Thursday, July 30, 2009

Research Time

OK, enough of that Jim Rice and West Virginia stuff. Back to the real news.


The European Commission approved Zevalin as a first-line consolidation therapy. This means that patients who have achieved a partial or complete remission from a treatment like chemotherapy can then receive Zevalin as a way of extending that remission.

The approval was given based on the results of what is known as the FIT Study (First-line Indolent Trial). I've written about this study before: it's a phase III trial that showed that fNHL patients went an average of 13 months of remission after receiving chemo, but that was extended to over 3 years if they received Zevalin after the chemo. That's a big deal.

In the U.S., the FDA had been expected to make a similar decision, but asked for more data from the FIT Study before giving final approval for the same use for Zevalin. The have announced the date for their final decision -- September 7. Spectrum, which markets Zevalin, has seen its shares go up on the news; it seems like FDA approval is likely, given all of the small clues that have been coming out. That's excellent news: some observers think that the approval will mean more oncologists will be willing to give Zevalin a try, and that will increase demand for more use.

Great news all around.

If you need another reminder about what Zevalin is, there's a nice recent article from that gives the basics of RadioImmunoTherapy. It includes a picture of some Rituxin growing in bottles on a shelf, and a little bit from Jamie Reno, a fNHL survivor who received Bexxar (another RIT, like Zevalin) about 10 years ago and is still going strong. Reno is a singer and journalist -- the guy who did the interview with Farrah Fawcett's oncologist, linked in Lympho Bob a few weeks ago.

(There's also a link there for "The Insider's Guide to Cancer in your 20's and 30's." I see stuff like that all the time, but you never see anything about being diagnosed in your 40's. I was six months into my 40's when I was diagnosed. Is 39 the cut-off for being "young?" I mean, it's not like I'm ordering fish sandwiches and coffee at Burger King, for cryin' out loud....)


We seem to be in one of those cycles now where there's lots of new research floating around out there. I'll give what I can over the next few posts.

Tuesday, July 28, 2009


I can't let the events of the last couple of days go by without comment:

Jim Rice was inducted into the Hall of Fame on Sunday, and, just a few minutes ago, had his number (14) retired by the Red Sox. Peter and I watched the ceremony on TV.

I wore number 14 as a kid whenever I could, in tribute to Rice. It was great to see highlights of his career; I'll post the video when it's available.

Of course, I promised cancer news during my last post, so here's why Jim Ed is a FoLB (Friend of Lympho Bob):

In 1979, Rice was named Honorary Chairman of the Jimmy Fund, and in 1992 was given its "Jimmy Award" for his years of work raising money to battle childhood cancer. He has also been very active with the Neurofibromatosis Foundation of New England.

(I added those last couple of things to keep it all cancer-related, but also to see how creative my brother could get in insulting someone who's such a great guy.)

Monday, July 27, 2009

Wild and Wonderful

We're back from a week in wild and wonderful West Virginia. It was a good week. It was nice to see all of Isabel's family, and the kids especially enjoyed their cousins. We stayed at the Confluence Resort, about 30 minutes from funky Fayetteville (actually, about 30 minutes from pretty much anything -- it's a little bit remote), and from the New River Gorge Bridge, which is what you see on the back of a West Virginia quarter.

The remoteness took a little getting used to. We drove in on the interstate, and then on increasingly smaller roads, ending with about 30 minutes of driving on "no fault" roads (so called because accidents are nobody's fault). These are paved, single-lane roads with a strip of gravel on either side. When a car comes in the other direction, you swerve to the gravel to the right so there's room for both cars. The locals generally did this at about 40 mph. Fortunately, instinct tells you to swerve out of the way, so you get used to it quickly. By Thursday, I could "drop two wheels" without raising my heart rate too much.

I was able to get a newspaper a couple of times, though it was a 30 minute drive to get one, so I waited until we were on the road anyway, and then bought one and savored it the next morning. The facty that it was day-old news really didn't matter much, since the lead stories in the newspaper had to do with the grand opening of a new Subway restaurant (I'm not making that up).

The remoteness had its good points. Without too much light from nearby towns, we were able to see hundreds, maybe thousands, of stars in the sky. And I'd say hello every morning to a mama deer and her two babies while I drank tea on the deck and wished I had a newspaper to read.

Some other highlights:

* Before we left, we had spent a night with the in-laws in Maryland, which is always nice. My brother-in-law Lee broke out his accordian, and soon John was begging for a lesson. He took to it immediately. I'm sure that's partly because he plays piano, and easily figured out the fingering. But it's also because he's a natural goofball, and the accordian is a goofball instrument. It's now on his list of musical instruments to learn, right after oboe, tied with bagpipes.

* My sister-in-law Sally was sweet enough to think of me when she saw some Coast Pacific Force soap in her supermarket, and brought me a few bars on the plane from Florida. Interestingly, that Coast soap is a different size and shape, and with different packaging, than the Coast soap my mom bought for me in Massachusetts. But it still has that great Pacific Force scent. Thanks Sally!

* We spent a full day on a whitewater rafting trip down the Upper New River. Very fun, and very exhausting -- my shoulders hurt for a couple of days afterwards. Isabel and Catherine rode in one of the eight-person rafts; John and I shared an inflatable kayak (a "ducky"), and Peter rode in his own ducky. Click here for the web site of the outfit we rafted with, and some pics of their Upper New trips (but not of us, since they accidentally erased the files). It was all great until the last set of rapids, known as "Surprise." They're class III rapids (starting to a get rough, but not life threatening). The raft made it over OK, but everyone in a ducky was thrown, including Peter and John and me. I was almost too exhausted to get back into the ducky. A helping hand from one of the guides was much appreciated.

The highlight of the rafting trip, though, was seeing a bald eagle. We saw it three times -- once from a distance, diving for a fish, and then twice more perched in trees by the side of the river. It was probably fifty feet away from us. Awesome.

* We played some Capture the Falg, some baseball, and some touch football during the week. I suffered a severe groin pull during Capture the Flag, reaggrevated during football. But it kept my mind of that shoulder injury from pulling myself back into my ducky after we went over in the rapids.

* We shared a house with our Oregon in-laws, which was great. We were treated to some incredible vegan meals, and brought home some recipes and ideas for milk- and egg-free meals for John. Biscuits with gravy will never be the same for me.

The only bad thing about staying with the Oregon folks: I don't know what my brother-in-law Tom did to provoke Catherine, but a couple of nights into the trip, she used those big green eyes of hers to convince Tom to stand up from his chair, and then she moved in behind him and gave him a wedgie. I assume Tom provoked it -- my daughter would never do such a thing on her own. (And yes, she understands now that giving a wedgie to an adult is inappropriate.)

* My sister-in-law Mary and I went for a nice 45 minute, roughly 3.5 mile run one morning, along some beautiful trails in the woods. A little slower than normal, but we were being careful to avoid mud puddles and tree roots. Running with Mary has become a nice tradition, and ensures that I get at least one run in during a vacation.

* The trip home was long -- seven hours on Saturday and again on Sunday. We listened to lots of nice music with the kids, including a tape called For the Children, which we bought before Peter was born. We probably hadn't listened to it in four years. It features a whole bunch of famous musicians singing kids' songs. We used to sing a lot of them to the kids when they were babies. Listening to it, I could almost feel Peter in my arms, eight months old, in a fuzzy blue sleeper, getting heavy as he drifted off as I sang "A Child is Born" to him. It was a nice memory.

Of course, when the tape came to Bob Dylan singing "This Old Man," I got a reminder that Peter is now 12 and a devotee of classic rock. He heard the song, turned down the volume of his iPod, and said, "Is this Bob Dylan?" Thinking we went back to his own music, I was a little surprised when he sang along with Dylan, but changed the lyrics slightly: "With a kick-knack, patty-whack, give the dog a bone, Everybody must get stoned."

* Nearing home yesterday, we stopped at a BK on the Jersey Turnpike. At 1:37pm, Isabel officially became an Old Lady. That's when she ordered her lunch: a coffee and a fish sandwhich. I think they gave her the 15% senior's discount automatically, based solely on what she ordered.

It was a good week. A bunch of physical activity, lots of visiting with family, and few reminders about cancer. I'll resume the cancer talk soon. Lots of lymphoma news to catch up on from when I was away.

Wednesday, July 15, 2009


That's what Dr. R said about my blood work yesterday -- it was "perfect." All levels of everything are within normal range, which is obviously a good sign. No new nodes popping up anywhere, either, and my general health is good. So overall, it was a good visit. He said he wanted to see me again in 3 or 4 months -- he's comfortable stretching out the time between appointments. I made one for three months. I feel fine, but I don't like to push it.


Today is my 18th mensiversary (the word for "month anniversary" -- since the "anni" in anniversary means "year," that doesn't technically fit. That's your fun fact for the day).

I was diagnosed with NHL 18 months ago today. Seems like something worth celebrating, or at least acknowledging.

It's been a strange 18 months, I have to say. I still get worried about small physical changes, though I'm thankful that my health is still good (as confirmed by Dr. R yesterday). I'm at the point now where there are long stretches that I forget that I'm a cancer patient. Sometimes I'll go a good 7 or 8 hours without even thinking about it.

(That's a joke. "Thinking" doesn't mean "obsessing.")

Of course, realist that I am, I also know that most people who watch-and-wait end up starting treatment between 18 months and 3 years after diagnosis. So in some ways, the fun is just beginning now. Of course, lots of people start treatment immediately, or after watching for a month or two. And then again, there are people in the support group who have been watching and waiting for 5 or 6 years.

We'll deal with whatever comes, when it comes. If nothing else, I've had 18 months to learn more about NHL and to feel more confident in my future.


Lympho Bob will be taking a break for a little while. Off to the wilderness, and I don't know what kind of internet access I'll have. So if you don't see anything new being posted, don't panic. It means I'm enjoying myself too much to think about having cancer. That's a good thing.

Monday, July 13, 2009


I turns out that swearing actually helps us tolerate pain. So when you stub your toe and say $%&*!, it's a normal response that helps your boo boo feel all better. Some researchers made some college students stick their hands in ice water and swear until they couldn't stand it anymore. Another group did the same, but said a non-swear while they were doing it. The swearing group lasted longer. The swearing comes from the emotional part of the brain, not the language part. Apparently, swearing triggers an aggressive flight-or-fight response or something. I mostly enjoyed reading about it because they messed with college students, which is always fun. (I'm sure they paid them to participate, but my boys would have done it for free if it meant they got to swear for a while, with an adult's permission.)

I'll keep all of that in mind tomorrow when I get some blood drawn. I have my 3 month (give or take a week) appointment with Dr. R.

I don't expect any big surprises. I feel fine -- in fact, I've been through the longest "feeling fine" stretch I've had in a while. Once I had that MRI a couple of months ago, and that miraculously ended my dizziness, I haven't had any big complaints. At least, I haven't had any complaints that I couldn't explain (like a touch of swine flu). That wasn't the case for the first half of 2009.

I always get a little tense for a few days before an appointment with Dr. R, and start to wonder if that stomach rumbling was the sushi or some other problem, or if that bump is a node popping up or just a bump. But the hot spot of nodes near my hip bone hasn't grown any, from what I can tell, and in fact might be a little smaller. Dr. R might find something on a physical exam, or my blood work might raise a flag, but my guess is that he'll pronounce me "stable."

I'll let everyone know late Tuesday or early Wednesday.

Of course, if he hits my knee too hard with that little rubber hammer, I'm swearing like a trucker.

Friday, July 10, 2009

Scotland and Running

I think I can tie all of these random bits together.

First off, my running has slowed. I seem to have Plantar Fasciitis, an inflamation of the tissue on the bottom of the foot. My symptoms are classic (especially pain in the instep first thing in the morning), and the checklist for those who are vulnerable to it is so accurate -- men over 40; heavier runners; those who have switched from a softer surface like a treadmill to a harder surface like asphalt; those who have been wearing less-supportive footware like flip flops -- it's almost like the person who wrote the list has been hiding in our bushes and watching me for the last three weeks. The condition flares up when the connective tissue that runs from the heel to the toes gets tight, which happens especially overnight when the foot straightens, so it hurts like heck in the mornings, which is when I usually run.

I'm doing some stretching and massaging and wearing shoes with arch support, so it's been better over the last few days, but I'm still taking a short break from running. We'll see how I feel next week. For now, I've been biking again. I need to be all better for the the Hope is Coming 5k in a month; it's a benefit race for the new Cancer Center at Yale-New Haven Hospital.


Totally different subject:

John is in soccer camp this week, and Wednesday at the camp was "Wacky Wednesday," with the kids encouraged to dress wackily -- mismatching socks, dyed hair, whatever. John decided he wanted to wear a kilt. It rained Tuesday afternoon, so Isabel got some generic tartan material (though it's kind of close to our clan's tartan), and made him a kilt. I made him a t-shirt fashioned after one sold on the Scottish National Football Team's website. He looked awesome.

The shirt says "Scotland the Brave," the name of a well-known bagpipe tune. Hard to see in the picture, but on the kilt is a claymore kilt pin, a small sword with the clan crest.

Alas, he ended up not wearing the kilt for the camp -- even John has limits with things that might embarrass him -- but he's been wearing it around the house, walking up behind us and saying in a bad Scottish accent, "Aye lad and lassie, it's not a skirt, it's a keeeelt."

But he's enjoying himself, and that's all that matters.

So, to tie all of that together, a story of a Scottish man running:

"A Scottish man slammed the previous world record of running 227 feet with [his] body set on fire by sprinting 259 feet. Keith Malcolm, from Aberdeen, succeeded in his second attempt to break the record after he fell 40 feet short of the record in his previous attempt in May. The amateur stuntman ... wore eight layers of protective clothing, including four layers of fireproof undergarments, a Formula One fireproof jacket and three overalls to avoid any harm."
Read the whole story here.
What, you want a lymphoma connection, too? The nutty Scot set the record in an attempt to raise money for cancer research.
There -- happy now?

Wednesday, July 8, 2009

Zevalin Update

Well, we had hoped that sometime this week, the FDA would have approved Zevalin as an initial treatment for NHL. Unfortunately, the decision has been delayed.

Right now, Zevalin is not approved for use as a first-time treatment for NHL; only after other treatments have failed can a patient try Zevalin. It's most often used (from what I can tell) as a kind of "last resort," after a failed stem cell transplant. Most often, but not exclusively. I wrote a few weeks ago about a woman named Betsy from the support group, who has written a book about her experiences with NHL. Her two attempts at chemo were unsuccessful, and then tried Zevalin, and has been in remission for almost 5 years.

Anyway, the FDA is considering an application for expanded use of Zevalin as a first treatment, before Rituxin or chemo or anything else. Clinical trials have been successful.

The FDA has asked for additional data from the trials. While it's not the best news (which would have been FDA approval, of course), it isn't the worst news, either. They aren't asking for additional clinical trials, just more data from the trials that have already been conducted. From what I understand, that's sometimes the case when the FDA is writing up the full prescribing label, so approval may come soon. Keep your fingers crossed.

The brief news story about Spectrum, the company that markets Zevalin, is here, but I think I've probably given you way more than that story....

Monday, July 6, 2009


I have some lymphoma-related stuff -- exciting research -- to share, and I will soon, but I just found out that today is Sylvester Stallone's 63rd birthday, so I need to give a quick shout out to him, because he's awesome. The original Rocky remains my favorite movie of all time, and I've loved so many more of his other movies, good and so-bad-it's-good, over the years.

This will be, like, three straight non-cancer blog posts, so I'll try to relate some Stallone stuff to lymphoma, just to "keep it real."


Of course, the best thing about Stallone, lymphoma-wise, is that he introduced the world to Mr. T, lymphoma survivor, featured in Lympho Bob's Nodes of Gold. Here's a clip of Mr. T in Rocky III, set to "Eye of the Tiger."


I have to say how much I appreciate my wife's patience with me when it comes to Rocky. She will (though a little reluctantly) act out scenes with me from the Rocky series. One of my favorites is in this clip, which I like to act out when Isabel and I are standing on a beach. Go ahead to about 2:15, when Adrian lists all of things they have that that can be replaced, and asks Rocky for the truth, and he tells her, "I'm afraid! For the first time in my life I'm afraid!" We act that one out a lot. It's some great acting, and some even better tight shorts and tube socks. Stick around for the training montage (though Isabel and I don't act that out).

I act out this one even more often, usually when Isabel is taking a nap and I need to wake her up. In the scene, which happens the night before his first fight, Rocky sits on the bed as Adrian sleeps. Rocky admits to her that he knows he can't beat Apollo Creed. He gives a little speech about it. At that point, Isabel is usually awake enough to join in, and says Adrian's line, "So what are you going to do?" Rocky lies down (and so do I) and explains that he just wants to go the distance. (Can't find the whole scene, which is a sdhame -- just this small piece of it.)

I suppose those aren't exactly lymphoma-related, but they're nice life lessons, and really, isn't that what we have to thank Stallone for?


Of course, those of you who are Facebook friends of mine know that I use this photo of Stallone from Rocky Balboa as my image.

I use it partly because I don't want my students to see my pitcure on Facebook and use it in ways they shouldn't (I've heard too many stories of that happening), but also because most days I feel like a 60 year old palooka. Especially after a run, it seems.

Finally, Stallone's career is so up-and-down (Oscar nominee, then named Worst Actor of the Century by the Razzies, then wins acting awards for Cop Land, then makes a movie like Rambo 4 -- that it's kind of like the waxing and waning of Follicular NHL.
OK, that cancer connection is stretch, but still -- you know you love Stallone, and there's at least one movie in this body of work that you'll watch, guiltily, on a rainy Saturday afternoon when you find it whille flipping through channels when there's nothing else to do. What finer tribute is there?

Saturday, July 4, 2009

Happy 4th of July

I'm a little late with a post, I know. We've been busy relaxing.

I finished my summer class on Thursday, and we spent Thursday afternoon, then all day Friday, at the pool club (joining was a good decision for us). We leave early and return tired, and I don't usually feel like posting. We spent some of today at the pool, too, enjoying the holiday festivities -- until Catherine dropped a five pound bocce ball on her hand and ended up with a purple finger (but no other damage, thankfully). Then Peter and John beat me at bocce, so I demanded we leave.

To take Catherine's mind off of her finger, we took the kids to see Up, which we all loved -- the kids for the dog-related humor, and Isabel and I because it's a very sweet story. We ended the day with hot dogs, hamburgers, and ice cream.

I could easily spin the day as something quintessentially American (playing bocce and swimming at the pool club are tributes to the immigrant experience and achieving the American Dream, respectively). But mostly it was just a nice day with the family.

To celebrate America's birthday, I'll offer you again the Declaration of Independence, as I did last year. I try to read it every year on July 4th.

Read it yourself here, or hear it read to you here.

I've been reading a book called Through Dark Days and White Nights, by Naomi Collins -- a gift from my mother-in-law. Collins writes about her experiences living in Moscow, first as a graduate student in the 60's, then in the 70's when her husband worked in the U.S. embassy, and finally in the 90's when her husband was ambassador to Russia. It's a fascinating book, partly because Isabel was in Moscow in the late 80's, and Collins' story reminds me of some of Isabel's experiences. I don't want to get all "Cold War" on you, but it's amazing to read about the differences in the way other people live (and are forced to live). I know living in another country for 10 months made me appreciate lots of things that make being an American a great thing, despite our imperfections. We all need to appreciate them more, and not take them for granted, or let anyone take them from us.

(And no, Mom, I'm not talking about Cool Ranch Doritos and Funny Bones snack cakes, though I thank you again for having them waiting for me when I got off the plane.)

So I hope you celebrated America's birthday appropriately today. Not like this guy did. (Creative editing aside, it's still not what I'd call a "fitting tribute.") I hope it was more like this -- celebrating with your peeps.

Happy 4th.

Wednesday, July 1, 2009

My New Favorite Show

I have a new favorite TV show:

Man vs. Cartoon.

Those of you who know me well won't be surprised.

The show is about a group of engineers, scientists, and technicians in New Mexico who examine the various devices and schemes that Wile E. Coyote used to try to catch the Roadrunner (things like rocket-powered roller skates and catapults that launch anvils -- standard stuff available from the Acme Catalogue), and then use their expertise to improve upon those devices so they might actually be used in real life.

It's amazing stuff. I can't decide what I love most: (1) That anyone would take Warner Brothers cartoons so seriously; (2) seeing how happy they are when their ideas actually work; or (3) how seriously the peple on message boards take all of this.

The only down side is that it's on the TruTV network. I have it on my system, but some of you probably don't. You'll have to be content with videos from their web site (see the link above) and on YouTube (like this one, where they try out the coyote's swinging dynamite plan -- the big finish is here).

I'm no engineer, but I can fully appreciate their excitement over it all.

No real connection to cancer with this. [And I've erased three different sick cancer-related comments, so you should know how much I respect you all.] Just a suggestion for summer viewing now that Idol is done for a while....