremely small. Because of DNA's structure, it can be manipulated into shapes (like smiley faces -- really), in a process called "DNA Origami" (again -- really, I'm not making this up). In this case, the DNA is folded into small hinged barrels. The barrel is then filled with a chemical. The DNA can then be programmed to look for particular molecules, like cancer cells. Because, unlike some other nanotechnology particles, DNA is programmable, it can look not only for the particles, but also be set up so the molecule it finds can "unlock the barrel" and release the chemical.

The scientists tried it out on two cancer cells, filling the barrel with fragments of antibodies, which were then directed at cancer cells. The antibodies gave the cells instructions to kill themselves. (Which brings it all back to another Monty Python skit, it seems to me.) also has an article about the DNA killer robots, along with a video.

Like so much cool nanotech, this is all still in the laboratory stages. They'll try it on mice at some point, and then start planning on how to test it on people. So, the day of reckoning with our eventual Killer Robot Overlords is a while off. But it's exciting to think about the possibilities, anyway.

Saturday, February 25, 2012

Transformation Article

I have learned to be really careful about how I title posts. I can't just say "Transformation," just in case somebody gets the wrong idea and thinks I'm having problems. Hence, the title of this post.

Transformation is, of course, the greatest fear of any Follicular NHL patient. During Transformation, our (typically) slow-growing, indolent lymphoma undergoes a genetic change, and turns into a fast-growing, aggressive lymphoma (typically DLBCL, Diffuse Large B-Cell Lymphoma). DLBCL is curable, often with R-CHOP chemotherapy, or a Stem Cell Transplant, but chances are much better when it is discovered early. And that's the fear -- how will we know if it's transformed?

("You'll know," is what I'm told. Night sweats, fevers, chills, unexplained weight loss, nodes popping up all over the place. Still, you never know, you know?)

On top of it all, it's hard to tell just how common Transformation is. I've read anywhere from 30% to 50% of fNHL patients will transform at some point. There's a pretty big difference between saying 1/3 and saying 1/2 of patients will transform. But I also accept that it's hard to measure these things.

The point is, for lots of reasons, Transformation is a scary thing, and it's always hovering over our heads.

Last week, an article was published in the British Journal of Haematology called "Incidence, Risk Factors, and Outcome of Histological Transfomation in Follicular Lymphoma."  Unfortunately, I can only get access to the abstract of the article, not the full thing, but even the summary has some very interesting information.

The researchers looked at 281 fNHL patients from 1979 to 2007. They found that 37 of them transformed -- that's 13%, a nice low number. It was 15% after 10 years, and 26% after 14 years. Less happy numbers, but still better than 50%, certainly. After 14 years, there's a plateau, something I've read elsewhere, too. In other words, if you haven't transformed after 15 years, it ain't gonna happen.

More fascinating facts: patients with bulky disease (very large nodes) or extra-nodal disease (that is, lymphoma in the bone marrow or spleen, or some other organ) had a "significantly higher risk" of transforming, as did patients diagnosed before 1990.

Also, patients who watched-and-waited had a lower risk of transformation than those who had Rituxan and chemo right away.

Some of these things can be explained. Patients who watch and wait, for example, had a less aggressive form to begin with, so it makes sense that they would be less likely to transform than those who had an aggressive enough lymphoma to need chemo right away. Same with those who had bulky or extra-nodal lymphoma.

Not sure about the pre-1990 folks. No explanation that I can come up for that one. (If it's an 80's thing, it must be related to Kajagoogoo somehow.)

Of course, this is all about statistics, not individual patients. So while I fit a whole bunch of categories that would suggest I am less likely than others to transform, there's no guarantee that I won't. As far as I know, there's no way of testing cells to determine which patients will definitely transform and which won't (though there is some genetic research that's going on in that area), so it's all just guessing. And watching.

So, the upshot is, I can at least take some brief comfort in the article. It would great to see the whole thing, because I could use some explanation for some other factors. But I'll take what I can get, anyway, and continue to keep my eyes open for any changes.

Wednesday, February 22, 2012


Good news and bad news for a potential NHL treatment called Pixantrone. It's moving toward approval in Europe, but its review in the U.S. has been delayed.

I haven't written about Pixantrone before, probably because it is being seen as a treatment for aggressive NHLs that have already been treated with CHOP. Since I tend to write about Follicular NHL, Pixantrone isn't really on my radar. Still, I see this as a potential fNHL drug someday, given its characteristics.

Pixantrone was developed as an alternative to anthracyclines, a type of drug that is very effective for some aggressive NHLs (there's an anthracycline in CHOP, which is the component that makes it so effective). Unfortunately, anthracyclines also cause heart damage. This is why patients can only receive CHOP once. If it fails, they need to look to alternatives like Stem Cell Transplants.

This is where Pixantrone comes in. Cell Therapeutics is looking for approval for Pixanthrone as a post-CHOP treatment for patients who cannot have a Stem Cell Transplant. Clinical trials suggest that it can be as effective as anthracycline treatments, but with much less chance of heart damage. Right now, there isn't really a treatment that fits that category of patient.

Yesterday, the European Committee on Medicinal Products for Human Use, somewhat similar to our FDA's review committees, gave a positive opinion for conditional approval for its use for those patients. There's still one more step before it is approved.

Unfortunately, in the U.S., an application to the FDA was withdrawn by Cell Therapeutics. A review was scheduled for earlier this month, but CT asked for more time to prepare, they were denied. This seems like a temporary set back -- they'll re-submit later this year.

I don't know how the approval process will go for Pixantrone, but, assuming it will gain approval, it seems possible that it would eventually be tested on other NHL patients besides their current target. Could it potentially be used on fNHL patients as another alternative, an effective way to delay CHOP, should it become necessary later on due to transformation? Or will it be saved as a post-CHOP alternative? Hard to say, but it seems likely that, should it eventually gain approval, fNHL patienmts will have to be a possible target in some way.

We'll keep an eye on this one.

Monday, February 20, 2012

Life After Cancer

I said it recently, and I'll say it again: Mary Elizabeth Williams is the best around around when it comes to describing the cancer experience. A staff writer for, Williams is dealing with stage 4 melanoma, and writes regularly about her experiences. Most recently, she wrote about her participation in an immunotherapy trial that seems to have done its job, and her cancer seems to be in remission.

(And yes, I'm purposely hedging on all of that, because I don't want to jinx her.)

Her most recent article is called "Now What? Life After Cancer Treatment," where she discusses some of the emotional difficulties of getting positive news.

And it is hard, for lots of reasons, to get the good news. It's a new beginning, but a scary one -- you feel like you're on your own, in some ways. It's easier to be a cancer patient, surrounded by doctors and nurses and medicines, than it is to be a survivor. Williams, in her excellent prose, puts it: "There’s something pretty comforting about watching the drugs go in and knowing that they’re doing the fighting for me. This is the beginning of finding out how much my body can do on its own. It’s not exactly flying without a net, but it does represent a different and scary level of autonomy."

There's a kind of survivor's guilt, too, as you think about others that haven't been so lucky.

But mostly there's the worry that it will come back. That's the hardest part.

"Cancer is part of me now. It’s part of all of us who’ve experienced it, whether we call ourselves survivors or continue to grope, as I do, for a word that makes sense of this new place. How can I call myself a “survivor” when I will spend the rest of my life monitored and tested, a veteran who knows all too well that another deployment could be as close as the next CT scan? We cancer vets live daily with our cancer — in the scars on our bodies, the memories of the people who were kind when we needed help, and the way that we can never again take for granted what a gift it is to make plans."

I don't know if it's better or worse to have Follicular NHL, and just expect that it's coming back. In some ways, that sucks. But in other ways, accepting it and being at peace with it makes it easier.

I wish Williams well.  I want her to be around to keep writing about this stuff so well.

Saturday, February 18, 2012

Dandelion Tea

Canadian researchers are looking into the possibility that dandelion tea, made from the plant's roots, may kill cancer cells.

Pretty interesting. There are so many "miracle cures" out there -- high antioxidant fruit juice, asparagus, whatever -- that people will tout. But they're unproven. The dandelion tea, on the other hand, is being handled the right way. It has been shown to be effective anecdotally (it kinda seems to work for some people who have chronic myelomonocytic leukemia), so researchers have planned a clinical trial to test the tea in a more controlled way.

That's critically important. Maybe there are many cures in nature. Maybe we're missing out some more natural treatments that could help out without side effects. But we need to test them in a rigorous, controlled way. Otherwise, too many people rely on untested treatments to save them, when proven possibilities exist (sadly, this happened with Steve Jobs).

A cancer like Follicular NHL creates even more problems in this situation. It's slow-growing, and waxes and wanes. So maybe my all-asparagus diet just happened to come at a time when my fNHL was naturally waning, getting better on its own, temporarily. Or maybe not. Maybe it was really that yummy asparagus.
Will dandelion tea and asparagus work? Maybe. But let's find out for sure.

Thursday, February 16, 2012

Cancer Cell Communication

Science Daily has yet another interesting piece about cancer. This one is called  "New Clues about How Cancer Cells Communicate and Grow."

Basically, the tumors send out bits of RNA -- one of the building blocks of genetic material -- that sends signals to the body to create a hospitable environment for the tumor to grow. They signal the body to, for example, create blood vessels to feed the tumor.

Tricky little buggers, these cancer cells. Manipulative, too.

Some types of treatments may block these signals, so that the instructions don't go through. Others, though, will act on the cancer cells, but not block those signals.

This research doesn't necessarily lead to answers, but it does bring up some new pathways to explore. Which is all we ask.

Monday, February 13, 2012

Sh*t Cancer Patients Say

A cancer patient named Woody Roseland put together a video called Sh*t Cancer Patients Say," a parody of the very popular series "Sh*t Girls Say," which has spawned a huge number of parodies and imitators online.

The premise of the "Sh*t ____ Say" videos is simple: in about 2 or 3 minutes, the videos show quick clips of whatever group is being parodied, saying things that members of that group usually says. Some of them are spot-on funny, some are mean-spirited, most rely on (sometimes unfair) stereotypes. Few are safe for work. But a lot of them are amusing. (Like this "Sh*t Boston Mothers Say" version -- but all of that does not include my own mother.)

Anyway, the Cancer Patients version was done by an actual cancer patient, while he was in the hospital for a chemo treatment. So some of it can be a little hard to watch. But the comments below the video show that it hits home for cancer patients, with lines like
  •  "At least now I can stop worrying about getting cancer."
  • "Oh, Benadryl, how I love you...." (I could relate to that one)
  • "Wait til they hear about this on CaringBridge" (a blogging site for cancer patients -- I could relate to that one, too)
  • "Breakfast burrito was a mistake..." (that one's a little graphic....)
So watch "Sh*t Cancer Patients Say" if you dare. But understand my admiration for Mr. Roseland, a young man who is facing his cancer bravely, head on with humor.

Saturday, February 11, 2012


Interesting piece from Science Daily called "Fasting Weakens Cancer in Mice." It's a kind of follow-up to something I wrote about a while ago (maybe last year), about a scientist who had completed some lab experiments that showed that fasting might help chemo be more effective. The study described here takes it one small step further and looks at whether it would work with mice. Turns out it does.

Cancer cells don't behave like regular cells -- we know that. But one of the ways they behave differently is in response to a lack of food. Regular cells will go into hibernation, essentially, when their food supply is cut off. (This is one reason why dieting is hard -- your body fights the lack of food by forcing itself to need less food.) Cancer cells, however, are hungry little buggers, and instead of slowing themselves down, will try different things to keep their food supply going. Their strategies backfire, and they kill themselves.

So says this research. Like lots of promising research, it works great in mice, but hasn't been tried yet in real people.

But it certainly seems intuitive: fast while receiving chemo, and you protect your own cells while giving a boost (that is, helping destroy) the cancer cells. But the human body is an unpredictable thing -- even less so when there's cancer in it. But wouldn't it be great to have a reasonably simple boost to chemo?

Wednesday, February 8, 2012

Clinical Trials

A few posts back, I linked to an article by Mary Elizabeth Williams, a writer fro who is dealing with a melanoma diagnosis, and writing about it. As I said in that post, I think Williams is one of the best writers out there when it comes to writing about cancer patients' experiences, as well as cultural and social issues related to cancer.

Yesterday, I happened to catch just a couple of minutes of an interview she did on the radio show Talk of the Nation. The 18 minute interview is now available online, which I'm happy about, because I wasn't able to hear the whole interview. She speaks for a few minutes, and then responds to a few callers.

Williams focuses especially on her experience with a clinical trial, one that involved immunotherapy, and has been very successful for her.

I recommend you listed to the podcast (it packs in quite a bit in a short time), but I'll highlight a few things that stood out for me:

  • In Williams' first article about her experience, she calls herself a "lab rat," and tells a couple of stories about how she did feel like she was not treated as a person. One doctor in particular came into her room with some interns, and didn't refer to her at all, but kept discussing "the tumor." Later, when she suggested having the melanoma removed, this doctor said to her, "We need the tumor," trying to talk her out of having it removed because it would ruin the trial. It amazes me that doctors can be so insensitive, though I've certainly heard plenty of stories. I have to say that, for the most part, I've been lucky with the health professionals I've seen.
  • A caller was concerned about his wife joining a trial, thinking that the experience Williams described was evidence that doctors in trials don't care about the patients. Williams made it very clear that doctors in trials are very excited about prolonging and saving peoples' lives. I think this is a common misconception about trials. But, really, the researchers' job is to keep you alive, isn't it? Someone mentioned a trial to me recently, and said, "With my luck, I'd get the placebo." But it doesn't work that way -- not for cancer studies. If it's a comparative study, you might get the new treatment, but if you don't, you don't get a sugar pill -- you get another accepted treatment. They want to see if the new one is better than the old one. No one is going to withhold treatment and just let you die.
  • Williams also made it very clear that she asked not to see the "lab rat" doctor anymore. While a trial does involve giving up some freedom of choice, the patient is still empowered and in control of many things.  Patients should never give up the power to say No.
Finally, a caller with breast cancer discussed her reasons for not going into a trial, which were certainly valid. When Williams and the host asked how she was doing, she said, "Well, I'm still going through chemo. It hasn't been 5 years, so I'm not considered a survivor yet."

To her I say: Oh, lady, you a survivor. The National Cancer Survivors Day Foundation says that anyone who has been given a diagnosis and is still alive is considered a survivor. If you make it home from the doctor's office, you are a survivor. You've made it as far as you have, empowered yourself to make difficult decisions about your own treatment, worked with your family to make sure you have been doing the right thing -- how can you not call yourself a survivor?

I like Williams' focus on empowerment, and I wish she'd been able to bring up something like that to this caller. I'll forgive her, though, because she's such a  good writer...

Monday, February 6, 2012

(Potential) New Treatment

It's been a while since I highlighted a potential new NHL treatment (it's not like they come along every day, after all), but this one seems worth highlighting.

It's called AVL-292, and it is in the class of treatments called "Btk Inhibitors." There are a couple of others already out there, CAL-101 probably being the better known of them.

A Btk Inhibitor works by blocking development of Btk, Bruton's Tyrosine Kinase. Btk is an enzyme, and while no one knows exactly what it does, it seems to play a role in B cells' development. (B cells are a type of white blood cells that go haywire in many lymphomas, including Follicular NHL.) The Btk inhibitor works by blocking (or inhibiting) Btk, and thus disrupting the B cell's development. No Btk = no B cell = no malignancy = no cancer. 

As explained in the article, "The Leukemia & Lymphoma Society and Avila Therapeutics Enter Partnership to Accelerate Development of AVL-292 For Patients with Cell B Malignancies," AVL-292 is the latest Btk Inhibitor to be developed. What is significant from this piece is that The Leukemia and Lymphoma Society is partnering with the drug maker to speed things along. I trust the LLS, so I'm going to assume that their support is an important validation. 

A different piece gets more into the data from the phase 1 trial (very limited number of patients). I know CAL-101 has been a big help to a number of people in the support group, so I hope AVL-292 is an improvement on that somehow.

Saturday, February 4, 2012

World Cancer Day

Sorry I'm a little behind on posting. It's been a busy week, both at work and with various kids' activities.

So I'm back at a good time -- today is World Cancer Day.

The point of the day is to raise awareness. But it's not just some static awareness, like, "" and then you're done. We're not just slapping a colored ribbon on the day and calling it a success.

If you go to the link above, you'll see a video from Stand Up to Cancer and the folks from around the world who are organizing this day. They're asking you to DO SOMETHING. Something besides buying a particular brand of air freshener just because it has a pink package.

Make a pledge today to do one thing, make one change, big or small, to help prevent cancer in your life.

Quit smoking.

Walk 10 minutes a day. Get a little more exercise.

Add just one more serving of fruit or veggies every day. Slice a banana into your cereal.

Make that doctor's appointment you've been putting off.

Get a cancer screening -- a mammogram, or prostate exam, or colonoscopy. Not fun, but do it anyway.

And I know, everyone's busy. Even small changes take time and effort. Heck, I've been too busy to post a blog entry -- I understand. But two years ago, every Friday for six weeks, I would go into work early, leave by 9:00am, drive for a half hour to the oncologist, sit in a chair for four hours and drift in and out of a Benedryl haze while a monoclonal antibody was pumped into my arm, then go home, grit my teeth through a stomach ache side effect for an hour, and then take a nap. It was a full day.

And guess what? That was considered an easy, mild treatment.

Take the time now. Make the change. It will be time and effort well spent.

Have a Happy World Cancer Day. And make it a happier tomorrow.