Notes from a small world

The nurses call it Chemoland, the infusion room with the row of big chairs and the IV poles, where everyone faces straight ahead into an uncertain future. Sometimes one is reminded that if chronic lymphocytic leukemia is not the "good cancer" it is made out to be, it is also not the worst.

It is April 2005, and I am getting a Rituxan infusion, having gone more than a year since my first course of Rituxan put me into a partial remission. In the chair to my left is a woman with short hair, 50ish, taking a new treatment for pancreatic cancer. The old one stopped working after six months, and the prognosis is not good.

Her name is Lynn, and she is often on the cell phone with her husband.

“He’s always hoping to find a miracle cure,” she tells me, in between calls. She says it with the loving indulgence that spouses sometimes allow for the excesses of their mates.

Despite her situation, Lynn is sunny and breezy. We talk about her recent trip to Italy, a sunny and breezy place. We compare cities we've been to and sights we've seen, and then I learn that she’s my next-door-neighbor’s ex-boss.

Small world, since I live two hours away, in a small town. Turns out that she lives there, too.

Also turns out she had the same doctor I had initially, a certain Dr. Lippencot, and that she, like me, was a refugee seeking a better standard of care. Lippencot had treated Lynn for breast cancer a few years back, and later for pancreatic cancer. When Lynn’s pancreatic cancer relapsed, she called Lippencot’s office to ask that a regularly-scheduled appointment be moved up. She was told that this was impossible. When she pushed and pushed and finally got in to see Lippencot’s partner, she was told there was only one treatment that could be done, that it had been done, and that nothing else could be done.

Lynn took to the internet, a rite of passage for patients these days, and found a new but experimental treatment. Then she found a new doctor, my doctor, whose medical knowledge is a bit more current, and who was willing to give Lynn's hope a chance.

So here Lynn sat, next to me, telling her husband to pick up something for dinner, jawing about Rome and how pancreatic cancer has a two-year median survival, almost in the same breath.

On the other side of me is a woman in her late 30s, early 40s, undergoing treatment for breast cancer that has spread to her liver. Apparently the first round of treatment had resulted in a 100-point drop in whatever measurement of cancer is used in such cases. This is a good response, I gather, but her number is still high, 400 or so.

An older woman, who I take to be her mother, is in tears.

“That’s such good news. It’s out of your liver. I bet it’s out of your liver.” Her words betray an uncertainty, and are stated as if speaking them aloud will make them true.

“We should have kept up with the chemo before,” the mother went on. “No use kicking ourselves in the butt about it now.” I can tell there has been much kicking, much anguish. Again, I think that by speaking the words, she hopes to make them true.

The young woman keeps up a brave face, says she is grateful for the 100-point drop, but says she knows there is a lot farther to go. She looks tired, apprehensive. She asks the nurse for a drug to calm her nerves.

I sit in the middle, likely destined to outlive both my chairmates. I am reminded that the road could be harder, that the end, if it is to be, could be more abrupt.

For Lynn, the end came last month. I met my neighbor when he was out walking his dog; Lynn had fallen into a coma in her last few days, and then died. From the time I saw her in Chemoland, she had lived another nine months.

There was an obit in the paper, written with love and care, probably by that husband who was always hoping for a miracle.

“She loved life, embraced every moment and adored adventure and travel. She was a mentor, inspiration, and friend to many, while helping those in need. She saw the best in people and offered great encouragement. She was a loving mother, wife, daughter and sister. She was greatly loved and will be missed.”

There was a picture, too. She had long hair, and a beaming smile, and her eyes were sparkling as much as they could in black and white.

Godspeed, Lynn, Godspeed.

GrannyBarb's (cyber) grandchildren

Have you ever known a city of several thousand people that had only one restaurant? Wouldn't you want some choices, places with a different atmosphere and different fare?

For a decade, the online CLL community has had the ACOR CLL List. It's well-established, a bit formal, a place where you can get a little dressed up and have an elegant dinner. The food is often excellent, and the ambiance is a bit reserved, with a premium placed on good manners. But what if you want to go somewhere to unwind, wear jeans and a T-shirt and get a burger and a beer?

The restaurant metaphor came to mind as I began to ponder the significance of a new CLL patient and caregiver resource, the CLL Forum, which came online last week. Naturally enough, some people have wondered aloud whether CLL Forum is intended to compete with that venerable establishment, ACOR. I am offering my views here, both as an ACOR listmember for more than two years and as a moderator in the new forum. As always, my opinions are strictly my own.

The ACOR CLL list was founded in 1996 by Barbara Lackritz, better known to CLLers as GrannyBarb. Barb was a CLL patient who fought the disease for 14 years, and who turned her considerable energy and talent to using the internet for the betterment of the patient community. I did not get to meet her -- she died several months before my diagnosis -- but she is spoken of with affection and even reverence by those who knew her.

ACOR, for those who don’t know, stands for Association of Cancer Online Resources. This organization, which hosts any number of lists for any number of cancers, uses a listserv format. Back in the last century (!), that format was all the rage. It is text-only, which means that users cannot upload pictures or use graphics. (Even using the "rich text" setting in one's e-mail program can cause a mysterious "=20" to appear at the end of each line.) Posts can be delivered to members in a daily digest, which contains a long string of posts organized by nothing more than the order in which they were posted. Thus a jumble of subjects awaits the reader. After their day in the sun, the posts disappear into that dusty cyber-attic known as the ACOR archives, which are invaluable in that they contain 10 years of patient experiences. The archives allow for a basic organization of the material through a search function, which, alas, seems to befuddle some members.

The listserv format is thus self-limiting, although some people have grown comfortable with it, and there is no denying that it is relatively simple to use since there isn’t much you can do with it. Other people, who have experience posting at non-CLL discussion groups where messages are threaded, and where graphics are part of the communication experience, find the listserv to be one-dimensional. Posting photos, using avatars, changing font colors and sizes, using emoticons (those little smiley things), and allowing for off-topic subforums can create a greater sense of community by allowing people a greater latitude to communicate. This can be especially valuable in providing emotional support, one of the key functions of the online experience for cancer patients.

ACOR’s limited format has other consequences. By extension -- because it would be even more cumbersome to slog through a digest containing 60 posts each day instead of 20 -- ACOR has developed a tradition of trying to stick to the point. Apparently, GrannyBarb had to admonish the occasional member to “stick a sock in it.” And so ACOR has dealt largely with treatment issues -- with the murky proviso that one not give "medical advice" -- and to some extent with emotional ones. Ranting is discouraged, off-topic discussions are prohibited, and matters that might inflame the emotions, such as religion and politics and comments on private v. socialized medicine, are verboten. There is even a ban on “internet humor.” These things are generally understandable given the limits of the listserv format, which requires that the information provided be as focused and as brief as possible.

But, alas, this atmosphere can be stifling to the more free-spirited, and it has encouraged a hall-monitor mentality among a few listmembers, which can be a source of friction in itself. Any group, of course, has its discordant moments. If a waiter occasionally spills soup on a customer, or a customer has a bit too much Bordeaux and starts throwing rolls across the table, it does not mean that the restaurant is a bad place. The ACOR CLL list was, is, and will remain first among equals, an invaluable resource, a place with familiar traditions and excellent food for thought.

CLL Forum, by contrast, uses a discussion format that allows for all kinds of experiences. By its very nature -- a discussion group for leukemia patients -- it will deal with some of the same treatment issues as ACOR. But so do any number of other groups, such as the Leukemia and Lymphoma Society BBS and the three groups on Yahoo: Scott’s excellent CLL Research and Advocacy, where the latest abstracts and news updates are posted; John’s SLL-CLL-Edu, which discusses exactly the sort of treatment questions that arise on ACOR, and which gave rise to the CLL Information Group; and Walter’s CLL_Alternative_Therapies, which goes off the beaten path into an area sometimes discussed on ACOR and often met there with skepticism.

All of these, except the Leukemia and Lymphoma BBS, were founded by people who started out at ACOR but who found, for one reason or another, that there was a niche to be filled elsewhere. They opened their own cafes. And lest we forget, CLL Topics began as a discussion group on Yahoo, and Chaya was an ACOR listmember prior to that.

Now we have CLL Forum, and I’d say this is becoming quite a restaurant town. Ultimately, the events that gave rise to any of these forums are inconsequential in hindsight. Who remembers, and who cares? The important thing is that patients and their caregivers have more choices, more places to belong, more chances to learn and to get the support they need.

Something like CLL Forum was inevitable because of the format limitations of ACOR, and these have been noted in discussions on the ACOR list for quite some time. CLL Forum allows for posts to be compartmentalized by subforum and then topic, and to remain publicly accessible for later viewers, as opposed to disappearing into an archive. The graphics capabilities, as well as those for instant messaging among members and live chat, allow for expanded opportunities for emotional support, and for dealing with all dimensions of the CLL experience. There is even a space for people to rant without bothering those with delicate ears. There are also places just for newbies; one of the problems with the listserv format is that announcements of depressing events such as patient deaths are mixed right in with everything else, making it hard for new patients, just getting their feet wet, to read the daily digest without freaking out.

CLL Forum also has places for people to relate to one another without talking about CLL, to share the other things in their lives that make them whole people: games, hobbies, family, pictures of the canine and feline kids, and so on. In this restaurant, the menu is larger and more organized, and there are several dining areas, some with Mozart playing in the background, some with rock and roll. There’s a pool table and a bar, for those inclined, and I think we may even have a singer, but there are quiet niches, too. It’s a large place, where the food may vary a bit in quality, but where you are more likely to strike up a conversation with a stranger.

Many CLL patients and caregivers have been members of more than one discussion group for quite some time now; I count myself among them. A number of people from ACOR have come over to CLL Forum to sample the fare and are now posting to both sites. (And given CLL Forum’s easier visibility on the net, it will probably attract members who will eventually gravitate to ACOR as well. This networking will help everyone -- after all, there’s a reason they call it the “inter” net.)

There's no law that says you have to eat at only one place, and it is a testament to the energy and dedication of the CLL patient community that we have any number of choices, depending upon what you're in the mood for. You can, for example, have breakfast at Yahoo, lunch at CLL Forum, and dinner at ACOR, after which you can stroll over to the university coffee house and listen to Chaya or Dr. Hamblin. (And you're always welcome here at the hot dog cart.)

We have some ethnic food, too: There's the UK-based CLL Support Association. ACOR has a CLL-UK list, which is managed by one of the managers from the main list, who wears two hats. Then there's Chris's CLL Canada -- I'll take some maple syrup with that! -- founded by another ACOR listmember. In fact, a separate CLL-CN list was started on ACOR in 1999 following complaints that the main list was too oriented toward US issues, leaving members from the Great White North out in the cold.

It's instructive to look at what Barb did about the “competition,” as it were. Here’s what she posted:

Dear Members of CLL-CN,

This is the first post on the list. We started it today with all your names. Maggie is your Canadian List Manager and I'm her assistant manager. Maggie is over the moon about this and I'm flying on her coattails as an honorary Canadian on this list. This lets you know we're open for business.

I'll help in any way I can, and I certainly hope you'll all decide to remain with the global CLL list as well.

Maggie, it's over to you.

GrannyBarb - Honorary Canadian and proud of it! DX 1989, Fludara, Fludara/Mitaxantrone, Fludara/cytoxan, Auto BMT 6/97, presently cancer free

GrannyBarb’s example was to participate in more than one place, to welcome the new kids, and to keep working tirelessly for patient support and education.

As I said earlier, I never had a chance to know her except by reputation. She was the first CLLer to pioneer the internet, and her dedication led to the creation of a brilliant child and enduring legacy, the ACOR list. My guess is that she would be pleased with her growing number of grandchildren, who each contribute in a different way to building a sense of community, and to providing knowledge, comfort, and hope. We should never forget that all of these sites are brothers and sisters in the struggle against an insidious disease. And with the inspiration of Barb's example, we will together, I hope, one day slay the dragon.

I will let Barb have the last word as, I imagine, she usually did. Her generous and positive outlook can be seen in this post from September 1998. While the group to which she was referring was the ACOR CLL list -- no others existed at the time -- her words could just as well apply today to the larger group of resources that has grown out of her original effort.

“We weren't even really a list, just a nutty group of CLLers who had found one another and were determined to share with one another. I'm so glad we did find one another though, and that we grew, and grew, and grew! Each new member of this group adds so much in thoughtful, helpful information that it's wonderful.

"OK. I'll get off my soapbox, but thank you all for being here, for sharing, for supporting us, and for letting the world see what a determined group of CLLers can be.”

Introducing www.cllforum.com

The CLL community has a new internet meeting place: www.cllforum.com

This site has been put together by people with a lot of energy and dedication and I have agreed to serve as a moderator.

Here's the "official" announcement:

We are writing to announce the launch of a new internet resource for CLL patients and their caregivers.

This new site uses a different format than that of the ACOR listserv. It offers an expanded ability to communicate and interact, with subforums for a variety of CLL-related topics, as well as some off-topic options for those who just want to talk about other things. The software allows you to upload pictures, use an avatar to represent you in your posts, change font sizes and colors, use emoticons, and so on. We hope this will be a creative and fun way to communicate and build an online community. Our format also allows you to pick and choose from a menu of things you want to read about and participate in -- for example, those who want to discuss CLL treatment can do so without being interrupted by those who want to chat about the weather. There are no banned topics and we have areas for freewheeling debate.

CLL Forum is not intended to compete with the ACOR list, of which we are all members and will remain members. ACOR is an invaluable resource and its members have gone on to create any number of useful complementary websites, including CLL Topics, the Yahoo discussion groups, and various blogs. We believe this new site will be a helpful part of the constellation of places where patients and their caregivers can go for information and support.

We welcome you to check it out, participate, or just lurk, and we are interested in your comments and suggestions. Your input will help us build the site and tailor it to your needs.

Introducing the CLL Forum: www.cllforum.com

Sincerely,
Steve Madden
Denise England
Jenny Lou Park
Kurt Grayson
David Arenson

That pretty much sums it up. Stop by and check it out!

Rituxan and palliative care

Dr. Terry Hamblin’s third installment of his “What is the aim of treatment?” series has created quite a stir among patients. Many of us, after all, have been assured by our doctors that chemotherapy is pretty harmless, perhaps even desirable, and certainly inevitable. Essentially, Hamblin posits that when it comes to chemo and CLL, we are often putting the cart before the horse. Here is a lengthy but important excerpt:

"Except in the most virulent cases I prefer to take the long view. I’m not much interested in treating a blood count. Treating a blood count is like polishing the bodywork while the engine is disintegrating. I have two concerns. I want the bone marrow to go on making blood cells, and I want to stop the immune system falling apart. So unless the bone marrow is threatened I prefer to avoid treatment. The CLL will eat away at the immune system, but it will do it slowly. Every treatment that I know will make the immune system worse. There is now way of treating the CLL that will restore the damaged immune system.

"So, supportive care is the first thing. Blood transfusion or erythropoietin to keep the haemoglobin high. Surgery for an uncomfortable spleen or one that is consuming red cells or platelets. Irradiation of large or uncomfortable peripheral lymph nodes. Antibiotics for infections. And when infections are caused by low serum immunoglobulins then intravenous immunoglobulin infusions on a regular basis. Do what you can to avoid having to have treatment.

"If treatment is inevitable, my choice would be the treatment that is least harmful. At the moment this is rituximab. It only works in about half the patients, and it does lower the levels of normal B cells, but this is transient and they quickly return. Rituximab plus a growth factor like G-CSF or GM-CSF may well be more effective. So if it works for you and gives you a year off treatment then go for it, and don’t be afraid to repeat it. True rituximab resistance is very rare. In some patients increasing the dose will turn a non-responder into a responder.

"It’s after that that you have to think about chemotherapy, and that is the subject of another article."

I am in general agreement with the doctor and am grateful that he is saying what a lot of us patients have been concluding for a long time: the best course is to play for time and avoid chemo until absolutely, positively necessary.

As we wait for Hamblin’s next article, I do want to make a point about supportive or palliative care followed by the use of single-agent Rituxan. My argument is that Rituxan can be part of that palliative care and should be considered for that purpose before the disease gets so out of control that Rituxan is rendered pretty much useless.

If you just let things go and the marrow gets to the point that one needs transfusions of red blood cells, it is unlikely that Rituxan will be very effective as a next step. Indeed, in a Stage IV type of condition, there may be other factors, especially involving nodes, spleen, or unusual conditions, that might require a more powerful drug response. The value of single-agent Rituxan in such a case may be limited, even with the addition of a growth factor such as G-CSF or GM-CSF.

For one, Rituxan doesn't work too well in the marrow, though anecdotal evidence from the MD Anderson R + GM-CSF trial seems to indicate that it might have a minor beneficial effect. One patient I’ve spoken to, who had bone marrow biopsies both before and after treatment in this trial, reported a small but decent improvement in the marrow -- from 45% CLL cells before treatment to 25% afterwards. (Adding a steroid such as methylprednisolone to the Rituxan would help reduce CLL in the marrow further, as well as reduce the nodes and spleen.)

The finer points of when to palliate and how obviously depend upon one's case of CLL. In my desire to avoid chemo, I am gambling that Rituxan will stave off disease progression -- or at least slow it down -- for as long as possible. (I have had three courses of Rituxan during the past two years.) My plan, then, barring an unforeseen monkey wrench or the arrival of important new drugs on the market, would be 1) Rituxan, 2) palliation when Rituxan fails, then 3) chemo. I am guessing that this will buy me more time than 1) letting the disease progress to the point where palliation is needed and Rituxan may be rather ineffective, then 2) palliation, then 3) chemo. (All these well-laid plans assume, of course, that I don't develop some sort of complication that demands stronger treatment sooner; in the same way that jumping into chemo early can be a mistake, so can avoiding it at all costs when it really is needed.)

I had a baseline BMB done after diagnosis two years ago. It showed 44% CLL cells and 50 to 60% cellularity (the percentage of my bone marrow being used to create cell lines; the rest of the marrow is kept in storage, as it were). This means I have, or had then, a majority of healthy non-CLL cells and a great deal of space for my marrow to make room for cell production. There are patients who don’t have a problem with red blood cell and/or platelet production crashing until their marrow is more than 90% compromised at 100% cellularity. I am hoping that my Rituxan maintenance at the very least will allow me to tread cellular-production water for quite some time.

In addition, there are splenic complications to consider. My spleen balloons between treatments, trapping platelets as it gets clogged with CLL cells and expands. My platelets have been in the normal range but on a gentle decline, and they are always boosted after I have Rituxan, which is working to palliate the symptoms. Would I be better off letting things go and just having the spleen removed? Or are the problems born of Rituxan a better risk than the problems associated with having no spleen?

As to nodes, mine have been reasonably cooperative, numerous but relatively small at their biggest (3 cm or so). There are patients with much bigger nodes. Since some drugs do not work well on large nodes -- notably Rituxan and Campath, the latter being fairly ineffective at the 5 cm level -- I think patients need to think about the implications of leaving them to fester, as it were. Once again, Rituxan can perform a palliative role, reducing the nodes in size for a time and therefore keeping them at bay.

CLL patients face unexpected complications, such as clonal evolution of the disease. The more CLL cells floating around, and the longer you have the disease, the more likely you are to have one of them evolve into an even nastier clone. If Rituxan knocks the CLL population back, it may be a worthy ally here. (When it comes to clonal evolution, given what I know of chemo’s facility for selecting for treatment-resistant clones, I’d rather take my chances with mild treatment or supportive care.)

The whole argument that Rituxan is a suitable tool for palliation hinges on the fact that is is of very low toxicity, at least in most patients. Still, there is risk. Wiping out healthy B cells on a regular basis can contribute to declining immunoglobulins. Rituxan can lead to delayed-onset neutropenia. In rare cases, it can cause severe skin problems. And for the most part, the consequences of repeated re-use of Rituxan as a single agent in CLL are unknown. You have to take your chances.

There are no easy answers and no elegant solutions. The best we can probably hope for is two steps forward and one step back, and even one step forward and two steps back is better than nothing. As Gilda Radner’s Roseanne Rosannadanna used to say, “It’s always something. If it’s not one thing, it’s another.” But one school of thought is that for patients with all but the most aggressive disease, heavy-duty chemotherapy is the last thing to do, not the first.

AFTERWORD

From today's vantage point it is interesting that I wrote the following:

"My plan, then, barring an unforeseen monkey wrench or the arrival of important new drugs on the market, would be 1) Rituxan, 2) palliation when Rituxan fails, then 3) chemo. I am guessing that this will buy me more time than 1) letting the disease progress to the point where palliation is needed and Rituxan may be rather ineffective, then 2) palliation, then 3) chemo. (All these well-laid plans assume, of course, that I don't develop some sort of complication that demands stronger treatment sooner; in the same way that jumping into chemo early can be a mistake, so can avoiding it at all costs when it really is needed.)"

AIHA, which came a cropping in March 2007, was that complication. I should add that palliation may work in some cases, especially where there is little "bulk" in the nodes, spleen and/or liver. For any number of reasons a great many patients will not have the luxury of this approach. And there is no free lunch: living a transfusion-dependent life certainly diminishes its quality to some extent, and there are risks associated with blood transfusions. Besides viruses and bacteria, these include iron overload. Still, for a few this may be an option. One patient on the ACOR CLL List has done it for years now and with such success that doctors at the NIH want to study her. -- November 18, 2007

ei8ht is enough

The information explosion has kaboomed all over my TV set, like a swarm of bugs that hit your car windshield and squash themselves in front of your view.

For some time now, the sensibilities of viewers have been assaulted by those little bugs -- actually, symbols of networks such as the CBS eye -- that appear in the lower right of the screen and stay there for the duration of the program.

I have learned to live with this senseless bit of advertising, for the most part, especially in cases where it is shadowed enough to be barely discernable. It’s become an annoying fact of life, like getting sand in your swimsuit at the beach.

My local PBS affiliate had been using the little PBS head, which I was managing to accustom myself to, though I wonder why a nonprofit public broadcasting entity needs to use such reminders. Silly me. Their graphics department has now gone completely insane.

I tuned in last night to watch my favorite collection of political blowhards, The McLaughlin Group. There, almost completely obscuring Pat Buchanan, who sits in a chair on the lower right, was a new constellation of crap. While obscuring Pat Buchanan may not be such a bad thing, really, this was over the top. On the left side of the constellation was the PBS head. To the right was the station’s new logo -- ei8ht -- in large letters. Oh, how clever to make the “g” look like an “8” since this is Channel Eight! (The kids watching Sesame Street ought to have fun with that one . . . “But mommy, the TV says you spell “eight” with an “8” in the middle!”)

What genius at Arizona State University thought of this? How do I know Arizona State University is involved? Because below the “ei8ht” and the PBS head was written, in its glorious entirety, “Arizona State University.” It looks worse on the TV screen -- where "Arizona State" is on one line and "University" is below it -- than it does in the illustration here.

How much more crap can they put on the screen before they start covering Eleanor Clift as well?

To top it off, several times during the show a few zingy notes of music could be heard interrupting Mr. McLaughlin, accompanied by an orange band flashing across the screen announcing: “Next: Antiques Roadshow.”

The USA network already does this, with obnoxious animated images in the lower left corner promoting their next program. I only watch USA for Monk, so I could care less what’s on next.

Where will this trend end? Which station will be the first to rent out the upper right corner to Pepsi or Kentucky Fried Chicken? Will Fox News finally drop its pretense of “fair and balanced” reporting and put the Republican elephant on the upper left?

It almost makes me pine for the old days when TVs had knobs and you could forget what network you were watching and simply enjoy the program. What a revolutionary concept. Maybe some day it will catch on.

Patientzilla

Just when doctors thought they were safe, along comes Patientzilla. He can breathe fire and he'll stomp on stuff if he has to . . . Empowered patients -- both individually and collectively -- are now a fact on the medical landscape.

The blogosphere, as Forrest Gump might put it, is like a box of chocolates: You never know what you’re going to get.

So imagine my surprise when a hematologist/oncologist, just the sort of animal that we CLL patients depend upon, decided to read my article at CLL Topics called Diagnosing your doctor. Dr. Vance Esler of Amarillo, Texas, was inspired to write a reply in his blog. His first post is called The Empowered Patient. He followed this with Why Your Doctor Doesn’t Want to Talk as Much as You Do.

Since I have a history of diagnosing doctors, and since I think choosing doctors wisely is essential to success in CLL, I was interested in his comments. Basically, Esler says a little knowledge is a dangerous thing but that informed patients are OK so long as they don’t try to practice medicine with his license.

That last point is a valid one, I think; we cannot expect to direct our doctors. We do need their expertise and advice. But we can expect to work with them. This means they should listen to our concerns, and we should listen to theirs.

“I have mixed feelings about working in the era of the empowered patient,” Esler writes. “It helps when patients are educated enough to make intelligent decisions and to cooperate with the plan. On the other hand, it is tiresome having to negotiate or justify every little thing . . . The information explosion, combined with a desire to treat my patients correctly, forces me to read constantly. It used to offend me and fill me with dread when patients would walk in with reams of stuff they had pulled off the internet. Now I am used to it. 99% of the time I can honestly say, "Yep, I am aware of that." Now I realize that people are just being diligent.”

From what I’ve heard from my CLL friends, and know from my own experience, not all doctors are diligent readers. We live in a sound-bite world, and too often I get the impression that some doctors are barely able to keep up with the headlines, let alone issues of substance that can be at the heart of life-or-death decisions for patients.

No doubt doctoring is a busy business. When I watch mine at work, as I sit for hours in the infusion chair, she is constantly running around the office and barely has time for a bite or two of lunch. And no doubt there are patients that one dreads to see coming. Anyone who works with the public is familiar with this feeling. I used to help run a hotel, and when certain people got within 15 feet of the front desk, I would look for any excuse to step away for a minute. There was one old lady who was such a pain that I wanted to buy her a T-shirt that read: “The more I complain, the longer God lets me live.”

But neither time constraints -- a topic to which Esler devotes a great deal of time -- nor the pain-in-the-ass factor are enough to justify an argument that patients, like good children of yore, should be seen and not heard. There is simply too much at stake for the patient.

Esler has some nice things to say about me and my blog, including that I have “a remarkable grasp (of CLL) for a lay person.” What he may not realize is that I am one of many “empowered patients” with this sort of knowledge, and that there are any number of CLL patients who know as much or more than I do. I just tend to write about it.

There are some compelling reasons why CLL patients, in particular, have felt it necessary to become informed, or empowered, or whatever you want to call it.

The first reason is the quirkiness of the disease itself. In most cancers there may be a very limited set of choices when it comes to formulating what Esler calls “the plan.” It’s almost hard to imagine after a few years in the trenches with CLL, but there may even be some “no brainers” out there: This is what you have, this is what you do, end of story.

In CLL, wise patients have no choice but to think for themselves. In a cancer where even the experts disagree -- think of Dr. Terry Hamblin and Dr. Michael Keating debating the value of heavy-duty chemoimmunotherapy, which they have in fact done in person (click link at very bottom right) -- our very survival can depend upon our ability to question our doctors’ assumptions. This most definitely includes those doctors on the local level who may not be up on the latest, and whose thoughts about treatment may be somewhat outdated. Countless patients have learned the hard way that it pays to be diligent.

[NOTE: If you use the preceding link to CLL Global and read Dr. Keating's version of his debate with Dr. Hamblin, please also see Dr. Hamblin's comment under the "Comments" link at the bottom of this post.]

The search for objectivity

Esler writes: “There is a major caveat to the proactive patient approach: patients who direct their own care lack objectivity. It is said that a physician who cares for himself has a fool for a doctor. Patients who insist too much on directing their care may become just as guilty of that.”

In a narrow sense, I understand what he is saying. Doctors are trained to look at symptoms, blood test results, and the like, and to see a complete picture. Some patients may be fixated upon a particular symptom, may not understand where a particular test result fits in the order of importance, may let emotional issues cloud their judgment, and so on.

But many doctors treating CLL are just as clueless. My own experience with Dr. Lippencot shows what can happen when a doctor mistakenly gets fixated upon a particular symptom. A medical license is no guarantee of expertise. I would venture to say that a majority of CLL patients posting to internet forums have felt compelled to change oncologists at some point. It’s not that these patients want to direct their treatment and are looking for a pushover with a prescription pad. They simply want to find a doctor who they feel is truly competent in CLL, and who is willing to treat them as a partner in the process of formulating “the plan.”

Patients, through their own experiences and from talking with others online, quickly realize that there are any number of subtleties that can be easily missed, or misconstrued, by doctors. Take staging, for example. Dr. Hamblin has quoted Dr. Kanti Rai, the namesake of the Rai staging system, as saying that his entire system would have to be thrown out if one uses CT scans. Doctors using CT scans for CLL are seeing things that Rai, when he developed his system in the 1970s, could not. The result is that patients can be staged “later,” or the disease can be thought to be worse, than it actually is. Hamblin points out that a CT scan will probably show a swollen lymph node in a Stage 0 patient. In another patient it may show a swollen spleen, but if that spleen cannot be palpated, it is inconsequential in the Rai schema. Yet how many Lippencots out there are rushing to treat based upon blobs they see on X rays, failing to put that information into context? Far too many, I’m afraid.

So wise patients -- by necessity -- need to develop some objective sense of the details of their particular case, and where that case fits into the scheme of things. In CLL, only a fool blindly follows a doctor’s orders.

Beyond the technical questions, I think a patient needs to come to grips with his or her condition in order to participate intelligently in the process of treating it. Some -- the ostrich crowd -- don’t want to know, of course. But many patients want a basic understanding, and some want to know everything they can.

Getting some sense of “where I stand” or “the big picture” is, in fact, part of human nature. The world is made up of many kinds of people. Some, who are probably more passive in their non-cancer daily lives, might prefer that a doctor tell them the answer; others, the more strong-willed to begin with, want to know through their own examination of the evidence. They may seek the counsel of a doctor or two, but reserve unto themselves the final determination of “truth.”

So, for any number of reasons, the search for objectivity has become a major task of informed patients. It consumes many an online discussion. Patients are always talking about such things as: Does this symptom mean I need treatment? Which treatment is best given my type of CLL? What are the consequences, down the road, if I use this treatment today?

The CLL Internetwork

This need to figure out what is going on has given rise to a well-developed network of online resources. What I know about CLL is not the product of original research; it is a synthesis of the information available in such places as CLL Topics, the ACOR list, Dr. Hamblin’s blog, the CLL Research list on Yahoo, and perhaps a dozen other places. In these sites I have found links to countless abstracts and articles, and I have also found intelligent discussions of what all these things mean and how they apply to given cases.

I see my little role in this internet enterprise as one in which I help provide some context. I hope to show, in between occasional tangents, how all this information can be prioritized and organized and used in a practical way by patients trying to figure out what to do.

This CLL Internetwork -- I’ll give it a name, and perhaps it is the real Patientzilla -- is used by doctors as well. There are local oncologists who follow CLL Topics, for example. And Topics science writer Chaya Venkat -- a retired research chemist with a doctorate in education -- has developed a good working relationship with some of the top doctors in the field. She can turn to them for information and counsel, and, in turn, she can suggest ideas about clinical trials, prognostic tests, treatment possibilities, and so on. This shows how the internet is a two-way street, giving patients more information but also enabling receptive doctors and researchers to understand what is on the mind of the patient community.

Dr. Hamblin’s presence on ACOR and through his blog also makes an important statement, that here is where his duty is, and here is where the action is. It helps that he is semi-retired and has the time, but it says a lot that he spends it on the net working with patients. Dr. Hamblin, in case you don’t know, is one of the top CLL experts in the world. And what he says definitely gets back to oncologists in countless localities, expanding their understanding of CLL through the patient as intermediary.

A quick example of the growth of an idea is the concept of Rituxan plus G-CSF as a useful frontline therapy. CLL Topics has been beating the drum about this (with EGCG and fish oil added to the mix, in a protocol nicknamed "RHK") for years. A ripple effect started as patients began to convince their local doctors to give it a try. Now, in an important new blog post, we see that this concept has been endorsed by Dr. Hamblin, who has been able to review the anecdotal evidence regarding its use over the course of time. This, in turn, will probably help the concept ripple even further -- an idea born on a patient site on the internet, and coming to an oncologist near you.

The point of all this is that the CLL Internetwork is here to stay and is symptomatic of something that is spreading like a cancer (forgive the pun) across cyberspace: the free availability of information to patients with all sorts of ailments.

This will only expand as time goes on. The net effect (yes, another pun) is that patients will become smarter consumers of medical services. This may be uncomfortable for some doctors, especially those who would rather not be bothered answering questions or discussing details. They will no doubt stay in business, though, because there is a doctor shortage in many places. And because there will always be those patients who prefer to not know, who just want the doctor to fix them. It never ceases to amaze me, as I sit for my Rituxan infusion in what the nurses call Chemoland, that a lot of my fellow patients don’t even know the names of the drugs being pumped into their veins.

For some doctors, who do not carry the baggage of thinking they have the truth in a medical bag, this new era may prove exhilarating. (Even the skeptical Esler says that it “can be fun” to work with educated patients so long as they are “nice” and “respect the doctor’s time.”) There are doctors who have an open approach, who say that learning from patients is one of the pleasures of their profession. These doctors actually appreciate the abstracts, articles, treatment protocols and other information patients have brought to the office. Humility is important in any role we play in life, and that goes for both patients and doctors. We all have room to grow in our knowledge of things.

Patient empowerment is now a fact in the medical landscape. The cat won’t go back in the bag, the horse is wandering well away from the barn, and the whole damned camel is in the tent. And this means that the era of the paternalistic doctor will slowly -- very slowly, perhaps -- come to an end.

I get the sense from Esler’s posts that he is not exactly embracing this change, but rather accepts it as a fact of life that takes some getting used to. He is undoubtedly not alone. But he is living, as the Chinese saying goes, in interesting times. The dissemination of knowledge cannot be stopped, and knowledge is power. If you doubt that statement, think of China again. There is a reason the Communist government in Beijing wants Google to censor its search results for Chinese net surfers.

Where the buck stops

If you think about it, people should be empowered about their health, whether they have cancer or not. We should all have an understanding of the basics of how the body works and how best to maintain it, and we should realize that this maintenance is an active responsibility. There seems to be a disconnect in Western society at times, in which people tend to regard their bodies as they do their cars: something to be used any way they like, which can then be towed into the shop to be fixed. Would that it were so.

If I were to define the term “empowered patient,” I would say it is someone who has researched their medical condition and who expects to be involved in determining how it is to be handled.

But there is more to it than that. The empowered patient is one who understands where the power to make decisions ultimately lies. When it comes to deciding on treatment, let’s remember who is employing whom. Patients must be comfortable with what is being proposed for their bodies. They have every right to expect a reasonable discussion of the options. If you’re suggesting that I use a drug with potentially major, perhaps even fatal, side effects, I have every right to expect a few extra minutes of your time to talk about it.

Esler says doctors are sometimes loathe to spend much extra time on patients, pointing out that doctors are generally paid by the job and not the hour. This situation, he says, is the result of price controls forced on doctors by private insurers and Medicare, and means doctors earn their money on volume of patients seen, not on the time spent with each patient. Esler says this isn’t ideal, but it’s just the way it is.

I think almost every patient eventually realizes that we Americans are not living in an ideal world when it comes to the health care system. Rube Goldberg could not have devised a “better” contraption, but that is a rant for another post. Esler’s comments bring home the fact that, to get the most out of their care, patients should be as prepared and focused as possible during their office visits.

But beyond that, there are times when it is necessary to say “damn the system, full speed ahead.” I see adequate communication between doctor and patient as something essential to getting the job done right. As I learned in the hotel business, there are low-maintenance guests and there are high-maintenance guests, and at the end of the day it all pretty much balances out.

Given the pressures and shortcomings of the health care system, perhaps it is all the more challenging to find a doctor whose dedication to his or her craft sufficiently outweighs his or her concern about the bottom line. There is a big difference between doing a job and being dedicated to a craft, and this difference in attitude can be found among people in any profession. My dentist has a sign in his office, something to the effect that every patient gets the personalized attention they need, so please be patient. He is always running late. Good for him.

When it comes to the question of power in the doctor-patient relationship, I will close with a story about Abraham Lincoln meeting with his cabinet shortly after he took office. The cabinet considered an issue and voted to proceed in a certain way. Lincoln was alone in disagreeing with them. He pointed out that his views would prevail since, being the president, he was “a majority of one.”

Well, you are the president of your body, serving a lifetime term. You are the one who must make the final call, and you are the only one who has to live with the consequences. Like Lincoln, you can choose to go along with your advisors -- or not.

The balance of power rests with the patient. The doctor proposes, the patient disposes. In the era of the CLL Internetwork, patients can do so with greater wisdom and intelligence. Doctors had better get with the plan.