A Little Bragging

A busy spring means lots of good stuff has been happening, so I need to take a little time to brag.

1) Peter's All-State Symphonic Band concert took place last weekend. They sounded great. (You will remember, he earned 4th chair for alto sax this year, and just missed making the very prestigious Jazz Band). Like last year, he and his bandmates will do an outdoor concert at Lincoln Center plaza in NYC in a month, and another one outside the Old State House in Hartford a few weeks after that. I'll try to get and post video from one of those events. He's getting a reputation among the state band organizers; they're expecting big things from him over the next couple of years (and I have no doubt they will get them from him).

2) Results are in for the Connecticut Young Musicians Festival, where Peter, John, and Catherine all played piano. All three kids scored perfect 5's. You can see their performances in a blog entry from about a month ago. So no surprises there.

3) While I'm on the subject of music, I'll give an update, not a brag: I'm still playing guitar, and coming along well. I've learned lots of chords, which is fun, though I'm having trouble with one notoriously difficult one. (Let's just say I think I know why it's called the "F" chord....)

4) Back to bragging: Isabel and I were both nominated for the university's Outstanding Teacher Award last week. Quite an honor. The next step after being nominated is to put together a file with personal statements, course materials, letters from students and other teachers, etc. I'm not going to take that step -- the courses I'm supposed to discuss in the file are from the last couple of years, when I hadn't done much teaching, because of chair duties. Isabel, however, is putting a file together. Which is fitting -- she's a better teacher than I am anyway, and will deserve it if she wins it.

5) No more bragging, but thanks to everyone who provided public and private (mostly private) suggestions about finding the old Coast orginal blue soap, the new Coast Pacific Fever soap (or whatever it's called), and Coast alternatives.

Apologies to those who told me in public and in private (mostly private) that they really don't want to read any more blog entries about my personal hygiene problems.

A late edit to the post: More bragging. I just got a Facebook notification from the "We're Related" app that "Barack Obama has confirmed that you are his cousin!"

Woo hoo! We're spending next Thanksgiving at the White House with the cousins!

Just a Quickie

I'm bogged down in student papers, so I can't write much today. But I can cut and paste a nice article for you. Don't even have the source to link to (it was posted by someone in the support group) or time to comment on it. Just more of that same good, hopeful stuff.

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Lymphoma Research Revs Up
Published on 26 March 2009, 09:57
Last Update: 1 day(s) ago by Insciences

MADISON - After decades of stagnation in the cure rates of lymphoma patients, researchers are optimistic about a new direction in research that offers hope for those with the disease.

A Wisconsin lymphoma researcher says the study of a family of proteins, referred to as BCL2, could provide a major breakthrough.Lymphoma is a general term referring to a group of cancers that affect the lymphatic system, which is in turn involved with the body's immune system. The cancers are broadly divided into Hodgkin lymphoma and non-Hodgkin lymphoma. "We know that over-expression of the BCL2 family proteins is common in lymphoma patients," says Dr. Brad Kahl, associate professor of medicine at the University of Wisconsin School of Medicine and Public Health (SMPH).

"If we can use a drug to weaken the interaction of these proteins, we may be able to slow the growth of, or even kill, cancer cells," Kahl said.Kahl, a researcher with the UW Paul P. Carbone Comprehensive Cancer Center (UWCCC) and a practicing oncologist, has opened clinical trials on two drugs designed to attack the problematic protein interaction. He was also the lead investigator of a pivotal study that led to Food and Drug Administration (FDA) approval of Bendamustine, a new chemotherapy drug which does not cause hair loss and extends remission for patients with several types of incurable lymphoma.According to Kahl, the 1970s brought cures for some of the 35 or more known lymphomas when combination chemotherapy regimens, or "cocktails," were developed. In the 1980s and '90s, researchers tested new chemotherapy drugs to mix with those cocktails. But there was little progress in curing more patients. About 10 years ago, doctors began using rituximab, an antibody, which sticks to the outside of lymphoma cells and tags them for destruction by the patient’s immune system. Kahl says the drug, in combination with other chemotherapy, cures 15 percent more patients, considered a quantum leap in cure rates. Now Kahl and other researchers are looking for the next breakthrough and drugs which attack the BCL-2 proteins are good candidates.

"There are several drugs in development that target specific biochemical pathways in cancer cells," says Kahl."But we’re finding that a biochemical pathway which becomes a problem for one patient might not be a problem for another patient. However, the BCL-2 protein pathway is a problem for a high proportion of lymphoma patients," he notes. If the drugs are shown effective by clinical trials, Kahl said they would be tested on the different variations of lymphoma and in combination with traditional drugs."If the new class of drugs works, the protein inhibitors may prove effective for treatment of various forms of lymphoma." Kahl said three drugs designed to act on BCL2 family proteins will be tested and studied at the SMPH this year.

Good Visit with Dr. R

I saw Dr. R today. He thinks things are looking OK.

I'll be honest -- I was a bit concerned about this appointment. Concerned enough that Isabel and I talked this week about my maybe needing to start treatment soon, and tried to prepare ourselves for that possibility. That possibility is always there, of course, but (as Dr. R pointed out today), I tend to be pretty accurate with how I think I'm doing, and this was really the first time thast I had doubts.

There were two reasons I was feeling less confident about this appointment. First, Dr. R had me come in for this appointment after only a month. I had been on a 2-3 month schedule with him, but the last scan had him "surprised," to use his word, because of the growth of the node cluster near my hip. The scan hadn't shown anything else growing, just that one area, but it was enough to want to see me in a month, and he talked about the possibility that I'd need another scan in another month from now. The last visit with Dr. R was strange. I downplayed all of this in the blog entry, but it was all just unlike other visits. It was pushed back 30 minutes, because Dr. R was at the hospital. He wasn't as upbeat as usual. He didn't do a physical exam, and didn't order blood work. I suspected he had had a rough time at the hospital. He just seemed off that day. So all of that kind of stressed me out and had me expecting the worst.

What added to it all was the ear problem I've been having. I'm still getting odd popping in my ears, and some slight dizziness. Dr. R asks at most visits if I've been feeling dizzy, so I suspected that was maybe related to the lymphoma somehow. But it's not on any list of symptoms I've ever seen, so I didn't know what to think, but, given that it came on the heels of the "surprising" scan, I was worried. Dr. R and I talked a lot about the dizziness today. The bottom line is, he thinks it's unrelated to the lymphoma. Another patient was complaining about something similar last week, so he thinks it's just an odd virus going around. If it gets worse, I'm supposed to let him know, but he thinks it's nothing to worry too much about.

So, overall, he thinks things are looking good. The blood work was "rock solid," the physical exam was fine, and he's less owrried about things, so he wants to see me in 6-8 weeks. I asked about another scan, and he said he didn't see the need for one immediately. Maybe we'll talk about it in 6 weeks.

It was good to prepare myself this week for the possibility that things might get worse, and that possibility is always there, I know. Things might get worse in the next 6 weeks for all I know. But for now, I'll take the good news and go with it.

Cure Today Magazine

There's a nice magazine for cancer patients called Cure Today; it's one of those free magazines that you get in the oncologist's waiting room. (Lots of doctors have this kind of magazine, with informative articles and cute, positive names; the Ear doctor I recently went to had one in his waiting room called Papa Can You Hear Me?)


Anyway, the most recent issue of Cure Today has a nice piece on Non-Hodgkin's Lymphoma, called "Trying Something New: Long-Standing Treatments for NHL Have Something New to Offer." The first part of the article discusses the differences between aggressive and indolent (like Follicular NHL) lymphomas. A nice overview, I guess, if you need one. But the second half gets into treatment advances (singing the praises of Rituxin, for example), and discussing briefly some of the treatments thar are in clinical trials or other stages of development right now.


Some highlights of those treatments:


-- Ofatumumab (the proposed trade name is Arzerra), a monocolonal antibody like Rituxin; like Rituxin, it seeks out the CD-20 protein found on lymphoma cells. But this one is thought to bond more efficiently to CD-20 proteins than Rituxin does, and with less toxicity. It still hasn't been approved for NHL, but it's getting there.


-- Alemtuzumab (also known as Campath), is a monoclonal antibody that binds to cells with the CD-52 protein. It's already used for leukemia. The problem with this might be that it works too well: CD-52 proteins are found on lots of types of immune cells, not just the cancerous ones, so the drug can seriously suppress the immune system.


-- Histone Deacetyase Inhibitors, which include several drugs. These work by reactivating genes that are responsible for normal cell growth, but which have been shut off by cancer. Reactivating them will slow down the cancer's growth.



One expert says, “Right now, we’re living in the most exciting time ever in the history of cancer care. There are enormous numbers of new drugs that are beginning to emerge that offer you a chance to reduce the non-specific effects of chemotherapy and, theoretically, gain better efficacy.”


More of that targeting and personalization stuff, in other words. I've written about most of these treatments before, but it's nice to see that they're moving along steadily. Good news.

Nanotechnology

As promised, I have some cancer and lymphoma news to share over the next few posts.

The first piece comes from ComputerWorld. com, a seemingly strange place to find cancer news. The article is called "Nanotech Blasts Cancer Cells with Tumor-Killing Genes." Very cool stuff. Nanotechnology, in general, deals with technology on a sub-atomic level, using tiny particles to affect tiny molecules. For example, nanotech researchers have found ways to deliver very small doses of chemotherapy directly to cancer cells, while leaving healthy cells alone. The article discusses more of the nanotechnology advances against cancer that have been made in the last year or so: once cancer cells can be identified, therapies can be delivered directly to them, sometimes delivering proteins that force the cell to kill itself.

In some ways, this is all part of that "personalization" process that cancer researchers are working on. By targeting specific cells, treatments become more efficient, creating less need for broad-based chemotherapy and minimizing the damage to healthy cells.

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I can't end the post without giving a Woo-Hoo to my Cardinals. As a proud alumnus of the University of Louisville, I was thrilled with their #1 seeding, and very pleased with their hard-fought victories this weekend.

I think we need to give some credit to entire Big East Conference. This season, they were great teams that made each other stronger, and now a record five Big East teams are in the Sweet Sixteen. Unfortunately, Marquette, which would have made it six teams, lost a heartbreaker to Missouri.

Very sad loss for Marquette. I tell ya -- I'd hate to be an alum of that school. And that's all I'll say about it, because saying any more would cause unnecessary pain for any alumni who might be reading. It's just very sad. That's all I'm saying.

More Updates

I have some stuff to share about new and interestiung developments in cancer and lymphoma research, but they'll have to wait until next week. A few updates first.


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Peter's basketball team won their league championship last night. They finished the season 33 and 1, and made it to the state semifinals. The league championship was pretty satisfying, because last year they lost the championship game by 40 about points (Peter wasn't on the team then), so the coach and some of the returning players felt a little bit vindicated. Peter played for about a third of the game, and did his usual great job on defense, fighting for loose balls and rebounds, and coming out of it all with an sore wrist and an elbow to the eye. But he thinks it was all worth it.


Peter played Junior Varsity this year (5th and 6th graders), and has been anxious about whether hell make the varsity team next year. But after the game, when he went to thank the coach for all he'd done, the coach told Peter that he hopes to get the team into an informal rec-type league this summer. "I want to keep my returning guys sharp. I'll let you know more soon." So we took that as saying Peter is expected to come back next year for varsity. That's a relief to Peter.


The biggest news of the night, though: Lady Luck continues to try to make ammends. I won the 50-50 raffle. These raffles are very popular at school basketball games around here. You buy a ticket for a dollar, and the winning ticket wins half the money collected, with the other half usually going to the school. BUT -- the winner can take a shot from half court (or ask someone else to do it), and if it goes in, the winner keeps ALL the money. This being a championship game, there was a big crowd, and they sold an unusually large number of tickets. So I won $100. Peter took my half-court shot for me, and while the shot was on target, it fell a little short. So I got my money and the host school got theirs. Good deal all around.


Still, Lady Luck still hasn't totally made it up to me for this whole cancer thing....


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As for my health: I've been battling a strange ear thing for the last three weeks. I was on antobiotics for ten days, and the middle ear infection cleared up, but the kind of popping/pressure in my ears, with slight dizziness, has remained. I had my ears irrigated, and still nothing changed. I went to an Ears-Nose-Throat guy a couple of days ago, and my ears are physically fine (except for a slight loss of high frequency range hearing, probably due to too much Black Sabbath through loud Radio Shack headphones during the early 1980's). His guess is that the other problem is being caused by stress -- tight jaw muscles messing with my Eustacian tubes. He suggested I stop chewing so much gum and avoid foods that make me work my jaw too much. He knows of my health situation (some progression lately with the lymphoma) and said, "I can't imagine anything more frickin' stressful." So I'll go with his "stress" diagnosis for now.


I see Dr. R a week from today.


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Finally, I want to share a personal problem I've been having. The Dial Corporation no longer makes Coast (Original Blue) Soap.


I've been using Coast for years, and about six months ago, our grocery store stopped carrying it. Isabel found a bunch of Coast really cheap at the discount grocery we also go to, and she bought me about 20 bars. Now that's just about run out. I looked everywhere and couldn't find any.


I went to the Dial home page yesterday, and found a link for Coast Pacific Rage, or something like that, with a link for finding a retailer who carries it. Well, even this new stuff is unavailable within 100 miles of my zip code.


I was curious if there was anything online about Dial limiting their selling area for this new version of Coast, and I found a video from a woman named Missy Ward, lamenting the loss of Coast Original Soap. As you can see from her video, she too is a long-time user, she hates the new stuff, and she has scoured retailers and the internet for Coast Original to supplement her stash of 250 bars of the stuff.


I've come to grips with the fact that I to give up on Coast, particularly if people like her are working that hard to find it. Which saddens me somewhat.


So if any of you have some old Coast Original Blue soap in the back of a closet, let me know. I can't promise I'll buy it from you, but I'll pay for postage. And if you accept Missy Ward's offer of $7.00 a bar instead, I totally understand.


But I'm also now looking for Coast alternatives. Send me your suggestions. Soon.

Happy Saint Patrick's Day

An Irish man, Seamus, walks into a bar and sees his friend Patrick.

"Why so sad, Seamus?" asks Patrick.

"I got bad news today. I have cancer," says Seamus. "The doctor says the prognosis is good, but Patrick, could you make me a promise?"

"Anything," says Patrick.

"If I die, will you take a bottle of the finest Jameson's Irish whiskey and pour it over my grave?"

"Oh, Seamus," says Patrick, "I'll be happy to....but do you mind if I strain it through my kidneys first?"

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Happy St. Patrick's Day, everyone!

A Couple of Updates

Well, Peter's basketball team has finally lost a game. They were 30 and 1 this year, and made it to the semi-finals of the state tournament, but lost yesterday by 3 points. It was a great game, and they lost to an excellent team. They have one more game this season -- the finals of their league tournament on Thursday night. Let's hope they finish on a positive note.


Peter was unhappy about the loss, of course, but Catherine was a pool of tears at the end of the game and half the ride home. We were really touched that she was sharing her brother's sadness (unlike John, who read a book during the whole game). But then we finally got out of Catherine that the real reason she was so sad was because if Peter's team had won the state tournament, we'd all get to travel to the New England championship tournament, and she realized that now she wouldn't get a chance to stay in a hotel with a pool.


Still, it was nice that she was sad about the loss....sorta.


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The lead article in today's Parade Magazine is about Jon Lester, the Red Sox pitcher who was diagnosed with an aggressive NHL at age 22, was treated with chemo, and came back to win a World Series game in 2007 and pitch a no-hitter in 2008. Very inspirational. If your Sunday newspaper doesn't carry parade, you can read the article online here. There's a link of page 2 of the online version called "The Facts about Non Hodgkin's Lymphoma," that talks about symptoms, diagnosis processes, and treatments. It's a short article, but it's great that NHL is getting some exposure, especially if it can help people know what the symptoms are.


Lester hasn't publicly talked about his NHL too much; he says he doesn't want to be defined as a cancer survivor. Totally understandable. So it's nice that he's willing to talk about it here and help increase awareness.


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Speaking of the Red Sox and cancer:


There's a small controversy about Sox pitcher Jonathan Paplebon. In an interview from Esquire magazine, he said he was glad that Manny Ramirez is no longer with the Sox, since he had quit on the team before he was traded, and was becoming "a cancer." (Maybe not so samll a controversy; try Googling "Papelbon and cancer" and you a few hundred hits. Lots of news outlets carried that story.)

Now some people are upset with Papelbon for using the word "cancer" so loosely to describe his former teammate. As a cancer patient, I feel entitled to an opinion on the topic:

I don't see why people are getting on Papelbon. The term "clubhouse cancer" has been around for a long time as a way to describe a teammate who brings everyone else down with his bad attitude. Try Googling "clubhouse cancer." The first ten hits have stories about Stephan Marbury, Coco Crisp, Lane Kiffin, Jim Edmunds, and others being called "clubhouse cancers." Where's the outrage?

I guess part of the problem is a seeming insensitivity to teamamtes Jon Lester and Mike Lowell, who are both cancer survivors. Still, I think the whole thing echoes the attitude that cancer isn't a word we're supposed to say out loud, only in whispers, if we say it at all. As you know from reading the blog, I refuse to take that attitude. I certainly don't flaunt my cancer, but I think if it doen't get talked about, it remains something too scary to be dealt with. It's too old fashioned an attitude for me. Talking leads to awareness. Talking leads to emotional relief.

So Papelbon is insensitive, maybe. But I can't make cancer jokes here and then criticize Papelbon for using the term too informally. It was an extreme comment, maybe. But it's not a word that should go unsaid.

(Ooooo -- now I'm all fired up for baseball. Bring on opening day, baby.)

My New "Doctor"

I had an amusing cancer-related experience recently.


I got a haircut a few days ago. I was a little hesitant to go at the time of day that I did, because I knew I'd end up getting it cut by the same woman who did it last time. She's a Talker, and worse, a Know-It-All-Talker. I deal with enough of them every day at work; I don't need one cutting my hair. She also gets in moods where she gets a little insulting. It's overall not usually a pleasant experience. But I went at that time anyway, because it was going to be my only chance for a while to get a haircut (we're getting to the crazy time of year now, at work and with the kids' lives).


The last time I saw her, she noticed that I have a small bald patch at my hairline near the back of my neck. It's maybe as big as a nickel. I have one under my chin, too. I know they're there, and they don't bother me. (Interstingly, this kind of spot alopecia is an autoimmune issue -- something to do with T cell lymphocytes, from what I understand. Probably not related to lymphoma; I've never read read anything about that connection.)


Well, the last time she cut my hair, she saw the small patch, and for the next 10 minutes, repeated to me how important it was that I rush to see my dermatologist, because it could spread to my entire head. (Not true -- it's actually very rare that such a thing would happen.)

So when I went back to her a few days ago, I knew she was going to bring it up again, and I decided I would tell her I was a cancer patient and hope it would just shut off all conversation, the way it does with most people. (It's almost as effective conversation stopper as telling people I'm an English teacher.)


She started cutting, and sure enough, she brought up the alopecia. I stopped her with a, "Yeah, I know it's there...I'm a cancer patient....."


It didn't shut her up. Not for a second.


Without missing a beat, she said, "I knew it. I knew what it was from. What do you have?"


"Lymphoma."

"Yup. I knew it," she said. And then she was off: "I had a guy in here last year with a lump behind his ear I told him to get it checked but he said it was fine but I told him, you better get that checked and he said OK and he got it checked and he came back the next week and said [she paused here] You saved my life. So now I have a customer for life, you know? Not that I did it for that reason it's just the kind of person I am I can't let someone not know because you know that's how I am, but his wife was in last week you should have heard her going on, I mean, that's not why I do it, it's just the kind of person I am. I was in the health field at one time."


She went on for a while more about her sister-in-law who went back to school to study nursing, but only becasue she's in it for the money, and about the crafts she sells on eBay, but then she circled back around to my lymphoma diagnosis.


"You'll be fine. Blood transfusions. That's what you need," and before I could respond, she told me about her former customer (whose life she saved) and how blood transfusions have cured his lymphoma, and he's fine now. "Yeah, I could go into the health field -- but not like my sister-in-law, just for the money, but I like to help people. The problem is, I can't stand to hear someone whine because they have a little cut, you now?"


I finally got a word in, and asked her what she had done in the health field.


"I used to cut patients' hair in a nursing home."


She finished me up, and I paid and tipped her extra for the medical advice. "You'll be fine!" she called out to me as I walked out the door. "Blood transfusions!"

Ran a Race, Finally

This morning, I ran in the WPLR ShamRock & Roll 5K, sponsored by our local classic rock station, and benefiting the New Haven Diaper Bank, a very cool organization. I did OK -- an official time of 31:42, just over 10 minutes per mile, coming in 820 out of 1270 overall, 131 out of 157 in my age division, and #1, as far as I know, in the subvision of Old Fat Guys with Cancer. (As usual.)

Official results are here.

The 31:42 is the official time, but with such a huge field, it took a minute and 7 seconds to reach the starting line, so I'm putting myself unofficially at 30:35, five seconds slower than when I ran this race last year.

It was a beautiful 45 degrees and sunny at the start of the race. I was tired before I even began -- I lost an hour of sleep with the time change, plus we all went to a St. Patrick's day dinner/dance last night, and I helped with the set up and the break down, and then threw Catherine around the dance floor a little bit, so I was tired this morning. (That's me in the picture on the left with two of the teachers from the kids' school.) On top of that, I think the ear infection I had two weeks ago is coming back. So those are all of my official excuses, which every runner needs.

The ShamRock & Roll starts at Toad's Place, an iconic New Haven rock club, and goes up Prospect Street, about three-quarters of a mile straight uphill. I've been doing some hill training lately, so I managed to pass some people on the way up. The trip down was a little easier, and I actually had enough energy to pick it up near the end of the race and pass a few more people in the last few hundred yards.

So it was overall a good race, my first in more than 4 months. It was nice to run outside again and to push myself a little bit. Most importanly, I look good, as you can see. I need a nap, but it all felt good at the time.

Interesting Article

Nice article from CNN, "Where's the Cure for Cancer?"


The President is proposing billions more dollars for cancer research, with the goal of a cure for cancer. (His mom's cancer is no doubt playing into that decision.)


The article, though, brings up the complications that come with that noble goal: there are over 200 different kinds of cancer, all very different. (Heck, there are 30 different kinds of NHL, all extremely different from each other.) So finding "a cure" is going to be tough. Some researchers think a cure might even be impossible for some cancers, and a more realistic goal is to keep some cancers in check so that they are more like chronic diseases. Follicular NHL is often seen in that way -- chronic, so that it is treated as necessary.


I'm no cancer expert, but it seems to me that some of the research being conducted does hint at a common genetic trigger for a lot of cancers. I wouldn't want to abandon a search for a single cure -- it's from that research for a single cure, looking deep into a bunch of individual cancers, that we'll learn more about those individual cancers. I say, don't cut off any possibilities. Big gains come from big goals.

Vids of the Kids

This past weekend, the kids performed in the Connecticut Young Musicians Festival. All three played piano, and all did well.

As I explained about a year ago in a Lympho Bob entry, the YMF gives kids an opportunity to perform in a competition setting without the direct competition. They are judged on their performance, but not against one another. All three of the kids were complimented by the judges. They'll get their scores in three or four weeks.

Last year, I promised video of their performances. Alas, computer and video camera problems made that impossible.

This year, those problems are fixed. Enjoy the vids of my talented kids.

Here's Peter's performance:

And John's:

And, finally, Catherine's: