BIDMC's Dr. David McDermott on medical options for kidney cancer patients

In May I posted an interview with Dr. Andrew Wagner, the surgeon at Boston's Beth Israel Deaconess Medical Center who removed my cancerous kidney (and adrenal gland) in March 2007. In that interview we discussed the surgical options available to kidney cancer patients.

Here's the second in what I hope will be a series of podcasts for kidney cancer patients. This time it's oncologist Dr. David McDermott, of the famous Atkins-McDermott team.

Doctors McDermott and Wagner head the renal tumor program at BIDMC, which is an integrated "solution shop," a term used in some of the latest views of how to design healthcare delivery systems. More on that, another day. But for now, here's the interview.

p.s. Yeah, I know 40 minutes is too long. But y'know what else? Concerns about things like that are what keep people from trying things. And for better or worse, I just ain't the kind of guy who's afraid to try. Having been through this twice now, I can see a LOT of things I hope to do better in the future.

So hey, what are YOU not trying because you figure you gotta first know what you're doing?
____________

Next in this series, Sept. 1, 2009:
Dr. McDermott discusses MDX-1106, an experiment treatment

Or, view all my podcast posts.

Christensen: "The traditional general hospital is not a viable business model"

Last week I was fortunate to meet Clay Christensen at a CEO Roundtable breakfast at my hospital, Beth Israel Deaconess. I didn't get to ask the questions that some of you proposed on my previous post, but that will come later. For now, I want to share something that I wrote ad hoc this morning.

Paul Levy, CEO of the hospital, says on his blog that he's been thinking a lot about something Christensen said: "The traditional general hospital is not a viable business model." He pointed out that these hospitals only survive through philanthropy and government funding, i.e. taxes. As you might imagine, this could be problematic to a hospital CEO :-), and Paul expresses his thoughts well, as usual.

He ends by talking about a key concept in the Obama administration's thinking about healthcare reform: "Accountable Care Organizations," or ACOs. There is a concern that this good concept, modeled on the great success of transformed organizations like Kaiser-Permanente, Mayo, and Geisinger, could be perversely applied to untransformed hospitals. I don't know much about the ACO issue, but something about the discussion struck me, and I posted this as a [long] comment. Here it is, with a little editing to touch it up.

----------

I'm going to (yet again) try to express something in an area where I know I'm way over my head.

Isn't there an irony in "accountable care organization"? In business (the kind of business Christensen has studied) leaders know they're accountable to the market because if they don't improve their offerings, someone else might. It may be with the occasional rare disruptive innovation or with the usual non-disruptive improvements, but if you snooze you lose; if you get complacent you can get blind-sided; etc etc etc.

To my naive eyes, this form of accountability (improve services or die) seems absent from healthcare delivery systems largely because it's so hard to enter this market, so any dominator can be as bloated as it wants, and (whether they realize it or not) the managers end up with an attitude of "recipients [consumers] be damned, there's nothing we can do about it."

It's basically the same thing GM executives told Congress in the 1960s. "It's simply not possible to build a better car. We should know; we're the experts."

The thing is, this isn't sustainable: it appears that collapse is coming. PCPCC has been saying for years that HC costs have reached a "game over" scenario (growing faster than employers' earnings), and I recently heard that through May 31, for the first time in history enrollment in US health plans is DOWN 5% year to date.

Given that this is an industry that generally has no experience at significantly tightening its belt while delivering the same result, there's going to be a lot of pain as the collapse begins. Pain in the industry and pain among the consumers who can't get care.

The Globe op-ed page the other day had a block with a few one-line quotes. One guy said "I pay for what prescriptions I can, and beyond that I trust in God." Great work, healthcare industry. Thanks.

Anyway, yeah, I love Clay's message, because it's the first perspective I've seen that (in my interpretation) comes down to "Look, you guys, whether you like it or not, your leviathan selves are headed for a cliff. It's up to you whether you want to take action before or after that happens."

In a recent post on e-patients.net, ACOR founder Gilles Frydman (who knows a few things about what patients do when their needs aren't being met) wrote Will the Great Recession Create Millions of e-Patients? As people stay unemployed (and thus uninsured) long enough that life's illnesses arise, they'll be fending for themselves. They (we) will band together and do what we need, to help each other.

And that brings me to the one thing I think is missing from Clay's prescription. The third part of his mix is patient communities for chronic conditions such as diabetes. What he doesn't predict is something that already exists: patient communities for everything else.

One example is ACOR (communities of cancer patients), where patients often share information that's less well known, sometimes even unknown to their physicians. Another is PatientsLikeMe, where patients band together because the establishment is out of answers for their condition. And mark my words, another will be patients who've been priced out of the market and, more or less desperately, need care for themselves, their kids, their parents.

Christensen talks about the inexorable shift of value from decentralized to centralized and back out to decentralized. What he hasn't mentioned yet is the value that's being generated in the ecosystem completely off the grid. When consumers start to get what they need without even getting in the game, an industry's foundation crumbles.

Because, after all, what drives disruption in the first place (what drives all innovation) is whether consumers' needs are being met efficiently. Increasingly in this game, the needs aren't being met at all.

E-Patients, stand up for the patient voice at Transforming HC 2009, 2/26 in Boston

Late update: If you've read about this elsewhere and you just want to vote for the proposal, click here. You'll see the number of votes and a tiny "Vote For" caption. Click it.

---

Prolog: social media is all about user-generated participation, a great thing for empowered patients, but all the Twitter mentions of this event are passive publicity like "Hey there's an event," instead of "Add your voice" as e-patients do! We're empowered and engaged; we create our own dialog; we participate. This post invites you to do so, because the conference organizers have invited us to. Do it!)

---

E-Patients to the fore: time to speak up! This is a Boston event but they're taking input from everywhere. Yes!

On Feb. 26 I’ll be attending an evening event in Boston, Transforming Healthcare 2009. Interesting for two reasons:

• Some serious CEO-level voices:
  
  
• James Roosevelt, CEO of Tufts Health Plan (one of the best in New England) and member of the Obama transition team
  
  
  
• Charlie Baker, CEO of Harvard Pilgrim Health Care, my own insurance company, and a great health policy blogger
  
  
  
  
• John Glaser, CIO of the Partners healthcare system (Mass. General and related hospitals)
  
  
  
  
• And more
  
  
• Excellently, they're taking user-generated, online, user-voted questions. Holy cow, yes, event organizer Steve Wardell is using a real Web 2.0 social media tool (UserVoice) to create the conversation in advance, from the community! You get to speak up. (Guess what I think you should do.)

Yes, we get to create (and "vote up") the questions we'd like asked of these people. There's expected to be serious media coverage, too.

But here's the thing: I have serious concerns about the questions that are already in the list and top-voted. They're computer-oriented, not patient-oriented. Example:

How patients should expect to impacted by the EHR incentives
Patients will need to understand issues around privacy, access, and portabilty of their digital records, as these records become more pervasive as a result of the new incentives. How can we engage patients as supportive partners in making sure the electronic information in their records is accurate, complete, and being appropriately contextualized?

We?? Who's "we"? Not the patients, evidently!

I created a question, just as you can. You can vote for mine (free), comment on it (hint hint), or add one yourself. Here's mine:

What about enabling user communities like ACOR.org?
We're missing a *major* opportunity if we think health IT is limited to giving providers new systems. In my own cancer, sure I read & shared my online medical data in PatientSite, but the most valuable info I got anywhere was from my ACOR cancer patient community. Every condition needs something like this. Microscopic cost, enormous payback!

Attend if you can. (Let's have a meet-up!) But even if you can’t, speak up online:

• Vote for the questions or create ones of your own
  
• If you’re a blogger, blog about it and ask your readers to participate too.
  
• Same if you’re a member of any healthcare community.

See, if we don’t speak up, conference attendees will rightly conclude we don’t have anything we want to say. And they might even conclude there aren’t many empowered patients who have anything that they want heard.

Plus, if you and I haven’t met, we can have a tweet-up and meet-up. Do it.

If money’s your only reason ($79) not to attend, volunteer: “We’re looking for volunteers who can help us get our message out by blogging, taking photos at the event, and helping with logistics. Let the organizers know you’d like to volunteer by emailing us here.”

Wardell has given us an opportunity to be heard. Good for him! Go click, vote, participate.

Anticancer foods, part 1

As promised Sunday, here's the first of several posts I made to my kidney cancer group on ACOR.

Jargon key:

NED = No Evidence of Disease. We don't say "cured" because invisible microtumors can still exist. All we can say is "no evidence of disease."

Complete Responder: a patient whose disease has "completely responded" to treatment, i.e. disappeared, i.e. NED.

VHL = Von Hippel Lindau syndrome - a particular form of kidney cancer (not mine).

Mets = metastases (distant tumors, as opposed to the primary tumor where the cancer started).

-----Original Message-----
From: The Kidney Cancer Online Support Group [mailto:KIDNEY-ONC@LISTSERV.ACOR.ORG] On Behalf Of Dave deBronkart
Sent: Sunday, December 28, 2008 7:23 PM
To: KIDNEY-ONC@LISTSERV.ACOR.ORG
Subject: [KIDNEY-ONC] Anticancer Foods (was: New Member - Stage IV)

I'm going to write some things here about foods. I'm not representing them as sure cures or treatments or anything of the sort. But, I've been doing some research and I've checked with some people I trust and I think this is worth sharing.

Here's the thing: I'm an IL-2 responder whose mets have shrunk another 75% since my treatment ended 7/23/07, but my oncology team is out of advice for me.

They say my odds of relapse are now down to 50%, but they have no advice on how to improve my odds. But like most people here, I'm not one to sit back and just hope!

My wife bought us a book Anticancer: A new way of life by an MD/PhD who had a brain tumor, got rid of it, and had it recur, all before he was 40. Third time around he decided to look for additional advice, beyond what his doctors had said ("Eat what you like. Just don't lose weight.")

(I first wrote about the book in November: Chocolate Therapy, and I just found a good layman's article about it in a British paper here.)

He found there's a lot of research worth paying attention to regarding how tumors grow and what foods help or hinder them grow.


Background:

1. One way cancer works is to hijack our normal inflammatory response. For one thing, an everyday injury triggers tissue repair, which includes growth of new blood vessels (angiogenesis). We can fight tumors by any intervention that discourages inflammation or angiogenesis. Some foods do that.

2. Angiogenesis plays a key role when microtumors get promoted into nastier things. (The book's cover says "All of us have cancer
cells in our bodies. But not all of us will develop cancer.") It's good to interfere in that process.

Note: that text explained to me why even complete responders (NED) often have a "relapse" (i.e. they go from NED to having visible tumors again). And boy is it motivating to realize I can affect THAT!

Even better: in the three-step cancer growth process (initiation / promotion / progression), PROMOTION IS REVERSIBLE. I realized: holy crap, I don't have to sit here and hope some tiny death pellet hasn't already started growing?? If I catch it early, I can REVERSE it??? That's game-changing!

3. At a Christmas party I bumped into Dr. Othon Iliopoulos of Mass. General, head of their VHL program. (Heck of a party, huh?? It wasn't a medical event.) He told me fighting angiogenesis is also good against mets, whose size can be "vessel-limited."

So: choose foods that resist angiogenesis, and avoid foods (particularly fats) that cause inflammation.


A few specifics:

1. Green tea has powerful antiangiogenesis ingredients. Have 2-3 cups a day; steep for 10 minutes to release the goodies and drink
within an hour before they expire.

2. Green tea also binds receptors that affect tissue penetration into neighboring cells.

3. Raspberries & strawberries have lots of ellagic acid, which blocks angiogenesis by acting against VEGF and PDGF.

4. Turmeric (an ingredient in curry) is a potent anti-inflammatory. Buy turmeric, not just curry (which is only 20% turmeric). Also turmeric must be taken with black pepper, and ideally dissolved in oil.

5. As many have said here, cruciform vegetables are good (Brussels sprouts, broccoli, cabbage and cauliflower).

6. Blueberries and dark chocolate (not milk chocolate!) contain proanthocyanidins, which promote apoptosis (cell death). Yes, ladies & gents, you can fight mets by eating dark chocolate! (At least 70% cacao.) I now eat it at work, declaring that I'm taking my medicine. (You should see the looks I get; people are sorta getting used to my being playful about cancer.)

That brings me to a non-food item, psycho neuro immunology (a long word that I insist on breaking up):

7. It's finally been proven that humor and other mood-enhancers beneficially affect the immune system. (Psychoneuroimmunology: psych affects neurosystem which affects immune system.)

So laugh! And do meditative/prayer/yoga stuff!

---

More in a later post. Suffice it to say, I love being able to look at my kitchen with a sense that it's a weapon to fend off invisible future cancer events!

Note, about the above: In an e-patient community, people (ordinary lay patients) become very educated about their disease, help reality-check each other, and share what they learn.

This is very, very different from the isolation and lack of empowering information that plagued us just a few years ago. (See the opening anecdote of "E-Patients: How they can help us heal health care," Dr. Blakely & Mr. Murphy, which happend the same year the Web came into being.) The Internet has brought us together with each other, and has brought us together with information we might never have seen. It's let us share what we learned, reaching others who might have had even less chance of seeing it.

And here's the key thing: sometimes it goes beyond what patients can get from their own oncologists – even some of the best specialists in the world. "Because," as the banner on the e-patient blog says, "health professionals can't do it alone."

This is "Health 2.0" on the hoof. Here's the definition that some of us "crowdsourced" last June:

Health 2.0 is participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself.

And that is how it works these days. The Internet is altering the balance of power by bringing us together with information and with each other.

Please donate to ACOR

As my longtime supporters know, two pivotal moments occurred in my care: when I was referred to my oncology team at Beth Israel Deaconess, and when my primary doctor Danny Sands handed me a slip of paper that said on it "ACOR.org."

The time has come when, for the first time ever, ACOR must ask for donations. Go directly to their donation page, or read on.

----

ACOR, the Association of Cancer Online Resources, is the community of cancer patients who gave me absolutely the best information I found anywhere on the Internet. I've mentioned them many times: http://patientdave.blogspot.com/search?q=acor, because what I got from ACOR made a huge difference in my sense that I could beat this thing.

Plus, ACOR communities give vital emotional support. Here's a message that came through today:

My husband is on chemo for stage 4 colon cancer, he is not very happy and a bit difficult to live with! I have been having bad headaches and had a brain scan a few days ago just to check there is nothing sinister, the oncologist feels it is stress but thought it best to check with my history, stage 3 RCC. [renal cell carcinoma, the type I had]

My mother is in hospital in a city many miles away and I have not been able to get there yet. This is hard.

Today I have my 3 children with their partners and 3 grandchildren coming for some festive celebrations. I hope to find the magic of Christmas in all this and I would like to wish this for everyone on the list too.

ACOR is a profound expression of people helping people using the Internet. It was conceived by a man whose wife had a bad cancer experience; he created it free out of its personal funds, it's grown to hundreds of thousands of users and each list is staffed by volunteers from the patient community. It's free to all and it's open 24/7, and believe me, both of those make an enormous difference when you suddenly learn that your butt is on the line.

Plainly put: no other resource anywhere outside my hospital gave me more accurate information, and nothing in the world gave me the confidence that the information I was getting from my hospital was accurate. My ACOR community was the best resource I had. And it's open to all: repeatedly we hear about people who have no health insurance, for whom ACOR is their only reliable resource.

Well friends, the time has come when ACOR needs our support. Please go to their donation page and donate what you can. The menu suggests $50, but of course smaller amounts are available - and larger.

How important is this to me? How important do I believe this is for the new world we're creating of patient-centered and patient-empowered healthcare? I myself am donating $1,000, in a year when money is not abundant. Your $5 or more will help too: as the email below suggests, we're going for breadth of support: many hands make light work.

The form gives you three picklists:

• Main ACOR group: mine is KIDNEY-ONC
• In honor of: "general" is okay, but you can use "in honor of a cancer patient" (moi) or "in gratitude for a doctor" (David McDermott) or "a nurse" (suggestions: Kendra Bradley, MeeYoung Lee, Gretchen Chambers)
• Amount
  

I'm breaking mine into several.

Funds usage: Detailed plans have not yet been laid out but I myself have joined ACOR's "inner circle" funds team, and I assure you the goal is to improve ACOR's equipment and software, making it more reliable and more available to more people. At one point in 2007 the entire system went down. The network was unavailable for days, and some messages were lost forever. As awareness of ACOR spreads and the whole world of patient empowerment spreads, we simply can't go on forever with an all-volunteer staff using cobbled-together equipment and software. Plus, we want to add technologies to reach people who don't even have a PC ... today some of the most disenfranchised citizens around the world use only their phone for Internet access.

Thank you. Below is the email that I myself received about this, from Robin Martinez, one of the volunteers who runs the KIDNEY-ONC group. (She's an oncology nurse who lost her husband to kidney cancer.)

====

For many of us, this mailing list saved our lives or our sanity or both. Besides excellent information, we found comfort and friendship here. Today we can do something in return to make sure that we and others continue to have the same great experience with ACOR.

ACOR runs mostly on love and dedication -- but we do need some money as well. We must pay for hardware, software, web storage space, bandwidth, administration, legal costs, accounting, etc. Right now we are scraping hard to pay these bills.

Your contribution will make a difference. We are a non-profit group with proper credentials, so you can take a tax deduction for any donation to ACOR. We have a very easy way to donate on line via Google Checkout, which gives us 100 percent of what you contribute. You'll receive an immediate receipt by email which is suitable for tax purposes.

Please visit today: www.acor.org/donate/now/

While you're at it, please ask your friends and family to donate too. They probably know how much this list means to you. If every list member gave $5 and got nine or ten other people to give just that much, ACOR would receive over $1,500,000!

If someone must donate by mail, here is the address:
ACOR
173 Duane St. Suite 3B
New York, NY 10013

However -- we strongly encourage giving online. That way there won't be any donations going astray! The procedure is easy and quick, and you get your receipt the minute the donation goes through.

"Succeeding in online health" lunch meeting

The Mass. Technology Leadership Council is (as I type this) having a "lunch and learn" session titled "Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites." When I first read the title, I heard "How to make a great online consumer health site," but hey, it's a high-tech business lunch, so it's about how to make a buck at it.

That's fine with me - the "helping people save their butts" community can use some infusions of cash, as investors take advantage of the reality that billions of people are entering the phase of life where they get serious illness and want to have their butts saved. Build great, useful online health resources, and the world will improve.

Here's a clue, investors: to build success, don't sit in a conference room figuring out what someone would want, and do NOT emulate the many web sites that say "Here is what we believe you should want to know." Just ask patients what they want to talk about.

I'm not being anti-establishment here, I'm being businesslike. Peer-reviewed medical journals may be full of reproducible experimental results, but (a) they may not answer what people want to ask, and (b) as happened in my cancer, the best current peer-reviewed journal articles may not be useful anymore. Ironically, people whose butts are on the line may find (as I did) that those are not reliable resources! They are necessary, to be sure, but they may be obsolete, and they may not even answer the questions people want to ask.

Tom Ferguson MD, founder of the e-Patient Scholars Working Group, felt strongly that we often have it upside down, when we have doctors decide what people need to hear. And as we move into e-health, I think he' s right: failure to ask patients "what do you want to hear about?" will be as deadly (business-wise) in online health as it was in any other industry that went through its "railroad" phase. (Can you say "Marketing Myopia"?)

It's a simple business principle - ordinary consumer market research. Do not start by asking the providers what they think we should hear. Use them as a highly valued resource, but don't start by asking them.

Our cancer journal is e-published!

I'm so happy to announce that my community's CaringBridge cancer journal has been published online, for anyone to download (free) or read online. Laugh, Sing and Eat Like a Pig: My Year of Living Cancerously now has an official home on the ACOR web site.

Please spread the word about this book. I ain't in it for the money - I'm in it because 4,000 people a day (in the US alone) discover they have cancer, and face that moment of "What on earth do I do NOW??" I know that feeling very well. Some look for what to do next; others don't even think they can do anything — they just think they're screwed and go into depression.

My intention in publishing this is to demonstrate to both groups that they have a lot to say (and do, and be) about how they face their situation, no matter what the outcome. People who participated in the journal year captured in this book say they were inspired and empowered by the experience, so we're sharing it.

The title is impish and bratty, intentionally so. :) It's the approach I chose to take to the news that I had a lethal cancer - a summary of the advice I got in the first few weeks after diagnosis, before the online journal began. "Laugh" is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness; "sing" is the advice my doctor gave ("you don't want to stop doing life activities that you love - it sends the wrong message"); and "eat like a pig" was a diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

Admittedly, "laugh, sing and eat like a pig" is not a conventional approach to a deadly diagnosis. But that's kind of the whole point. And the whole story is true, every word.

It starts with news of the diagnosis, and planning our approach; discovering the phenomenally valuable cancer communities on ACOR.org; starting the online journal; readjusting life to deal with the pain that arose when the cancer ate away at my thigh bone (eventually breaking it); numerous posts from the "department of transportation," learning to get around by crutches, walker, wheelchair and motorized scooter; extraordinary surgery to completely remove the primary tumor, which had already attached itself firmly to the bowel and a muscle on my spine; learning the uncertainties of the severe immune treatment that we selected to then attack the metastasized lesions from skull to lungs to ulna to thighs; the treatment weeks themselves, including many posts from inside the hospital (it is SO COOL that Beth Israel Deaconess has free wireless!!); the experience of getting MRIs, bone scans, CAT scans and waiting for the "scores"; and all the while dealing with the complications of owning two houses on diminished income, because our Minnesota house hadn't sold yet.

The book has a lot of "e-patient" in it, though I didn't even know the term existed until a few weeks ago (January 2008). See, toward the end of 2007, as my lesions continued to shrink, the question arose, "So what do we do with this year's incredible experience?" When the e-patient discovery was handed to me by my doctor, the answer fell in my lap. So my further hope is that the book will let newly diagnosed people learn about the tremendous resources and choices made available through the e-patient movement.

Please send any comments on the book, pro or con, feedback on clarity or message, anything. The voices of a hundred people are captured in the book; I hope we ultimately touch a million or more. (And don't try to tell me what's realistic and what's not!)

I'll leave you with this, which is the end of the prolog:

At the start of this adventure, I really did not know how many months of life I had left. I did know I was going to do everything in my power, whatever that might be. I also knew that whatever time I had left, I was going to live it like crazy … to laugh, sing, and eat like a pig.

I challenge you to be fully alive, every moment that you have left in life. As you read this book, please listen for how you can face every moment with power and grace, no matter what your circumstance. You have the choice. Be responsible for your own outcomes.

So, how perfect is this? While researching Norman Cousins tonight, I ran across this quote:

"Death is not the greatest loss in life.
The greatest loss is what dies inside us while we live."

Amen. No matter what your situation, no matter what your outcome, my most fervent wish is that you be fully alive for every moment you live. That’s the essence of the story you’re about to read.

The book's location, again, is here.