Still Stable

Met with Dr. R this afternoon. Things still look OK. I'm still stable -- no real changes.


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I'll be honest: I was prepared for him to say something like, "Maybe we should schedule a scan and see what's going on in there." Not that I had shared that expectation with anyone (except Isabel). It seemed to me that the nodes near my left hip were getting larger; when I bent down to tie my shodes, for example, I felt some different pressure than I'd felt before. Those nodes are fairly close to the surface, fairly easy to feel, and I had convinced myself they were swollen more than usual. So the typical watch-and-waiter worries started up, and I began wondering if maybe I was transforming to something more aggressive, and would need aggressive chemo right away. Or maybe that they weren't all that much more aggressive, but at the point where treatment was necessary, so I'd start on Rituxin. So it goes -- every ache and twinge is magnified.


But, alas, none of that. Dr. R felt around, and didn't detect anything out of the ordinary, in the hip nodes or anywhere else. The blood work is still very good -- all of my counts are within normal range. He was very reassuring about it all.


After the exam, we had our usual Q & A session. I told him I'd been doing some reading in oncology journals lately. He laughed and told me I should be reading about the economy instead. This was part of his being reassuring, actually -- I'm stable enough to have other things to worry about besides the NHL, which is proceding normally (that is, slowly).


But he wasn't blowing me off. We did discuss my questions, which centered around treatment options. I told him about an article I read recently (one that I haven't linked or fully discussed here) that has to do with the idea of Follicular NHL being incurable, and how that perception shapes our approach to treatment. Basically, the article author says that as long we do things like watch and wait, we are admitting that fNHL is incurable. But if we were more aggressive from the start, we'd have a better chance at understanding which treatments result in a cure. Since fNHL affects mostly elderly patients, many of them die of old age before they die of fNHL, so we don't know what actually cures them. So trying for a cure early on with aggressive treatment will allow us to see which treatments really do last long enough to be called curative.


Dr. R understands this aggressive approach, but is more conservative about treatment. Essentially, he thinks there will be time for aggressive treatments when the time comes -- no need to rush them now, especially since I'm still not showing symptoms. It's more or less the conclusion that I'd come to, but I was glad to hear he thought the same thing. I like that he's being conservative, as hard as the watch and wait thing is sometimes.


And this is all so hard sometimes. It's been the same way, to varying degrees, from the start: feeling the need to do something, but feeling happy that I don't have to.


Still, this was a good visit. As my support group friends say, "Stable is a very good word." Dr. R debated with himself about when to do another scan. It's been two months. He decided that, since things look so stable, he'll wait another two months to see me again, and then we'll decide when to schedule another scan.

So I'll keep educating myself and staying informed and ready for when the time comes to make a decision.

Another Race

Yesterday (Saturday), I ran in the Reebok Homecoming 5k in Canton, MA (home to not only Reebok, but also Dunkin' Donuts. Great town!). I did OK: 28 minutes, 37 seconds, placing 165 out of 258 runners. Better than the New Haven Road Race, anyway. Official results here.

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This was my first 5k in Massachusetts. It was nice, because it came close to Mom's birthday, and she likes to watch me run (I think it reminds her that I'm feeling well). So Isabel and the kids got to watch me, as usual, but so did Mom and Dad, plus my brother and his family. Quite the crowd for me.

The race began at Canton High School. They had predicted nasty rain for race time, but it held off, which was great. A little humid, but decent racing weather. It was a good-sized field of runners I like that 200-300 range. Not too many, so it isn't crowded, but enough so that there's always someone close by, giving you someone to try to pass. They herded us onto Washington Street for the 9:00am start, but then started about 3 minutes early. Not cool -- a bunch of folks heard the horn go off and had to run in from the parking lot where they were doing last-minute warm-ups. As we took off, I noticed that we were on a slight hill. Not good -- I figured we were starting in the middle of the hill, which meant the rest of the hill would be at the end of the race. But I didn't look behind me to check for sure.

I felt pretty good after the first mile, and my time was decent. I got into a nice groove during the second mile, and I checked my time and saw that I was pretty close to a Personal Record at that point. I resisted the adrenaline urge that came from that thought, remembering how I died at the New Haven race near the end.

This time, the last half mile was a hill. One continuous hill, that got steeper as we got closer to the finish. I think race directors who lay out courses this way are sick. Hills are unavoidable, and I don't have a problem with them, but planning a steep hill at the end is a sign of a sadist. The hill slowed me down, but it didn't wipe me out. I finished decently, a 9:14 per mile pace, but I have to believe I would have broken 9 minutes if it was flat at the end.

On the plus side: some of the best post-race food I've seen, and among the best t-shirts I've received (dark green and understated in design). Plus, I came in first in my division (old fat guys from Connecticut). Nice race. And nicer with all of my family there to see it.

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As I promised him: for my brother, who has switched seasons from long distance biking to hockey: a video of the Top 10 Penalty Box Momements. There's a reason they call it the "sin bin."

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I see Dr. R on Tuesday afternoon. Look for a report sometime Tuesday evening or Wednesday morning.

Running

I'm still running. I'm back inside now on the treadmill. It's not getting light until about 6:30am now, too dark to run early in the morning when I like to. The treadmill doesn't seem to give me as much of a workout as running outside does, but I play with speeds and inclines, and that keeps thinsg interesting. But I won't stop. It's too important, not only because running helps you live longer, and it's especially good for cancer patients.

Busy weekend coming up, so I probably won't post until late Sunday, maybe Monday. I see Dr. R on Tuesday for the first time in two months. I always get a little antsy a few days before, even though I'm feeling fine, and I'm still not showing any B symptoms.

I'll give you the update after the appointment.

Not a Genius

Once again, the MacArthur Foundation Awards were announced yesterday, and once again, I was not given a Genius Grant. The MacArthur people give out 25 Genius Grants every year to people in the arts, sciences, medicine, etc. The grants are for $500,000, with no strings attached.
Most recipients announce some noble intention for the money, but they could spend it on aa half million dollars worth of Cheez Doodlez if they so chose. My kind of grant. Recipients don't apply for them; they are nominated secretly, and most have no idea that such an honor is coming.

I waited patiently by the phone all day yesterday.

Nothing.

There isn't even, like, a lymphoma researcher in the whole bunch. There is a basket weaver, though. Oh, sure, she's single-handedly preserving an ancient art, and her works are on display in major art mjuseums around the country. But still. Where's the love for Lympho Bob?

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Speaking of lymphoma research....

(If you're getting tired of research news, too bad. It's either this or I write about the dog some more.)

Some excellent news yesterday from Cell Therapeutics, Inc., makers of Zevalin, the RadioImmunotherapy drug I've written about before. To remind you: Zevalin is basically a jazzed-up Rituxin. Rituxin finds the lymphoma cells by targeting the CD-20 protein on their surface. Zevalin goes a step further by targeting the protein but then delivering a shot of radiation to the cell. Since lymphoma cells are traveling through the blood, standard radiation treatments won't work. Zevalin (and a similar drug called Bexxar) allow radiation to be used on "liquid cancers," as they are called.

Zevalin has been used as a kind of "far down the line" option, most typically after a stem cell transplant hasn't worked. Yesterday, the FDA gave approval for CTI to apply for a label extension. That means that, if approved, doctors can use Zevalin as a first-line consolidation therapy: rather than waiting to use it far down the treatment line, it can be used as a second option, after, say, Rituxin or a chemotherapy has been tried. In the clinical trial that the application was based on, 87% of the Follicular NHL patients in the study had a complete response (they went into full remission). It didn't wipe out the lymphoma permanently, but it did greatly increase the length of the response. While there are some side effects, most are reversible, and other studies indicate that, unlike some fNHL treatments, Zevalin seems to work even better if it's used a second time.

It's not earth-shattering-there-may-be-a-cure news, but it's pretty good anyway. Zevalin provides another option, which is what fNHLers like to hear.

More Great Lymphoma Research News

First off, my congratulations to the U.S. Ryder Cup team, which beat the Europeans this weekend. The match was held in beautiful Louisville, Kentucky, where we spent five wonderful years. The U.S. team was led by Paul Azinger, NHL survivor, featured in my last Nodes of Gold entry. Gotta love it when lymphomaniacs do well. And you gotta love Boo Weekley.


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There seems to be a ton of great lymphoma- and cancer-related news coming out lately, all of which is very encouraging. Two great stories from the last week.


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First, there is a report on a variation of an already-effective chemo treatment. Some background: The chemo is called CHOP, the acronym for the combination of drugs given to lymphoma patients. It's fairly aggressive, and has always been reasonably effective. A few years ago, it became known as R-CHOP. The R was for the addition of the monoclonal antibody Rituxin, the NHLer's best friend. Rituxin is sometimes used as a first line, initial treatment for Follicular NHL (my current plan is for straight Rituxin as my first treatment), but is even more effective when combined with chemotherapies. Rituxin targets lymphoma cells because they have a protein called CD-20 on their surface. Researchers aren't sure exactly why the addition of Rituxin makes the chemo work better, but it does.


This recent news has to do with another monoclonal antibody called Epratuzumab, which targets a different protein, CD-22. In this recent study, CHOP was combined with both Rituxin and Epratuzumab (the combo is called ER-CHOP). The numbers in the clinical study are pretty impressive: 56% of patients had a complete response (they went into full remission), and another 38% had a partial response (reduction in tumors). For fNHL patients, that's pretty darn good news.


There's a clinical trial underway that uses Epratuzumab and Rituxin in combination as a first line treatment; a reader of this blog, Dave, is in the trial and should get results soon. Good luck, Dave.

The best part of Epratuzumab is that it is being marketed under the name LymphoCide. That name rocks.


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The other interesting news from this week concerns Follicular NHL and treatments after relapse. Basically, fNHL has a bad habit of coming back after being treated, so patients face a series of treatments, which are usually effective is holding off the lymphoma, or beating it back for a while, until the next treatment is used. The treatments are usually progressively more aggressive; you start with Rituxin, then if/when it comes back, you use a certain chemo, then a stronger chemo, then R-CHOP -- or whatever the doctor and patient decide what the course of treatment will be. The assumption has always been that fNHL becomes more aggressive with time, and so each treatment must be more aggressive.


As it turns out, not all fNHL behaves this way. Researchers have identified 81 genes that can determine very accurately if the fNHL is going to behave more aggressively with time. Knowing that can help determine a better course of treatment, going with something more aggressive earlier on, or holding off because things will keep going slowly. Another excellent step for better treatment.


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It's nice to hear all of this great fNHL news coming about. I expect to hear about some very interesting new treatments in the next few years, partly because of the Stand Up to Cancer folks. Cancer research funding usually depends on a researcher showing how he or she is building on previous effective work, which increases the chances that the funding will result in something good happening from the research. The result is slow, incremental progress, which is great. Stand Up to Cancer is taking a different appraoch. They're funding "dream teams" of cancer researchers to take their best ideas, some of them fairly radical, and giving them a chance to show that they'll work. They might be so new and unusual that they don't have that kind of history that the slow, incremental work has to have to get funded. Could be a waste of money, but it could result in some very interesting cancer treatments.


Keep looking here for news, of course.

Stem Cell Donations

No, no, not for me -- not yet anyway.

The National Marrow Donor Program is making a push for donations. Through September 22nd, the fee for the testing kit is being paid for by an anonymous donor (it's about $50 otherwise). You can find out more here. Sorry I didn't hear about it sooner. Read on for more details about why this is important.

What used to be called "Bone Marrow Transplants" are now more commonly called "Stem Cell Transplants" or STC. They don't involve the politically-sensitive issue of embryonic stem cells. Everyone has stem cells in their body all the time, waiting to grow into specialized cells. In the blood, stem cells are immature cells that turn into red blood cells (which carry oxygen to the rest of the body) or white blood cells (which fight infection).

Stem Cell Transplants are basically a way of supporting chemotherapy. Essentially, they allow massive, aggressive chemo to be used. The chemo is so strong that it effectively kills off the patient's immune system. After the chemo does its job, killing off the cancer (as well as the immune system), the stem cells are transplanted into the patient, allowing the immune system time to redevelop. Without the transplant, the body would be defenseless for about a month -- plenty of time for dangerous infections to develop. With the transplant, the immune system is usually out of commission for only about a week -- much more manageable.

There are two types of Stem Cell Transplants: autogeneic and allogeneic. With the auto, the patient's own stem cells are collected and frozen before the chemo treatments begin, and put back into the blood after the chemo is finished. They result in little chance of the body rejecting them, of course, but there's the danger that some cancer might still be lingering in the stem cells. With an allo, the patient has to find a donor that is a genetic match. It's most often a sibling, but not always. (That's where the donor match program comes in.) Allos present a much greater chance of the body rejecting them, but they're usually more effective overall than autos.

The term "bone marrow transplant" is on the way out, becuase it represented an older process that involved major surgery for the donor, where bone marrow was extracted from the lower back. (Having had a bone marrow biopsy, I can only guess how un-fun the full donation process must be). That procedure is rarely done anymore. These days, it's called a "stem cell transplant" because the stem cells are extracted right from the donor's blood. It's like giving platelets: the blood is taken from the donor, put through a machine that removes the stem cells, and then pumped back into the donor. Not the major deal it used to be to donate.

Stem Cell Transplants are an important treatment for lymphomas and other blood cancers. In fact, for Follicular NHL, it's the treatment that most often results in a durable remission (what we would call a "cure" if we agreed that a cure existed). But STCs are also used in a number of other cancers that require aggressive chemo. (Yale Cancer Center does a local radio show every Sunday night, and they had a really informative program on STC. Here's the link for the full list of archived shows. You can listen or just read the transcripts.)

The process of becoming a donor (apart from actually doing the donating) doesn't seem too complicated. This video explains a little more. Consider it. It's a lot easier than donating an organ -- that's for sure. But it might have the same results.

From Strudel

She's been humping my leg, begging me to let her post, so here's Strudel. My apologies in advance.....

Hey, Cancer Boy! Lymphoma Awareness Day? I left something on the rug in your room to be aware of. Now go clean it up and leave me alone with my readers.

I'll keep it kurz und gut, because Cancer Boy will be dragging his anschwellen lymph nodes back down here soon.

I just wanted to remind you all that dogs are the superior breed. Und German dogs are more superior than most.

Still need the evidence? Do you read the news? Or are you too busy pretending to exercise while you play with your Wii games?

A few days ago, a man has a seizure. His German shepherd dials 911 and he is rescued. Pathetic humans. Where would you be without us?

Yes, yes, yes. Sit, down, roll over, good dog. We could speak back. But we don't. And when we do, it is purely for your amusement.

Watch the video and listen carefully. Listen very carefully. Is not so tough.

Cancer Boy watches and waits. We dogs watches and waits, too. So you better watch yourself.

Cancer Boy coming back. He mumbles -- something about more paper towels. He mumbles a lot these days. And plays that gestopfte guitar. All day with the strumming and the singing James Taylor. I liked it better when he was busy.

Guten Tag. Be nice to a dog today. Probably saved your life and you didn't know it.