Saturday, May 13, 2006

Foggy San Diego, Part 2

Dr. Januario Castro is a soft-spoken man with a Spanish accent, the product of his Colombian roots. He appears to be in his early 30s, judging from his clear complexion and lack of worry lines. Castro’s white lab coat covered much of his medium frame, stethoscope slung about his shoulders, as he shook hands with us and got down to business.

“Our time today is going to be precious and I hope we can accomplish a lot of things,” he said. During the next hour we were to learn that the doctor is both personable and focused on the task at hand.

As you know from my last blog entry, Marilyn and I went to UCSD’s Moores Cancer Center in search of some answers and options about my CLL. Castro is an assistant clinical professor in the Blood and Marrow Transplantation Division there, which could be a plus down the road if I ever need to take the transplant step. He completed his hematology/oncology fellowship at UCSD, and is board certified in internal medicine and in hematology and oncology. The CLL Research Consortium lists his research interests as “immunotherapy, gene therapy and mechanism of apoptosis applied to CLL.” Basically, he’s devoting his career to the cause.

My main interest, of course, was finding out what Castro thought of my case, and of options for treatment. I brought along a tape recorder, which Castro welcomed, as he doesn’t like patients to focus on scribbling notes at the expense of the conversation. It is his practice to send patients a three-to-four-page dictated synopsis of the visit, so a tape recorder is not essential. But I know from my experience as a newspaper reporter that a recording will be more detailed than notes, and I would recommend recording any important visit with a doctor.

Castro is a second-opinion visit, paid for out of pocket. While at UCSD, I learned that return visits, lab work, and even chemotherapy come with a 30% discount for those in the dreaded self-paying category. I am self-paying here because my insurance is limited to Arizona. It won’t pay out of state without going through the appeals process, and I am likely to get approval only if the insurance company saves money over treatment I would otherwise have had in state. In short, that means they might pay for the ancillary expenses associated with a clinical trial, where the drugs are provided free, but they will not pay for routine treatment outside the sainted borders of the Grand Canyon State. Insurance issues are a headache I can do without, but my experience is not uncommon, and it is a factor in the "where," and maybe even "what," of my treatment.

Case history: nuclear, er nucleus, explosions

The first thing Dr. Castro asked me to do was explain the history of my disease in my own words. Sometimes doctor’s reports are not accurate or thorough, he said, and “you have lived the history of your disease.”

And so, I recounted very briefly what I have explained in detail in this blog, including my diagnosis and subsequent treatments with single-agent Rituxan.

Dr. Castro asked about anemia, low platelets, white blood cell count at diagnosis, symptoms such as night sweats and fevers, and whether I had had any CT scans. He also wanted a detailed recounting of my Rituxan dosages and numbers of infusions.

I had made his job a little easier by preparing a cover letter and some cheat sheets that I included with the medical records I obtained from my local oncologist. The letter explained what I hoped to accomplish with my visit, as well as my reservations about some treatments and interest in others. The cheat sheets came in two parts: The first was a single-page recounting of the results of my prognostic testing. The second was a detailed three-page chart of all my bloodwork since diagnosis, as well as treatment history.

“You have the best summary that I have ever seen,” he said, and I imagine it saved us some time. As he said, time is precious, and I could have used another half-hour on top of the hour I had.

In reviewing my case, Dr. Castro did ask an interesting question about my background: “In your life, have you had any exposure to chemicals, organic solvents, or radiation?”

There has been speculation about the various causes of CLL, and it is interesting to note that researchers are trying to put their fingers on some commonalities. Anyone who has been around the CLL Internetwork has run across stories of Vietnam vets suffering from Agent Orange or workers exposed to benzene or factory chemicals so thick that they formed a haze in the air.

The only thing that may be relevant in my case is the events of July 1962, when I was almost six years old and living along the Colorado River near Parker, Arizona. At that time there was a nuclear bomb test in Nevada, not too far away as the crow flies, and a large swath of the region has since been declared by the federal government to have been potentially affected by fallout. Some “downwinders” in these areas have come down with leukemias and other cancers. The county I was living in was not designated as being at risk for this, but it was adjacent to a county that was. The government has also specifically excluded CLL as being a potential outcome of exposure to fallout, but how many times has the government been wrong about how many things? And does the wind always follow the county line?

Given that it happened when I was young, one would think that I might have developed symptoms sooner had I been exposed, and attributing my CLL to this is highly speculative at best. That is not to say that it couldn't have had something to do with it, or that I couldn’t have picked up a bit of a problem somewhere along the line that my body held in check for years -- before, fatefully, turning its back on the cancer. Some three percent of adults are believed to have CLL cells, but only a few have CLL. The body produces cancer cells daily and the body usually destroys them. When it slips up, shit happens.

During my childhood I also had a severe case of infectious mononucleosis, in which the Epstein-Barr virus invades B cells, and which can be a risk factor for some lymphoproliferative diseases, though not, it appears, CLL. I caught it after having had Thanksgiving dinner at a neighbor’s house. The neighbor was the black sheep of a famous New York publishing family, exiled to teaching second grade in the middle of nowhere. Aside from handing out mono, she was also blissfully ignorant of the rattlesnakes that wandered around the school yard. “If you think it’s a pretty stick,” my mother would warn her, “don’t try to pick it up.”

My mono experience, as well as childhood chicken pox, means that I have some viruses tucked away in my system -- including the Epstein-Barr virus, obviously — and these are waiting to be reactivated by immunosuppressive treatment. Viruses are another theory behind CLL, the idea being that CLL can be an overreaction to the (over)presentation of an antigen. And if that’s the case, who knows what antigen, or when it started.

Dr. Castro jumped to the present day and asked how I felt. Any fevers, night sweats, weight loss? None of the first two and, alas, none of the latter.

How much am I bid for this ZAP-70 test?

The two things that most seemed to intrigue the doctor about me were my discordant ZAP-70 results and the fact that Marilyn and I make a living as eBay powersellers.

There must be something about doctors and eBay, because I once had a primary care physician whose intensity of interest in eBay was not unlike that of a cat following a shiny, moving object. Marilyn’s gynecologist recently spent three-quarters of an appointment discussing the ins-and-outs of eBay, openly wondering about chucking her practice and entering the glamorous world of sitting at home in front of the computer in her underwear. We explained to Dr. Castro a bit about what we sold, the fees we pay eBay, how we interact with customers, field their special requests, and so on.

“eBay is powerful,” he said at one point. The doctor also used it as a metaphor when discussing my ZAP-70 results. Readers will recall from Part 1 that I have had three ZAP-70 tests through Quest Diagnostics, the first two coming out positive and the most recent one negative. Quest is a reputable outfit, headed by Dr. Maher Albitar, formerly chief of testing at MD Anderson.

Castro addressed the issue as part of his general discussion of where things stand in the world of CLL, which he called “CLL 101”:

“It’s getting more recognized that this is a disease where we need to pay more attention,” he said. “Years ago it was seen as a ‘non-important’ disease because patients seemed to be living many, many years with it and the treatment did not make any difference.

“People still argue that patients don’t get a benefit from intense treatment and I don’t think that is the case. I think we are making patients live longer and especially with better quality of life. That’s something that has changed dramatically.

“Analysis of prognostic markers is a major issue and now we have tools that can help us identify patients who can go without treatment for longer periods of time and others who need to have treatment relatively soon after they are diagnosed. We have some information we have published that says that probably the best prognostic marker we have nowadays is ZAP-70.

“The problem with ZAP-70 is that it is a test that is a little tricky to do. There is not a good way to know if it is positive or negative. You need to have your internal controls, there is nothing that you can use that is produced by a machine, to calibrate your machine. It’s more of a human sample versus a human sample. It’s like if someone is telling you on eBay ‘I want a blue shirt,’ it’s like ‘What is blue?’ – it can be a dark blue, a light blue.. . .

“That has created a problem that has been recognized by many people. I know very well Dr. Albitar. He was at MD Anderson. He does a good job. But it is kind of interesting to see that kind of variation that has been reported in your ZAP 70. We have not seen that.”

To help get to the bottom of this, Castro made me an offer I couldn’t refuse: namely a free ZAP-70 test and a free mutational status test at the UCSD lab. This is part of a study by the CLL Research Consortium, in which a patient signs a release and the blood samples are taken (“five yellow-top tubes for Dr. Kipps’ lab”) and given a number to protect the patient’s privacy. The blood is then made available for research, the results of which are not necessarily disclosed to the patient.

“I highly recommend to every patient that I see to get into that study,” Castro said. “We’re going to do some testing, put it in the cell bank and maybe later use it for research type of experiments . . . When we see something that we believe will be beneficial to the patient, we will disclose that information to the patient. The ZAP-70 and mutational status is something that we can give you.”

Both Castro and I now await the results, to see what color blue my ZAP-70 shirt is. UCSD is considered by many experts to be the best place in the country for ZAP-70 testing, so I am willing to accept the result as definitive.

“I have tested samples that are 15, 20 years old, the same patient 15 years apart, and we have not seen variation in the ZAP-70 expression," said Castro. "So I am kind of curious to know. Maybe we can do it sequentially, see if there is anything particular, because of your cells, or if it is something that is more in relation to a variation of the technique that they are doing outside [at Quest].”

Then it was time for a physical exam, followed by the doctor’s recommendations about treatment, and I learned that, metaphorically speaking, I am a little pregnant. (Certainly, with any number of lymph nodes swelling up in my abdomen, I am starting to look that way.) The story of my visit will conclude in Foggy San Diego, Part III.

Speaking of blue, the photo above is lifted from an eBay auction of a few years ago, in which the seller was hawking a "blue fur robe." In it, a couple of eBay captains of industry are seen accompanying their merchandise, plying their trade in informal attire. By the way, there was a "lucky winner," as eBay sellers are prone to say, of this auction. . . . So doctors, is this the life you dream of outside medicine?


Deb said...

Thank you David for your detailed account of your visit with Dr. Castro.He sounds like a very through and caring Dr. with alot of CLL expertise.
It is great how he could relate it to EBay.Great you get your tests redone for FREE!
Can't wait for part 3.

Jackie Sue We Love You said...

I just came across your blog as a result of a visit to Dr. Hamblin's blog via CLL Topics. My wife and I are currently residing in Rochester, MN. We are at day +32 on an mini allo SCT at the Mayo Clinic. She has CLL with 11q22 deletion.

I am blogging the progress at:

If you have any questions about the Mayo let me know. We've been around here long enough to be able to answer most any question.

Bruce Taylor

Anonymous said...

CLL is generally a sporadic cancer. There is a subset of folks with familial CLL; other than that, there is no definite cause of the disease.

Since we produce a billion B cells each day, it is really a wonder more cases of CLL aren't present. In such a frantic reproductive rate, errors are bound to occur, and the repair/apoptosis solution to defective cells is not 100% perfect.

Anonymous said...

It looks like Dr. Castor has a comb-over, not that there is anything wrong with that. I do too.

Anonymous said...

Anything new re: plans to "discover" Columbus? Hawaiian chicken awaits.

David Arenson said...

Actually, Dr. Castro does not have a comb-over. He's got a decent head of hair.

Yes, I still plan to discover Columbus. Hawaiian chicken? I've had that in upstate New York. (It's probably served everywhere but Hawaii.) Surely there is a good Thai or Vietnamese restaurant in town!

Denise said...

Hi David -

Your blog inspires me more and more to start my own. We have a lot on common with this disease, the same quest for answers and the same problems with insurance! I self-paid to see Dr. Rai, but didn't get a discount. Andway, I always love to read what you have to say.

As I just said, I recently saw Dr. Rai and, like you, I signed the papers and submitted to the Consortium studies with their 5 yellow topped vials of blood. Christina, Dr. Rai's assistant explained that the blood studies will be "batched" and sent back to the doc's. As I understand it, either the results or the actual blood vials themselves will be sent to UCSD. So although we are going to get our ZAP-70 and mutational status for free... it could be a few months before we know.

Dr. Rai also asked me to join their own research study - as they have received a substantial infusion of funds and have a new state of the art facility - which I agreed to and for which they drew another 7 vials of blood. Then they drew 3 for my CBC and blood chemistry for the visit.

Hey, I was told that the commercial labs just aren't reliable and don't get it right when it comes to ZAP-70 and CD-38! So, as I was at first a negative and then subsequently tested as a positive, I already had that one figured out. They told me at Rai's office that they do not use the prognostic indicators for treatment decisions at this point.

BTW, love the blue shirt analogy! Good one!

Once again, another great entry on your blog! Thanks for keeping us up to date.

Carlin said...

This is not under the correct heading but....
where are you guys on Ebay? I am Dizzyapril and have bought tons of Ebay stuff.
Maybe you all's auctions will have something we need.

David Arenson said...

Anyone who wants to know our eBay ID can write to me privately. I'd rather not make it public here.