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After their month of frantic work to beat cancer’s
relentless clock, the group, led by Richard Wilson and Elaine Mardis, directors
of the university’s genome institute, had the data. It was Aug. 31.
The cancer’s DNA had, as expected, many mutations, but
there was nothing to be done about them. There were no drugs to attack them.
But the other analysis, of the cancer’s RNA, was
different. There was something there, something unexpected.
The RNA sequencing showed that a normal gene, FLT3,
was wildly active in the leukemia cells. Its normal role is to make cells grow
and proliferate. An overactive FLT3 gene might be making Dr. Wartman’s cancer
cells multiply so quickly.
Even better, there was a drug, sunitinib or Sutent,
approved for treating advanced kidney cancer, that inhibits FLT3.
But it costs $330 a day, and Dr. Wartman’s insurance
company would not pay for it. He appealed twice to his insurer and lost both
times.
He also pleaded with the drug’s maker, Pfizer, to give
him the drug under its compassionate use program, explaining that his entire
salary was only enough to pay for 7 ½ months of Sutent. But Pfizer turned him
down too.
As September went by, Dr. Wartman was getting panicky.
“Every day is a roller coaster,” he said at the time,
“and everything is up in the air.”
Desperate to try the drug, he scraped up the money to
buy a week’s worth and began taking it on Sept. 16. Within days, his blood
counts were looking more normal.
But over dinner at a trendy St. Louis restaurant, he
picked at his chicken and said he was afraid to hope.
“Obviously it’s exciting,” he said. “But Sutent could
have unanticipated effects on my bone marrow.” Maybe his rising red blood cell
counts were just a side effect of the drug. Or maybe they were just a
coincidence.
“It’s hard to say if I feel any different,” Dr.
Wartman said.
And the cost of the drug nagged at him. If it worked,
how long could he afford to keep taking it?
The next day, a nurse at the hospital pharmacy called
with what seemed miraculous news: a month’s supply of Sutent was waiting for Dr.
Wartman. He did not know at the time, but the doctors in his division had
pitched in to buy the drug.
Two weeks later, his bone marrow, which had been full
of leukemia cells, was clean, a
biopsy
showed.
Still, he was nervous. The test involved taking out
just a small amount of marrow. Cancer cells could be lurking unseen.
The next test was flow cytometry, which used
antibodies
to label cancer cells. Again, there were no cancer cells.
But even flow cytometry could be misleading, Dr.
Wartman told himself.
Finally, a yet more sensitive test, called FISH, was
done. It labels cancer cells with fluorescent pieces of DNA to identify leukemia
cells. Once again, there were none.
“I can’t believe it,” his awe-struck physician, Dr.
John DiPersio, told him.
Dr. Wartman, alone in his apartment, waited for his
partner, Damon Berardi, to come home from work. That evening, Mr. Berardi, a
31-year-old store manager, opened the door with no idea of Dr. Wartman’s
momentous news. To his surprise, Dr. Wartman was home early, waiting in the
kitchen with champagne and two flutes he had given Mr. Berardi for Christmas. He
told Mr. Berardi he should sit down.
“My leukemia is in remission,” he said. The men
embraced exultantly, and Dr. Wartman popped open the champagne.
“I felt an overwhelming sense of relief and a renewed
vision of our future together,” Mr. Berardi said. “There were no tears at that
moment. We had both had cried plenty. This was a moment of hope.”
Hunches and Decisions
Dr. Wartman and his doctors had fateful decisions to
make, with nothing but hunches to guide them. Should he keep taking Sutent or
have another bone-marrow transplant now that he was in remission again?
In the end, Dr. DiPersio decided Dr. Wartman should
have the transplant because without it the cancer might mutate and escape the
Sutent.
Meanwhile, Pfizer had decided to give him the drug.
Dr. Wartman has no idea why. Perhaps the company was swayed by an impassioned
plea from his
nurse
practitioner, Stephanie Bauer.
Dr. Wartman’s cancer is still gone, for now, but he
has struggled with a common complication of bone-marrow transplants, in which
the white blood cells of the transplanted marrow attack his cells as though they
were foreign. He has had
rashes
and felt ill. But these complications are gradually lessening, and he is back at
work in Dr. Ley’s lab.
His colleagues want to look for the same mutation in
the cancer cells of other patients with his cancer. And they would like to start
a clinical trial testing Sutent to discover whether the drug can help others
with leukemia, or whether the solution they found was unique to Lukas Wartman.
Dr. Wartman himself is left with nagging
uncertainties. He knows how lucky he is, but what does the future hold? Can he
plan a life? Is he cured?
“It’s a hard feeling to describe,” he said. “I am in
uncharted waters.”
Monday: Promise and heartbreak.
The good thing is the
breast cancer if out of my body and I am right on plan - for attending Indian
Market in Santa Fe the end of August:)
