Wednesday, June 30, 2010
But Velcade was new to me. The name is familiar, but it wasn't something I associated with Follicular NHL. I asked the support group if anyone had used it before, and a few had. Sounds pretty easy to take. It's basically an injection, twice a week with a week off. It works by inhibiting proteasomes, which are normal parts of all cells. As I understand it, they clean up spent and deformed proteins in the cell. Velcade keeps them from doing their cleaning up, which results in the cell dying. Seems like it would like one of those people on the show Hoarders, but without the intervention.
One very interesting thing I've found in my research is a warning that green tea might interfere with Velcade. Apparently, the antioxidant in green tea extract (which equals about 50 cups of green tea) binds to the Velcade, keeping it from binding to the cancer cells. Makes sense -- the job of an antioxidant is to bind to a free radical and render it harmless. Here, the green tea antioxidant is binding to something that might harm the cell and keep it from cleaning itself up. The researchers have only tested this in the lab, since testing it on actual patients would be "highly unethical." They though the green tea would cut down on Velcade's side effects, but instead found that it wiped out all of its positive effects. Fascinating.
Even more fascinating? The health care system in Britain agreed to a deal with the manufacturers of Valcade a couple of years ago, whereby they would get paid only if the Velcade worked. Apparently, about one-third of British patients did not respond at all to Velcade. Now there's some question about whether or not drinking large amounts of tea might have influenced those British patients' results.
Goes to show that nothing is as simple ("Antioxidants are good for you") as it seems.
More importantly, Velcade is now on the table for me. From what I've read, and from what I've heard from the support group, it's pretty well tolerated, easy to administer, has few short-term side effects, and its long-term side effects are more likely to be present only if it is taken for a long time (which Dr. R says will not be the case for me).
Add it to the list.
But I still have lots more to read and think about.
Monday, June 28, 2010
The last time I saw Dr. R, we said we would use today's visit to discuss our next steps. I wanted to consider another 4 rounds of Rituxan. It's not standard practice for patients with Follicular NHL, but it's certainly a possibility. There are a couple of people in my support group who have done it, and it seems to have worked for then. Dr. R has seen plenty of data for following up heavy chemo with Rituxan after 6 months, but there's less out there that shows success in continuing Rituxan 6 months after taking Rituxan.
Back in the early spring, I was pretty certain I was going to fight him to continue the Rituxan.
Today? Meh. I don't have that fight in me.
So he suggested, based on bloodwork and everything else, that we just leave it alone for now. I know that people who take straight Rituxan can go 2 or 3 years before they need anything else. It's been close to 6 months for me.
My logic for wanting to try the Rituxan was (1) I'd rather try it now when I don't really need it so if it doesn't work, I won't waste time using it if I DO need treatment, and (2) summer is a convenient time for treatment for me.
From our conversation, it sounds like he wouldn't recommend Rituxan again anyway. His logic is that if I didn't get a complete response the first time, it probably stopped working, so it's not worth the bother. And in response to my wanting to know now whether it's still working before I need to know, he doesn't think it's worth it to go through all of that time, effort, and possible allergic reaction for nothing.
So we're back to watching and waiting, basically. In the last few weeks, I've felt less of a need to attack it. Maybe it's the heat and my being too busy; maybe I'm just feeling good and not wanting to mess with it.
We talked about the next step. He's still open to CVP, the combination of chemotherapy drugs. But he also called CVP "a little old-fashioned," and said he wanted me to know that he's up on the more recently-used treatments. (I love that I have him on his toes that way.)
He mentioned two possibilities that he hadn't mentioned before.
One is Treanda, also known as Bendamustine. I've written about this before. It's most often talked about in comparison to CHOP, the heavy chemotherapy. Treanda has been around in Europe for a while. It has been shown to be as effective as CHOP, but with less toxicity and causing less potential damage to the heart (a major side effect of CHOP). I think of Treanda as something to be used "down the line."
The other new possibility is Velcade, also known as Bortezomib. I've written about this once or twice before, too. It was originally approved for use with multiple myeloma (a bone marrow cancer) and Mantle Cell Lymphoma (an aggressive type of NHL), but has also been used with other types of NHL, including Follicular. Velcade is not chemotherapy; it's a class of treatment called "proteasome inhibitor," which works by targeting proteasomes, which break down proteins. Velcade may stop certain proteins from being broken down, which in turn causes cell death. Dr. R mentioned one particular side effect of Velcade, peripheral neuropathy, or loss of feeling in the finger tips. But, he said, this usually comes from taking it for months, and I wouldn't likely be on it for that long.
One advantage of Velcade or Treanda would be that, unlike CVP, they are single agents. This is good becuase, if there is a problem, you know what's causing it, and you can stop. With CVP, you have to guess which of the three drugs is causing the issue.
So things are in a holding pattern of sorts, but there's still plenty to think about and plan for. But the important thing is, I feel good, and I have the gift of time to think about where to go from here.
Sunday, June 27, 2010
I have a follow-up appointment with Dr. R tomorrow. It's been almost 6 months since I started Rituxan, so it's time to think about what our next step will be:
We could do nothing -- watching and waiting some more. We could do another 4 rounds of Rituxan -- something that is becoming more common for Follicular patients, but nowhere close to standard practice. Or we could find that things are growing enough that we need to move to the next step and start a fairly mild type of chemo.
That last option is unlikely, given that I feel pretty good and I'm not noticing any kind of external signs that would indicate the disease is progressing. The Rituxan did a decent job over the winter.
More likely it will be W & W or more Rituxan. Don't know if we'll make that final decision tomorrow, or if we'll get some kind of scan or sonogram first and then decide.
The appointment is at 3:15, so I won't update until tomorrow night or early Tuesday morning.
The important thing, of course, is that I feel good now, so we won't have to make a hurried decision.
Wish us luck.
Tuesday, June 22, 2010
In this article, the authors focus on a potentially new focus for binding agents to lymphoma cells. We know that a surface protein common to lymphoma cells is CD-22. (You will remember that Rituxin isd attracted to CD-20). CD-22 is special because it belongs to a group of proteins that especially attacted to a sugar called galactose. The researchers discovered that this property would allow a monoclonal antibody or even a chemotherapy other agent to attach to the CD-22 and work particularly well to kill the lymphoma cell. Even better, the CD-22 doesn't need to be very strong; even a small amount of the protein will be detected. Early testing has shown that this approach might be effective for four different types of lymphoma (not Follicular -- yet). All of this happens because of the protein-galactose attraction.
There are some potential problems, which I don't fully understand, but which seem to be manageable. The Big Picture is that this presents a new approach that may result in more efficient/less toxic treatments, since even traditional chemotherapies will be able to target cancer cells and leave healthy cells alone.
"Hitting the sweet spot" will happen because of the CD-22 attraction to the galactose sugar. Get it? "Sweet" spot? I love oncology humor....
Saturday, June 19, 2010
The missing factor was, of course, Mr. T. Not just because he has Nodes of Gold as a Lymphoma Survivor, but because he's awesome.
Here's a video of Mr. T discussing his cancer. You will note the similarities between Mr. T and Lympho Bob, regarding cancer:
- Mr. T's enthusiastic quoting of James Brown
- Mr. T's willingness to discuss cancer openly and honestly
- Mr. T being a runner
- Mr. T's indolent lymphoma
- Mr. T and Lympho Bob's rakish good looks, stemming from our manly beards.
Peter enjoyed the movie. He liked Quinton Jackson as B.A., but, really, he's got nothing to compare.
(Bonus Mr. T video, because he deserves it).
Wednesday, June 16, 2010
Like, when one of them has a loose tooth, and they're afraid to take it out themselves, I first ask if I can pull it, and then always they say no, so I come up with an elaborate plan to pull it out. Like, I'll say we can tie a string to it, and then tie the other end to the dog, and then dip a tennis ball in beef gravy, and then throw it, so Strudel will chase the ball and pull out the tooth. They say no, of course.
So I have to admire the guy who tied a string to his kid's tooth, and then tied the other end to a model rocket.
How do I know he wasn't just messing with the kid and making it up? Because he posted a video of it on the internet.
It sorta seems like it was the kid's idea, and maybe it was, but he needed a Dad to really work out the logistics.
I admire Dad for convincing the kid to go along with it. And I admire him more for convincing the kid that it was the kid's idea.
You're horrified, but, really, a little part of you thinks that was pretty awesome, huh?
Monday, June 14, 2010
Last week's show featured Dr. Francine Foss, one of the lymphoma specialists at Yale, and a frequent guest on the show. Her specialty is T-Cell Lymphoma; mine is B-Cell, so it's unliely that we'll cross paths, but I do admire her ability to make compicated things much easier to understand.
The show's topic was What To Expect When Diagnosed with Lymphoma (click the title to hear a recording on the show). Certainly not immediately relevent for me, since in two and a half years I've pretty much figured out what to expect.
But it's a nice reminder of the Big Picture, and she does discuss the usefulness of watching and waiting, the miracle of Rituxan, the hope of RIT, touches on some of the more current approaches to treatment -- also nice reminders.
Friday, June 11, 2010
As promised, here is some video from last Saturday's recital from Tune Inn Academy, where the kids take piano lessons, and where I have been taking guitar lessons for two years.
The dad of one of Peter's friends had been taking guitar lessons there, too, and we had agreed last winter that we'd go onstage together. Even had a name for ourselves -- OGWG (Old Guys With Guitars). Alas, he had to drop out a couple of months ago due to a work conflict, and that left me. My teacher, the owner of Tune Inn, thought I'd drop out of the recital. But I stayed with it. I've long dreamed of playing on stage, and I knew this might be my only chance.
I embraced it enough to give myself a Guitarist Name.
Eric Clapton is Slow Hand. Saul Hudson is Slash. Me? I'm Juiceboxx.
The whole family was involved in this recital. The owner even asked Isabel to introduce some performers and make announcements.
Here's Catherine, playing "Pet Parade":
Here's John playing "Loch Lomond," a sad, slow song about a Scotsman who misses home:
And now, Peter playing "Thunderstorm":
Peter also played some drums. The owner of the school teaches piano, guitar, and drums, and always ends the recital with a drum line. This year, she only had two drum students available, so she asked three others (including Peter) to join.
But, really, you're all waiting to hear Juiceboxx, aren't you?
I actually performed before the kids did. I had asked my teacher to put me on early, because I was just a tad nervous and didn't want to wait around. As you will see in the video, it took us a while to get going. I was the second guitar player to perform, but the first one with an acoustic guitar, so I needed to have a pick up (basically a microphone) attached to my guitar. I stuck it on pretty good, and then my teacher needed to adjust the amp. Then she couldn't find her pick, so I discreetly gave her my spare. It's a full minute into the video before we actually start performing.
And then, when we start, she reaches back to adjust the amp volume, and hits the cord for my pick-up, knocking it off my guitar. We need to stop and start again. (To which I say, out loud, "Like I wasn't already nervous..." Apparently the students aren't supposed to talk, since I was the only one who did all afternoon. Age had its privileges.)
And then we finally played -- a tune called "Juiceboxx Blues," which we composed together. (Mostly her.) I play rhythm and she plays lead. The sound isn't great, but I thought we did OK. And it isn't really a blues song, but I liked the name.
While they were setting up for the drum line, Isabel read some announcements that the owner had written. Among them was a very special congraulations to a student who had enough courage to get up on stage despite his advanced height (not age). The crowd gave me an extra round of applause, which was very nice.
My first -- and quite possibly my last -- public performance, and I get a second round of applause. In the retelling, I'll say it was a demand for an encore.
Juiceboxx/Lympho Bob finally got to live the Rock n' Roll Dream.....
Tuesday, June 8, 2010
I should be grateful that I'm healthy enough to be so busy. I know lots of folks in my situation who are too sick to work, or are recovering from aggressive treatment, or who have just plain lost their jobs. I have a job, my health, and my family. I can't complain.
Last year on my birthday, I wrote about some small nagging health issues, like the weird dizzy spells I had been having. I talked about how the year after my 40th birthday was not a happy one (the diagnosis), but the year after my 41st was pretty good, health-wise. I made a wish for a healthy year following my 42nd. We all know how that turned out....
So if the pattern holds, this year should be a healthy one. My years are like Beethoven symphonies: the odd ones are great and the even ones suck.
That's as philosophical as I can get right now, given my energy level.
Speaking of music, I'll have one more "bragging" post coming up soon: video of the kids' piano recital from last Saturday. Peter also played drums in this one, so I'll add that performance, too.
And as a special bonus, you'll see video of the first public performance by a slightly older guitar player who goes by the name Juiceboxx....
....when I have time and energy to edit the videos.
For now, I'm going to have some cake.
Sunday, June 6, 2010
The National Cancer Survivors Day Foundation has set the first Sunday in June as its Official Day. Anyone who has ever been diagnosed with cancer, and is now still alive, is considered a survivor. No further work is necessary.
What's kind of cool about this year's day is that we found out Friday that a friend's cancer surgery was successful. they found a mass on her kidney, she had it removed, and found out Friday that it was cancerous, but the removal seems to have taken care of all of the cancer. She called us yesterday to invite us to a cookout this afternoon. I don't know if the cookout was already planned, or it's to celebrate her good news, or if she even knows today is Survivors Day, but it's kind of cool that she's doing something fun today.
So listen to a little Gloria Gaynor.
Then go hug a survivor. It will be good for both of you.
Wednesday, June 2, 2010
In the meantime, enjoy this: a replica of hockey's Stanley Cup, made out of 1000 TasteeKakes. I thought my brother might enjoy the Stanley Cup part, and I know Isabel (and probably her siblings) would like the TasteeKake part. I know how much Isabel misses her TasteeKakes sometimes. We didn't have them growing up in New England; we had Drakes Cakes. Devil Dogs and Funny Bones were excellent things. But for Isabel, it was all about TasteeKakes, especially Butterscotch Krimpets. When I was in Philadelphia a couple of years ago, I saw some Krimpets at the train station, and brought them home for her. I don't think she's had a fix since then, sadly.
Of course, I don't eat any of that stuff. Don't want to mess with my 181 cholesterol.....