Tuesday, July 31, 2007

The celebrity "solution"

Talk show host Tom Snyder has died of “CLL complications” and coach Bill Walsh may have done the same (some news reports saying he had CLL, others just "leukemia.") Not long ago the passing of journalist Ed Bradley brought the “good cancer” into the public eye, however briefly.

Whenever a celebrity of sorts comes down with chronic lymphocytic leukemia there are patients who get a little excited, hoping that we have at long last found the poster boy for our cancer (I say “boy” since most of the celebs with CLL seems to be men, at least that we know of.) Michael J. Fox has become associated with Parkinson’s Disease, Lance Armstrong with testicular cancer, and so on. There is a perception among some patients that having a "name" will gain our Rodney Dangerfield leukemia the respect it so richly deserves, after which bucketfulls of money will rain down from the sky, magically translating almost overnight into a cure.

Now, if Oprah or Bill Gates or Bono or Bill Clinton were to come down with CLL, we might actually see something like that, or at least the money part. But pending such an A-list victim, I think we have to be a little more realistic here. Having a celebrity speak for us could backfire, especially if the celebrity is old and male, which just confirms the perception that CLL is an old man’s disease that people die with and not because of.

Tom Snyder shunned the role of CLL spokesman. I remember when he announced two years ago on his website, Colortini, that he had CLL (see excerpt at end of this post). There was much excitement on the ACOR CLL list and he was bombarded with helpful tips, suggestions, and not-so-subtle proddings that he could do us all a lot of good if he decided to actively speak about his disease. Snyder said very little as time went on, other than to announce on his website before shutting it down that he had decided to “follow the protocols of Dr. Michael Keating” to treat his CLL. So I presume that he had RFC or the like.

That he managed to die of CLL complications within two years of diagnosis and treatment is unusual, and we should not jump to conclusions about his treatment choice or approach to the disease. But the fact is that a celebrity is no more capable of making the right choices about CLL than you or me; if anything, used to getting “the best” and feeling public pressure to do what is “expected,” they may not be quite as capable of thinking outside the box. (Add to this the fact that many celebrities are not too bright, and many really are as shallow as they appear. I have this on good authority from Marilyn, whose father is a retired Hollywood publicist.)

I believe it is thoughtfulness -- and thinking outside the box -- that we need if we are to get closer to a control and cure. Sure, it would be nice to have more money -- especially money that did not come with strings attached from drug companies -- but another area that needs attention is the culture of research. This is true of the cancer community in general.

Here is where I urge you to read Why We’re Losing the War on Cancer by Clifton Leaf, an article that appeared in Fortune a few years ago. (PDF here, if you prefer that to html.)

On the plus side, it is good to hear Leaf say, “The few dramatic increases in cure rates and patient longevity have come in a handful of less common malignancies -- including Hodgkin's, some leukemias . . ."

That's as far as he goes with anything that might be CLL-specific, but the way research is conducted affects us as well as everyone else, and that’s where, Leaf argues, some changes in the “cancer culture” may pay off.

Here's a taste of the article:

“So why aren't we winning this decades-old war on terror -- and what can we do now to turn it around?

“That was the question I asked dozens of researchers, physicians, and epidemiologists at leading cancer hospitals around the country; pharmacologists, biologists, and geneticists at drug companies and research centers; officials at the FDA, NCI, and NIH; fundraisers, activists, and patients. During three months of interviews in Houston, Boston, New York, San Francisco, Washington, D.C., and other cancer hubs, I met many of the smartest and most deeply committed people I've ever known. The great majority, it should be said, were optimistic about the progress we're making, believing that the grim statistics belie the wealth of knowledge we've gained -- knowledge, they say, that will someday lead to viable treatments for the 100-plus diseases we group as cancer. Most felt, despite their often profound misgivings about the way research is done, that we're on the right path.

“Yet virtually all these experts offered testimony that, when taken together, describes a dysfunctional "cancer culture" -- a groupthink that pushes tens of thousands of physicians and scientists toward the goal of finding the tiniest improvements in treatment rather than genuine breakthroughs; that fosters isolated (and redundant) problem solving instead of cooperation; and rewards academic achievement and publication over all else.

“At each step along the way from basic science to patient bedside, investigators rely on models that are consistently lousy at predicting success -- to the point where hundreds of cancer drugs are thrust into the pipeline, and many are approved by the FDA, even though their proven "activity" has little to do with curing cancer."

In other words, we need to be thinking outside the box, making jumps and connections that might achieve genuine breakthroughs. Wars are won not only by slow and incremental attack; sometimes fortune favors the bold.

I wish we could send Dr. Keating and the other top dozen CLL experts in the world on a retreat and tell them, “Take your time, Money is no object. Forget your egos. Talk about the offbeat ideas you have been husbanding in the back of your mind, share your wish lists, sit around and drink too much Scotch and shoot the bull.”

And I would stick some creative thinkers from other disciplines in the room with them -- Steve Jobs-types, and our own Chaya Venkat -- to challenge their notions and light fires in their imaginations.

And then let’s set up a little private research center where the experts and the thinkers can come and work anonymously, creatively, crazily.

Would something come of it? We’ll never know until I win Powerball or Oprah starts noticing lumps in her neck.


Below is an excerpt from Tom Snyder's blog discussing the discovery of his leukemia. I always liked Tom; he was pixilated, which the dictionary defines as
"behaving as if mentally unbalanced; very eccentric. Whimsical; prankish. Slang Intoxicated; drunk." Here's to you, Tom; I hope they serve good martinis up there, and don't talk the Big Guy's ear off.
A cat scan turned up some interesting stuff. My spleen is enlarged, which the doctors say might be crowding my stomach in my abdomen, thereby causing some of the bloating I am experiencing. And judging by my white cell count and a variety of other factors including what was shown on the cat scan, I have been diagnosed with something called chronic lymphocytic leukemia. Jesus H. Christ! When I was a kid leukemia was a death sentence. Now, my doctors say its treatable! With pills or chemotherapy or a combination of both. Lemme pause here on this word treatable.
Four years ago they stuck a defibrillator/pacemaker in my chest because my heart disease was treatable! A year and a half ago a nearly torn tendon in my left leg was diagnosed as treatable. Then I came down with atrial fibrillation, but was told not to worry about that because it is treatable! I don't know how much more room I have in my aging carcass for this treatable shit! Anyway, my doctors assure me this is nothing to worry about, and I have to accept that, I guess. They say this kind of leukemia is not fatal, that people can live with it for thirty years. Notice, they don't say people will live thirty years. But they "can" live up to thirty years. Considering I will be sixty nine years old next month I ain't looking for thirty years, but fifteen more would be nice! I looked up chronic lymphocytic leukemia on the Internet and found a source that predicted people who are diagnosed early can live up to twelve years. Those who are not diagnosed early--and the website does not define "early"-- have a survival rate of about two years. I don't know if my diagnosis was early or late.

My doctors say this disease (which I'll refer to as CLL from now on) has a very slow rate of progression. I had more blood work done today to make certain this diagnosis is correct. The doctors will have the results of this in a week or so and then we will see what treatment they recommend. I am going to Northern California for about two weeks and I am not taking my leukemia with me. The doctors say that's okay with them.


Anonymous said...

I find it peculiar and morbid and bizarre that some people are just atwitter with the possibility that some celebrity has CLL. What difference does it make, really? Our non-spokesman Tom Snyder has passed away. Our non-spokesman Ed Bradley has passed away. Our non-CLL patient non-spokesman Bill Walsh has passed away.

Maybe in our excitement and longing, we can pull out our CLL cells and inject them into some famous person in hopes they can be our spokesman!!!

For every Michael J. Fox, there are many people with lung cancer, colon cancer, melanoma and other cancers that don't do anything profound with their disease. And even if they do, do they make a difference.

Remember Christopher Reeve jogging after his paralyzing injuries and astounding everyone? No?

The cure for CLL will come when it will come. Go ahead, plow your E-bay millions into CLL research!

The old adage, 'make everyday count' applies if you live one more day or 10,000 more days. Give back. Get your affairs in order so you don't have to worry about it. Get your healthy spouse to do the same. Show me the guarantee that the CLL patient will die before the 'healthy' spouse.

We are all going to die of something, and sooner than we'd like. So?

Make every day count.

Grateful said...

David - Thanks for the research and straight talk. With AIDS, it was celebrities being diagnosed with the disease who brought attention and priority to AIDS research and treatment, so there is recent historical precedent for your celebrity discussion.

Anonymous said...

This Blog struck a cord with me so I would advise anyone reading this "go to the bottom" and read the book "Up a Creek with a Paddle" The author tried to contact Michael J Fox, Oprah, etc... very good read for anyone with cancer. It has saved my life.

I have stage 4B ( metastases lung) and in the same situation as Jo was... Oncologist said nothing further could be done only palliative chemotherapy. My blog with link, my scans, charts, story, etc. www.ldn4cancer.com/

I was told of my terminal metastases in February 2007 with no chance to survive as no treatment would benefit. My good friend told me about Low dose Naltrexone and have been on it since. It is inexpensive only about US$38/per month and non toxic, no side effects.

I am doing great and feel fine and shouldn't be typing this to you now as I had only 4- 9 months. Your oncologist/doctor won't know about it. Mine didn't and dropped me as a patient. I contacted a local GP who didn't know about LDN but was interested and did his research and now he is prescribing it for many of his patients for various ailments.

LDN can stop /or regress cancer but not a cure for metastatic cancer. But stops it right where it is without any further progression.. I take it for cervical cancer now metastatic to my lungs and have slowed and stopped progression.
The websites below explains what it is and what it does...





There are at least two doctors who prescribe LDN in UK. Dr. Patrick Crowley
Dr. Pat Crowley is currently working in County Kilkenny, Ireland in a two-man family practice. He participated in making a half-hour documentary film about LDN that features an extensive interview with Dr. Bernard Bihari and comments from two of Dr. Crowley's patients with MS.


and Dr. Bob Lawrence who takes LDN himself for MS.


If any of you do nothing else..... I recommend reading this book-

Be well,


Anonymous said...

I want to comment on your claim that researchers don't 'think outside of the box'. What a claim!

Let's review some past and current cancer treatments. Radiation. Chemotherapy based on the finding that poison gas from World War I lowered white counts. Small electrical currents may curb cancer growth. Oncolytic viruses that infect and kill cancer cells. Gene therapy. Marine animals as source of cancer drugs. Screening literally millions of plant and fungus for anti-cancer effects. Evaluating folk medicine for cancer treatments. Using yew trees to fight breast cancer. A diuretic is currently in trials at UCSD for CLL. COX-2 inhibitors found to lower colorectal cancer risk. Green tea for CLL. Magnolia extract tested against CLL (honokiol). Feverfew herb shows activity in CLL. Chinese herbal medicine produces apparent cure in CLL. Even your current favorite low-dose rituximab to avoid 'shaving reaction'. An old insomnia drug with horrific side effects in pregnant women (thalidomide) being used in cancer. Anti-angiogenic drugs developed after a theory of Judah Folkman that tumors need a blood supply. Anti-folate drugs as cancer cells need lots of folic acid. Nurse-like cells. Heavy water studies show that CLL is a proliferating disease rather than a disease of defective apoptosis (was this an obvious 'in-the-box' idea?)

Yah, I guess you're right. Just the standard fare. No 'out-of-the-box' thinking anywhere in cancer research.

Get my drift???

There is more of a lack of MONEY than a lack of IDEAS.

Anonymous said...

Your photo of Ms. Winfrey is truly frightening! Was that you intent?

David Arenson said...

I'll take the last comment first: The Oprah picture was meant to go with the line about "disovering lumps in her neck." It shows her neck looking rather lumpy and her expression being one of surprise, as it might be if she were told "you have CLL."

The previous commenter has some good points; researchers do look far and wide, and there have been discoveries made down unusual avenues. But I am also aware in my conversations with those who are more in touch with the center of CLL research that there is sometimes a certain insularity to thinking, that often researchers get focused on their single, narrow idea and fail to see how it might, in combination with something being considered elsewhere, have synergyistic potential. Thus the reason for my imaginary retreat where researchers could let their hair down, loosen up, and think creatively or holistically. BTW, it is also important to read the Losing the War on Cancer article here, as Leaf makes points that address this issue in greater detail than I.

Low-dose Rituxan was mentioned. Do you know how many years it took for LDR to begin to get anywhere, basically thanks to one man and his dogged interest in complement depletion? Other than crazy lab rats like me, no one is yet trying it in combination therapy for CLL or AIHA or much of anything else. Instead, for years, the 375mg/m2 has been used reflexively in CLL, thanks to an old NHL study. Optimal dosage for CLL? Not a lot of effort was put into figuring that out. Let's look at fludarabine. Would lower doses work effectively and put off the day when disease resistance might develop? Is there potential in LDR+LDF? Who's trying to find out? Nobody.

Grateful mentioned AIDS -- as I recall, a lot of the attention that AIDS got was due to AIDS activists like Randy Shilts ("And the Band Played On") and others, mostly in the gay community. Celebrities supported their work but there were no big celebs out there saying "I have AIDS". Rock Hudson died of AIDS, but it was an Ed Bradley type thing, hidden until after the fact.

Dee mentions low-dose naltrexone. This is one of the first things I ran across when researching CLL treatments after I was diagnosed in 2003. There was one doctor in NYC doing it at the time and there were a couple of patient accounts that seemed to indicate that it was controlling their CLL. I didn't pursue it further because there was no data on LDN and CLL and Rituxan was proven and reasonably harmless.

I do think Dee's approach reminds us that we patients need to think outside the box also. One never knows what relatively obscure thing might work wonders in an individual case. The lesson of CLL for me is that one must look outside the confines of the expected; the answer may not lay there (or it might) but it is essential for getting a perspective on the totality of the situation.

This is especially interesting when one considers what might be called "chemo think," the idea of the inevitability of a certain course of action, usually a certain chemo protocol. But I have seen patients disregard this, at least for a long time, pursue other strategies that seem to work for them. I am not going to debate the merits of the Gerson Diet or Traditional Chinese Medicine, but I know of cases where people have done both and where, according to their anecdotal accounts, the disease regressed. In one case I have seen before and after photos of lymph node reduction around the neck and there is definitely a difference.

Others, of course, have not had such success. Is it worth your time and money to try it? Your call. But I think we are better off leaving no stone unturned, with one caveat: Our CLL must be cooperative enough to allow us the time to pursue these things. There is a danger in dithering with aggressive CLL.

Anonymous said...

You make the point that it took years to get to the use of low-dose rituximab. Let's think...when was rituximab even approved for human use? 1997? Ten years? Is that all?

So it took TEN YEARS for a drug to be approved, and you are complaining that the fine-tuning of the drug wasn't accomplished faster? My, my...you are impatient! (I do understand why, but you must be realistic).

In that 10 years, the 'gold standard' has gone from chlorambucil to fludarabine to fludarabine and cyclophosphamide, or some would argue, FCR.

Insular thinking. Is that particular to cancer research or is it in fact found in every human endeavor?

Let's take a prime example of out-of-the-box thinking (perhaps THE example), Albert Einstein. Before Professor Einstein, virtually everyone was fixated on Newton. And Newton is absolutely correct, when motion is not considered.

Einstein asserted that everything must be 'relative'. An object in motion perceives time as space differently than one at rest.

But did he work in a vacuum? NO! He built upon theories promulgated by other geniuses such as Maxwell and Faraday. He also jumped to conclusions that others were working toward, and would have reached independently, given time.

So, are physicists the only scientists who think outside the box? Did Jenner have a bright idea? Did Pasteur? Did Salk? Did Folkman?

I'll go farther and tell you that I can't think of much that HASN'T been tried in cancer and/or medicine.

Exactly what area of research has been MORE out-of-the-box than cancer research? People faced with death will do almost anything to postpone that day.

That includes mistletoe injections, Mexican clinics, having all of your teeth pulled, psychic surgery, aura reading, colonic purges, coffee enemas, prayer, meditation, exercise, macrobiotic diets, hyperbaric enclosures, anti-neoplasm therapy, parasite injections, pilgrimages to Lourdes, fasting, engorging, and many others.

The actress Jill Ireland had breast cancer. Scientists knew that heat would preferentially kill cancer cells more than normal tissue, so they stuck hot skewers into her breasts to attempt to kill cancer cells.

That out of the box enough?

CLL is a rare disease. It is not AIDS, heart disease, or even kidney cancer. Every researcher will tell you that, after years of anergy, CLL research is heating up tremendously. And that's due in large part to Dr. Tom Kipps, who pushed the creation of the CLL Research Consortium.

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