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1st appeared 17 March 1999

Alan Kuo Beating All Odds

Alan KuoGood news came last Monday to UCSF postdoc Alan Kuo -- after a four-year struggle with chronic myelogenous leukemia, tests indicate he is free of the disease.

"I'm doing amazingly well," says Kuo, who experienced a relapse just a few months ago. "There's reason to be upbeat." The test showed no sign of leukemia and his chances of relapse have dropped from 40 percent or higher to below 10 percent. "This is the best I can actually hope for statistically," Kuo says.

CML, as his disease is called, is a fatal condition with a median survival rate of three years. Kuo, who has beaten all odds so far, underwent a bone marrow transplant in December, 1997 after an international search for a donor match. But it is only now that he can finally breathe a sigh of relief.

"It lifts this huge emotional and psychological burden off of my shoulders and especially off of my loved ones," he says. "I was kind of depressed for the last few months, after having gone through so much effort, pain, time and money, etc., trying to survive and then having this potential setback. This kind of turnaround is just fantastic."

Although he is feeling the best he has in years, he has had to accept that he will never be the healthy person he used to be. Nevertheless, the optimistic Kuo is learning to make the most of his new lease on life.

In fact, he is driving again, cooking, doing household chores, things he is thankful just to be able to do. But, because he is still immunosuppressed, he has to restrict his activities and be careful to avoid germs. "My girlfriend and I went to a movie the other night but we made sure it was a movie that's been out for a long time so not many people would be there. It's those kinds of things I have to consider," he says.

Kuo, who studies molecular parasitology, is also working more than he has in a long time, mostly from home. He cannot work in his UCSF laboratory because it specializes in opportunistic pathogens, exactly the things an immunosuppressed person must avoid.

One of the biggest challenges in fighting CML, Kuo says, was having to lower his expectations of himself and to form a new concept of normalcy. "I spend a lot of time just sitting on the couch, which is a far cry from my former conception of how one should live his life," he says. "I was a very hyperactive person, very demanding on myself, always on the run doing things - not uncommon among UCSF people. At first it was very difficult to accept but I've had a year to accept it. I don't kick myself anymore for being less competent."

Kuo, 35, received his PhD in oceanography five years ago from the MIT/Woods Hole program. He came to UCSF in 1995 to do microbiology research but a month after arriving he was diagnosed with CML. "I came to UCSF to get medical training but got more than I expected," says Kuo with his trademark sense of humor.

Kuo found out he had the disease after going to the ophthalmologist to get a new pair of glasses. He had not been to a doctor for several years because he lacked adequate health insurance as a student. So when he arrived at UCSF as a postdoc, he immediately took advantage of his health benefits.

The ophthalmologist looked at Kuo's retinas and saw that there was evidence of hemorrhaging in both eyes. He ordered a blood test, which found that Kuo had 50 times the number of white blood cells than he should have. "They said it was amazing that I had not had any symptoms," he says.

After being diagnosed, Kuo spent the next six months in good health, traveling, working and simply enjoying being in a new city. He even spent a month backpacking in Southeast Asia. "I came back and then began serious attempts to treat the disease. My six months were up," he says.

Kuo was put on Interferon for two years, but the treatment did not work. During this time he was looking for a bone marrow donor, but did not begin a "serious" search until his condition worsened in 1997. After creating a website to attract potential donors, getting the word out to Asian registries, and enlisting friends at UCSF and UC Berkeley to hold donor drives, Kuo finally found a match.

Since the transplant, Kuo has been in and out of the hospital with various secondary diseases, never sure when leukemia might strike again. His recent clean bill of health has him celebrating and thanking those who have helped him through his grueling ordeal.

Kuo gives his doctor, UCSF oncologist Hope Rugo, much of the credit for his recovery and says he has a new appreciation for the basic goodness of people.

"I trust people more now," Kuo says. "What impresses me is that people are wonderful. They have hearts of gold."

Links:

Alan Kuo website (updates)

Alan Kuo Still in Seattle, but out of Hospital

Kuo Feeling 'Fat 'n Fuzzy'

Source: Paula Murphy, Daybreak editor


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