Pan Mass Challenge Follow-Up

I wrote a couple of weeks ago about my brother Mike completing another Pan Mass Challenge, a two-day bike ride that raises money for cancer research. A few days ago, he sent out his annual thank you letter to those who supported him, and I thought I'd give some brief commentary.

Mike writes:

Another successful Pan Mass Challenge has finished.  So far, my total donations exceed $7,500 which is far ahead of my $5,000 goal thanks to your generosity and support.  Initial indications point toward another successful year for the organization, and over $30 million in research funding is projected to be raised in the final tally.

This is very awesome. When I wrote about this a couple of days after he was finished, he was closer to $6000. Nice of some folks to keep coming through with donations. (Though I can't blame them for wanting to wait until he actually finished to commit the cash.)

Mike goes on to describe the race, including one of the stops:

The Lakeville stop is where riders can meet their pedal partners, young cancer patients that they partner up with. When you come into Lakeville, you climb a small hill, and off to the side there are posters of some of the pedal partners thanking the riders. After four years of doing his ride, I still have a hard time looking at those posters, imagining what those kids have to deal with at such a young age. This year, my brother, a cancer survivor met me there with his wife and kids along with my Dad. As glad as I was to see my brother there, he was wearing his ever present Red Sox shirt again this year. Hello Bob – the Bruins (my favorite team on the planet) won the Stanley Cup this year! I wasn’t feeling the love. Let’s move on from the last decade please.

He included a photo of us, with me in my Red Sox shirt.


You know, the one with Jon Lester's name and number.


You remember Jon Lester, right? The NHL survivor?


Pardon my symbolism.


May no Bruins player ever get cancer, but if any of them do, I'll wear his shirt next year. Promise.


(And even if he stays healthy -- and I sure hope he does -- I may wear Brad Marchand's shirt anyway, given what he did with the Stanley Cup.)

Thank you all until next year.

Mike

Thanks to you, Mike. Keep pedaling.

Scan Results

Amazingly, I have my scan results already, and they're great.

Dr. R left a message yesterday in the late afternoon, while we were out. He said the scan was very good, and that I should keep doing whatever I'm doing (which is a dangerous thing to say to someone with my bad habits).

In fact, he said some nodes that had been active (I've had a little activity in about 6 node clusters since the start of all this) didn't have any activity at all now.

So the Rituxan seems to have done a great job, even 18 months out.

This is certainly excellent news, and it takes some emotional pressure off of us.

But -- to be realistic -- odds are very good that the Rutuxan is not a permanent solution, and we'll need to continue to keep an eye on things. This kind of waxing-and-waning, getting a little better/getting a little worse again, is all typical for follicular NHL.

But for now, we're giving a little cheer.

And a big shout-out to Dr. R and the folks at St. Raphael's imaging department for getting the results to me so quickly.  I'm going to have some very jealous support group buddies, some of whom have to wait a week or more for results.

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A quick running update, too, which is related to the scan results, sort of.

I've been running on the treadmill almost exculsively for the last couple of years. But for about 6 weeks, I've been trying to run outside on Saturdays, my old 3 mile routes through the neighborhood. One route in particular was always my favorite -- it has a huge hill in the middle. I've been running that route the last few Saturdays, and doing it disappointingly, taking about 5 minutes more than I used to do it a couple of years ago.

The problem has been that I was diagnosed with asthma in the spring. When I've been running this hill route, I've been doing great until the top of the big hill, and then I've collapsed when my lungs have rebelled.

But last weekend, I think I solved my asthma problem. The soilution? I turned down the A/C in our room at night. All that cold air in my lungs had apparantly been doing a number on them. Lower A/C = happier lungs when I get up. So getting the good scan results was doubly good, because it got rid of any questions I had about whether my lung problems were really swollen nodes in my chest.

So today, when I ran my hilly route, I felt great. I hit the big hill with a good steady pace. At the top, I didn't feel the need to collapse. I kept my steady pace going all the way home. And when I got there, I saw that I had taken 3 minutes off my time from last week. Woo hoo!

I'll attribute 30 seconds to new running shoes, 30 seconds to the lightness that comes from a clean scan, but that's still two minutes that I can credit to happier lungs. It felt awesome.

I haven't raced in just over a year, but now I'm inspired to look for a good fall 5k. I'll keep you posted.

CT Scan This Morning

No results yet -- just the scan itself.

This was my first scan in 18 months. The last one was my post-Rituxan scan. Dr. R hadn't thought it was necessary for another one up to this point, but he figured 18 months was probably a good time to check in and see what's going on with the ol' nodes.

It all went very smoothly. I arrived about 10 minutes early, and they took me in right away. I drank my usual barium milkshake, and even that seemed to go down easier than usual. Had the whole quart finished in about 10 minutes. Lympho Bob don't mess around....

After an hour's wait (watching George Stephanoplous on Goof Morning America, fretting about the hurricane), they took me in for the scan. I was even lucky enough to get the British Guy CT Scan machine. It's the one with the voice of a man with a gentle British accent, who instructs me to "Take a deep breath and hold it there...Carry on breathing."  My kids crack up when I tell them about that, every time.

 (I don't always get the British Guy, so I guess different CT machines have different voices, maybe because they're manufactured by different companies? I'd like to think the technicians have a choice of voices, kind of like Tom Tom GPS systems, where you can download celebrity voices, like that of Snoop Dogg, Official Rapper of Lympho Bob. How much nicer would a scan be if you had Snoop saying, "Breath in deep, Jack," and then making some kind of medical marijuana-related joke? Awesome. I may have to contact Tom Tom about making some kind of deal with the scan people....)

Even the ride home was easy -- I usuallly get stuck at every light, but this morning, the timing was great.

I should get results early next week. I'll be sure to pass them along.

Words to Ban

Someone in the support group posted a link to this article, which is over a year old, but which provoked some interesting conversation nonetheless. It's from Oncology Times, and is written by Dr. Robert Miller. The name of the piece is "Speak Up: 8 Words and Phrases to Ban in Oncology."

Dr. Miller describes reading something that invited people to write about what they thought the world could do without -- a kind of massive spring cleaning project. So he offers some words and phrases that he thinks the field of oncology could do without. Mostly, they have to do with the ways doctors and patients interact. An example:

* “OK?” I call this the Great Word of Medical Coercion, most often heard being used by housestaff or fellows on rounds and spoken in pseudo-interrogatory form (usually at the end of a sentence) when trying to convince a reluctant patient to undergo a particularly unpleasant test or treatment. Regrettably, this dialogue sometimes passes as informed consent. Have you ever heard this (one-way) conversation: “Next we are going to do a bone marrow biopsy and aspirate to see if your lymphoma has spread there, ok? Then we will send you to Radiology where they will draw out some spinal fluid to see if there are any lymphoma cells, ok? Then we will have another radiologist put a device in your chest to draw blood and give you the chemo, ok? Then we will start you on Hyper-CVAD chemo, ok?” Usually not ok.

It's a thought-provoking piece, one that calls out oncologists in some ways. One of his suggestions was the phrase "well-tolerated," as in a report on a treatment or trial saying "The treatment was well-tolerated, except for certain toxicities." Someone in the support group pointed out that "well-tolerated" doesn't mean "enjoyable." Personally, I tolerated Rituxan very well, at least in medical terms -- a drop in white blood cell counts, but few other long-term or severe short-term side-effects. But the sharp stomach pains, the chills, and the overall anxiety? I suppose I tolerated them, but did I have a choice? You could even say I tolerated them "well," if that means I didn't try to strangle anyone with my IV line. "Tolerated" is a funny word, implying that I made an active decision to put up with my situation. That's different from making the best of it.

The point is, sometimes we need to re-evaluate the words that we use, based on the situation they are used in, and the people they effect. I can certainly appreciate this, given that my job is to study the way language is used.

The article first appeared in print, so there's no Comments section the way there would be for, say, a blog entry. But it would fascinating to know how oncologists reacted to the piece.

Dr. R Visit

I saw Dr. R this morning. Nothing really new to report (which is, of course, good news).
As always, the visit consisted of blood work, a physical exam, and conversation about any symptoms I've noticed. No nodes popping up anywhere, and I feel OK (except for the occasional asthma flare-ups, which have affected my running), so things are good there.

As for the third leg of this diagnostic stool, unfortunately, their blood analysis machine wasn't working (the technician called when I was getting my blood drawn), so I don't have numbers for my blood work. I have no reason to believe there's a problem there, so I don't expect a call from Dr. R (who said he'd call if there was a problem, once the machine got fixed).

We're working now on scheduling a CT scan, hopefully for the end of the week. It's been 18 months since my last scan (which I got just after my last round of Rituxan), so Dr. R and I agree that it would be good to see what's going on inside. Again, I don't have any reason to believe there's much going on, but I'd rather have a more objective measurement than my own generally positive opinion.

So we'll keep doing the James Brown thing and say that I feel good. If I hear any news about blood work, I'll let everyone know. I'll also post results of the scan, once it's done and analyzed.

The Cancer Song

The country singer Martina McBride has a new cancer-themed song called "I'm Gonna Love You Through It," which is very nice. I'm not a huge fan of country music, but I can certainly get behind the sentiment. Here's the video:

I've seen a few stories commenting on this song/video, including one that had a link to a list of cancer-related songs, and then comments from readers offering their own song suggestions for inspirational songs that have helped them through treatments, through tough days, etc.

On that list, I found this video for "The Cancer Song (Cancer Sucks)," by Larry Brewer, who was lead singer for a band called The Windows. The song was inspired by a friend of his. He calls it "a humorous song about a serious disease." Here's the video, with lyrics:

Just in case you have trouble with the video, I'll include the lyrics here:

Well I'm tired of putting on this wig
And taking all these pills
Tired of my friends telling me
Sorry that you're ill

Cancer sucks

Well it takes a lot to get up each day
And put put on my brave face
That's the cards that I've been dealt
This is what I say:

Cancer sucks
Cancer sucks

I'm tired of people looking at me
Misty-eyed and sad
It's a damn good thing that I'm not really
Feeling all that bad

I only had a little chance
Of losing all my hair
But it happened to me anyway
Which really isn't fair

Cancer sucks

I'm sick with all these doctors
And their Mercedes Benz
Like they're doing me a favor
When they're taking my last cent

The one thing I had hoped for
Was to get a little thin
But to my big disappointment
It's just not happening

Cancer sucks
Cancer sucks

Just remember cancer's what I have
But it's not who I am

An expression of universal feelings -- like all good music. Lets you know you're not the only one feeling the way you might be feeling..

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I see Dr. R tomorrow. I'll post an update late torrow or early Tuesday.

What I Learned

Been away for a few days, so I'm behind on posting.

I'll write more soon, but I'll offer this bit of wisdom, something I learned over the last few days.

It is this:

If you tell an ice cream vendor that you have cancer, he's probably not going to give you any free ice cream.

Or sprinkles.

Tough lesson to learn.

Cancer Comic

A follow-up to the Big Cancer News from last week, a comic strip from the very excellent site XKCD:

(Click on the comic if it's too big to fit on your screen and you can't see it all.)

Peter was in the Neighborhood Music School Jazz Program all last week. He had a great week, learned a lot, and sounded fantastic. I've been trying to load a video all weekend, but Blogger won't let me. I'll keep playing around with it and see if I can get something posted.....

Very Big Cancer News

Very big cancer news a few days ago, covered by everyone from  the New York Times to Yahoo! News: Researchers have possibly found a way to make the body's own immune system turn on and destroy cancer cells. This could be a huge breakthrough in cancer treatment. (Please note the "could be," as I will explain below.)

The article that's causing all of the excitement appeared in The New England Journal of Medicine, and is called "Redirecting T Cells."

The story in Yahoo! News sums it up pretty decently. The study involved three patients (only three -- a very small sample) with chronic lymphocytic leukemia, a slower-growing type of leukemia. The three had T cells removed from their blood. (T cells are a type of white blood cell that destroys foreign bodies, like viruses, in the bloodstream.) The T cells were altered in the laboratory -- reprogrammed to find and destroy B cells (another type of white blood cell) that have the protein CD19 on them. These B cells include both leukemia cells and normal cells. The T cells were then reinjected back into their blood, where they did their thing, finding and destroying the cancer cells (as well as the normal cells). So far, so good: two of the three patients have been cancer-free for a year, and the third has had a partial response.

Researchers are hoping to eventually use this technique on other cancers as well, reprogramming the patient's immune system to destroy their tumors.

The response has been downright giddy, something that we rarely see from cancer specialists. And it does seem to be worth the excitement: up until now, no one has figured out how to get the body to recognize its own cells (cancer cells) as being invaders that need to be wiped out.

But here's the cold water:

First, it's an extremely small study. Three people is tiny. Larger studies are going to be needed to see just how effective this is for a wider population. That's going to take time, money, and volunteers.

Second, it's still very early. Cancer resarch is littered with treatments that were wildly successful for a short time, but then subverted by the cancer, which found a way around the treatment. A year is great, but we still need to see how it works over a longer time.

Third -- from what I've been reading, there's some concern about the T cells themselves, and the way they work. The T cells kill off normal cells as well as cancer cells, which is a problem becuase the cells being killed off are also part of the immune system, leaving some patients vulnerable to infection or other illness. Also, this type of T cell (the body has several) doesn't know how to turn off -- they keep multiplying, potentially killing off immune system cells forever, because they only look for CD19, whether it's on a normal or abnormal cell.

The reserachers acknowledge these problems, and seem realistic that this is only a first stage in this type of treatment. (As with any news about cancer treatment, you have to read carefully and make sure the news outlet doing the reporting isn't over-accentuating the positive.)

Still, I'm going to give this a cautious four golden nodes out of five, based on its potential. Because if it does get refined, and it is shown to work on a large population over time, it's going to be a very big deal.

Velcade, Again

A few weeks ago, I wrote about the disappointing results of a trial comparing Velcade with straight Rituxan. The study showed a marginal increase in progression-free survival with the use of Velcade. We had all hoped for something more, and the talk was that Velcade might merely provide one more option, but not THE option for Follicular NHL patients.

But wait -- maybe Velcade will work better in combination with something else? That happens with some treatments. Rituxan itself is much more effective when combined with traditional chemo, after all.

An article in the Journal of Clinical Oncology this months says that this might indeed be the case: while straight Velcade might not be a great improvement, it does work decently in combinations.

The article, summarized on the site DoctorsLounge, discusses two studies of Velcade (also known as Bortezomib). The first looked at Velcade added to a traditional chemo combo, CVP-R. In a small study, 83% of patients showed either a complete or partial response.

In another study, Velcade was added to Bendamustine/Treanda and Rituxan. 88% of patients in this study had either a complete or partial response to this combination.

That's all excellent news. And more evidence, at least at this point, that some combination of treatments, rather than one super treatment, will end up giving us the most success.

Save RIT

I'm going to do a little advocacy now.

There's a petition online asking people to help save RadioImmunoTherapy -- the super-charged, radioactive version of Rituxan (to put it simply) that has been shown to be incredibly effective in combating NHL. I've written about it here many times.

I've also written about the problems that come when patients try to push their doctors for this treatment. It's very under-used, for a lot of reasons, including the fact that it is not fully reimbursed by Medicare. This is a triple whammy: Medicare patients who could benefit from it cannot afford it; other insurers follow the Medicare practice and also do not fully reimburse for it; and doctors are thus reluctant to use it.

The petition asks for Medicare to fully fund RIT.

It's a tragedy, really. It's effective, safe, and cheaper than most chemotherapies (which require multiple rounds, unlike RIT, which requires just one).

For more information, read this excellent article by NHL Rock Star Betsy deParry:
http://www.annarbor.com/health/how-washington-is-denying-access-to-a-life-saving-cancer-treatment/

You can read more about the petition, here, and sign by clicking on the "Petition" tab:
http://www.thepetitionsite.com/1/urge-medicare-to-fully-reimburse-for-life-saving-cancer-treatment/

You don't need to be a cancer patient to sign -- you just need to support the idea that more options should stay available to help cancer patients.

Thanks for your help with this.

Mike's Ride

Well, my brother completed another Pan-Mass Challenge, raising over $6700 toward cancer research by peddling his butt halfway across the state. All of the money goes to the Dana Farber Cancer Institute.

You can read about him in his local newspaper.

We met him Saturday at the Lakeville water stop to cheer him on. A few pictures:

The kids lined up along the road to high five the riders as they came in.

Mike gave me a nice sweaty hug before he took off again.

We got a family picture with Wally the Green Monster, the official Red Sox mascot. I'd consider it for a Christmas card if Peter looked a little less uncomfortable about the whole thing.

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Over four years, Mike has raised almost $24,000. Very impressive. We're proud of him.

Pee Wee

One of my all-time heroes, Pee Wee Herman, visited the Dallas Cowboys training camp yesterday. That's him with quarterback Tony Romo:

Sadly, as this article makes clear, most of the Cowboys players had no idea who is was.

I am proud to say, though, that my kids just re-watched Pee Wee's Big Adventure, and have been quoting it since then.

These things are important.

Emperor Video

I've mentioned several times the excellent book The Emperor of All Maladies: A Biography of Cancer by Dr. Siddartha Mukherjee, which won this year's Pulitzere Prize for nonfiction. It's a fascinating book, and I'm about three-quarters of the way through it. (Isabel was kind enough to give it to me for Father's Day, though she still thinks it's a little sick that I want to read about it so much.) I'll give my full review when I'm finished reading.

For now, Dr. Mukharjee is featured in this video, discussing the history of cancer during a lecture at the National Cancer Institute in June. It's over an hour, but fascinating, if you like reading and listening to people discuss cancer.

(And since you're reading this, you probably do like that sort of thing).

Enjoy:
http://videocast.nih.gov/summary.asp?Live=10310

9/11 Cancer Coverage

I'm back from a week in Myrtle Beach -- plus 2 days on either end of driving to and fro -- and I'm very tired. I managed to write a few entries before I left and schedule them for while I was away, so you didn't miss much Lympho Bob, but then I ran out of energy and couldn't get any more done. So here we are.

Just a quickie for you: a 3 minute video of Jon Stewart on The Daily Show last week, wondering why the Health Care Bill that covers first responders for the 9/11tragedy does not include coverage for cancer. He's funny when he's outraged.

http://www.thedailyshow.com/watch/thu-july-28-2011/i-thought-we-already-took-care-of-this-s--t

More in a day or two when I'm recovered from that horrible Northern Virginia traffic....