20/20 interview delayed

A few hours before tonight's 20/20 segment on Bernard Madoff was to air, I received a call from the producer and was told that my interview had been cut for time reasons, although they do plan to use it in a future broadcast. (Apparently there's a whole section they had to cut out, plus Diane Sawyer was given more time for an update on another story.) I'll hear more from the producer next week. So stay tuned -- I'll post an update here when I know with greater certainty when the interview might be aired.

As to the segment itself: It was predictably heavy on the sexy (as they say in the news biz) Palm Beach rich-who-got-burned angle and the celebrities-who-lost-a-lot (Zsa Zsa Gabor, Kevin Bacon) angle. And let's face it, Donald Trump is always going to get more air time than me.

My family's connection goes back to Madoff's early years and 20/20 didn't have time to get into how he got his start, how his father-in-law Sol Alpern (our hotel guest) got us involved in it, and so on. That really is another story for another time.

But part of that story is that many Madoff investors were not rich or famous. My father is a retired high school teacher, for example. My stepmom made money in the real estate boom in her neighborhood during the 1980s, buying and selling a couple of properties. Our family and the guests at the hotel who had Madoff accounts were, by and large, middle class to upper middle class people. Most people I know who lost money lost in the tens or hundreds of thousands, not in the millions. That element of the story deserves to be told, including, I hope, the way it impacts the life of your average chronic lymphocytic leukemia patient who doesn't have a Picasso to sell to make ends meet.

The report featured footage of Bernie sitting at his computer in his penthouse, presumably whiling away his hours of house arrest on the internet. One wonders if he is trying to scam those infamous Nigerian scammers.

I do appreciate the fact that 20/20 was willing to raise direct questions about who else might have been involved, who might have known that this was all a Ponzi scheme. Madoff's wife Ruth (my stepmom's classmate) and his sons and brother all received a mention. As someone who has been part of running a family business, it always made me feel more secure that Madoff had brought his family into the operation. But then again, come to think of it, people in the Mafia have families, too.

I'll be on ABC's 20/20 this Friday

I was interviewed this week by ABC News correspondent Brian Ross for a special two-part investigation into Bernie Madoff, the man behind the $50 billion Ponzi scheme. The first part will air this Friday on ABC's 20/20.

Readers of CLL Diary are already familiar with my family’s longstanding acquaintance with Madoff and his wife Ruth. A producer at 20/20 read my post Bernie Madoff screws leukemia patient and one thing led to another. The post goes rather heavily into the leukemia angle, and that is part of the interview as well. I discuss how my losses in Madoff and my family’s losses impact my health care, including a possible stem cell transplant. I also talk about the perspective that my CLL diagnosis has given me on life, which affects how I feel about the Madoff mess.

Part of my motivation for doing the interview was as a patient advocate -- to get CLL into the national media, however briefly or obliquely (and also to be living proof that you can be a younger person with the disease). If people find my blog through the story -- perhaps patients and caregivers who are not familiar with the online resources available -- then they will also find the useful links I have selected on the right side of the blog page.

The producers offered to fly me and Marilyn to New York City for the interview but it was on too short notice, so ABC sent a film crew here to Sedona. Besides me sitting in a chair talking to Ross via satellite, they also took some atmospheric shots -- me looking over old Madoff statements, me standing on my deck looking at the red rocks, and me walking across Highway 89A, which is the main four-lane road through town. It's a bit odd walking for the camera -- I was reminded of Monty Python's Ministry of Silly Walks as I tried to nonchalantly navigate my way down the street. I was also thinking about Miss America starting down the runway and tried not to walk like that.

I don’t know yet what will end up on the cutting room floor, or how the story will be handled -- I am a very minor part of the report, but perhaps a human face on the scandal. I do feel that the producers and Ross are dedicated to doing a proper, investigative job when it comes to digging into the Madoff affair, and that is long overdue.

Another transplant twist, in which I learn my chances of getting a good donor match

Many months after my visit to the NCI/NIH to discuss a stem cell transplant trial, I received a call from the clinical nurse in charge of finding donors for trial participants. In the 15 or so minutes we talked, Jennifer Wilder could not have been more helpful.

While I was rejected for the trial, one of the benefits of applying for it was that I was able to get a much better handle on my donor match situation. Before the trial, all I had to go on was a preliminary search of the National Marrow Donor Program (NMDP) database, which indicated there were 22 potential 6/6 matches at low resolution on the microscope.

That’s like looking through Mr. Magoo glasses and saying there are objects in the sky twinkling at night without knowing which are stars, which are planets, and which are airplanes passing by.

For their part, the NIH needed to do enough searching at high resolution to see what the prospect of a 10/10 matched unrelated donor would be, as that level of match is required for participation in the trial. It is also generally accepted as the desirable standard at all transplant centers. Their effort would have cost me thousands of dollars had I been paying for it out of pocket.

* * *

More on the results in a minute, but first a little background:

The bottom line when it comes to adult stem cell transplants is what sort of match you can get, and not all matches are created equal.

Sibling matches, for example, can mean less Graft vs. Host Disease (GVHD), which is what can happen when your new immune system comes into contact with your old one. But this also tends to mean less Graft vs. Leukemia effect (GVL), in which the new immune system takes on the CLL cells. Engraftment is harder since the CLL cells stick around, and relapse is more likely. Statistics show that if you are rolling the dice on a cure, your brother’s or sister’s stem cells are not the best way to go.

Matched unrelated donors are preferred -- those wonderful people who volunteer to help others in need. You’d think that out of some six billion people on earth there would be more than 10 million such donors, but those who need transplants are small in number and the need for donors does not get much publicity. (That prospective donors are often charged a small fee for testing does not help; one wonders what would happen if people were paid a small fee to agree to enlist, but that is another post for another day.)

A 10/10 match -- or better -- means the stage is set for a pretty good chance of engraftment and possibly cure. At the low end, Dr. Steven Pavletic of the NCI told me, an 8/8 match is acceptable. But it’s not desirable, and it’s something I would think twice about if it were all I could muster.

Then there’s the cord blood transplant, in which the rules change a bit: The level of match is not as important since the stem cells are pretty much unformed and adaptable to your system. Double cord blood transplants are a new thing, performed in adults at only a few centers. Dr. Paveltic described them as being riskier than unrelated, which indeed appears to be the consensus as of now.

A word is in order here about the mysteries of HLA -- Human Leukocyte Antigen -- typing, the complexities of which have caused smoke to come out of my ears as well as several other orifices on more than one occasion. For those of you who want to focus on the locus, the following are some links that provide further information, one from Wikipedia, one from CLL Topics and two from the NMDP, the first one for patients, the second one for professionals. (And aren’t we patients professional researchers at this point?)

* * *

Despite the statistics on CLL outcomes, the reflexive procedure at transplant centers seems to be to look for a sibling match first and then to look for an unrelated donor if that fails. I’ve got two brothers and a sister but each of them is a half-sibling. All are willing to donate their stem cells to my cause, none of which would be helpful. So thank you Rick, Dan, and Julie, but a sibling match is out.

Wilder told me that they found 15 6/6 unrelated matches at high resolution, looking at loci A, B, C, DRB1, DRB3, and DQB1. Two potential matches “would probably fall off for ethnic or other reasons," leaving me with a pool of 13.

(Ethnicity is important in all this, and I am a bit of an odd combination. My paternal grandparents were Russian Jews, who escaped the rule of Tsar Nicholas II and came to America shortly before the Russian Revolution. My mother was adopted, which I only learned following her death in 1977; after much searching, I narrowed her birthplace to the Irish immigrant community around Crown Point, New York. So I am something of an Irish Jew, evidently, which explains my demented sense of humor but which also puts me in a distinct ethnic minority.)

Of those 13 potential matches, they had additional data on four -- enough to get close to determining a 10/10 match. Of those, there is a 50% chance of one perfect match, Wilder said. The other three would be about a 10% chance of a 10/10 match. What lurks in the “mystery nine" would have to be determined through further testing.

Beyond this, there were 10 mismatched donors, probably only one of which might be as high as a 9/10 match.

Wilder said the odds of a successful transplant with a 9/10 match are “fairly decent.” The rule of thumb is that for every mismatch, successful outcomes drop by 9%.

A mismatch of one number at a locus is called an allele mismatch, she said, which is what I appear to have in three places when compared to the usual results for Caucasians. A mismatch of both numbers is called an antigen mismatch. Wilder said that an allele mismatch is not as bad as an antigen mismatch (fun reading here.)

“Do some mismatches matter more than others?” I asked.

The consensus is “yes,” Wilder said, but nobody agrees on what they are. For example, studies suggest that a mismatch at locus A-0205 is important but these studies are from Japan and could be important only within the confines of the Japanese ethnic group.

I have three “less common alleles,” she said, which means “a less common combination of numbers.” But she described my alleles as “nothing that’s all that rare.”

Obviously they’re rare enough to turn finding a 10/10 match into a bit of work.

One of my uncommon alleles is that A-0205. If you HLA-type 100 Caucasians, most will have 0201. Another uncommon allele that I have is at locus DRB1; I have 1305, and most would be 1302. Each of these counts as a mismatch. So a mismatch on the A-0205 alone means a 9/10 match, a mismatch on both the above means 8/10, etc. Transplanters do have an order of preference for where the mismatches are, but I didn’t get into the details.

Wilder said the bottom line for me is that with continued searching and typing of more donors, I would have a pretty good chance of finding a 10/10 match, with the prospect of a 9/10 in the background.

She searched databases worldwide. Wilder noted that people do join databases and a search in another year or two could “pop up some perfect matches.”

Which was polite of her to say, but my one perfect match, if there is one, could also get hit by a truck.

* * *

I have a case of CLL in which nothing is easy. I don’t have indolent disease. I don’t have horribly aggressive disease. I have progressing disease with fairly mild clinical symptoms, if you discount episodes of hemolysis due to AIHA, which isn't exactly easy to do. But my marrow is still pretty healthy, I don't have B symptoms such as fatigue and night sweats, and I am not prone to frequent or severe infections.

Alas, I have three out of four poor biological markers -- IgVH mutational status, ZAP-70 and FISH are all bad; CD38 remains good.

December's FISH test showed no new deletions beyond the 11q, and my 11q deletion appears to be stable when compared to results from 2007 -- the deletion shows up on just over half of cells tested. It also appears that I still have some ATM (programmed cell death) functionality. ATM is located on the long arm of chromosome 11, hence the tag of 11q. (It is not present on the short or “p” arm of the chromosome.) Monoallele deletion -- which is what I have -- means the relevant bit is broken off of the long arm of one of the set of two chromosomes #11. Biallele deletion means that both of the chromosomes 11 have lost the ATM gene. It stands to reason, and appears to be born out clinically, that the monoallele deletion is the half a loaf that is better than none; how long it will stay that day, given the vagaries of clonal evolution, is anyone's guess.

The downside of my 11q is that I also have extensive abdominal lymph nodes, as my CT scan of last month made clear. They're not impinging on anything important, but they have grown into a 13 cm by 15.5 cm mass, helping driving the disease, and a mass of that size is an indicator for treatment, according to the NCI guidelines.

I know where all this eventually leads -- transplant or die -- but it is not a pell mell rush, and so there is a little wiggle room along the way in terms of the what and when of treatment.

And what I learned from Wilder is that I’m not on Easy Street when it comes to finding a 10/10 donor, either. Still, she made it clear that there's a realistic chance. So let’s hope the one or maybe two or three people in the world’s donor databases who qualify enjoy quiet evenings at home with their air purifiers and heart-healthy diets.

Is this a slim reed on which to plan a long-term strategy?

The way I see it, the alternatives do not change because of the donor match situation. Basically, I can ride along doing chemo until nothing works on me anymore and I earn my scarlet “S” for “Salvage patient,” at which point I can make my peace with the world and go out gracefully.

Or I can go for a transplant at the best level of match I can get, even if it is not ideal: 9/10 perhaps, or cord blood, or maybe that 10/10 after all.

There is an anonymous quote I ran across that sums up my opinion: “There are always two choices. Two paths to take. One is easy. And its only reward is that it's easy.”

Dragging out the chemo is the “easy” choice here, but in a way it is also the hardest. It is a personal statement that “I accept that CLL will shorten my life, and that I will live three, five, maybe eight more years.”

Making the “hard” choice to go for transplant is saying, “I know there is a reasonable chance that I could be cured of CLL and I am willing to accept the risk of getting killed in the process, or living with inconvenience afterward, in order to have a longer life.”

In my humble opinion, and it is only that, so long as transplant is a viable alternative with a reasonable chance of success, the “easy way out” is akin to writing a suicide note.

* * *

But knowing that finding a perfect match will be a bit dicey does make me wonder about the advisability of jumping sooner rather than later. In making this decision, I am juggling a lot of balls in the air, or twirling a lot of plates on sticks, or tap dancing on the backs of several hungry alligators -- pick your metaphor.

As Dr. Pavletic told me, people don’t get healthier with age. I have no comorbidities (other cancers or diseases) that might reduce my chances of success. My heart and lung function are good. I am still chemosensitive, so my chances of getting a CR, or close, are decent, though hardly guaranteed. There will never be a better time than now, Pavletic said. As a reminder, he estimated that I have a 70% chance of a cure or long-term remission, perhaps a 15-20% chance of death, based on a 10/10 match. This tracks with everything I have heard for a patient in my situation.

Then again, despite my CLL and AIHA, I am enjoying pretty good quality of life. I’m 52. I can wait until I’m 55 or even a bit older before taking the leap. This guarantees me a few more years, time to enjoy life before risking that life. What I risk in waiting is the arrival of a comorbidity, watching the disease grow more stubborn and resistant to therapy, things that might ultimately reduce my chances of transplant success. What I gain in waiting is knowing that, barring a flying anvil with my name on it, I will probably be alive in three years. I am not risking a one in five chance of death.

This is a tough one. Push is starting to come to shove. Your thoughts are welcome.

Dopey, dopey, dopey

Reading CLL discussion groups, and reading between the lines in those discussion groups, I am very much aware that some people deal with the stress of leukemia by taking drugs. And by drugs I mean alcohol and prescription antidepressants as well as illegal substances such as marijuana.

What is causing me to write about this is the tempest-in-a-bong over Olympic champion Michael Phelps. The 23-year-old swimmer was photographed smoking pot; from the overreaction of some people, you’d think he had been caught strangling mermaids with one of those ribboned gold medals.

Well, give me, and Michael Phelps, a break.

Somehow the United States managed to come into existence and prosper for its first 150 years without any restrictions on what you could put into your body. Alcohol, pot, laudanum, opium, cocaine, magic mushrooms, you name it -- all were there and ready for the taking as this country built itself into something ever more prosperous and successful.

But American respect for individual liberty has always had a counterbalance: our Puritan heritage, which entered the 20th century in the form of the temperance movement that brought us the Prohibition of alcohol.

Big success that was, of course. Since then we’ve been on a bender Prohibiting just about everything else, and that hasn’t been working, either. Our last three presidents all used illegal drugs in their youth. Our drug laws are a joke, which is hardly funny because of the enormous waste of lives, money, and resources involved.

Within the past 15 years or so, medical marijuana has gained a foothold in some states. It’s obvious that anyone with a flimsy excuse -- I do believe painful bunions were once used -- can get a doctor to prescribe pot in California. At least when it comes to marijuana, the absurdity of Prohibition is starting to break down. Gone are the days, and they were real, when people were sentenced to years in jail for possessing a joint.

* * *

I’m not a druggy personality. I like the occasional glass of red wine, but I find that being fully awake and aware in the here and now is more trippy than living in a haze. I experimented with the usual stuff in high school and college, but it’s been 30 years since I’ve smoked pot.

The only drug that I ever truly liked was LSD, which I took a half-dozen times in college. Sometimes it was revelatory, sometimes merely enjoyable, sometimes a bit of both. I recall laying on my back in the organic garden at UC Santa Cruz, watching as passing clouds smiled at me. Another time I was listening to the music of Johann Sebastian Bach, which wove itself into something resembling a complex Persian carpet right before my eyes. Never once, despite hysterical media reports that indicated it might be a real danger, was I tempted to jump off a building to see if I could fly.

In life, the Darwin Awards apply, whether you’re on drugs or not. Some people can handle drugs and some can’t.

I think we’ve all seen what happens to friends and family when people can’t cope with them, or when they take undue risks to get high. A family that has always been quite close to ours lost its sensitive and talented middle child to some bad heroin one night in New York City; he was in his 30s. Another kid I knew and worked with many a summer led a life of drugs and dissolution, stealing from his own parents as an adult, until he managed to ruin his body to the point that it killed him.

And I know many more stories involving our legal drug. alcohol; I have seen it bring heartache and pain, emotional and physical, to people who could have and should have had happier and longer lives.

I also know people in their 70s who have smoked pot their entire lives and seem none the worse for wear. Just about everyone I was close to growing up has violated our Prohibition laws on multiple occasions and most of them are quite happy and successful today.

Which leads me back to my point: Our drug laws are dopey. They’re not respected and they don’t work.

People will do what people will do, whether they’re 23-year-old swimmers or 60-year-old cancer patients. Perhaps some day American society will be ready for an adult discussion of drugs -- why they should be legal (or at least managed more sensibly) and why you should make the choice to use them sparingly.

Until then, let’s drop the hypocrisy. Let’s zip the flimsy moral outrage. Drugs are everywhere. They always have been, they always will be, and in a free society Prohibition will always fail.