My friend Kurt

One of the few good things about chronic lymphocytic leukemia is becoming friends with other patients, and one of the worst things about it is seeing friends die of it. Kurt Grayson was a friend of mine who died this week of complications stemming from his CLL.

Kurt and I led very different lives before our diagnoses. Kurt had a career in Hollywood as an actor in movies and television. He had money, too, and a big house in the San Diego foothills replete with luxury and sports cars. For a time he lived life in the fast lane, both literally and figuratively. Not long after his diagnosis, which was around eight years ago, he lost everything in one of those California wildfires we see on the news from time to time. He moved north to Sacramento to care for his elderly parents and he became active on the ACOR CLL list and other internet discussion groups.

It was there, through his posts, that I met him. Kurt was a bit of a character, which I liked, as I suppose it takes one to know one. We found that we had certain things in common, including a questioning attitude toward the conventional wisdom. We also shared senses of humor and to a great extent outlooks on life. Kurt was not traditionally religious and neither am I. Our politics were similar. When it came to internet discussions, we both favored free and open approaches.

This kept Kurt in conflict, sometimes, with the ACOR list managers. Yes, Kurt could go on too long, and yes he was passionate in his views. Before Dr. Terry Hamblin arrived on the list and lent his credibility to the treatment protocol of chlorambucil plus Rituxan, Kurt was there urging people to consider it. It had, in fact, worked for him, buying him a remission of three or four years before he became refractory to it.

Kurt once told me the story of his visit to UC San Diego shortly after diagnosis. Dr. Thomas Kipps looked him over and said he’d be dead within a year if he didn’t start big-gun chemotherapy ASAP. Kurt proved Dr. Kipps wrong.

But one cannot cheat the disease forever, and it was finding a second act to follow the first that proved impossible. Kurt relied heavily on the internet. He became friendly with any number of doctors and patients and he consulted them from time to time. As so many of us have learned, advice about what to do with CLL is often contradictory. Kurt was always casting about for suggestions and weighing the pros and cons. Unfortunately, as time went on, his health worsened. And Kurt, focused as he was on caring for his parents, had not developed an in-person relationship with a CLL expert doctor and never found the time to venture to a CLL center for a workup.

In February 2006, Kurt and I, along with Steve Madden, Denise England, and Jenny Lou Park -- three other people of whom I have grown increasingly fond -- founded CLL Forum. Kurt was a moderator there but he didn’t get to spend much time on the job. His symptoms became acute and unusual; fluid would build up in his lungs and had to be drained. His spleen and liver were enlarged, and tumors of some kind were found on the liver. The old chlorambucil plus Rituxan, which had worked so well for awhile, ceased to be effective. Infections and pneumonia were a further problem. Kurt was in and out of the hospital.

This year, Kurt settled on FCR as a next step in therapy. By then his spleen had become huge, 32 cm in length. The drugs had no effect. Kurt became confined to a wheelchair.

About two months ago Kurt was pondering what to do as he was growing progressively weaker. He visited a CLL doctor at Stanford who told him, flat out, that he was dying. This shook Kurt up, as it would any of us. The doctor had few answers and suggested that Kurt go to UC San Diego or MD Anderson. Kurt had also been in touch with Dr. Richard Furman of the Weill Cornell Medical College at New York Presbyterian Hospital, who posts to a CLL discussion group on Yahoo. Furman was evincing an interest in Kurt’s case.

This is the situation as I found it when I gave Kurt a call. We had a long conversation about his options and about life and death. It is odd how we patients can become comfortable talking about things that make our healthy counterparts squirm; it comes with the territory of being in this battle together and facing what we face.

Kurt knew that he had to do something and was thinking of traveling to New York to be treated under Furman’s guidance. I supported this idea because I felt Kurt had a doctor who seemed to be interested in him and whom Kurt liked. Not every doctor wants to take on a difficult case. Kurt had to throw in his lot with someone and take action soon, before it was too late. It was the path of hope, however narrow.

And so Kurt went. Unfortunately, he had reached the point where his body simply began to shut down. He developed sepsis, followed by respiratory complications that required intubation, and then liver failure.

I write all this because it is the story of Kurt as I knew him and I don’t think Kurt would mind. He was always willing to share his experiences, for at his core he had a genuine desire to help other people so that we can all find a way out of this CLL mess.

(Kurt’s story is a reminder of the gravity of progressing CLL as I approach, on September 3, the fourth anniversary of my diagnosis. That makes it the start of my fifth year with the disease (five being the official count; my theory based on 1996 blood work is that this may actually be the start of my 12th year). Time, and CLL, marches on. I am not doing as well today as I was four years ago. Four years from now I will not be doing very well at all without some major intervention. Such is the nature of the beast we face, those of us who are not blessed with an indolent version of “the good cancer.”)

CLL consumed much of Kurt’s attention in the years I knew him. The old days of fast living were long gone; the fire in San Diego was a metaphor for the change in his life, for he had lost all his movie and TV stills and other memorabilia when his house burned down. Kurt seldom talked about the past, although he did once recall with some satisfaction playing strip poker with Farrah Fawcett during a break in shooting an episode of Charlie’s Angels.

The change in his life did not alter Kurt’s generous ways, however. He insisted on treating me and Marilyn to dinner in absentia when we went to UC San Diego to see Dr. Januario Castro last May. I declined, saying I appreciated the thought, but that I’d rather he save it for when we finally got to Sacramento to see him. A month later, when we set out to see Dr. John Byrd at Ohio State, Kurt again offered to buy us dinner. This time I felt it would be rude to refuse. Kurt liked to buy dinners for people, he explained, even if he could not attend. He had recently spent lavishly on a night out for a group of oncologists and their guests. And so we accepted a monetary gift, which was large enough to buy us a couple of nice meals.

We toasted Kurt then and I toast him today: Here’s to a kind-hearted man who approached his disease with determination and good humor, who reached out to others, and who touched many lives in the process.

We will not dine together here, but if there is a There there, Kurt, save a seat for me.

What a little Byrdie tells us

Dr. John Byrd, the CLL expert from Ohio State University in Columbus, had some interesting things to say in a recent telephone interview with the Leukemia and Lymphoma Society.

Byrd is one of my favorite CLL researchers because I think he calls it as he sees it and has good instincts about when and how to treat the disease. I say this not only as a patient who listens to his telephone and workshop comments, but also as someone who drove from Arizona to Ohio to see him for a second opinion and who knows several people who are patients of his.

Byrd, like another favorite of mine, Dr. Terry Hamblin, is a treatment conservative. Neither man seems to get caught up in the enthusiasm that prevails in places, namely MD Anderson, where some patients are led to believe that chemotherapy will cure their disease. (I am all for hope, but hope truly grounded in reality; speculative hope is an unkind cut to patients desperately seeking a way out of this box.)

Both Byrd and Hamblin are tethered to Earth by the logic of science, and in the reality of what CLL is, which means knowing how much progress we’ve made, but also knowing how much we don’t know. As Byrd told me, CLL is “a long journey.” It is for patients, and also for those who are working on ways to control and even cure it.

I recently caught up with Byrd’s June comments, which are in the form of a telephone education program called Current Progress in CLL Therapy and Clinical Trials. (There is now so much information available about chronic lymphocytic leukemia on the internet that one can start to suffer from chronic information overload. I am forever backed up in my reading.)

Byrd said some things that I found notable, and which show how thinking is changing and evolving. Reading the full transcript is well worth your while, but I have pulled out some of what I consider to be the highlights, including a surprise or two, here.

Bye-bye BMB (and CT)

The first thing that caught my eye is that the dreaded bone marrow biopsy, bane of many a patient, may be a thing of the past. Like many of you, I was given one, or subjected to one, or allowed to have the experience of coping with one, as a routine matter after diagnosis in 2003.

“We’re fortunate in that a variety of new molecular tests have come forward that really trump any advantage to the bone marrow biopsy showing useful information,” Byrd says.“ For most patients who come to see me initially with CLL, unless they have low blood counts or another reason that I would do the bone marrow biopsy, say I suspect an infection, generally we do not do a bone marrow biopsy at Ohio State. Most of the other CLL centers are moving towards this. Actually, the new NCI guidelines that will be coming forward likely within the next year or two are not going to advocate doing a bone marrow at diagnosis unless there’s another question to answer.”

I was also given a CT scan, and was threatened with having a CT scan monthly until I agreed to my first hem/onc’s demand that I undergo single-agent fludarabine. Hmm, monthly CT scans or finding a new doctor -- what to do, what to do . . . it was an easy choice. But I still know a lot of patients whose doctors insist on using the CT scan as a tool for routine tracking of the disease. Not Dr. Byrd:

“There may be an advantage in the future for CT scans in predicting how CLL is going to behave, but right now that’s really not established and it’s not a recommended test,” he said.

Prognostic tests and treatment time frames

How do you know how your CLL will behave? Byrd gave an overview of the prognostic tests he recommends, those things that trump the BMB, including FISH and IgVH mutational status. Much of this should be familiar to patients by now (see my sidebar at the right of this page, CLL Prognostics and Planning.)

What Byrd added of note, I thought, was an indication of the time frame that accompanies these test results. If your FISH test shows a 17p or 11q deletion, Byrd says “there is a 50% chance that at one year you’ll go on to require therapy. There is a very good chance that by three to five years virtually all the patients in that group will have to go on to therapy.”

As to IgVH mutational status, Byrd points out: “IgVH-unmutated CLL patients all eventually require therapy and the halfway point, where 50% of patients go on to therapy of 100, is about three years.”

So, as you can see, knowing those two pieces of information can give you an excellent idea of if and when you may need treatment. Unless you prefer the life of the ostrich, there is no excuse for not getting these tests done. (I should add here that Byrd finds value in the ZAP-70 test but cautions that it is “very unreliable” when done at commercial labs. My own experience, in which Quest Diagnostics had me as both positive and negative, bears this out.)

In summing up, Byrd says, “There are three things we do when we see somebody at Ohio State initially for their CLL to predict how their disease could behave in addition to an exam: clinical staging, looking at the red cells and the platelet counts; the interphase cytogenetics, or FISH; and the immunoglobulin gene mutational status. That helps pick patients whose disease is going to behave in a more aggressive manner versus a less aggressive manner.”

When to start treatment

Byrd gives an excellent rundown on the question of when to treat, including whether early intervention might be warranted in aggressive cases, as well as some of the complications that can accompany progressing disease. This alone is worth your reading the full transcript, but I will mention one highlight here.

As to the timing of treatment, he says (italics mine):

“Often patients are asymptomatic when they’re treated. They have big lymph nodes or lymph nodes that are increasing, but they’re not bothering the patient. Their white count is going up, but they don’t have any other symptoms of the disease. And therapy is recommended too early. I make that point because if you’re not having any symptoms from the CLL and you start treatment, treatment is likely going to make you symptomatic. We tend to be very conservative when we start treatment.”

A man after my own heart -- for the longer I deal with CLL, the more I think there is wisdom in the words of the American commander William Prescott, who said at the Battle of Bunker Hill (with apologies to my British friends): Don’t fire until you see the whites of their eyes.

Single-agent Rituxan v. fludarabine

I have been milking the single-agent Rituxan cow for nearly four years, to the point that it can barely moo anymore. One of the listeners asked Byrd about Rituxan maintenance, which I know a good deal about from experience. Here is his response:

“Unfortunately, there has not been a randomized study of maintenance rituximab in CLL after reduction of the CLL with chemotherapy. There is a study that I understand is going to be starting in Eastern Europe to look at this. The only data that exists for rituximab being given repetitively over a long period of time is a study that was done by Dr. Haynesworth (sic) in Tennessee. That study showed that giving four weekly doses of rituximab every six months for a period of two years resulted in a remission similar to that achieved by fludarabine.

“So my take on rituximab maintenance by itself for CLL is that it may add a little bit, but probably the biggest advantage for treating CLL is going to be giving rituximab in combination with other therapies. As a single agent it’s about as good as fludarabine as a single agent.”

Ahem. Did you notice that last comment? As a single agent, Rituxan is “about as good” as fludarabine?

Now there may be some who, in terms of the statistics about CRs and PRs and the like, will take issue with that statement. But I think Byrd is talking about the effect on balance, over time, on a person’s CLL as part of that long journey.

I wish I could bring this comment to my long-fired first hem/onc, Dr. Lippencot, who refused to hear the word “Rituxan” and who insisted on fludarabine, fludarabine, and more fludarabine. But if any of you are still out there, visiting local hem/oncs who have been hiding under a rock and who insist that you be treated with single-agent fludarabine, take notice: In the opinion of one of the world’s leading experts, it is no better than single-agent Rituxan.

Byrd says, as do all the experts and accurately so, that Rituxan works better in combination therapy than alone. Byrd also makes the point in his interview that your first treatment choice is your most important because it can give you the longest remission. Does this mean you should always go with the therapy that gives you the biggest bang?

That would be an interesting question to ask the doctor the next time he does an interview.

Personally, I think it depends on the type of CLL you have and how it is presenting itself. Your case may merit one of the combination therapies such as RF or RFC. But perhaps a gentler hand will suffice, and in those cases there is no reason not to consider using Rituxan alone, maybe with a pulse of steroids to reduce nodes: the question in CLL is not always what works best, but what, tailored to your situation, will work well enough while preserving options for the future. It was none other than Dr. Byrd who counseled me to save RFC for transplant preparation. CLL is a long journey, remember.

The '08 presidential contenders

Nothing brings the readers of this blog together like politics -- every time I write about it I transport some of you into a warm, fuzzy world of smiling dolphins, hopping bunnies, fluttering butterflies, and candy-scented breezes. NOT. But what the hey, it’s been on my mind lately, so I have decided to comment on how the 2008 race for president is shaping up.

Readers who may have missed the fact should know at the outset that I am a lifelong Democrat, a liberal with libertarian leanings, and that I think George W. Bush is the worst president since James Buchanan, who let the nation slide into Civil War. I saw a bumper sticker the other day that read “I never thought I’d miss Nixon” and realized how sad but true it is

I do not think the GOP has always been the rudderless pastiche of business interests, religious zealots, fearmongers, neo-conservative ideologues, and opportunists that it is today. Lincoln was perhaps our greatest president, Teddy Roosevelt was a credit to the nation, Ike was a decent man. Nixon, by comparison to Dubya, was at least smart and based his foreign policy on reality rather than fantasy. Reagan could talk in complete sentences, even if I thought many of his policies were misguided. Bush’s father was actually a halfway decent president, handling the end of the Cold War with aplomb and responding appropriately to Iraq’s invasion of Kuwait. I supported that Gulf War; I have never supported the disaster that Junior has unleashed, which is now the central focus of the 2008 campaign.

All this is apropos of the fact that when I look at the candidates, I try to look as an American as well as a Democrat, to figure out who actually might have the mettle to do the job in these difficult times. So far, I am surprising myself in how my thinking is evolving.

The Democrats

Before the Dems began their debates a few months ago, I was basically in the anybody-but-Hillary camp. I saw electoral disaster written all over her, and I was not fond of her support for the Iraq war resolution. She was about my fourth or fifth choice for a nominee, and I was looking more seriously at some others: Barack Obama, whose spidey sense about the war jibed with mine from the start and who is indeed a new, fresh face in a country tired of the same-old same-old; John Edwards, who seems to have learned from his Iraq mistake, who is addressing health care in big way, and who has the potential to run well in regions like the South where Democrats have had trouble; Bill Richardson, who brings a great resume to the job and who as governor of New Mexico might help my party make dents in the Mountain West, a traditionally Republican region that is making its way leftward in fits and starts.

Then I saw the debates, all three so far. And I realized that the one thing I want in a president is an adult, someone who does not need on-the-job training. We are still suffering through George W. Bush’s on-the-job training and look at the disasters it has wrought. Now, admittedly, most presidents are faster learners than Bush -- no, he's not smarter than a fifth-grader, to borrow from the title of the popular TV game show -- so I am willing to forgo a little experience if a candidate seems to have the right sense of judgment, depth, and wisdom.

Looking at the field, I see two good presidents: Hillary Clinton and Joe Biden. Clinton has distinguished herself mightily in the debates, scoring points for concise and sensible answers, for her bearing, and for her skill in taking advantage of her opponents’ mistakes. Her performance has erased any doubts I had that she could stand up there on a stage and best whomever the Republicans nominate, and I can also see her in a room being tough and smart and commanding when meeting with foreign leaders.

Joe Biden was a surprise to me; direct and to the point, experienced, with a plan for a political solution in Iraq. Alas, he has neither the money nor the following to get nominated.

Obama has been, on balance, a disappointment. He has “good bones” to use a real estate term, but like a house with great potential he needs work. The recent flap over “Would he meet with foreign leaders?” like the presidents of Iran, North Korea, and Cuba shows his inexperience. Hillary is right; a president keeps her cards close to her vest, lets underlings do the groundwork. Then Obama made things worse by announcing that he’d send troops into Pakistan, if need be, even without the permission of the government there. Now, we may have a secret plan to do just that, and if a president were to strike when the iron was hot to get Bin Laden there would be few complaints. But, again, presidents must hold their cards close; sometimes it is best not to telegraph such intentions, which risk destabilizing an important but shaky ally, just to prove you can be a tough guy. This is all rookie stuff, and it puts me off.

Edwards has great hair. Once again the media and the pundits are focusing on the inconsequential when there are real issues to be had. I have always sort of liked Edwards (though I voted for Howard Dean in 2004) and I have always sort of felt uncomfortable with him. Anyone running for president is ambitious, but I have always detected more ambition than depth in Edwards. Nonetheless, he is hitting the right points on many issues such as health care and the corporate influence in Washington and I have not ruled him out. He has the potential to run well across the board and we Democrats should never keep “electability” far from our minds.

Richardson has been the biggest disappointment. His debate performances have been lackluster and tongue-tied. His answer to health care is “more preventive medicine,” which is not exactly what I am looking for when it comes to access to insurance, insurance for those with pre-existing conditions such as CLL, and the like. He just doesn’t seem to have the bearing and quick thinking that would get him through a presidential campaign. (Now, vice president, that’s another story . . .)

There are the others: Chris Dodd, who is almost a caricature of a senator, Dennis Kucinich, who says many things that appeal to me viscerally but who looks like an elf and could never be nominated or elected; and crazy Grampa Mike Gravel, who reminds me of Dana Carvey’s Saturday Night Live character “the Grumpy Old Man.” But it’s great to have him there, on the end of the stage, keeping them honest and lobbing politically incorrect bon mots.

Finally, there’s Al Gore, my hands-down favorite and the man whom I truly believe was elected president in 2000. I wish he would run but he won’t. I have always sensed that Gore was in search of his soul -- and now, with his global warming crusade, he seems to have found it. His mission is important, and I hope he wins that Nobel Prize, and I still shed a tear for my country that a 5-4 vote of the US Supreme Court blocked a recount that would have probably led to a different, better path for us all.

The Republicans

Ah, what a great time to be a Democrat. The Republicans have a crop of flawed candidates and are about to sink the only one who might actually stand a chance next year.

I used to be afraid of Rudy Giuliani as a nominee. There was the thought that he’d run well in Democratic areas such as New Jersey and Pennsylvania. But the more I see and hear his rather shrill and grating personality, the more that comes out about the backstory to 9/11, the more we see of his family relationships, the more I think he will start to sink like a rock at some point in the general election. Bring him on, GOP. As one commentator said, he’s like Bush on steroids. People are tired of Bush, and they’re tired of people who think the only way to get elected is to use fear of terrorism as a mantra. The man has no national experience, and he’ll turn off large numbers of conservative Christians. Go Rudy! Go Rudy!

Mitt Romney is pretty good on his feet in a debate but he suffers from a couple of problems. One is that he’s said a lot of liberal things in the past that make him look all the more opportunistic now that he’d trying to appear conservative. The other is his bearing, which is, how shall I put it, rather John Kerry-esque. There’s an elitist sense about him and it won’t play all that well in the heartland. Unfortunately, his religion -- Mormonism -- makes some people uncomfortable. From a cynical political point of view, this is an advantage for the Democrats, but as a country I hope we have gotten beyond irrational prejudice in our deliberations. Like Obama's race, Clinton's sex, and Richardson's ethnicity, Romney's religion should make no difference to our vote.

Fred Thompson is the great unknown, at least to me. I don’t know how well he’ll come across, and whether he’ll be able to build a coalition beyond the GOP. I do get the sense that there’s nothing exceptional or extraordinary about him, and I don’t really see him capturing the national imagination. He is probably more of a placeholder than a force, and can probably not muster a groundswell of support or affection as Reagan did.

Which brings us to the last of the major contenders, John McCain, my home state senator. I kind of like McCain. I don’t agree with him on enough things to actually vote for him, but I appreciate his independence of mind, his sense of humor, and what I see as a genuine desire to do right, to be a good public servant. History often turns on “what-ifs” and I wonder how things might have been different today had McCain, not Bush, been nominated in 2000. John McCain could have been, and probably would be, a capable president.

Alas, we are where we are, and McCain suffers from his own dedication to the truth as he sees it. Americans complain that they don’t like to be pandered to, but when candidates takes unpopular positions they go unrewarded. McCain’s enthusiasm for the war is something I regard as misguided but it is at least genuine; his support for the failed immigration reform package sealed his fate with those in the party who see no room for dealing with the realpolitik of the situation. McCain, who was a prisoner of war, is also is the only Republican candidate willing to take a strong stand against the abuse of detainees (and how sad is that, here in the land of habeus corpus). This is to his credit, and McCain would still play pretty well in a general election. But his odds of making it that far are getting slimmer and slimmer.

The spouse in the White House

The GOP has a tough road next year regardless, but it lacks an inspirational figure who can unite the party, let alone the country. As much as Hillary might be hard to take for some people -- and I think for some, a strong woman of any stripe is off-putting -- she is likely to grow on people with time. Nobody doubts that she’s tough, or that she’s smart, and those are qualities we want in a president.

There is always talk of presidential spouses and how they help or hurt; Michelle Obama stands out in a positive way, as does Elizabeth Edwards. Bill Clinton stands out most of all; ever popular in the heartland of the country, he will be of immeasurable help in making Hillary a more accessible personality to those who may be a little unsure about her.

I vote on February 5, which is becoming known as Super-Duper Tueday, the day when something like 20 states vote. I figure by then the Democratic race will be down to Hillary v. Obama or Hillary v. Edwards. Much to my amazement, I am leaning toward Hillary. I have a feeling that come November 2008, a lot of other people will be surprising themselves, too.