Monday, August 30, 2010
As the article says, there is the growing feeling that Treanda (Bendamustine) might be considered as the standard first-line treatment for fNHL, replacing CHOP chemotherapy. Currently, lots of people (though certainly not all) recieve CHOP as their initial treatment, especially when the fNHL is more aggressive, or (it seems to me, based on my suppprt group) if the patient lives somewhere that makes constant vigilance more difficult. CHOP is a fairly aggressive treatment, and with it comes aggressive side effects, including potential heart damage. Treanda has proven to be as effective as CHOP -- maybe more effective -- with less toxicity, and therefore fewer side effects. The study described in the link was conducted in France, and now other researchers (including some in the US) are trying to confirm the results with their own studies. I'm especially interested because Dr. R mentioned Treanda as a possiblity for me; in fact, he said this treatment was the one he had in mind for me next, but then he pulled back and said he didn't want to be pinned down. So I'll be watching this research closely.
The other issues discussed involved RIT and other post-remission therapies. There's still no clear answer for what a patient should do after receiving initial treatment. Nothing? Rituxan maintanance? RIT? All have their pros and cons, as the article points out. Something else that I'm very interested in, given my desire to be at least one step ahead of where I am now.
The full ASCO conference will take place later this year, which means more follow-ups on earlier research, and reports of new research. That's always exciting to read about. Hope is a good thing...
Friday, August 27, 2010
He called my bloodwork "fantastic," and saw no physical signs of any troublesome nodes. All of that is good news, of course.
We discussed treatments again -- I like to have a plan, ideally with some choices. We talked about Velcade and Treanda a little more (those were the two treatments that he'd mentioned last time). I asked which he'd lean toward, thinking I'd argue for Velcade. He surprised me a little and said he was leaning toward Treanda, a treatment that has been shown to be as effective -- maybe even more effective -- than CHOP, but with less toxicity.
He backtracked a little then, and said he would make that decision based on what we were dealing with. If things seemed more aggressive, or if I was having more infections, even with nodes that weren't popping out; or if there was more leg swelling -- any of those things could signal the need for a different treatment. Everything is on the table, which is good news, because everything is still available -- even straight Rituxan, if the situation called for it.
So that's where we are. Things are nice and stable, and while we don't have a specific treatment plan, that's good news, because there are no signs or symptoms that would suggest a specific plan. My job now is to stay healthy, stay informed, and keep watching and waiting.
And to get ready for classes on Monday.....
Wednesday, August 25, 2010
But now it's time to get back to work. Isabel and I start on Monday, and the kids start on Wednesday. I have nice memories of this time of year: a new crop of saturday morning cartoons, laves will change soon, and the farmer's market will start selling apples and pears.
But one thing has remained constant: I have an appointment with Dr. R on Friday. I don't anticipate anything major. I'm feeling fine and not noticing any big changes in any nodes. We'll probably talk about treatment options, including the two that he kind of sprung on me last time.
The appointment is in the morning, so look for an update sometime Friday afternoon or evening.
Thursday, August 19, 2010
While we're on the subject, Jon Lester, Non-Hodgkin's survivor and All-Star Red Sox pitcher, is having an excellent season.
I start to get into full Red Sox Mode this time of year.....
Monday, August 16, 2010
Peter spent last week at the Summer Jazz Program at Neighborhood Music School in New Haven. We have some video of his performances.
Peter has always been told by his teachers that he's a very good alto saxophonist, especially in a technical sense. Give him music and he'll play the notes very well. With Jazz, of course, playing the notes well is only the starting point -- then you need to be able to take off from there.
So we were hoping that the Jazz Program would sort of simultaneously humble and inspire him. There were about 35 kids in the program, ages 13 to 19. Peter was one of only three 13 year olds, so he got to play with some very good young musicians. They were divided up into small ensembles and also came together as a big band. Five days, eight hours a day of intense training in improvisation, music theory, sight reading, and other jazz topics, plus practices with the small ensemble and the big band.
At the end of the first day, he wrote on his Facebook wall, "I have a lot to learn." At the end of the second day, he told us there was no way he'd ever do this again. At the end of the third day, he said he was feeling more confident. At the end of the fourth day, he told us the day was "good" -- the first outright positive thing he'd said all week.
At the end of the fifth day, the ensembles performed. And you can see from the look on his face at the end of his solo in the first video that it finally kicked in. Our boy is officially a jazz musician.
Friday night, the end of the fifth day of the program, the small ensembles got to perform. Peter's ensemble was made up of kids who were in the Jazz Program for the first time. Peter was on alto sax, and there was also piano, bass, guitar, drums, and trumpet. Their first song was "Watermelon Man" by Herbie Hancock. Each kid got at least one solo during the ensemble's three songs, requiring them to improvise. Peter was a little concerned about this at first -- and so were we, frankly -- but he was proud of himself after the solo, and the crowd was appreciative. It comes at about the 1:35 mark.
Their second piece was "Some Other Blues" by John Coltrane. Peter's solo comes earlier in this piece.
They also played a jazz version of The Flinstones theme song.
On Saturday, the Jazz Program's Big Band had the privelege of performing on the New Haven Green as the opening act of the annual New Haven Jazz Festival. They performed five songs, three of which are below.
Peter doesn't have any solos -- they go to the older, more experienced kids -- but he did enjoy the experience. He's hard to see behind his music stand, but he's recognizable.
One song they peformed was Gershwin's "Summertime," which featured a vocalist named Erica Bryan. Remember the name. She's 18 years old and outstanding:
They also played "Trofeo de Bolos" (which translates as "Bowling Trophy"):
Peter's favorite piece was "The Creeper":
We're very proud of our boy, not only because he's so talented (that's genetic, after all; he has that Juiceboxx DNA), but because he really got knocked back a little by all of this at first, but took up the challenge and did very well with it. It's given him the inspiration that we'd hoped it would.
Plus, he wrote on his Facebook page, "I've got a lot to learn." How many parents of a teenager can say that their kid admitted that?
Sunday, August 15, 2010
This was an interesting weekend. The West Rock Challenge benefits Habitat for Humanity, but they don't advertise it very well. I happened to see a small ad for the race in a newspaper about a month ago, and put it on the calendar. When I looked up last year's results and saw the small field and slow times, I though I might have a shot at winning an age-group prize. Plus, the race is run at West Rock State Park in Hamden, which I know very well. I got excited about this run.
Then the kids told us about a camp-out at our pool club -- which, of course, was scheduled for last night. Fine. I can deal. I knew from experience that we wouldn't get to sleep before midnight on of these camp-outs, and that sleeping in a tent on an air mattress won't necessarily mean a good night's sleep, but I figured as long as I could get a little nap in during the afternoon, I'd be OK, even with the race starting at 7:45am. After we decided we would do the camp-out, we realized that Peter's jazz band was the opening act for this year's New Haven Jazz Festival (I'll post video in the next day or two). The 3pm start for their gig meant that I wouldn't be napping at all. Darn it. Well, as long as my air mattress held out, I'd be OK, and not too sore for the race from sleeping on the ground.
(The air mattress did hold out, thank goodness.)
West Rock is beautiful. We've been taking the kids there since they were tiny. We still go every now and then, and we always see something interesting on our walks -- newts to catch with nets, the occasional deer or snake. Once we saw (and heard) hundreds of mating frogs. (That was really interesting.) The path around Lake Wintergreen is about two miles long, and while it has some rolling hills, it's reasonably easy to walk, even with an enthusiastic dog and a reluctant girl. Only one tough spot, where the trail goes up and through some large rocks that require a lot of balance and a little muscle. (That's Strudel's favorite part -- makes her feel like a wolf.) We don't usually do the side trails, so I'm not really familiar with the terrain, but I could see from the race map that we'd be doing that two miles around the lake, so I felt OK about it overall. I assumed we'd take a longer route around those rocks that Strudel likes so much, since the race was described as "mostly flat with some rolling hills."
Registration was at a school about a quarter mile from the park, so we had to walk to the starting line after we registered. This race also include a 9 miler, in addition to the 5k. The niner goes up to the top of West Rock Ridge. No way I was doing that. I've been running pretty well all summer, but I usually stop at 3 or 4 miles. We all saw the 9 milers take off at 7:30, and then prepared to wait around for 15 minutes until our race started. At least that was what I expected. Turned out we had to walk another half mile to our own starting line, down a trail. Had I known I was going to walk nearly a mile before we even started, I would have done a shorter warm-up run.
We got to the 5k start, and I sized up the competition. I like to identify a few people that I think I can beat. Mostly these folks are old and fat like me, though I occasionally challenge myself. And I am often surprised by how fast some people are who look slow. I picked out a couple of old fat people to try to hang with. As we were getting close to starting, a couple of stragglers came to the line. I noticed one immediately; it was hard not to, since he was about 6'3" with the body of a former athlete, muscular but covered in a layer of fat. He was wearing no shirt, and had a yellow bandana on his shaved head. The first two words that came to mind were "Meat Head." He struck me as someone who was trying too hard to look the part of a runner. I identified him as someone that I might want to beat, especially when he lined up just behind me.
The pack started off pretty fast, and we followed the trail around the lake, the one that we usually walk with the kids and the dog. It was a gorgeous day for a run -- overcast and about 65 degrees. Can't ask for more than that in the middle of August.
As we got close to the first fork in the trail, I thought for sure we'd break to the left, but we stayed close to the lake, which meant we'd be going over Strudel's Favorite Rocks. This is not an easy thing to walk, and less easy, I was imagining, to run. At this point in the race, we had all spread out a bit, and I was staying close behind a woman about my age, who slowed down as we started climbing these rocks. I can't say we were "running" at this point -- it involved actual climbing. Not enough to have to grab on with our hands and pull ourselves up, but we did have to stop for a second and pick out someplace to put your foot. The woman offered to let me pass her, but I declined. After the climb, my legs and lungs were burning a bit, and it was too early in the race to start with that.
Suddenly, someone came up behind us -- it was the Meat Head! He huffed his way past, but the woman and I stayed close behind him as the trail leveled out.
After a couple more minutes, I got into a groove, my breathing getting smoother again. But the Meat Head started walking, done in by his sprint up the rocks, so the woman and I passed him. We were maybe a mile into the race by now, and I was starting to pass a few other people who had started too fast. I was feeling good, enjoying the scenery, and gaining some confidence. As we came to the second mile marker, we were directed off the Lake Trail, and into the woods. I was hoping for something similarly flat.
My hopes were dashed. We were immediately put onto a trail that was carved into the side of the ridge, so it kind of angles downward on the right side, covered in roots and small rocks, and in spots, very steep. The woman I was running with dropped to a walk. Another woman just ahead who had passed us earlier did the same thing, walking the steep trail.
But I couldn't stop. I've never walked during a race (and there's no shame in doing so), but I feel like, for myself, I can't walk. I said to myself, "I'm a cancer patient -- I can't ever stop." I was near-walking, it was so steep, but my arms were pumping like I was sprinting, willing me up the darn trail. This trail eventually leveled out, too, with about a half-mile left in the race. A volunteer directed me to the proper trail as we changed direction at a junction. A few seconds later, I heard the volunteer talking with someone, a very deep-voiced man. I looked back.
It was the Meat Head! He was gaining!
The last part of the race was flat, but I was so spent by this point. The Meat Head gained on me, little by little, and eventually passed me. He beat me by six seconds.
I've never felt that tired at the end of a race. It took me a few minutes to get my breath back, and when I did, I went to the Meat Head, who was still bent over. I patted him on his wide, naked, sweaty back, and congratulated him on a good race. He shook my hand.
When I went to the support tent and got a banana and gatorade, the Meat Head came up to me and told me he didn't think he was going to catch me. We chatted for a few minutes. Turned out he'd torn up his ankle a year ago, and this was his first race since the injury. I didn't mention that I was a cancer patient; he seemed like a nice guy who might feel guilty about beating me.
Numbers, as I know all too well, can never tell the whole story. So, statistically, it was my "worst" race ever. But on the other hand, I came in 4th or 5th in my age group (a good 5 minutes after the 3rd place runner), so that's a pretty good statistic, too.
Good or bad, it was certainly one that I feel proud of. My guess is that the number of runners being so small is not so much about bad publicity as it is about people knowing the trail will give them a good butt-kicking....
Wednesday, August 11, 2010
As the title implies, it's a pretty basic overview of the different types of lymphomas, their causes, diagnoses, and treatment possibilities. Standard stuff for these presentations -- I've posted a few of them the last two and a half years or so.
Several things that stood out for me, though:
- She mentions the FLIPI, the prosnostic index for Follicular NHL. I've started to write about FLIPI a few times, but I always stop myself, because it's too easy to use the FLIPI incorrectly: as a way of predicting how the disease will affect an individual patient. That's not the point of the Index; it's supposed to be used as a tool for the doctor to decide how to consider treatment options. So, like all numbers and statistics associated with NHL, I ignore FLIPIs. (Of course, I also secretly and briefly cheer that my FLIPI is really low, but then I move on.)
- I'd never seen the statistics that she put out for Watching and Waiting. According to Dr. Gregory, 39% of people who watch and wait will go 4 years before needing treatment, and 19% will go for 10 years. That's pretty amazing to me; nowhere near that percentage of watch-and-waiters in my support group has gone that long. I have heard that anything over a year is "a good sign," since it means things are growing slowly, so I put myself in the Happy Group with my two year wait.
- She rushed through the section on treatment, but it was nice to be reminded that there have been excellent results with chemo + RIT, where chemo is given for fewer than the normal number of rounds (which is 6), and then Zevalin or Bexxar is administered to clean up the rest of what is there.
- I also liked her charts of treatments that will possibly be approved for use for NHL in the next 5 or 6 years. She listed 15 treatments now in clinical trials. A couple of them have already been approved, and not all of them will be approved for Follicular NHL, but even another 3 or 4 more weapons in the arsenal would be great, especially since newer treatments tend to be more targeted, which means, ideally, more effective but less toxic.
So, as always, there's something new to learn, and something new to be hopeful about.
Sunday, August 8, 2010
I got to see him yesterday at a water stop along the way, which was very cool. This is his third year riding, but the first year we'd been able to make it up there to cheer him on.
We met him at Lakeville's regional high school; I think the stop was about 2/3 of the way into the first day's ride. It was pretty impressive -- tons of people there to cheer on their family and friends. We parked way on one side of the lot and then had to walk to the other side to get to the road. I have to admit, I got a little teary-eyed when I took in the whole thing, seeing the riders come in, exhausted but energized; the people cheering them on and thanking them for sacrificing so much time and energy for cancer research; and just knowing that, in some small way, this was for me. (And other cancer patients, of course.)
It was good to see Mike ride in, and I was glad to see how good he looked. He and his teammates all -- they looked like they could have gone on for another 100 miles. In fact, they came in 20 minutes ahead of their schedule, which was impressive.
We took some pictures and gave some hugs, and sent Mike and his buddies on their way. It was all very cool.
I took a few pictures, and got a few from my sister-in-law, but alas -- I can't get either the camera to upload or the scanner to work, so I can't post any pictures right now. This is what happens when my wife, the family photographer, leaves us for a long weekend. I'll get them up soon.
In the meantime, you can read this story from the Boston Herald, and see a few photos that someone put up on flickr. I'll post my own pictures soon, and get some links to other online photos when they get put up.
Thanks, Mike. You're awesome.
Friday, August 6, 2010
Now, for many dads, this would be a recipe for disaster. Some of my wife's friends have suggested as much to her.
But I refuse, and always have refused, to be one of "those" dads. You know the type: like Bill Cosby, in his famous "Chocolate Cake for Breakfast" routine. His wife tells him to get up and make breakfast for the kids, and when his four year old asks for chocolate cake, he realizes it has eggs, milk, and wheat, and happily complies. Very funny bit.)
But that's especially funny this week, because the boys have been in baseball camp, and I was home with Catherine on Tuesday while Isabel went to work, and I took her to breakfast at IHOP so she could have a chocolate chip pancake. And the only reason I took her out on Tuesday was because, when I was in work on Monday, Isabel tried to take Catherine to IHOP for a chocolate chip pancake, but the line was too long, so they tried to go to our neighborhood bakery for a chocolate croissant, but it's closed on Mondays, so they just went across the street to the deli, which had stopped serving breakfast at this point, so Catherine had a large chocolate chip cookie for breakfast at 10:45.
This is, of course, on top of the chocolate chip pancakes I made for Catherine on her birthday morning. It was that kind of a week. At least it was, until Isabel left.
(For the record, this morning for breakfast, Peter had a bagel with cream cheese; John had a ham and cheese tortilla; Catherine had toast; and all three had fresh fruit.)
Tuesday, August 3, 2010
It's not too late for you. Click here to donate. The money will go to cancer research at Dana Farber in Boston.
Good luck, Mike! Pedal hard!