Itching: cutaneous T-cell lymphoma

[Guest guest]

Doctors knew how to treat my cancer, but it took years to control my itching By

Lamb Special to The Washington Post

Monday, January 3, 2011; 11:23 PM

The itching that accompanied the appearance of a splotchy rash along my belt

line in 2003 seemed only a minor annoyance at first. My dermatologist was

unconcerned. He said the elastic band on my underwear was probably too tight. I

sought a second opinion and was told to change my laundry detergent. Those

doctors were as clueless as I was.

It turned out I had a little-known form of cancer - which understandably became

the focus of treatment. After all, who gives much thought to itching? You have

an itch, you scratch it, it goes away. So I thought.

Soon, however, my itching became chronic, around the clock, deeply rooted, as

though a swarm of mosquitoes had chosen me for dinner day after day. I couldn't

scratch fast enough. At first my friends laughed when I'd stop on a street to

rub my back against a light pole or when my hands were in constant motion at

dinner, clawing at unseen tormentors. Then it stopped being funny. As months

turned into years, itching became a form of torture, if not exactly pain.

Sometimes I would have to excuse myself in restaurants, go into the restroom,

drop my pants, take off my shirt and scratch as forcibly as I could with a

plastic comb I carried for that purpose. Sometimes I'd pull my car off the road

to park and scratch. I slept only fitfully for weeks on end. Occasionally there

would be a reprieve and I'd think the worst was over. But the itching would soon

return. I had embarked on a seven-year journey that would cost Medicare hundreds

of thousands of dollars before the outlines of a resolution came into sight.

It took several months of hunting in the Washington area before I found the

dermatologist, Todd Perkins, who initially identified what was wrong.

In early 2004, he told me I had cutaneous T-cell lymphoma, in which white blood

cells called T cells migrate to the skin, causing lesions and eventually forming

plaques and tumors. Treatable but not curable, CTCL is slow-growing. Only about

1,500 new cases a year are reported, such an insignificant number compared with

other forms of cancer that doctors often do not recognize it. The average

patient, I was told, has CTCL for six years before it is properly diagnosed, and

the mortality rate is probably about one in 10. The cause of death for 56

percent of its victims is mislabeled, one medical study showed.

I took the news that I had cancer in stride. I had been blessed with good health

for 64 years; as a journalist, I'd covered wars from Vietnam to Lebanon and

Iraq, escaping close calls unscathed. So why shouldn't I be reminded there are

no free rides in life?

My treatment began in April 2004, scratching and standing naked three times a

week under ultraviolet lights in an enclosed, air-conditioned cubicle in

Perkins's office. Called PUVA therapy, it is the standard first step in dealing

with CTCL. The sessions were quite pleasant, like sunbathing, and resulted in a

tan, something doctors had told me for years to avoid because of my fair

complexion. But PUVA did little to restore my flagging appetite or energy level

- and I kept on itching. After nine months, we stopped.

For the next five years, I spent so much time in clinics and doctors' offices

and blood labs that health care became virtually my full-time job.

On Perkins's advice, I flew to Boston to consult with CTCL specialists at the

Dana-Farber Cancer Institute. For the next four years I visited the two doctors

who managed my disease every three months. (My treatments were carried out

closer to home, in the Washington area.) I always scheduled my spring and summer

appointments on days the Red Sox were at home so I could take in a game at

Fenway Park.

Among the treatments doctors prescribed was photopheresis, in which twice a

month my blood was removed, " cleansed " in a large machine to isolate cancerous

cells, then returned to me three hours later. Over the years they put me on one

pill that cost $8,000 a month, steroid ointments, three forms of chemotherapy

and interferon, a self-injected drug. In one year alone, my medical bills

approached $300,000.

But all that money didn't buy restored health or calm skin, and doctors agreed

that my cancer was progressing rather rapidly. My weakened immune system

couldn't fight off herpes in my left eye or an outbreak of anal warts. My

fingernails became bluish and brittle; beginning in 2008, my toenails began to

fall out. My itchy skin started peeling like wallpaper; each morning my wife

would vacuum the blue sheets on our bed, which had turned white overnight with a

solid covering of skin flakes. I lost two of my seven layers of skin and

couldn't retain my body heat: Teeth-chattering chills set in, even when it was

75 or 80 degrees. I donned long-legged winter underwear, bought a heating pad

for my mattress and put buttons on a blanket so I could wear it as a wraparound

shawl.

I perused the Internet and learned that itching can be caused by more than 50

diseases, from kidney disease to psychosis, but I didn't learn much else that

would help. I bought every over-the-counter medication that contained the word

" itch " on its label, tried a cream called Egyptian Magic that claimed to cure a

variety of skin diseases, and signed up for eight sessions of acupuncture.

Nothing worked, but I never stopped believing there was a way out of this mess.

By the spring of 2009, I had run through most of the established treatments for

CTCL except two: a T cell transplant using a donor bank and an injected chemo

drug called Campath. I opted for 12 weeks of Campath.

What happened next was neither sudden nor particularly dramatic. Things just

started changing, bit by bit. My blood labs showed fewer malignant cells and

eventually returned to normal. My skin stopped flaking and the rash cleared. My

toenails grew back. The chills ended. The itching subsided, then vanished.

" Amazing, " said one of my Dana-Farber doctors before uttering the magic words

" enduring remission. "

I met up with a friend the other day whom I hadn't seen in a fair while. Midway

through lunch, he said, " What's up? I haven't seen you scratch even once. " The

observation jarred me because, in the absence of itching, I had more or less

forgotten what it was like to live with a frenzy of scratching.

" True, " I replied. " I stopped carrying a back scratcher and a comb six or seven

months ago. I'm so normal now, I feel like a bore. Which is a trade-off I'd

gladly make any day of the week. "

Lamb is a former Los Angeles Times journalist who now freelances from his

andria home

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