Spring

Spring is officially here. Baseball season has started, and Peter made his school's team. He finally got the OK from the hand doctor to swing a bat, about an hour before try-outs. He's happy, and so are we.

The rain around here will eventually stop -- I assume -- and the nice spring weather will make its way here. The kids are looking forward to it.

And they're looking forward to cook-outs, too, one of their favorite things about the warm weather.

I don't usually look forward to them. I like like the food well enough, when I can actually eat it. But I lose half of what I cook due to hot dogs rolling off the grill.

Thank goodness this product has arrived. Check out their website, too.

You won't be able to eat just one. And now we know why.

This is not the kind of thing a cancer patient is supposed to be encouraging.....

Targeted Therapies

Cool video from the Cancerwise blog, published by M.D. Anderson Hospital in Houson, one of the better hospitals for lymphoma in the country. The blog entry features a video interview with Dr. Anas Younes, a lymphoma researcher at Anderson.


The video takes you through the research process for lymphoma drugs, particularly those drugs known as "targeted therapies" (which are pretty much the only kind of treatments being developed these days). Younes explains how his team looks at newly developed drugs and determines how they affect lymphoma cells at the genetic level -- how they affect the genes within the cells. (That's what makes them "targeted" -- unlike conventional chemotherapy, which wipes out pretty much anything in its path, targeted therapies seek out cancer cells specifically and mess with their genes, causing them to die, or at least stop growing.)


After the team identifies promising treatments in the lab, they are tested in a series of trials on humans to determine if they will work -- and will be safe.


I've written a lot about targeted therapies before. It's absolutely the future of cancer research, not just lymphoma research. As Younes points out, the targeting means greater effectiveness with less toxicity -- again, very unlike chemotherapies.


I thought it was interesting that Younes says that, after they find a promising drug in the lab, they start to use it in various combinations. Combinations, he says, are the most likely source for a cure, rather than single agents. Makes sense: survival rates for Follicular NHL have nearly doubled since Rituxan, a targeted therapy, has been combined with all sorts of other existing treatments.


Here's the video. It's a little over three minutes long, and a little bit science-y, but kind of cool to see how the whole process works.

The Bands Played On

This past Saturday, both John and Peter participated in the FMI All-State Bands concert. Peter's done it before, but it was John's first time.


The FMI All-State Bands are open to kids in Catholic schools in Connecticut, and the program consists of four bands: Gala, Concert, Symphonic, and Jazz. John was invited to join the Gala band this year on clarinet. This band is made up of mostly fifth graders who have advanced enough in their music study to handle more complex pieces than they typically play in school bands.


He practiced his butt off and did a great job. As an unexpected bonus, one of the five pieces they performed was one of John's favorite Wii Rock Band songs, "Eye of the Tiger."


Here he is:





Peter performed with the Symphonic Band for the third year. He had a real shot at Jazz Band this year, which takes only four alto saxes, but broke his finger a few days before the audition. He also missed the Symphonic Band audition, but the directors held a spot for him anyway since they knew what he could do. He'll try again next year for a high position in Symphonic and maybe a spot in Jazz. John will audition, too.


The video is the band's performance of "Atop a Scottish Highland," a medley of Scottish songs. You can only see about half of Peter's face in the video -- wait until the end when the conductor introduces each section for a quick view of his full face.

We're very proud of both our boys.

Another Reason Cancer Sucks

My sabbatical last fall was great for me professionally, and in some ways, personally. But in others, not so much. I had too much unstructured time, and I fell into some bad habits. I put on some weight, and my cholesterol went up past 200. The rise in cholesterol made me angry -- it's always been very good.


So I've changed some habits, and I've been doing better. I get my cholesterol re-tested in a month or so, and I've lost about 12 pounds -- enough that it's starting to show.


But here's the problem -- no one can tell me that.

I mean, who's going to say to a cancer patient, "Hey -- are you losing weight?" What kind of a jerk does that?

I have to enjoy my looser pants all on my own.....

More From Strudel

So Cancer Boy is all happy yesterday. I don't know why. He says the Markets lost. I ask him, why so happy? You mean the stocks markets? Don't that make you sad?

People care about these things.

Cancer Boy says, No, the Markets. My brother der Hockey Man is crying.

I don't understand.

Is basketball, he says.

I still don't understand.

But it make Cancer Boy happy, so i get belly rubs. So what do I care about the Markets?

Then today, Cancer Boy is sad again. He says Looey Vull lost, too. I don't know who Looey is, so i don't bother asking. that just make ME sad, like when by bone went under the couch and I couldn't reach it and Cancer Boy just sit there with his computer laughing at der You Toob. So I don't even ask who Looey Vull is and whats he lost.

I hear Cancer Boy talking to The Nice Lady, telling her the Markets lost and so did Looey, but Mary Land won. Again, I don't bother asking. He tells Nice Lady that he hoped the Markets lost so he could laugh at his brother.

People emotions are so complicated.

Then i go online and I think i see what is going on.

Cancer Boy and Hockey Man both so stupids. Every body knows who is going to win. The Georgia Bulldogs or the UConn Huskies. Don't you dare say the Kentucky cats! I'll bit you. BIT YOU!!

What the Markets and Looey both need is a "inside presence." I'll calls my friend. He'll help them both.

Losers.

From Strudel

It's been a while since Strudel has been a guest blogger, but she's been online a lot lately (still mad that we won't let her have her own Facebook page), and she has a video she wants to share with you.

As always, I've done only mininal editing. If I try to change what she has written, she gets upset and threatens to post nasty comments.

##################################

Hello Good Peoples.

Cancer Boy says I only can post two things: either goods, happy things, or things about cancers. So I do both.

See? I can do both. Cancer Boy says I get too angry sometimes. Know what makes me angry? Cats. And dogs that pee in my yard. Is MY YARD!!! He Dame! Das ist nicht Ihr Hof!

But, no, no. I am not angry. The dogs are not in my yard now.

I show you video, yes?

Is a cancer video. Living strong. I say to Cancer Boy, this is a Nodes of Gold, yes? But no -- is not lymphoma man in video. Is other cancer.

But what is so great about video man? He loves his dogs. You watch der video, don't care about the man -- watch the dogs! Beautiful dogs!

They work hard, yes? They don't look like German dogs to me, but maybe. If I could get closer and get just a little sniff, then I could tell you for sures. From the back, from what I see? I say, maybe Finland. Canada. Someplace cold.

So you remember -- watch the dogs.

Here's the nice video.

And if you are a dogs, you stay off my lawn! Ich werde Sie nicht töten, aber Sie werden lustig nachher laufen.

Happy St. Patrick's Day

I'm giving you this a day early to help you get into the mood.

We celebrated a little early, too, going to a St. Patty's day dinner on Saturday night with the kids. (Which won't stop me from eating more corned beef tomorrow, of course.) The "Everyone Loves an Irish Italian Boy" t-shirt from my brother was a hit with my mixed-marriage friends.

To celebrate the day, please watch a clip from Conan O'Brien, in which he goes to Chinatown in NYC to try to drum up some enthusiasm for St. Patrick's Day. Amusing stuff. And more appropriate that the Family Guy clip I was considering.

As a bonus, you'll also find, at the end of the video, a link to the clip of Conan going apple picking with lymphoma survivor Mr. T. How great is that?

And remember to be careful about your wardrobe -- in Ireland on St. Patrick's Day, you're allowed to pinch anyone who isn't wearing green.

Personalized Medicine

I want to give a link to a short piece called "Personalized Medicine: Not Just a Conecpt" by Karl Schwartz, President of Patients Against Lymphoma, and published on te blog on PAL's website, Lymphomation.org.

Lymphomation is the source online for information about lymphoma, especially for the newly-diagnosed, and Karl is probably the best person to explain things to you if you need them explained. He's a gem.

Anyway, this particular blog entry focuses on the idea of personalized medicine, something I've brought up here a lot. It's the idea that science is advanced enough that we can look deeply into tissue samples and see tiny differences, so that two people with, say, Follicular NHL might actually have two very different versions of fNHL. As such, they will require and/or respond to different types of treatment.

Right now, treatment is a crap shoot. Follicular patients like me might have a choice of treatments, much like the choice I've been facing: CVP or Fludarabine. Right now, we'll go with CVP based on my age -- there are fewer potential long-term side effects with CVP than Fludarabine, and since I expect to be around for a long time, we should avoid those side effects.

But with personalized medicine, the doctor would be able to look at a sample of my cancer cells and say, "Based on what we're seeing [maybe a certain protein on the surface of the cells, or something like that], research shows that you're more likely to get a favorable response to Fludarabine than CVP. We know this because clinical trials looked at 300 samples and we've been able to figure that out your protein is a biomarker for success for Fludarabine."

The good news for me is, the new director of the Yale Cancer Center wants all patients there to have tissue samples on file, so when new discoveries come about, they'll be able to start matching people up with potentially more effective treatments. I don't know if my biopsy is automatically included, or if they'd need a new one ("Take my lymph node -- please'').

As Karl's blog entry points out, the National Cancer Institute's Biospecimen Research Network has already done a lot of work to make such a system become a reality. And Karl discusses a couple of lymphoma-related trials that have already begun making those kinds of discoveries (not for Follicular NHL, however) -- this really is becoming a reality.

As always, very cool stuff happening out there. Lots to be hopeful about.

Rituxan

The web site CancerNetwork.com posted an interesting article about a month ago called "Monoclonal Antibodies in Advanced B-cell Lymphomas." I've had it bookmarked for about a month, and I'm finally getting around to posting it.

It's a really nice summary of what we know about monoclonal antibodies -- starting with Rituxan, and discussing the ways it has been improved, and may continue to be improved.

For example, the dosing schedule for Rituxan has been played with. It started at 4 rounds, and now it can go up to 8. Another improvement has been its use in maintenance therapy; it's been shown to prolong the effectivenes of chemo when it is given on its own, six months after chemo is finished (or thereabouts).

Plus, there are other attempts at creating new monoclonal antibodies -- lots of them. They improve on Rituxan (we hope) in lots of ways. Some are made from human antibodies, rather than from mice. Others target proteins other than CD-20 (which is what Rituxan targets), or bind more efficiently to CD-20, allowing people who have become resistent to Rituxan to have another option before chemo. I'm especially interested in Lumiliximab and Galiximab, which are made from macaques. Give me some of that monkey stuff!

Whether or not these new attempts will be better than Rituxan is still not known. Ideally, they'll be at least as good, if not better. Maybe they'll work in combination with one another and be even more effective. The point, of course, is that it all provides us with more potential options.

March Madness

Good news about Peter: He got the OK to go back to playing piano and saxophone. He can't play basketball (there are only one or two games left in his team's season anyway), but he's got the music back, and that's a great thing.

Speaking of basketball, with the NCAA tournament coming up, I thought I'd throw in a little trash.

One of these two men is Buzz Williams, head basketball coach at Marquette. Can you guess which one? Take your time -- it's tougher than it looks.

I wish I could take credit for the comparison, but I can't. My thanks to the guys at Extra Mustard at SI.com. Marquette is on the bubble for the NCAA tournament, so we might not see any more of the Buzz Williams Curly Shuffle until next fall.

On the other hand, thanks to their sweep of Syracuse, the boys from Louisville look like they'll be dancing soon.

Might even see BU representing the America East Conference. Finals on Saturday against Vermont.

And with Maryland crushing Duke (and a few parked cars) last week (folks, setting fires after the game on the streets is bad enough, but setting fires on the court?), plus Quinnipiac rolling along, it could get really interesting around Lympho Bob land very soon.....

5k

My support group friends told me I should view the Partial Response as a victory worth celebrating. So last night, Isabel went to dinner and a play (the very funny Sylvia at the Long Wharf), and this morning, I ran a 5k road race, the WPLR ShamRock & Roll in New Haven. I've run it twice before, and this time, I finished better than either of the other times, in 29:01, about a minute and a half faster than my previous best for this race.

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The ShamRock & Roll is a nice race, but the first half is pretty much uphill. I've been working on hill runs to strengthen my legs, so I felt good about getting a personal best. But when I got there, the details about the race started to pile up, and didn't feel quite as confident. First, they announced that this year's race had almost 2000 participants, 600 more than last year; that meant lots of people new to this race or new to racing, period. Plus, there was a new route because of construction. Both of those could be bad things.

My fears were realized. The new route took us off of the wide street we started on in the past. The narrower street meant we were all funneled together for the first half mile, so there was no room to pass anyone. I know from experience that if I try to speed up to pass people whenever I see a hole in tyhe crowd, I use up too much energy early on and finish poorly.

Then when we hit the big hill after a half mile, all those racing newbies just started walking. Seemed like most of the walkers stopped ubruptly, right in front of me. I resigned myself to just enjoying the race and not worrying about my time.

The race course was a little different at the top of the big hill, too; we usually turn right and then go up a short but very steep hill before looping back around and going downhill, so I had conserved energy for that. But this year, we turned left and began going downhill right away. Little did I know, the new course had us turn one more time and head back uphill again, something I wasn't prepared for.

They did that too me again near the end, with about a half mile to go, sending me back up one more uphill when I was expecting all flat ground. I started picking up speed a little too early, and I started dying a little near the end. I tried to remind myself that I wasn't worrying about time.

But then I turned the corner for the final stretch, and saw the finish clock was at 29:12. My best on this course had been 30:30. I knew was going to beat that easily, but I really wanted to break 30 minutes. I gave whatever I had left and finished with the clock at 29:44. Because it's such a big field, it took me 43 seconds to actually get to the starting line from where I was lined up, so my net time (from starting line to finish line) was actually 29:01.

I came in 974th out of 1844, just out of the top half. Pretty good for a guy with cancer.

Official results are here.

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Near the finish, about 100 yards before I turned and saw the clock, a young woman just up ahead of me stopped running and started walking. She's got to be a newbie, I thought. Either she didn't know how to pace herself, or she didn't know the course well enough to know how close she was to the finish. As exhausted as I was, there was no way I was going to stop with about a tenth of a mile to go.

Which is, of course, the Big Metaphor for all of this cancer stuff. Today was my first race since I started treatment, and being treated makes for a whole different mindset. My best race ever came three weeks after I was diagnosed. I won't say I was getting complacent, but running hadn't really been burning that fire in my belly for a while. The fire is back, I'd say. I feel like I've got something to prove to myself again.

I've felt fine through all of this, but I know the treatments to come will be tougher, and I might get discouraged along the way. But I know I be like that woman so close to the finish. I can't just stop.

Scan Results

Well, no surprises with the scan results. The Rituxan knocked things back some, but not enough for a full Complete Response.

Some of the nodes have shrunk down to normal. Others, especially the deeper ones that were causing the leg swelling, have shrunk by about half, though still not back to normal. (From about 6 cm down to 3 cm, or 2 inches down to 1 inch. Normal is about 1 cm, or a third of an inch.)

This is all in line with what I expected, as I said last time. The leg is still a little swollen, though much better than it was, so I knew there probably wasn't a Complete Response. That's rare, anyway -- maybe less than 10% of patients get a CR from Rituxan alone.

So the good news in all of this is that I did get a response to the Rituxan. Some folks aren't that fortunate, and the cells stick out their tongue at the Rituxan and the nodes actually grow instead of shrink. So we're happy about getting a response.

We talked about the next step, too, so we'd be prepared when the time comes. He thinks going back to watching and waiting is the way to go at this point, and I agree. The Rituxan may still continue to work for a while, so it's possible things will shrink even more. If things get a little better, or stay about the same for the next 6 months, then we'll try another round of Rituxan. If things get worse, we'll go with one of the milder forms of chemotherapy, probably CVP. I asked about some other options, like Fludarabine (which I wouldn't want to do, given some of its possible long-term side effects) and Chlorambucil (which I still haven't researched enough to be comfortable with), but he seems to favor CVP and so do I.

I think Isabel was a little down when we were done, especially with the discussion of chemo. There's a decent chance the Rituxan will hold things off for a while, and we'll just repeat Rituxan infusions for a couple of years. But, for me, I need to know what the next step is going to be, so I dragged out that chemo conversation for a while. It helps me prepare myself mentally. It's always hard on the caregivers, as I've said before -- keep them in your thoughts and reach out to them when you can.

So, bottom line: the Rituxan did its job in knocking things back a little, and now we're waiting to see if it keeps holding things in check. I go back to see Dr. R in 6 weeks. Blood tests will give us a sense of how things are going, but mostly it's going to be my own observations of how I feel that will tell us where we're at.

And I feel...

Good! Sing it, James.........

Scan Today

Had my CT scan this morning. Never a fun experience, but it wasn't too bad.


As usual, I had to drink the barium milkshake beforehand, which does a number on my stomach. It's a full quart of thick, white sort-of sweet liquid -- five good plastic cups worth. The first few cups are tolerable, and then it's a struggle. They usually give me an hour or so to get it down, and then the scan itself is only about 5 minutes long.


Today, as I was in the waiting area, choking down my barium, a man came in for a scan. He was tall and muscular, and wearing a fire department shirt. He poured himself a full cup of the barium and sucked it down in one big swig. I usually take anywhere from a sip to a gulp, wait 30-60 seconds, and take another, slowly working my way through it all in about 10 minutes. But this guy did a full cup. I was impressed. But then I noticed that it took him a good five minutes to work up the nerve to take the second cup. And then another five minutes. Seemed like a tough guy, but he was just a poser. He was halfway done when I got called in by the CT tech. Slow and steady, baby -- that's how you do it.


I see Dr. R on Friday for the results of the scan (and thus the results for how well the Rituxan worked). There are several possibilities for what we might find out:


The best news, of course, will be that it was CR -- a Complete Response, with no evidence of cancer, no nodes even a little swollen.


Second best will be a PR -- a Partial Response. Maybe a little swelling someplace.


Not so good would be finding out that the Rituxan didn't work at all. Pretty remote chance, but it's always a chance.


My guess for the results? It will be a PR. I just don't think it's Complete -- the thigh is still a little bit swollen (though way better than it was two months ago), and I can maybe feel the nodes popping up just a little (though it could be something else, like scar tissue). Then there are those deep internal nodes that had Dr. R worried -- no way to know how those have responded to the Rituxan until we see scan results, so we'll find all that out on Friday.


Even if it is a PR, that's OK, for a couple of reasons.


First, Rituxan takes time to work. Some people in the support group thought I should demand more time before we had a CT scan, since Rituxan can take months before it fully does its job. But I'm anxious to see how things are going. So even a PR could turn into a CR down the road a little bit.


Second, even if it is a CR, I have to be realistic about it. Rituxan just isn't going to be a cure. It will come back. It would great to get a couple of years of remission out of it, but really, I'll just be waiting for it to come back anyway.

I'm not upset about that -- just realistic. Miracles do happen, and I'm praying for one. But I'm preparing for something a little bit less.