Friday, November 30, 2012

No More Gilda?

A small controversy in the cancer community:

The Madison, Wisconsin branch of the national organization "Gilda's Club" is changing its name to Cancer Support Community Southwest Wisconsin.

Gilda's Club provides services to cancer patients of all ages and their families, free of charge. It is named, of course, for Gilda Radner, the very funny SNL alum who faced cancer with such humor and dignity. After she was diagnosed, she said, "Having cancer gave me membership in an elite club I’d rather not belong to." Her friends began Gilda's Club as a tribute to her memory.

The Madison branch realized that most of the people they were serving were born after Gilda had died, and had never heard of her. Since they rely on donations, and since people who need cancer support (especially young people) Google "cancer," they though they would be more easily found if they had the word "Cancer" in their name.

People are up in arms about this decision, and are flooding their Facebook page with comments. They see it as an insult to Radner.

In some ways, it isn't really a controversy. Radner herself got support from a place called The Wellness Community, and Gilda's Club merged with them a few years ago, creating a new group called Cancer Support Community. The local chapters had the option of choosing any of those three names, and some did change. So the Madison group isn't really doing anything radical -- they're just doing it a few years later than some other folks.

I can understand people being upset, though. For one thing, cancer patients like stability; we have enough change to worry about, and a change from something they see as positive is liable to upset them. For another thing: I think we all worry about being remembered, and it makes us sad to think that someone who was once so famous, and brought so much joy to so many people, is now so obscure that she's hurting the fundraising for the cause she cared about so much. That can't make any of us feel good to think about.

Her husband, lymphoma survivor and brilliant comic actor Gene Wilder, was asked what he thought about it, and he said he didn't like it, but he understood, and he offered an imaginary conversation between himself and Radner:

He said if he had to break the news to his late wife she might ask, “Do they have to throw me out?”
“I’d say, ‘It’s not throwing you out, honey, it’s getting more money.’ And she’d say, ‘OK, I guess if they have to, they have to,’” he said. “It’s too bad. I wish it weren’t so. But I understand.”
He said if he had to break the news to his late wife she might ask, "Do they have to throw me out?"
"I'd say, 'It's not throwing you out, honey, it's getting more money.' And she'd say, 'OK, I guess if they have to, they have to,'" he said. "It's too bad. I wish it weren't so. But I understand."

Read more:
He said if he had to break the news to his late wife she might ask, "Do they have to throw me out?"
"I'd say, 'It's not throwing you out, honey, it's getting more money.' And she'd say, 'OK, I guess if they have to, they have to,'" he said. "It's too bad. I wish it weren't so. But I understand."

Read more:

So I guess we should understand, too. As long as all of those pictures of Gilda stay on the walls, and maybe if the rooms named after he various characters aren't changed, her memory will stay. And maybe some of those young folks will ask "Why the heck is this called the Roseanne Roseannadanna Room, anyway?"

Gilda's Club Worldwide merged with The Wellness Community in 2009, and the joint headquarters in Washington changed its name to the Cancer Support Community. Local chapters were given the choice of keeping their names or switching to Cancer Support Community, House said.

Read more:

Gilda's Club Worldwide merged with The Wellness Community in 2009, and the joint headquarters in Washington changed its name to the Cancer Support Community. Local chapters were given the choice of keeping their names or switching to Cancer Support Community, House said.

Read more:

Wednesday, November 28, 2012

Vaccine Petition has a petition from Voices for Progress asking the FDA to consider approval of the BioVaxID vaccine for Follicular Lymphoma. I urge you to sign it.

I wrote about BioVax very recently. Initial clinical trial results looked great -- patients who took the vaccine added about 14 months to their disease-free survival. The FDA, however, rejected the request for approval because the results were somewhat old, and they wanted to see results in patients who are taking more currently popular treatments, particularly Rituxan.

The petition asks the FDA to consider the earlier results, and to keep in mind that, as a consolidation therapy (that is, a treatment that is given immediately after another treatment), BioVaxID will have fewer reported side effects than other consolidations like R maintenance or RadioImmunoTherapy.

It's all about options. That's what fNHL patients want. And need.

Lymphoma Rock Star Betsy de Parry (I'm going to suggest that she change her name legally to "Lymphoma Rock Star Betsy de Parry) wrote a nice piece for on Monday in  which she makes a case for the FDA to rant accelerated approval of BioVax. Accelerated approval gives doctors permission to use the treatment, provided the maker of the treatment agrees to conduct further trials to confirm its effectiveness. These "Phase 4" trials can then lead to full approval for the treatment, if they prove to be as effective as they seem likely to be.

As I write this, the petition still needs over 1000 signatures. Please consider adding your name.

Monday, November 26, 2012

Standards of Beauty

Yesterday, between the third and fourth quarters of the Indianapolis Colts' game, two cheerleaders had their heads shaved.

They did it in solidarity with Chuck Pagano, the Colts' coach, who was diagnosed with leukemia in September. Chemo took his hair. The community, and especially the team, rallied around Pagano, with several players shaving their heads. So Blue, the Colts' mascot, issued a challenge to the cheerleaders: would anyone be willing to have Blue shave her head, if Blue could raise $10,000 for leukemia research?

One brave cheerleader, Megan, took him up on it, and when Blue raised over $22,000, Megan kept her promise. She was joined by another cheerleader, Crystal Ann, and they held hands while Blue did his work with the razor.

Megan and Crytsal Ann are not the first people to shave their heads in solidarity with a cancer patient. All those players did it. And country singer Kellie Pickler did it, too.

To be honest, I think it's great when people do it, but I'm a whole lot more impressed when a woman does it, especially a woman like Kellie or Megan or Crystal Ann who is so visible.

Is it cliche to say that their selfless act is more about inner beauty than outer beauty? Maybe. But it certainly should get people to reconsider what beauty is all about.

Megan's page on the Colts Cheerleaders website includes some personal information, as well as her advice for kids and teens, which begins, "Be proud of who you are and embrace what makes you unique."

That's some excellent advice.

Saturday, November 24, 2012

What I'm Thankful For

Here it is, two days after Thanksgiving, and twice I have posted my "What I am Thankful for" entry for the year, and twice it has been messed up by Blogger. Very frustrating. I spent a pretty long time thinking about it and writing it up, and now I'm on no mood to rewrite it a third time. Which really stinks.

Watch this instead. It's pretty close to what I said I was thankful for.

So I'll just say, Thanks to my family, for being so supportive. I couldn't have some this far without you.

In less than two months, I will celebrate five years since my diagnosis. I'll have lots to say then. In the meantime, Thanks to all of you who read the blog. I always say that, in the end, I write the blog for myself, but I hope that some of you take some comfort, wisdom, and knowledge from it, too.

Hope your Thanksgiving was a good one.

Tuesday, November 20, 2012

ASH: Quality of Life

OK, time to get to some of the 126 abstracts from this year's ASH Conference that are related to Follicular NHL.

The first is called "Differences in Quality of Life Between Bendamustine Plus Rituximab Compared with Standard First-Line Treatments in Patients with Previously Untreated Advanced Indolent Non-Hodgkin’s Lymphoma or Mantle Cell Lymphoma."

I find it intriguing because we're getting even more research devoted to Bendamustine (Treanda); it was pretty much established as the go-to treatment for fNHL in the last year, and more research just keeps reaffirming it. 

In this study, researchers compared relapsed and refractory fNHL and MCL patients who were given either Bendamustine + Rituxan, or who were given "standard" chemotherapies of either R-CHOP or R-CVP.  But instead of measuring its effectiveness in reducing the cancer (which they may very well have also looked at), they looked at how the treatments affected quality of life -- how much the treatments affected their everyday happiness, in a sense, and their ability to function in a "normal" way.

Patients were given questionnaires about Quality of Life, asking about things like cognitive issues (which probably means "chemo brain"), emotional issues, physical issues, etc. The questionnaires were given at the beginning and the end of treatment. We know that B-R has fewer side effects than CVP or CHOP, so it's no surprise that quality of life either went up, or did not go down as quickly as it did for the "standard" chemos.  

It's a significant study, not just because it gives yet another reason to consider Bendamustine. Maybe more importantly, it reinforces the idea that Quality of Life matters when it comes time to choose treatments, especially in something like fNHL, where patients are often asymptomatic. If it's possible to maintain quality of life while providing an effective treatment that reduces cancer, it seems like a no-brainer.

And yes, there are still lots of doctors who recommend R-CHOP as a first line treatment, probably out of habit (though they certainly may have other reasons). More research like this on Quality of Life -- and more proactive patients -- might change their minds.

Sunday, November 18, 2012

Alcohol and Lymphoma

This seems relevant as we enter the holiday season, when I'll be dealing with family, friends, food, and, most importantly, the occasional alcohol.

British researchers have found that moderate drinking appears to lower the risk of some types of blood cancers, including follicular lymphoma.

Cigarette smoking does the opposite, and increases risk. I've never been a smoker, so I don't really care.

But the drinking part? Yes, that is intriguing.

The study implies that drinking alcohol might have some affect on keeping blood cancers away. It doesn't say anything about alcohol helping lymphoma once you have it. But we can make that logical leap, right? It must help, wouldn't you think? It couldn't hurt, anyway? Right?

A little wine with the turkey dinner.

A few sips of my brother's excellent pumpkin ale.

A shot of Bailey's in my hot chocolate after shoveling snow.

A dash of kahlua in my egg nog.

'Tis the season.

Friday, November 16, 2012

BioVaxID has a interesting series on the BioVaxID vaccine, the latest installment of which was published about a week ago.

I've written about BioVaxID before.  The "ID" stands of "ideotype," a kind of personalized cell. Bascially, BioVax works by taking the lymphoma cells of an individual patient, training the patient's immune system to recognize those cells and attack them, and then putting the trained stuff back into the patient to clean up. I've always found it fascinating because the lymphoma specialist I saw for a second opinion mentioned this treatment in particular, and was very excited about its possibilities.

In August, the company that makes the vaccine, BioVest, was asked by the FDA to conduct a new series of trials to test its effectiveness, even though trials had already been conducted and showed some promise.

As the interview with Dr. Eduardo Sotomayor (lead investigator in the initial BioVax trial) suggests, the FDA wants more information because the initial trial was begun in 2000, just as Rituxan was taking off. Much of the data for the trail came from patients who had not been given Rituxan, and the FDA wants to know how Rituxan (which targets the cells that the vaccine also targets) will affect the results.

Dr. Sotomayor has an answer. Read the interview to find out.

Of course, the new trial will still need to be run to confirm if he's right.

The links for the first three parts of the series are at the bottom the the interview. Definitely worth reading.

Tuesday, November 13, 2012

New Rituxan Dosing

A couple of weeks ago, ASH sent an announcement out that a new Rituxan dosing schedule had been approved by the FDA.

Patients who did not have a severe reaction during their first dose, and who do not have cardiovascular or high lymphocyte counts, may receive their second and subsequent doses in 90 minutes. The amount of Rituxan will be the same, but it will get in there a lot faster: 20% of the dose given in the firt 30 minutes, and then the rest given in 60 minutes. This change is based on a trial involving patients who took Rituxan along with CVP or CHOP.

Compare this to my own experience. My first dose of Rituxan took about 5 hours. I had to stop partway into it because I had an allergic reaction. A dose of medicine to counter that, and then a much slower drip, and I was on my way. Other doses took about 4 hours each, going fairly slowly, just in case there was an issue, though typically people only have a reaction with the first dose.

So this new protocol works things  a lot faster. If the patient sails through the first dose OK, there's really no reason to take things slower.

So who benefits by this?

Well, first, the patient. It sucks having to sit there for 4 or 5 hours. Dr. R has a nice treatment room, with comfy chairs, TV, books to read, snacks to eat. But it still sucks. Particularly for someone who is mostly asymptomatic, as I was -- someone who is living a fairly "normal" lifestyle, which is true of lots of fNHL patients. It would be nice to be able to get back to work, maybe, if that's possible.

The treatment host benefits. Open up a chair faster, if that's necessary -- get some juice into someone who needs it.

And who else benefits? Everyone. If we're trying to reduce costs for health care, which ultimately helps us all, then the faster infusions might just do that. A paper to be presented at ASH next month addresses that very issue, and concludes that reducing each Rituxan dose from 4 hours to 90 minutes saves $359. The number of doses given to a patient varies, but the paper's authors estimated that the saving would be $2,119 per course. [Thanks to Karl from Patients Against Lymphoma for pointing out that link to the support group.]

Seems small, but it adds up, given how many people get Rituxan every year. And imagine similar small savings for every cancer treatment, with no change in effectiveness. We'd really have something going there, wouldn't we?

Sunday, November 11, 2012

Bald for Bieber

I can't believe I missed this, given that I have my tentacles in both the online cancer community and the social media community, but about two weeks ago some folks announced that Justin Bieber had cancer. They photoshopped some pictures and created tweets from a fake Twitter account, and eventually people believed it enough to set up a Bald for Bieber campaign. There was a web page, a Twitter feed, a nice YouTube video with alleged pictures of fans who had shaved their heads in support of the Beebs (with the promise of a free signed copy of his latest CD for those who sent in a picture of their shaved head). Most of it has been taken down, because, of course, it was all a hoax.

Two lessons here.

First, verify. I've read around a little, and I can't find evidence of anyone who actually shaved her head in support of Bieber. Lots of reports that people did, with pictures of people with bald heads or short hair, but nothing that proves anyone actually did it for Bieber. My goodness, I hope if anyone was actually going to do something like that, they'd make it was true, first. It's great when people actually shave their heads in support of someone they know and love (like the singer Kelli Pickler did a couple of months ago). But to do it on a whim for someone you've never met? At least make sure it's true. And that "verify" lesson holds true for pretty much anything you read online about cancer -- who has it, what causes it, how to cure it. Step back and think before you believe.

Second, let it roll off your back. In the aftermath of this hoax, there are people especially upset that this used cancer as part of a prank, and thus it makes light of cancer. I think this makes light of other things -- the passion of Bieber's fans, and the gullibility of lots of internet users, for example -- but it shouldn't cause a lot of hand wringing among cancer patients. It plays on a fear, especially one that would hit Bieber's young fan base especially hard, since it's so mysterious to the young. I saw someone comment that, really, this may just bring a whole lot of awareness about cancer to young people. I'm not so sure about that, not unless they have a very enlightened and caring adult in their life who sees this as a great opportunity for a learning experience. But, at the same time, we have enough to worry about to get too upset about some internet trollers who pulled a prank.

Really, we should be worried about Bieber. He's just had a bad breakup, after all.

Thursday, November 8, 2012

ASH Conference

This year's American Society of Hematology (ASH) conference is coming up; it will take place in Atlanta, December 8-11. It's a big deal for blood cancer research. It's kind of a first step: researchers can present their early results to other hematologists, and get some excitement going. It's not usually for a while that we see final results, published in peer reviewed journals (that is, vetted and approved by other hematologists as being valid research).

In the next few weeks, we'll start to see press releases from universities and drug companies with excited descriptions of research. But it's important to remember that it's early research.

Now, I'm not immune to the excitement. Look back and you'll see me describing stuff that looks very promising. Some of that stuff has proven to be worth the excitement; some of it just kind of dies off and we never hear about it again.

That said, I will not give up on hope. I'll take the excitement any day.

According to the wonderful folks at Patients Against Lymphoma (at -- still the best site to go to if you want to start learning about lymphoma), there are 126 presentations about Follicular Lymphoma being presented at ASH this year, and PAL lists them all. I plan to look at most of them, and comment on the ones that I think seem worth getting hopeful about.

Doesn't that sound like fun? Stay tuned.....

Tuesday, November 6, 2012

Crowdsourcing a Cure

Election day.

Thank goodness.

I'm certainly not the first one to be sick of all of this. I'm ready to move on and accept whatever comes from here. What choice do I have? But this is America, and I know that in four years, there will be another chance to get what I want. Heck -- I'll get that chance in two years, when Congress is up for re-election. People tend to forget that last part.

In the meantime, I will have to accept the "wisdom of the crowd."

Speaking of "the wisdom of crowds" (a term popularized by the writer James Surowiecki, who argues thatthe collective work of many interested people is better than one person), I've been saving a nice article called "Crowdsourcing a Cure."  "Crowdsourcing" is the act of relying on multitudes to do work and help make decisions, much like what Surowiecki advocates. You know what "outsourcing" is -- sending jobs outside of a company. "Crowdsourcing" works the same way, but relies not on low-wage workers, but on volunteers -- people interested in solving whatever your problem is. It's how Wikipedia works. rather than relying on a single expert to tell you what's important, you rely on the collective wisdom of a whole bunch of people who are all seeking the truth. (At least in theory.)

The article describes a project in which researchers asked volunteers to look at tens of thousands of slides online. The slides contained pictures of breast cancer cells. If the volunteers spotted an abnormality, they flagged the slide, and researchers could then  further examine it later on. If just one person flags the slide, maybe it's not worth looking at. If dozens flag it, maybe it deserves some attention.

The "wisdom of the crowd."

And there are certainly problems with the approach. Sometimes, Wikipedia pages contain false information. And sometimes, there's probably a sicko who wants to lead breast cancer researchers down the wrong path, for whatever twisted reason. There will always be trolls.

But for the most part, crowdsourcing works. The key is work with people who are actually interested in solving the problem.

There's a pretty easy opening in that last sentence for someone who wants to be all cynical about Election Day. I choose to be hopeful.

It's the cancer patient in me.

Saturday, November 3, 2012

Sandy Setbacks

We're still seeing the devastation of Hurricane Sandy here. Hard to believe that less than 100 miles away from in NYC there is so much destruction.

What really amazes me is the easily overlooked things that you hear about -- people whose lives are disrupted because they lost electricity or water or had some other damage. Not just the way our everyday lives are interrupted by those things, but how some of the special circumstances people live with have been made that much more difficult. A friend who is caring for her elderly father lost power, and had wisely prepared in advance a way to make sure his medications stayed cold. Then she had to take a day off of work because the building manager had to come to the apartment to check on any damage, and her father would just flip if a stranger was there without her.

It's no picnic for cancer patients, of course. In her excellent column for the New York Times, "Life Interrupted," Suleika Jaouad talks about the extra challenges from Sandy that she faced as a cancer patient -- things most of us wouldn't think of. A monthly chemotherapy appointment that had to be cancelled. The struggle to get in touch with a doctor to figure out how to deal with that. A mandatory evacuation into streets filled with sea water and raw sewage, and worries about infection that might come from that.

It's enough to make a cancer patient (like me) feel pretty damn lucky.

And then there's the sad set back to medical research. Thousands of lab mice were drowned when water flooded the basement of a New York University research center. I'm not sure what kind of research the mice were involved in, but apparently it will take years to get back to the point in the research where things stopped. Worse, it has happened at other research centers in the past, and it was preventable. We could debate the merits of using animals for research (I'm sure my son will debate it with me), but whatever your feelings about mice, it's sad to think that potential cures for diseases have been knocked back.

Hurricane Sandy hit a lot of people very hard. Think about donating to relief efforts if you can. If you're not sure where to start, the Red Cross is a good place to begin.