Remembering Edward Said and Understanding Leukemia

What was reported

NPR reported in September 2003 that Edward Said, the Columbia University literature professor best known for his 1978 book Orientalism, had died at the age of 67 after a long illness with leukemia.

That is the extent of what a reader can safely take as public record, and this article does not add to it. What it can usefully do is explain the slow-growing leukemia of adults that fits a long course, chronic lymphocytic leukemia, usually shortened to CLL.

A cancer that often announces nothing

CLL is a cancer of the blood and bone marrow in which the marrow makes too many lymphocytes, a kind of white blood cell. NCI describes it as a disease that usually gets worse slowly. It is one of the most common leukemias in adults, it typically appears during or after middle age, and it rarely occurs in children.

Reference 1 in NCI's PDQ summary credits the American Cancer Society for the 2025 projection: 23,690 new cases and 4,460 deaths in the United States.

The most striking thing about it is how it is usually discovered. NCI states that CLL causes no signs or symptoms at the start and may be found during a routine blood test. Many people learn they have it from a test ordered for something else entirely.

When symptoms do appear, NCI lists:

• Painless swelling of lymph nodes in the neck, underarm, abdomen, or groin.
• Weakness, or feeling tired.
• Pain or a feeling of fullness below the ribs.
• Fever and infection.
• Easy bruising or bleeding.
• Petechiae, meaning flat, pinpoint, dark-red spots under the skin caused by bleeding.
• Weight loss for no known reason.
• Drenching night sweats.

The fullness below the ribs is worth explaining. Lymphocytes accumulate in the spleen, which sits under the left rib cage. An enlarged spleen presses on the stomach, so people often describe feeling full after only a few bites.

When to get checked

Ask for an appointment, and a complete blood count, if:

• A painless swollen node in the neck, armpit, or groin has been there more than three or four weeks.
• You feel full after small meals, or notice discomfort under the left ribs.
• Night sweats are soaking your bedclothes.
• You have lost weight without trying.
• Infections keep returning, or take much longer to clear than they used to.
• You bruise easily, or notice pinpoint red spots on the skin.

There is one number to know. NCI's diagnostic threshold is an absolute lymphocyte count of 5,000 per cubic millimeter or higher. If a routine blood count shows a raised lymphocyte count, it should be repeated and investigated rather than filed away.

There is no screening program for leukemia, and NCI has no evidence-based screening or prevention summary for it. The complete blood count that finds most cases is ordered for other reasons.

Confirming the diagnosis

Two things are needed. The first is that lymphocyte count. The second is flow cytometry, a laboratory test that reads the proteins on the surface of cells. In CLL, the excess cells are B lymphocytes carrying the markers CD5 and CD23, a combination that distinguishes CLL from other lymphoid cancers.

A complete blood count with differential, blood chemistry studies, chest x-ray, and CT scans fill out the picture and show where disease has accumulated.

Staging, and the markers that matter more

Two staging systems are in use. The Rai system runs from stage 0, which is a raised lymphocyte count alone, up to stage IV, which includes a platelet count below 100,000 per cubic millimeter. The Binet system sorts patients into groups A, B, and C by how many areas are involved and whether anemia or low platelets are present. NCI also describes disease as asymptomatic, symptomatic or progressive, recurrent, or refractory.

Genetic findings now carry more weight than stage. NCI gives the figures:

• Cells with a mutated IGHV gene are associated with median survival beyond 20 to 25 years. Unmutated IGHV is associated with 8 to 10 years.
• Deletion of part of chromosome 13, written del(13q), is the favorable finding, with median overall survival around 17 years.
• Deletion on chromosome 11 or an extra chromosome 12 sit in the middle, at 9 to 11 years.
• Deletion of part of chromosome 17, del(17p), is the least favorable, with median overall survival around 7 years. It usually goes with damage to the TP53 gene.

These are medians drawn from groups. Half of each group did better than the number shown, and the figures shift as treatment improves.

Why the first treatment is often no treatment

For someone with no symptoms, NCI describes observation as the standard approach. This is called watchful waiting, and it is an active plan rather than neglect. It means regular examinations and blood counts, with treatment held back until the disease shows it needs it.

That runs against instinct, but trials have repeatedly found that treating early does not help in slow-growing disease, and treatment carries real costs.

What treatment looks like now

The field changed substantially in the last decade. NCI describes a philosophy of avoiding chemotherapy drugs up front where possible.

Three targeted drugs are approved for first-line use. Ibrutinib and acalabrutinib block an enzyme called Bruton tyrosine kinase, which CLL cells depend on for survival signals. Venetoclax blocks BCL2, a protein that keeps the cancer cells from dying on schedule.

NCI's patient summary also lists chemotherapy, radiation therapy, immunotherapy, and chemotherapy followed by a bone marrow or stem cell transplant among the options, depending on the situation.

Reading the survival numbers

NCI makes a statement here that is rare in oncology. With more than ten years of follow-up on the newer targeted drugs, median survival for all patients has not been reached, meaning more than half of the treated group was still alive when the analysis was done.

That does not translate into a promise for any individual. Genetic markers, age, other health conditions, and how the disease behaves all vary. What it does say is that the numbers written a generation ago no longer describe this disease.

Sources

• https://www.cancer.gov/types/leukemia/hp/cll-treatment-pdq
• https://www.cancer.gov/types/leukemia/patient/cll-treatment-pdq
• https://www.npr.org/2003/09/25/1446389/leukemia-claims-palestinian-advocate-edward-said
• https://www.cancer.org/research/cancer-facts-statistics.html