Wednesday, March 30, 2011


This is a cool turning-lemons-into-lemonade type of story:

A woman in California named Susan Braig -- a breast-cancer survivor -- is taking old pills and tablets and other drugs and mounting them on jewelry and selling them. An artist and former grant writer, she made a tiara out of her unused chemotherapy drugs and went from there.

There's a sad downside, unfortunately: she needs to sell the jewelry to pay for medical costs leftover from her cancer treatment.

The jewelry is nice looking; you can check out the Facebook page for her company, Designer Drugs Jewelry, to see some samples. Her story has been picked up by a bunch of outlets, and she's getting some inquiries on Facebook about how to buy her stuff. She says it's only available through appointments or at craft shows. I think she might end up having to expand her availability soon....

Monday, March 28, 2011

Tennessee Basketball

My NCAA tourny bracket was pretty much toast by the end of the first weekend, so I've had very little to get excited about in the last week when it comes to college basketball.

But here's some excitement: Tennessee has hired a new coach, Cuonzo Martin, a Non-Hodgkin's Lymphoma survivor. You can't go wrong with an NHL survivor as a coach, as Missouri State has found out over the last three years.

While UT is losing a bit of a nut by letting go of Bruce Pearl, they're also losing someone with strong connections to the cancer community, who apparently changed more than one life. I'm sure Coach Martin will do his part to take up the slack.

And I hope especially that my mother-in-law enjoys this bit of good news.....

Saturday, March 26, 2011

Follicular Guidelines

The National Comprehensive Cancer Network's conference took place last week, and there were some announcements there that are important to Follicular NHL patients.

The NCCN is an alliance of 21 of the top cancer centers in the country, inlcuding Dana-Farber in Boston, Sloan-Kettering in New York, MD Anderson in Texas, and a bunch of other really good places you'd want to go if you needed cutting-edge help. The NCCN makes recommendations for clinical practioners in oncology about how to treat certain cancers, with their guidelines based on the most recent and best research available. In other words, these are the people your doctor turns to when he or she wants to know what to do next.

At their conference, they announced some changes to their recommendations to the way fNHL patients are treated. None of them is terribly surprising, at least not to someone who keeps up with this kind of thing. (Like  me. And, since you're reading, you.)

First, they recommend that Bendamustine (Treanda) plus Rituxan be given top consideration as a first-line therapy. This means that oncologists should consider it as their first option. This replaces R-CHOP chemotherapy as their first choice, based on results of a study that showed Bendmustine + Rituxan was far more effective and had less toxicity than R-CHOP. Good news for me: while I didn't have it as my first line therapy, it is what Dr. R has in mind for my next one, whenever that comes. So it's nice to have some validation of that choice.

In some ways, I don't think this will change things too much. There's still no evidence that R-CHOP was the best first choice anyway; many, many doctors went with straight Rituxan, or R-CVP chemo, or F-R chemo, or just watching and waiting, instead of NCCN's recommended first therapy choice. Maybe it will mean less use of R-CHOP initially, and more doctors saving that option for transformed patients? But R-CHOP isn't going anywhere.

A second recommendation is to give more thought to post-remission therapy with Rituxan and radioimmunotherapy (like Bexxar or Zevalin). These recommendations, too, are based on impressive research results. Rituxan maintenance, which involves periodic doses of Rituxan after a patient has received successful chemotherapy, is already pretty common, if my support group members are any indication. More significant is the recommendation for RIT consolidation therapy, which would involve receiving RIT after chemotherapy has done its job. I haven't discussed RIT in a while, but if you've been reading, you know that RIT is one of those very underused therapies, for economic and practical reasons. This recommendation might give it a little boost, and encourage more oncologists to give it a try. RIT attacks cancer cells in a way that is very different from chemotherapy; that two-front battle approach just seems to make sense.

The NCCN also (re)affirmed the usefulness of PET scans, particularly in helping to assess patients who may have transformed. Glowing nodes on a PET scan will help determine which are most active, and thus most aggressive, and thus most worthy of being biopsied to check for transformed cells.

There's also some news about Posttransplant Lymphoproliferative Disorder (PTLD), a complication for people who have received a bone marrow transplant. To be honest, I feel like a transplant is so far down the road for me right now that I've lost track of what's going on in that world. Read the link yourself to find out more.

So, as I said, I don't think of any of this is especially surprising, but it is great to get the official validation from as influential a group as NCCN. It's a reflection of some of the changes that I have been following for the last three years or so, and a nice reminder of how much things have changed for the better since I was diagnosed (and maybe of how much more they'll change in the next few years).

Thursday, March 24, 2011

The Web-Savvy Patient

I want to plug what looks like an excellent book: The Web-Savvy Patient, by Andrew Schorr and Mary Adam Thomas. I've featured Schorr before; he is a founder of Patient Power, and frequently attends Lymphoma and Hematology conferences, interviewing some of the big names in the field about their research. He does a great job of drawing out key information from them, and encouraging them to explain the implications of what they do. His co-author is an experienced medical writer. You can get a taste of their work at this link, which gives you access to a chapter of the book.

The book provides practical advice on how to use the web to find information. I can see this as being useful in two ways. The first is in finding information that patients might not know is out there, which is what the sample chapter seems to be showing. There's so much useful stuff online, it would be easy to miss it without some guidance.

But the second might be more important: as much great stuff as there is online, there is just as much that is, well, less than great. As Schorr says, lots of it is outdated, incomplete, or just plain incorrect. I can't tell you how many times people come to the support group with questions about something they've read online that is panicking them, and that they need help understanding. The web can be a great source of comfort, but it can do lots of harm as well.

I think this book will do a lot to make that situation better.

Sunday, March 20, 2011

My Musical Kids

My goodness, what a weekend we had. It was filled with great performances from my musical children.

Saturday afternoon, John and Peter performed with their respective bands at the FMI All-State Band Concert. I've written about this event before; FMI runs the bands for parochial schools in Connecticut. John was in the All-State Gala Band last year on clarinet, and again this year on oboe (one of only two oboe players in the whole FMI system of about 300 advanced kinds). Peter played in the All-State Symphonic band for the fourth year; he was third chair in alto sax. He also played in the All-State Jazz Band, the most prestigious of the four All-State bands; he was first chair for alto sax, and played two solos when the band performed "Hey Jude."

Both boys did an awesome job. I have video of their performances, which I will do my best to post soon, but my computer has been crashing when I try to upload video, and  I'm still trying to figure out what the problem is there.


On Sunday, we were just as busy.

John had rehearsal for his role as Mr. McAfee in Bye Bye Birdie; the show will run in April. Mr. McAfee is a great role for John, and was originated on Broadway by Paul Lynd, who also played him in the orginal movie version.

As that was happening, Peter was at the Harbor Yards Arena in Bridgeport. The Fairfield University men's basketball team had won their opening round game in the NIT, and were playing at home for the second round. Unfortunately, Fairfield is on spring break, so their pep band was short a few members. Fortunately, their band director is also Peter's band director, and he asked Peter to fill in on alto sax. So, my eighth grade boy played with a college band during a nationally-televised basketball game (and managed to get on TV a couple of times when they showed the band playing as they returned from commercials). It was awesome -- a perfect combination of Peter's loves, and an incredible opportunity for him.

At the same time both of those things were going on, Catherine was on the Fairfield campus, performing on piano at the Connecticut Young Musicians Festival. The festival is judged but non-competative; kids perform two pieces for two judges, who score them from 1 to 5. When the kids build up to 15 points (over at least three years), they are awarded a gold cup. Peter and John have earned theirs; Catherine should get hers this year, based on her strong performances. Here she is playing "The Night Horseman":

And this is her performance of "The Pagoda Tree"

She did a great job. (And fortunately, I forgot the video camera that crashes when I try to upload, so we managed to get video with our regular digital camera).

All three kids did a great job this weekend. We are incredibly proud of them -- their natural musical talent, but more importantly, all of the hard work they put into it.

Thursday, March 17, 2011

Happy Saint Patrick's Day

I'm posting a little late in the day -- I like to give these kind of special wishes early, so anyone checking in can see them -- but I was sipping Guinness all day, and then just as I was losing enough of my buzz to type correctly, Louisville lost their first round game in the NCAA tournament, and I started drinking all over again, because they ruined my whole bracket.

(And do note that I said I was drinking Guinness -- green food coloring in beer is just not right, no matter what the day is.)

I also spent the day sifting through various St. Patrick's Day videos and blog posts, trying to decide which one to give you. I thought about going sentimental, with a nice post from an Irish woman who came to America a few years ago, and as much as our St. Patrick's Day celebrations annoyed her for perpetuating Irish stereotypes, they still made her miss home. Then  I thought about this one, with that cranky lady from the greeting cards, but it was rude. Then there are The Muppets, and you can't ever go wrong with them -- especially Beaker, Animal, and the Swedish Chef, my three favorites.

But I'm going more wholesome: a flash mob in Sydney, Australia. A flash mob is a group that "spontaneously" comes out of a crowd and does something planned and choreographed, and then disappears back into the crowd when they're done. Two of the better known are from the group Improv Everywhere: this one in at Grand Central Station in NYC and this one in a grocery store in Queens. My kids love flash mobs.

This one just took place a couple of days ago in Sydney, and features dancers from Riverdance along with som elocal school kids. Very cool, and very appropriate for the day.

Hope you had a happy  and safe one.

Tuesday, March 15, 2011

Cancer Humor

I forgot to mention that I had my annual physical about two weeks ago. As she was trying to call up my records on her reluctant computer, she asked me some general questions about my health. I answered to each one that I was having no problems. "I'm the healthiest cancer patient in town," I told her. She enjoyed that. Always good to break the ice that way before a physical gets...physical.

(I got that cartoon from Daryl Cagle's blog.)
If you've been reading for a while, you know how much I enjoy cancer humor.

But having a sense of humor during the process -- being able to laugh at the absurdity of it all -- can be an essential part of staying sane. When I was in the treatment room, I made it a point to ask the onc nurse to put the TV on Comedy Central. There were usually horrible "comedy" movies at 10:00am as I was starting treatment, but if I took a nap, I could sleep through them and be awake for, say, The Daily Show or something else funny. And I'd laugh. Out loud. A lot. The nurses told me they didn't much laughter in the treatment room. They seemed to appreciate it.

This week, NHL survivor Sue Schroder compiled some stories from cancer patients about laughing during the difficult times, for a piece in the Grand Rapids Press. It doesn't involve much of that dark cancer humor that I enjoy, but it does provide some nice reminders that we all need to find the laughter in the worst situation. It's always there; it just needs to be found.

Sunday, March 13, 2011


I had the chance to look back at some of my old Lympho Bob entries recently. It's interesting to me how important running was when I was first diagnosed-- it was a kind of barometer of how good I was feeling. I remember very early on telling a story about how worried about me John was, and Peter telling him that he'd heard me on the treadmill one morning, and that meant I was doing fine. (I wrote up that story and submitted it to Runner's World, which rejected it. Cancer/running stories are a dime a dozen, and even a story with cute kids didn't make the cut for them.)

I've been reminded of my early cancer/running stories again as the weather has finally been better, and all but about 5 square feet of snow has melted from our yard, and all of the runners are returning to the neighborhood. I also recently saw a colleague at work who's about two or three months out of chemotherapy for Hodgkin's Lymphoma (diagnosed while pregnant -- a very brave woman), and found out that she'd recently completed a 5 mile run, in prep for a 10 mile race this summer. I was a little jealous, and a little bit silently embarrassed at how long it's been since I ran 5 miles.

Maybe that will be motivation for me to get out and do more long runs? I'm not making any promises, but this horrible winter has given me some serious cabin fever, and while the treadmill is fine, I do miss the outdoors. Spring is racing season, and I haven't run a  5k since that killer off-road race last August. I could use a challenge.

Maybe this will motivate me, too: a story about Charlie Spedding, a British marathoner and 1984 Olympic bronze medalist, who just overcame Large B Cell Lymphoma, an aggressive type of NHL. Pretty interesting life, chronicled in a book called From Last to First, which is being reissued later this year. Could be a candidate for Nodes of Gold....

Thursday, March 10, 2011

British Columbia Researchers

In the past, I've discussed some of the work being done by researchers at the British Columbia Cancer Agency. They're doing some really cool things with genetic research, looking at the ways cancer cells evade attempts by the immune system to wipe them out.

This is a brief video, posted last week, that gives a quick summary of the some of work they're doing. They kind of fly under the radar, maybe because they're Canadian (and thus all humble and stuff), but they deserve a little more recognition for the important research they've been doing.

Monday, March 7, 2011


I'm still very busy, but I hate the thought of anyone going another day without reading about cancer, so here's a link to a fascinating story about seaweed.

Researchers at an international conference on cancer research this week reported on some very early-stage study on the use of seaweed extract in battling NHL. Read the report from Science Daily here.

Apparently, a compound in seaweed called fucoidan (which sounds like a joke name, but it's real) is similar in chemical structure to heparin, an anti-coagulant. The researchers used the fucoidan on NHL cell lines (that is, not in actual people) and it was found to inhibit growth of lymphoma cells while leaving healthy cells unaffected.

The article doesn't go into much detail about why this might be the case, but the researchers seem very positive about the possiblities. They were seen as the conference wearing t-shirts that said "I am so fucoidan excited!"

OK, I made that last part up, but if they manage to get this to a phase 3 clinical trial and it gets eventual FDA approval, I'll buy a t-shirt like that for the first 10 Lympho Bob readers who ask for one.

Saturday, March 5, 2011


Okay, I know I'm mkaing excuses and not providing you with the latest in lymphoma news, but I really am up to my elbows in student papers. Plus my eldest is in four different bands practicing on Monday, Wednesday, Friday, and Saturday, my middle one is in a play that practices Tuesday, Thursday, Saturday, and Sunday (plus band on Friday and oboe on Wednesday), and my youngest is good to her father and only has dance and choir and piano during the week, leaving the weekends free. So who has time for writing about cancer?

I'll give you another interesting link instead: a look at 54 breakfast cereals that are no longer with us.

Lots of Saturday morning cartoons in there, plus some that look like ice cream cones, donuts, and other things that shouldn't be made intro cereals. My second favorite is Croonchy Stars, featuring the Swedish Chef from the Muppets.

But of course, number one in my heart will always be the cereal from lymphoma survivor and Nodes of Gold honoree, Mr T.

Thursday, March 3, 2011

Dr. Seuss

It was the great Dr. Seuss's birthday yesterday. I celebrated by reading to one of my classes -- my own small version of Read Across America.

It's been busy around here this week, so I don't have much time for anything too cancer-related. So here's a nice slide show of ten great quotes from Dr. Seuss books.