When you have CML, your body's marrow — the spongy stuff inside your bones that produces all of your blood cells — sort of goes haywire and produces too many white blood cells, causing a variety of complications. Unlike other cancers, CML is not a solid tumor, and thus the cancer cannot be surgically removed.

Only about 5,000 Americans are diagnosed with CML each year, qualifying it as an "orphan disease." About 2,300 die from it annually.

While medications, including chemotherapy, can help stabilize you for several years, the only known potential cure is a bone marrow transplant. Bone marrow transplants are a relatively new medical procedure, having been around only since the 1980s. Today, transplants also include peripheral blood stem cell transplants (PBSCT) and cord blood transplants. New data are showing that PBSCTs might be more helpful to CML patients than the typical marrow transplant. Cord blood transplants are not likely to be widely used in CML patients, at least for the immediate future.

But new treatments and potential cures are on the horizon. And now, CML could become more like a chronic disease, instead of a certain death sentence for many patients.

Most notable is imatinib mesylate, trade name Gleevec (pronounced glee-veck). It is known as Glivec outside of the United States and was previously known as STI571. It's manufactured by Novartis.

Gleevec, which was approved for the U.S. prescription drug market in May 2001, after just three years in clinical trials, is sometimes referred to in the media as a "magic bullet" because it is thought to target only the enzymes in your body that allow cancerous cells to grow, not your normal healthy cells. Traditional chemo drugs are "generalists;" that is, they can affect (hurt) all the cells in your body, not just the cancerous ones.

New information about Gleevec is continually being reported. But because no one has been on it long enough, it's not known if Gleevec will actually extend survival, which is typically about 6 years in CML (less for those who do not respond at all to medications). And unfortunately, results are not encouraging for people with advanced stages of CML, as relapse seems likely.

Although some media and doctors have reported that Gleevec has few side effects — foolishly, some have even likened it to aspirin — patients often tell a different story. Side effects include nausea, fatigue, bone pain, muscle cramps, diarrhea, loss of skin pigmentation, low platelets, low white counts, rash, and others. Still, many patients do point out that when the alternative could be death, these side effects are tolerable.

In addition, in some patients, Gleevec inexplicably just does not work. These patients try higher and higher doses of Gleevec (the standard does is 400 mg. a day), up to 800 mg., and still do not achieve remission. Researchers are learning more about this and trying combination treatments to help these patients.

Still, people around the world are scrambling to get their hands on Gleevec, even people with other cancers who believe Gleevec might offer them one last hope. Gleevec, so far, has been shown effective only in cancers that express a certain protein, called c-kit, which includes gastointestinomal stromal tumors (GIST) and CML.

Unfortunately, for many people, even in the United States, Gleevec is cost-prohibitive; the average cost is about $2,500 for 120 of the 100 mg. pills, only good for one month. Medicare does not cover Gleevec. In countries that have not officially approved Gleevec for marketing, patients must pay the full amount out of pocket — if they can get the drug at all. Some are trying to obtain it through online pharmacies or in Mexico, but it's thought that because production is so tightly controlled, there's unlikely to be a black market for Gleevec.

In the meantime, research about CML goes on. Other treatments are also being studied, including combining Gleevec with the traditional interferon treatment, leukine, G-CSF, and arsenic trioxide, plus the latest — vaccines.

*NEW TABS*

Mother found guilty in leukemia scam
An Oregon mother has pleaded guilty to charges stemming from a scheme to raise money by falsely claiming her nine-year-old son was dying of cancer. Tammy Wallender-Smith, 36, a former Hillsboro resident, will be sentenced March 26 for theft, identity theft and unlawful use of a computer. She also pleaded guilty to being a felon in possession of a firearm. Hillsboro police arrested her last March. They accused her of taking money under false pretenses by saying her son, Billy Harp, needed a bone marrow transplant to treat leukemia. Hospital records indicate Billy never had leukemia. Wallender-Smith created a donor Web site on the Internet that received hundreds of responses from around the world. Based on her claims, organizers held fund-raising dances, raffles and other events in Washington and Baker counties that brought in an undetermined amount of money and even a donated horse, which was later returned.
(February 2004)