Friday, February 27, 2009

Scan Results

Well, I guess the summary for this visit is: No surprises.

As I said earlier this week, I've been able to feel that the nodes near my left hipbone are a little larger. The PET scan confirmed that. There's one that measues about 3.2 centimeters -- about an inch. That's not quite double its previous size, but it's certainly larger, maybe 75% bigger. Again, though -- no surprises to me.

There's a little activity in one node under my arm, but that's been there for awhile, and wasn't changed much on this scan.

So things seem to be progressing a little more than they had been. Nothing that's hugely worrisome to Dr. R -- not worrisome enough to start treatment right away. He recommends we continue to watch and wait, which I'm fine with. I'll go back again in a month for blood work and a physical exam, and then we'll do another CT or PET scan a month after that, if it seems necessary. And we'll evaluate from there.

As far as the treatment plan goes, it's still the same plan. We'll try Rituxin on its own, and see how that works, and then decide from there if we need to try something else. He's conservative in that way, which I appreciate. I'm still not showing any B symptoms, so he's not planning to rush into anything too harsh if it isn't necessary.

I'd call it a good visit, overall. Keeping in mind that this cluster of nodes might very well shrink again on its own (such is the unpredictable nature of follicular NHL), I'll just continue to monitor how I feel.

Of course, I'll keep giving you updates.

Wednesday, February 25, 2009

The scan

Interesting story from USA Today: "Cancer Patients Who Do Research Get Newest Drugs." The title is pretty much what the article says: patients who take the time to do research about the latest developements in treatments are more likely to have them prescribed. Sometimes they're even prescribed off-label -- drugs that are approved for advanced cancers are given for earlier stages.

Which is why I pay so much attention to these things. I need to be an advocate for myself. I trust Dr. R a lot, but I want to make sure he's thinking about everything he should be thinking about. (In my humble opinion.)

I also do all of that research because I'm a big nerd. But that's another matter entirely.


The scan went OK yesterday.
It was indeed a PET scan, not a CT. I hadn't had a PET since last April, apparently (I haven't gone back through the blog archives to confirm, but that seems about right). The PET is more involved than the CT. I had to drink my Barium milkshake and then lie still for an hour, calming my metabolism so that only the cancer cells would show up on the scan as being active. Then I was in the tube for about 30 minutes with my arms stretched out behind me. Once again, my shoulders fell asleep and I spent the half houring fighting intestinal distress. But overall, it was alright.

As she was preparing to put an IV line into my arm, the PET technician asked how my veins were. "Excellent," I said. "My excellent veins are one of the few things I really have going for me right now." So I got a little bit of a laugh, anyway.

I'll see Dr. R on Friday for the scan results, unless he calls before then. From what I remember, CT results come in pretty quickly, but PETs take a little longer to read and analyze.


My online support group's web site has been down for a couple of days. Apparently, the owners were doing some kind of software upgrade.
As of this writing, I still can't post anything, but I can read what others have already written. Which means I can't share stories of my intestinal distress with others who have been there. It seemed like I was stuck with telling you, but I decided I'd hold off. I gave my brother a little bit of it on the phone last night. That satisfied my need to chat.

Monday, February 23, 2009

Cool Story (and update)

I thought this was a really neat story:

It was published in the Baltimore Sun recently. It's written by a volunteer who takes stem cell and bone marrow transplant material across the country and even across the world.

Stem Cell Transplants come in two varieties -- "auto," which means the patient's own stem cells are removed and then reintroduced after heavy chemo (one hopes) has wiped out all of the cancer; and "allo," which means a patient must find a match and then have the new cells from the donor introduced after the chemo. Sometimes, the patient can get an allo stem cell match from a family member. Otherwise, they need to go to an international stem cell donor directory to find one. There are about 5 million people on the registry waiting to help.

The author of the story tells some tales about the problems of traveling (it's a story from the Travel section of the newspaper), but it does its job of publicizing how important these couriers are.

Read it here.


Peter was in a regional spelling bee yesterday. He won his school's 6th grade spelling bee, so he went to the regionals. Unfortunately, he lost. If he'd won, he would have gone to the state bee.

He came in 5th place, which was very good, but he was disappointed. He knew the word that he missed.

To give you a sense of how hard the sixth grade words were: the 4th and 5th grade bees both lasted over an hour. The 6th grade was just under 15 minutes. Peter was knocked out in the 4th round, and the 4th, 3rd, and 2nd place finishers all got knocked out immediately after him.

We were there for the whole thing, including the 4th and 5th grade bees. It all took a lot longer than we expected it to, and sittiong around for two and half hours probably didn't help the sixth graders. John fell asleep for a half hour. We got Catherine a snack -- a six pack of Oreos. She ate the cookie parts and sculpted small animal figures from the creme filling, and played with them to keep herself busy.

Which was disgusting.


I go for my scan tomorrow.

I thought it was going to be another CT scan, which takes about 5 minutes, but I looked at the instructions again, and it says it's a PET scan, which means 30 minutes in the machine, plus an hour of sitting around without moving while the radioactive barium milkshake makes its way through my veins. Fun times ahead.

As with my previous scans, I have no idea what to expect for an outcome. I feel pretty good overall, though I've had one nagging illness or another since New Year's Eve, so it's hard to know now whether I'm really feeling "normal." The cluster of nodes near my hip that's been swollen for a year seem a little more swollen to me, but it might be a reaction to lingering illenesses, or it might be the lymphoma, but not enough to worry about.

Basically, it's all just the usual pre-scan anxiety.

Whatever will be, will be. I'm prepared for whatever the results are. As I've said before, there's really nothing they can say to me that will be a shock at this point.

I'll have results in a few days when I hear from Dr. R. I see him on Friday, but he's usually pretty good about calling with results once he gets them.

Friday, February 20, 2009

Cancer Treatments -- Old News

Yahoo! News, MS-NBC, and some other news outlets released an Associated Press story on Monday about how cancer research is becoming "personalized." Advanced colon cancer patients, for example, are now required to get a genetic test before being treated with certain chemotherapy drugs to determine if the drugs will actually work. The $300 test might save $600 million every year by not giving unnecessary drugs to colon cancer patients.

You can read the full article here.

Of course, the most interesting part of this "news" is that you read about personalization strategies right here -- twice -- in the last couple of months.

I'll bet you didn't realize just how cutting edge the Lympho Bob blog was, did you? You know about stuff weeks, even months, before the mainstream media picks it up.

Seriously, though, it's just more encouragement for me, not just because of what this article says and what it means for my own future treatments, but also because I'm comforted to know that I'm pretty up on what's going on out there. Makes for more informed decisions when the time comes.

Tuesday, February 17, 2009


We can now see maybe 85% of the grass in our yard -- just a few more patches of snow and ice to go. Played some ball with Strudel today until she got too muddy. Looking forward to the crocuses popping up pretty soon.

Peter and I are looking forward to warmer weather so we can get back to riding our bikes on Saturday mornings. The Farminton Canal Trail, a rails-to-trails project in our town and others nearby, has done some extending in the last year. We've been able to go north for quite a ways, maybe 15 miles, up into Cheshire. Now the trail is being extended south, so it will go through New Haven down to the waterfront. It's been slow to expand through New Haven, because of property rights and other issues (for example, the trail had been slated to go under the FBI branch office building -- not a good idea).

Peter is excited about being able to ride in the opposite direction on the trail, but my guess is that he'll be less enthused when he realizes there's no Dunkin Donuts to the south like there is when we go north.

Peter really enjoys biking, which makes sense, because it's in his blood. We've long known about Peter's great-grandfather, Giuseppe Philipe Tedeschi, the famous Italian bike racer from the early 1900's. But we found out recently, thanks to diligent research from my brother, that we may very well be related to the famous turn-of-the-century Canadian bicycling champion Archie McEachern. Archie was a champion at Six Day Bicycle Racing (which involved racing a bicycle for six straight days on a wooden track).

You can read the story yourself if you click the link above, but we warned it has a gruesome and tragic end. Archie dies died in a bad crash, and sustained some horrific injuries. His last words were , "Oh, Bob," which is kind of creepy.

Peter wears a helmet.


And speaking of my brother and bike racing, Mike will again be participating in the Pan Mass Challenge, a two-day bike ride to raise money for cancer research at the Dana-Farber Cancer Institute. Last year he rode the Wellesly-to-Bourne-toProvincetown route; this year, he'll do Wellesley-Bourne-Wellesley. Word is that he switched routes so he can be closer to his home beer cooler when he's done. Understandable.

I made a push last year for people to sponsor him, and I'll do it again:

Dana-Farber is a leader in cancer research, and they do some exciting stuff with Non-Hodgkin's Lymphoma . Right now, they're in the middle of 47 clinical trials involving NHL treatments, including a bunch that are specifially for Follicular NHL. Support Mike and you'll ultimately support me.

(How's that for emotional blackmail?)

So consider making an online donation. It's easiest to cut and paste the URL for Mike's donation page (sometimes bookmarking it brings you to the default fundraising page instead):

Good luck, Mike. Thanks for riding.

Saturday, February 14, 2009

Family Updates

Happy Valentine's Day.
I figured I'd celebrate by giving some updates about the people (and dog) I love.


First, since it's Valentine's Day, I'll start with a quick Isabel and Bob item. The website has a quick story about our engagement. FathersforGood promotes strong fatherhood, and they asked for stories about couples' engagements. When I wrote ours, it was all about being a poor grad student, and how I wanted to be sure I could take care of Isabel before I asked her to marry me, and then I gave the actual story of tghe event. They said they would publish it, but then ended up cutting out all of that good stuff about being poor, emphasized the fact that we were engaged at Denny's, and put it in the "some of the more unusual engagement stories" section. Scroll down a little for our story.


The kids are doing well.

Peter is flying especially high these days. He plays on his school's JV basketball team (5th and 6th graders), and they're very good. They have a couple of starters who are especially outstanding, though all 12 boys do their jobs well, and they've already won two tournaments so far this year, and are in the finals of their own school's tournamnet tomorrow. Peter comes off the bench, but is seeing more and more playing time as he gets more confident and shows the coach what he can do. Earlier this week, he played more than half the game, scored 6 points, had 7 steals, and a couple of rebounds (including one he took all the way up the court for a left-handed lay-up.) He's enjoying himself a lot.

He's also excelling in band. A couple of weeks ago, he tried out for the All-State Bands again (see posts from last spring). Last year, as a 5th grader, he squeeked into the Symphonic band (the second most prestigious), placing 17th of 18 chairs in alto sax. This year, 35 kids tried out, 17 made Symphonic band, and Peter earned 4th chair. He's doing great.

John has been playing soccer all winter. He had a great fall soccer season, finally breaking out after a couple of tough seasons, and played some awesome defense (as well as excellent offense and goalkeeper). For the winter and into the spring, he's been learning "Brazilian Style" soccer at a weekly clinic, and his footwork is very impressive.

John has also been playing clarinet in the school band. He started in September, and is progressing very well. But really, he sees clarinet as a stepping stone to oboe, a notoriously difficult instrument that he fell in love with the first time he heard it. We went to a music store a couple of weeks ago, and John tried out an oboe, and blew away the guy who worked there (who has a doctorate in clarinet performance). Maybe the guy was BSing a little bit to make a sale, but I don't think so -- John was making some great sounds. A neighbor of ours plays oboe, and told us when she applied to colleges, she got calls from school symphony directors begging her to come to their school -- such is the rarity of the oboe player.

So we're pushing oboe.

Catherine is doing well, too. She, like her brothers, is gearing up for the Connecticut Young Musicians Festival in a few weeks, where she will play piano before some judges. She's also still dancing, and has her tap and ballet recital coming up in the spring. For the ballet piece, they're going to dance to "Pure Imagination" from Willie Wonka. It was bad enough last year when they danced to "Rainbow Connection" and I cried the whole time. I'm going to be a mess again this year. Good thing they turn the lights down low.

Speaking of dancing, Catherine and I attended a Valentine's Sweetheart Dinner and Dance last night. She and I dance a mean Cotton-Eyed Joe together, along with a passable Macarana. No slow dances last night, which is probably good, because I used to be able to pick her up to slow dance with her. My inability to do so has to do with her growth, not my weakness. (No slow dances, but I think they played every song from all three High Schol Musical soundtracks. Plus, I heard Miley Cyrus' "Girls Night Out" three times.) But best of all was that I didn't spill any ziti and meatballs on my white shirt.


Strudel is officially sick of winter. Between the snow and ice and the various illnesses we've been passing around our house, she hasn't been able to go for many walks, or to the dog park, or play ball in the back yard. She mostly spends her days on the Internet, and then every night at dinner, she presents us with reams of paper of whatever "research" she's been doing about the superiority of schnauzers.

Her latest: a diatribe about Lady and the Tramp. She insists that Tramp is actually a pure-bred schnauzer, and offers video evidence of the fight Tramp is in with the alley dogs (the fight starts at about 4:20 in the clip -- you have to get past the obnoxious Siamese cats to get to it), as well as side-by-side photo comparisons.

I can't wait for spring so she can play outside again.


And then there's little ol' me. I'm still running, building up slowly to race shape after a tough winter. Seems like we've all been sick since the middle of Decemebr with some head thing, chest thing, or stomach thing. So I've been slowly building up speed and distance, not pushing too hard. It's been encouraging so far. I ran three miles this morning for the first time in a couple of months.

There are a couple of local races in March, one a 5k and one a 4 miler. I hope to do one or both of them. If I don't, it will depend more on a busy schedule than illness, at this point.

I have an appointment for a CT scan soon, and a follow-up visit to Dr. R a few days after that. I had that unscheduled visit with Dr. R about a month ago, and everything seemed fine then, so I'm not anticipating any problems. I will, of course, let you all know what's going on.
Happy Valentine's Day. Eat some chocolate -- the antioxidants are good for you.

Thursday, February 12, 2009

More research

A few other interesting cancer-related research reports in the news lately:


Researchers at the Institute for Myeloma and Bone Cancer Research in Los Angeles have found out how tumors create their own blood supply. They looked at tumor cells from Multiple Myeloma (a bone marrow cancer). The tumor cells release a protein called pleiotrophin (PTN), which affects white blood cells, changing them into cells that form the lining of blood vessels. These new blood vessel linings become incorporated into the blood vessels within the tumors, connecting the tumor to the body's main blood supply. It's kind of sci-fi, almost: alien invader mutates itself and finds a way to live if its host.

But it's potentially big news, and not just for myeloma patients, but for all cancer patients. There are a bunch of different approaches to cancer research, theories about how to cure it, and one approach works on the premise that if you can somehow cut off a tumor's blood supply, you can starve the tumor. This myeloma research sounds like it could be a significant piece to that puzzle.


Another study, more directly linked to my present condition, comes from the Centre for Medical Oncology Laboratory in London. (I can't get the link to work, unfortunately.)

These researchers have been focusing on how and why the slow-growing Follicular NHL cellss transform into a more agressive form of NHL. It's a tough article to read, very technical, and (as some of us discussed in the support group) a little controversial, in that it leaves some questions unanswered. Basically, the authors of the study say that fNHL and t-fNHL (fNHL that has transformed into a more aggressive form) come from the same mutated cell. One cell mutates from a normal lymphocite (a kind of white blood cell). Then it sometimes reproduces as fNHL, and sometimes as t-fNHL.

Knowing how the tranforming begins is important for future research -- it has a lot to do with that "personalization" trend, because the research involves looking at antigens that are specific to each patient's tumors. But it also may say something more general: if the defective "parent" lymphocite cells can be identified, it might be easier to find a way to wipe them out. Doctors could harvest normal "parent" lymphocite cells, kill off everything with heavy chemo, and reintroduce the harvested normal cells through an auto stem cell transplant.

Controversial, as I said, but potentially exciting. There are some NHL researchers who are looking at the results of auto SCTs and the long-term survival rates that come from them, and saying this is our best chance at a cure. This research, if it all holds up under scrutiny, may give them some strong evidence.


Finally, I've seen an abstract for this articel, but it hasn't officially been published yet. It's the most recent data from the National LymphoCare Study. The study was begun because there was so little data on fNHL patients outside of clinical trials. A trial might look at a few hundred people and determine that a treatment is effective, but then no one knows how effective it really is. The LymphoCare Study is descriptive -- they aren't giving anyone any treatments, they've following patients to find out how they're bing treated, for how long, etc. The hope is that they can find some pattern in helping decide which treatments, and in what order, work best.

Between 2004 and 2007, they followed 2,728 fNHL patients. They looked at the initial treatment. Watch and wait was used for 17.7% of patients. Rituxin on its own was used for 13.9%. About 6% went into a clinical trial. Radiation therapy, 5.6%; chemotherapy only, 3.2%. Chemotherapy plus rituxin was the biggest group at 51.9%.

Of the chemotherapy plus rituxingroup, R-CHOP was used in 55.0%; R-CVP in 23.1%; rituxin plus fludarabine, 15.5%. Others were the remaining 6.4%.

They conclude that there is a wide variety of treatment approaches (no kidding), and that having some consistency in initial treatment might also help in determining the best course of treatment after relapse. It's a good thing -- we need to know what's going on.

There's more out there. I'll try to update with more soon.

Monday, February 9, 2009

Cancer Vaccine

We're getting to one of those times of the year when there seems to be a lot of interesting research and other information being published and presented about lymphoma, so I'll probably devote the next few posts to some of them.

I saw an interesting article about new developments in creating a cancer vaccine. It's called "Implants Mimic Infection to Rally Immune System Against Tumors." It's not about lymphoma, but it's a very interesting new approach to vaccines that could probably be used on lymphoma some day.

When I saw the lymphoma specialist at Yale a year ago, he mentioned that lymphoma vaccines were being developed, and I remembered being blown away by the whole concept (maybe because he seemed so excited about it). Within the last year, the preliminary clinical trial results for one study of the vaccines have been less than exciting, and the vaccine that they tried seemed to work OK for some people, but not broadly enough for people to get really hopeful about it. That was my reading of the numbers, anyway, and I've seen almost nothing about this vaccine trial since that report came out, which has been a little disappointing.

But the article above presents a different approach to using a vaccine. The approach that has already been tried involved some real personalization -- getting a sample of the individual patient's cancer cells and creating the vaccine tailored specifically to him or her.

This new appraoch, as you may read, involves implanting a small plastic disk that is "impregnated with tumor-specific antigens" and implanted under the skin. The theory is that since the immune system attacks outsiders, it ignores cancer cells, because they are created by the body -- they're not seeen as an "outside threat." The disks allow immune cells to enter them, where they pick up antigens that are specific to the tumor cells -- the antigens are almost like little messages that say "Attack anything that looks like this -- it's an outsider." The immune cells go to the lymph nodes and deliver the messages to T-cells (the cells that are responsible for attacking bad things in the body, like, say, viruses). The hope is that the T cells will then learn to attack the cancer cell the way it would attack a virus it had already come into contact with wenever the see it, creating a kind of immunity for the patient.

So this is still personalization like the previous vaccines, but the plastic disk seems to be the great innovation, since immune cellls have no choice but to pass through and pick up the message. In tests on mice, it helped 90% of them cure an aggressive type of melanoma.

More hope, more new stuff to keep track of for the next few years.

Thursday, February 5, 2009


A few weeks ago, I posted a video of three NHL researchers discussing current and future treatments for lymphomas. The future, they said, was that treatments in 5 or 10 years would be "personalized," with doctors able to find out which treatments will work for each individual patient.

There's a really nice press release out of UCLA that touts just this kind of thing. It's called "UCLA scientists develop 'crystal ball' for personalized cancer treatment."

Here's the deal: researchers are looking for alternatives to chemotherapy. Chemo often works, but leaves toxic side effects. Worse-- sometimes it doesn't work, wasting time and money, and still leaving the toxic side effects. When it doesn't work, it's because the patient's individual biochemical makeup just doesn't match up with the drugs for whatver reason. The UCLA researchers seem to have found a way to predict if a treatment will work before it's given.

They altered a chemotherapy drug so that it could be traced with a PET scan, creating a "tag" that would show up on the PET. They gave the drug to mice with leukemia and lymphoma, then gave them a PET. The PET allowed them to see the tagged drug being absorbed by the tumor.

The researchers think that this will work on humans, too; they'll be able to give a small amount of a tagged drug to cancer patients and then see on a PET whether or not it was being absorbed by the tumor. If it isn't being absorbed, they know the chemo won't work, and they'll try a different treatment. That's one kind of "personalization" that we can look forward to in the near future.

They hope to begin clinical trials at some point; phase I will determine if the therapy is harmful, phase 2 and 3 will determine if it actually works.

So the future is now. Very cool stuff.

Monday, February 2, 2009

Happy Super Bowl

I'm a day late, but so be it.

I hope everyone enjoyed the Super Bowl last night. Quite the game. We had no real emotional stake in it, but we were pulling for the Cardinals, since they were the underdogs.

Though late, I have a couple Super Bowl links for you anyway.


First, what has been called "the greatest Super Bowl snack ever." I actually can't link you to it, because the rest of the site is a little tasteless, but I can cut and paste this for you, anyway:

Look close and you'll see these ingredients, as described from the website I found it on:

The Field:
1 Pound of Guacamole
15 Oz. Queso Dip For The Steelers End Zone
15 Oz. Salsa For The Cardinals End Zone
2 Oz. Sour Cream for the Field Lines

The Players:
15 Vienna Sausages
Helmets - 3 Oz. Sharp Cheddar Cheese

The Goal Posts:
1 Slim Jim for Each Goal Post
1 Oz. Monterey Jack Cheddar To Anchor (each)

The Stands:
58 Twinkies
1 Pound of Bacon
1 Bag of Nacho Cheese Doritos
1 Bag of Cheetos
1 Bag of Corn Tortilla Chips
1 Bag of Chex Mix

The Blimp:
20 Oz. Football-Shaped Summer Sausage (optional) (on second thought, no, this isn't optional. Go buy one.)

TOTAL COST: $86.47
TOTAL DELICIOUSNESS: 1 Billion trillion, dude. One billion trillion.

I won't even bother cutting and pasting the instructions for putting it together. If you're that motivated, you'll track them down yourselves and search for this thing on your own. But it looks awesome.

How awesome? One billion trillion, dude.


Speaking of awesome, this comes from no less a reputable source than the New York Times. All the news that's fit to print -- and all the bacon that' s good to eat!

This recipe is called the Bacon Explosion -- bacon wrapped in suasage, wrapped in woven bacon.

That's a Super Bowl snack for you right there.

The article that I linked is fascinating. The Bacon Explosion has the ability to unite this country, given who is celebrating it.

(And if you truly love bacon so much that you read the article, then you will no doubt appreciate these Bacon Haiku poems.)

I love that the photo shows it sliced and served on a biscuit. Looks almost as good as that burger made with two grilled cheese sandwhiches.....