Good news maybe?

New Year's Eve, 2007.
I spent a good part of yesterday reading about Chronic Lymphocytic Leukemia (CLL). The American Cancer Society Web site has a lot of detailed information, as does Wikipedia. Both were very informative.
The not-so-good news from all that is that CLL is not curable. The better news is that "on average" those who have it live another 15 years, according to statistical records. So, from here on, it's all a matter of "odds" and "living right" to beat those odds, plus monitoring my situation every few months (tests)to see how things are going.
The literature says my immune system won't be quite up to par, so I'll be looking for ways to boost that and to avoid things and situations that could compromise it further.
There is a chance its progress could speed up or take on a more aggressive form; the tests will monitor that.
This morning I spoke to Dr. Schlossberg, my oncologist (that seems strange to say: I had better get used to it). He said he is inclined to do nothing except monitor it. The literature regarding this very slow-progressing leukemia supports that prescription.
I am, however, going to see a radiation specialist about the possibility of shrinking the two lymph nodes that seem to be impinging on my windpipe. After all, something in that region is causing the sleep problem (nighttime gagging) that kicked-off this whole investigation and discovery. I don't know yet when that might take place.
By the way, CLL is almost exclusively a problem for people over the age of 60, more common in males than females, and with some increased prevalence among farmers. Odd? Maybe not. There is a suspected connection to Agent Orange, which is basically the same stuff farmers and I used for years as an herbicide around the farm, and even extensively as a summer job in 1967 with the Rhode Island Fish & Game Department.
Life is weird.

The news nobody wants to hear

Somehow I never thought it would be me. Cancer. Leukemia. Lymphoma.

Always in good physical shape, reasonably fit. Great longevity on both sides of ancestors' families.

But here it is, Alan. Deal with it.

I am who I am. I have to approach it the way I know best: thoroughly, armed with as much knowledge as possible, trying to make the best decisions possible, finding the best expertise CDPHP (Capital District Physicians Health Plan, my insurance) will provide.

Here's what is known: Two enlarged lymph nodes were removed for biopsy, one just below my right ear and one behind my left ear.

A CT scan found many more enlarged lymph nodes in my chest and abdomen area.

The biopsy was performed 21 Dec 07 by Genzyme. It found "CD5 + B-cell lymphoma. The antigenic profile is consistent with chronic lymphcytic leukemia / small lymphocytic lymphoma (CLL / SLL)."

The details of the test results look like this:


B-lymphoid associated
sKappa..........B-cell..........negative
sLambda........B-cell.........moderate
CD10 ...........CALLA / Granulocyte, B-cell subset .........negative
CD19............B cell .........moderate
CD20...........B-cell .........Dim to moderate
CD22 ..........B-cell .........negative
CD23 ..........B-cell / FC Receptor ........moderate

Myeloid Associated
CD 13/23 .....Myeloid Cell .......Negative

T-Lymphoid Associated
CD 2.........T-cell.......negative
CD3..........T-cell ......negative
CD4..........T cell .....negative
CD5 .........T-cell ......moderate
CD7 .........T-cell ......negative
CD8 .........T-cell .....negative
CD56 .......NK Cell .......negative

Miscellaneous Markers
CD38 ........Myeloid / Plasma Cells / Activated cell ........ negative
CD45 ........Leukocyte ............ Bright
CD71 .........Subset Activated Cell ..........negative
CD11c .......Myeloid/B-cell subset .......... negative
ZAP-70 .......T-cell/NK, CLL Prognosis ........negative

I assume (without any research yet since coming home) that the left column (where the many CD items are listed) is the specific test. The middle column is, I assume, what it was looking for, and the right column indicates whether it found it or not.

The report also says, of the left-ear sample: Gated viable cells---72.8%
For the right-ear sample---61.7%

As soon as possible the "oncologist" (cancer specialist) will do an extraction of some bone marrow to see if any has gotten in there yet. He needs to know that before deciding on an appropriate prescription / treatment.

I have a lot of reading to do!

Many of you will have been through this personally or with friends or family members. If you have knowledge to share that you think might be helpful, please don't be shy. I am going to absorb it all!

I will be posting more here as I learn it.

Thanks for the many expressions of support and concern. They are really, really appreciated.

-- Alan