Treatments in the News

First, a musical update:
On Saturday, Peter played alto sax at the FMI All-State Band concert. This involved over 300 kids from Catholic schools around the state. Four bands played; Peter had auditioned and was placed in Symphonic Band, second highest of the four. He did a great job. It's rare for a fifth grader to make that band, so we're very proud of him.

The kids got their scores from the Connecticut Young Musicians Festival, where they all played piano. All three of them scored a 4 out of 5, so all of us are pleased. Catherine has been playing less than a year, so that score was great. And John and Peter both played some challenging pieces, so their scores were great, too.

Such talented children. I can't even read music, so I can take no credit for all of this.

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I listened to a really interesting webcast on follicular NHL yesterday, with a doctor from Rochester, NY who is a specialist in this lymphoma. [I can't get the link to work, so I can't let you listen to it.]

He talks about some of the promising treatments for follicular NHL. Thought I'd share some of what he said:

The standard treatment for a long time was a chemotherapy called CHOP, which stands for four different drugs. In the last 10 years, it has been CHOP-R, which is CHOP plus Rituxin, a monoclonal antibody which works by seeking out a specific protein (CD20) that is present on the B-cells that are affected by certain lymphomas. Rituxin is also used on its own with some effectiveness. One of the great things about Rituxin is that is has almost none of the side effects that chemo has. This drug alone has almost doubled the survival rates for fNHL patients.

Rituxin has been used for about 10 years, and in that time, researchers have built on this technology in other ways. Two other drugs called Bexxar and Zevalin also target CD20 proteins. But the twist is that they have a tiny dose of radiation, so they zap the B-cells when they find them. This is a huge advance. Traditional radiation treatment targets individual tumors. Lymphomas are harder to use radiation on because the "tumors" are cells that travel through the blood -- nearly impossible to pin down. Bexxar and Zevalin allow the radiation to get to where they need to go. The treatmnent takes only a week (versus months for chemo). The downside is that, because it's radioactive, a special team needs to be assembled to administer it. No going to the office and letting an onc nurse do it. So they've been underutilized so far. Yale, however, has offered the treatment in the past.

Another drug being tested now is called Revlimid. It has been approved for use on patients with Multiple Myeloma, another blood cancer, a "first cousin" of follicular NHL. This one works in a different way than the monoclonal antibodies. There is some research that suggsts that certain abnormalities of the blood vessels may support cancer, a possible reason Multiple Myeloma (and perhaps indolent lymphomas like follicular) are so hard to wipe out. Revlimid targets the blood vessels, creating changes in them that may wipe out whatever property is getting in the way of killing off cancers.

Another Myeloma drug being tested on fNHL patients is Velcade. This takes yet another approach to the disease. It is a Proteozome inhibitor. As the webcast describes it, every cell has a "wastebasket" that collects waste products that occur when a cell takes in nourishment; the wastebasket is then emptied into the blood, where it gets expelled. Velcade shuts off the "emptying" feature of the wastebasket. All of the waste builds up in the cancer cell, and it eventually kills itself. It's kind of a poison that is already present in the cell.

Yet another group of drugs in development is called BCL2 inhibitors. BCL2 is a protein that keeps a cell from dying. When the cell runs out of the protein, it dies -- this is a normal thing. All cells die. In lymphoma cells, particularly in indolent lymphomas like follicular, there's too much BCL2, so the cell takes a long, long time to die (and it's really hard to kill off). The BCL2 inhibitor would tell the lymphoma cells to stop producing so much of the stuff, so they would either die a "normal" death, or be easier to kill off with Rituxin or some other agent. These drugs are in early trials, so probably 4 or 5 years away from approval. But this is most promising, if it all holds up as well as it has so far in early tests. The really cool part of this? It's a daily pill -- no chemo, no injections.

That's kind of the theme in lots of these potential treatments: unlike chemo and radiation, there are fewer, less harsh side effects. And more importantly, more options. Follicular NHL, as I've written once before, is the "Tarzan" cancer -- there are always more vines to grab on to, more treatments to try. Some treatments work for some people; other people won't stay in remission and need to try something else. But it usually grows so slowly, there's time to try other things.

The researcher being interviewed was very excited about it all, and I'm excited about it all, too. It's bringing out that inner scientist in me. Makes me wish I stayed pre-med for more than one semster....

Some Pictures

A few people have asked me for pictures, mostly to pass on to others to show thatI'm still in good shape and not looking sick or anything (they need the proof, I guess -- oh they of little faith). I knew I'd posted some already, but then I realized they were race pictures, so I looked really tired, or awesomely athletic, and always had a hat on (these winter races are chilly). So here are a few, courtesy of my brother and his wife, from Easter.

That's me with the bunny cake. Yes, I decorated it. I'm good at that sort of thing. I like to think I inherited my grandfather's cooking skills, and my brother got his bicycling skills.

(That's kind of a family inside joke.)

An inspirational poster created by my brother, just like the kind you can buy from SkyMall Magazine on airplanes.

If you can't read the caption, it says, "Brothers: Because neither of us wants to be the only one drinking on a holiday."

A Connecticut friend enjoys my brother's posts to the comments, and wanted to meet him. I hope the picture satisfies you.

Another inspirational poster from my brother, this one from the post-dinner wiffleball game. I'm pitching, so this is probably just before I struck him out. He'll probably say it was just before the line drive that he hit off our neighbor's house, denting their aluminum siding. His wife took the picture, and I'm guessing she's just going to stay out of it.

Then again, he's the one who came up with the caption, "Wiffleball: When you stink so bad that you can't even find an adult softball league that will let you play." So maybe she doesn't have to say anything....

Peter is playing sax in an all-state symphonic band concert this afternoon at Central Connecticut State University. More on that later.

Have a good weekend.

Nodes of Gold #2

First of all, let me just point out to all that the new movie Run, Fat Boy, Run is not about me.

(I just wanted to make that joke before my brother did.)

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Today, we will enjoy the second bio in our series, Nodes of Gold, which profiles famous people who have been treated for some form of lymphoma.

Today's celebrity lymphomaniac: comedian Arte Johnson.

Johnson is probably best known for being a cast member on Rowan & Martin's Laugh-In, which appeared on NBC from 1968 to 1971. Among his better known characters were "Wolfgang," a German soldier who would comment on other sketches by saying "Verrrrry interesting....," and Tyrone Horneigh (pronounced Horn-eye), a lecherous old man who would hit on Ruth Buzzi's character Gladys Ormphby, usually with disasterous results.

Johnson reprised the Wolfgang role for several epidodes of Sesame Street in 1970. In one segment, he discussed the imprtance of the letters Q and U. In another, he explains the difference between short and tall. Naturally, he found all of it "verrrry interesting." Sesame Street's producers received a number of complaints about the character, such as one froma German woman who objected to the stereotyping of people from her country. According to Patricia Tornburgh of the Children's Television Workshop Information Department, by January 1971, the Wolfgang character "has yet to attract any favorable comments." The character was let go soon thereafter. (How cool is that? Fired by Sesame Street!)

Johnson has appeared in a number of other TV shows, including The Love Boat (6 times) and Fantasy Island (4 times), Fame and The Dukes of Hazzard. He was a frequent guest judge on The Gong Show. He also has done voice work on numerous cartoons, including Scooby Doo, the Smurfs, and Misterjaw, in which he played the lead, a weird German-accented shark who didn't eat anyone, but preferred to sneak up on people and scare them by screaming "Ha-Gotcha!" He also hosted the game show Knockout in the 1970's.

In 1997, Johnson was diagnosed with a form of Non-Hodgkins Lymphoma. He was treated successfully.

And for those of who like to play "Six Degrees of Lymphoma Separation": Johnson appeared in an episode of The A-Team in 1985, playing a character named "Uncle Buckle-Up."

So here's to you, Arte Johnson. You have Nodes of Gold!

Another Good Dr. Visit

Things are still looking good.

I had my monthly follow-up with Dr. R this afternoon. Nothing's really changed. These monthly visits consist of blood work, a physical exam, and my self-reporting of symptoms. Everything looks great.

My blood work is "perfect" and "rock solid" -- no changes from last month. No anemia, no high or low white cell counts. Some other tests that look at liver output will come back in a couple of days, but given the good blood counts, it's unlikely that I'll have any problems there.

No nodes are swollen (except the one near my hip bone that first "presented"), and no organs appear swollen (like the spleen, which can often be felt externally).

I'm not feeling any B symptoms (weight loss [I've actually gained a couple of pounds, thanks to those Dove Dark Chocolate Easter Eggs], chills, night sweats, etc.). My various aches and pains probably aren't related to the NHL, given where they are located.

He was pleased. I didn't really have any questions for him. "Yeah," he said, "it gets kind of boring aftera while." So I guess that means my slow-growing, low-grade lymphoma is doing what it's supposed to do, which is grow very slowly.

We scheduled another CT and PET scan for April 16, which would make it about 3 months from the last one. That's a little on the quick side, but he'd like to get a sense of how quickly things are progressing, if at all. He asked the radiologist to compare the scan with the January one, so we can see if anything has grown or shrunk. We'll aslo re-stage, if necessary. Then I'll see him again about a week later to discuss the results. He doesn't expect anything to have changed drastically since January. If things look good on the scans, we can make the now-monthly appointments every two months, or even three months, until something changes.

So overall, no news is good news. As much as it sucks to be in limbo this way, I'd rather wait around for a long time than be really sick.

Thanks for all your positive thoughts and prayers.

Good Weekend

Just a quickie.
Mom and dad came down Saturday, and my brother and his wife and two daughters came down Sunday, and we all spent Easter together. It was really great to have everyone there, especially since I hadn't seen my sister-in-law Karen and my nieces Nicole and Emily since the diagnosis. Family is good.
This came on the heels of my mother-in-law visiting from Wednesday to Saturday. The kids won't know what to do with themselves without all that grandparenty love so close.
Plus, Strudel misses all of you.
So thanks for all the visits. Come back any time.

More tomorrow, after I see Dr. R.

More on Tuesday

A happy Easter to all who celebrate it, and a happy spring to all.

I have an appointment on Tuesday with Dr. R, the oncologist. I'll try to give an update Tuesday afternoon or evening. I think it will be fine, but who knows. I'll tell him about my little aches and pains and see where it goes.

I may post Monday, but I'm expecting a busy day at work -- first day back from spring break, and the last day to withdraw from classes. So I make no promises.

Have a good weekend.

We are the World

I came across this link yesterday -- a Japanese parody of, or maybe tribute to, the "We Are The World" video. It looks like it came from a game show or something, but honestly, I have no idea why they're doing it. Still, I love it. I can't decide who I like most -- the guy doing Springsteen or the guy doing Stevie Wonder.

The original is running down in the lower left corner, but if you want to see the full version, all on its own, click here. It brings back so many memories, so many questions. In the group shot, why does Lionel Richie hold his headphones against his ear and not put them on his head? Did he think it would mess up his hair? Who thought it was a good idea to give Willie Nelson, of all people, the part that required turning the page? And did Dionne Warwick resent being the one who had to do it? Did she do something to make Quincy Jones angry? Hall earned his line on his own -- but did he agree to sing only if Oates got to sing, too? Why was Dan Akroyd asked? Did you even remember that half of those people were involved?

I remember being on bus soon after it came out (March 1985), and overhearing two kids talking about how great the song and video were. "But did you hear that new guy, Bob Dylan?" said one. "Yeah," said his buddy, "His voice sucks."

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My friend Nicole (known to you all as Cocovertigogo) sent me an e-mail yesterday with her thoughts on complacency, being in a kind of in-between place, and her own experiences with the feeling. It was a private e-mail, not a public comment, so I won't get into the details, but she did say that she thought kids (and my kids, whom she knows, in particular) probably have a better sense of that essential balance than we think they do.

Last night at dinner, John was panicked about one of his fish, a female sword tale. It's been acting a little strange lately -- hiding in the plants, not moving much -- usually not a good sign. But I've noticed she gets active once it's feeding time, so I haven't been too worried. Just likes to hide in the plants, I guess.

But John was very worried about it all. He thought she had some white scales near her eyes that he hadn't seen before. He noticed a red barb chasing her some, and worried about the stress that might cause. I offered a reasonable explanation for each of his concerns, and we decided that, rather than take her to the vet (!), we'd add a tablet that would clean the water and help improve her protective stress coat. "OK," John agreed. "I guess we'll just watch and wait."

I stand corrected. He is paying attention.

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My mother-in-law is arriving this afternoon for a visit for the next few days. The kids are really looking forward to seeing her. Then mom and dad come Saturday, and my brother and his family on Sunday. I'll try to sneak in one more blog entry before Sunday.

Strudel and I continue to negotiate the topic of her next blog entry. American Idol? Her Final Four Picks? Some weird diatribe on the superiority of certain European breeds and their contributions to art and culture? I don't know if this is a good idea....