Wednesday, May 28, 2008

The Word from Mayo

Dr. Tim Call telephoned me yesterday from Mayo Clinic to say that the initial diagnosis of CLL/SLL was, indeed, correct. He had been thinking that perhaps it might be "Mantle Cell Lymphoma," but further analysis of the biopsied nodes by pathologists at Mayo Clinic confirmed the original diagnosis.

Nancy is disappointed. She was thinking that the other, being more treatable, would be a better finding. But I am not. The reading I had been doing about Rituxin, as a treatment didn't thrill me. Contemplation of the side effects (nausea, chills, diarrhea) and the severely negative consequences of the treatment in a small percentage of recipients (rash, sores, death) was not a comfort to me.

Rituxin, also called Rituximab, is what is called a monoclonal antibody (anything with "mab" at the end of its name is a monoclonal antibody), and a substantial part of it is made from mouse cells. Consequently, many of the negative reactions that people have to it are a sort of rejection, much the same as a body rejecting a transplanted heart or the wrong kind of blood after a transfusion. The whole nine yards about Rituxin can be found at a wonderful Web site, and type "rituximab" into the search box there.

Dr. Call was recommending a Rituximab treatment as a way to shrink the tissues in my throat that have been causing my sleep problems. But I think I will hold off as long as possible. I seem to have settled on a way to get sleep, largely by propping myself into a sitting position in bed. It definitely has helped, although it remains to be seen how long that strategy will work. It's conceivable that swelling will continue little by little until something must be done. If so, I'll address that problem when and if it happens. Dr. Call said there was no other pressing reason to try the Rituximab now except to gain relief for sleeping, so I think it's O.K. to do nothing for a while. Maybe I'll get lucky and never need to anything. Or I can consider surgery at that time, also, to carve away excess tissue---sort of a face lift, but inside where nobody would see it!

Meanwhile, losing ten pounds would probably remove some tissue, too!

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Sunday, May 18, 2008

The News from Mayo Clinic

Well, I made the long-awaited trip to Mayo Clinic, at Rochester, Minnesota, with a few stops along the way with Matt to catch some ball games at Wrigley Field in Chicago, Miller Park outside Milwaukee, and The Hubert H. Humphrey Dome in Minneapolis (where the Red Sox looked more tired than I did).

Mayo Clinic (they don't call it THE Mayo Clinic, I noticed) is amazing. Picture a 15-story Las Vegas hotel, because it really is run a lot like a destination-resort sort of hotel (except no lodging), that offers state-of-the art medical services instead of gambling. Big lobby. Check-in counter just like a hotel. Then multiply that times three, because there are at least three buildings.

Down to business: I brought all my medical records and actual "glass slides" of the stuff other doctors had extracted from my body. More blood samples were taken. I met with Dr. Timothy Call, a quiet, congenial sort of fellow who is said to be one of the top experts on CLL/SLL in the world. As Nancy and I sat with him, he went through all my records. He spent an hour with us and asked me to come back the next afternoon to discuss it some more after the new blood samples were analyzed. He spent another hour with me then and lined me up to see an ear, nose, throat (ENT) specialist so we could have benefit of that perspective as to how all this relates or does not relate to my sleep probem.

The upshot of the ENT consultation was that my basic body-build gave me a narrow air passage, anyway (O.K., a skinny neck. He was being polite), and that I do have somewhat enlarged tonsils. My uvula is about twice normal in size, and there is some modest swelling of lymph tissue around the base of my tongue. Oh, and I do have a "deviated septum," (basically a crooked nostril from a baseball accident when I was about 12. Mom always said Louie Meade was a bad influence ... he was batting.) "But," the ENT guy said, "no single one of them is causing the problem. They are all contributing to it."

Options for fixing that? Surgery? Possible, but very painful for a week or two.

Focused radiation? Possible, but could screw up my saliva production.

CPAP machine? Possible, but hasn't worked yet and does not address the cause.

Do nothing? Possible, but unlikely to have things remain "as is;" meaning the problem is likely to continue to gradually grow worse.

Monoclonal antibodies? Possible, but it is a kind of chemotherapy that intentionally impairs one's immune system for a while and carries heightened risks of other infections, like pneumonia. But it would also shrink all the swollen lymph tissue in my body for some extended period. How long? A year? Two years? Seven years? That's been the range of other Rituxin recipients.

The final bit of news from Dr. Call was that he is thinking maybe the initial diagnosis of CLL / SLL is not quite correct. It may be something very slightly different, a kind of lymphoma that mimics CLL. His pathology lab is going to do one additional bit of analysis May 19 or 20 to give him some further clue.

The significance of this slight difference is not so slight. If it is this "other thing," he thinks it might be more treatable than a "standard" CLL.

I'm not sure how I feel about that. I had pretty much convinced myself that my condition "as is" was not treatable and unless it morphed into something else, I was not likely to have to go through chemotherapy and intentionally dismantle my immune system in the name of getting better.

Well, no sense thinking about it until I hear the news.

Time to pile up the pillows and take a slug of Nyquil. It's bed time.