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In the war against cancer, the ‘substantive heroism’ of clinical trial patients is on full display

December 22, 2011

By Colleen Steelquist, Hutchinson Center Science Editor

Dr. Siddhartha Mukherjee’s homage to the bravery of cancer patients in his Pulitzer Prize-winning book, The Emperor of All Maladies: A Biography of Cancer, struck a chord with me. It made me think of my sister-in-law, Jenny, and her battle with aggressive multiple myeloma.

“The story of cancer isn’t the story of doctors who struggle and survive, moving from one institution to another,” Mukherjee wrote. “It is the story of patients who struggle and survive, moving from one embankment of illness to another. Resilience, inventiveness and survivorship—qualities often ascribed to great physicians—are reflected qualities, emanating first from those who struggle with illness and only then mirrored by those who treat them. If the history of medicine is told through the stories of doctors, it is because their contributions stand in place of the more substantive heroism of their patients.”

I’ve written about Jenny before as she hoped back-to-back stem-cell transplants would buy her a long reprieve from the relentless march of her myeloma. They didn’t.

A battle against the ‘incurable’

When Jenny’s blood work started to show a rise in her incurable cancer last December, she returned to Seattle Cancer Care Alliance, the treatment arm of the Hutchinson Center, and started on a late-stage clinical trial with an immunomodulator called Rivlimid.

Many cycles of that drug knocked her myeloma down again, but blood tests in September confirmed an upward trend in her M protein levels (a measure of myeloma’s presence in the blood), necessitating a new game plan. This is common with a tricky foe like myeloma: advance, retreat, adjust.

She’s been on other clinical trials since then, all with the realization that the various chemotherapies have dampened, but not defeated, her myeloma. This disease—like many our patients face—is a tough customer.

In the months when a drug is working, Jenny and her husband, Bob, are confident of the path. “The sudden turns—the transitions when it’s not clear what’s working or not, or even what the next option presents—are the hardest emotionally,” they admit.

This is the world of clinical trials, ripe with promise and pitfalls. With a disease that has yet to be defeated, such trials offer patients access to promising new interventions that are generally not available outside of a clinical trial.

If the treatment proves more effective than standard therapy, trial participants may be the first to benefit. And for Jenny, who yearns for someone, someday, to benefit from her struggle, the trial results may help other people who need cancer treatment in the future.

Jenny faces a new clinical trial

With some trepidation, Jenny signed a 19-page consent form this month to join a new phase 1 clinical trial involving three proven drugs not given in combination before. She is one of the first patients in the world to receive this treatment and SCCA’s only patient on the regimen.

Getting a spot was a little like winning the lottery but being unsure you want the prize. As Jenny said, “I’m more comfortable being in the third wagon train over the pass, but I’ve tightened my bonnet strings and ventured forth as a real pioneer.”

Unlike later-stage studies, a phase 1 trial is primarily conducted to learn how safe a treatment is and to determine the medication amount that can be given safely. Jenny’s doctors, of course, also want to learn how well her cancer responds to this treatment.

New interventions are often studied in a stepwise fashion, with each step representing a different phase in the clinical research process. Ideally, patients would like to enroll in a phase 4 study, which builds upon earlier, successful studies to further evaluate the effectiveness and long-term safety of drugs or other interventions.

They usually take place after a drug or intervention has been approved by the Food & Drug Administration for standard use. Jenny’s new treatment may reach that phase someday, but for now, the building blocks are being laid.

The heroism of cancer patients

In my eyes, that she could read that lengthy consent form warning of rare side effects like multi-organ failure, leukemia, cerebral hemorrhage, and more, and forge ahead, is the “substantive heroism” of cancer patients of which Mukherjee writes.

“There are days when I think of Jenny’s treatment as though we are riding a series of waves, each moving her life forward,” Bob said. “As one wave’s power wanes, another comes along and picks her up.

“After awhile, I realize that it’s not about any particular wave, but more about the ocean itself: The accumulated knowledge of patients and doctors, caregivers, nurses and researchers contributing to the treatment of this disease,” he said.

“That’s the force that carries us forward. And Jenny isn’t just a passenger or beneficiary of this; she’s one of the reasons it moves forward. Doctors and patients together making a difference. And every new day we live that wonderful consequence.”

2 Comments leave one →
  1. Karen Hartvig-Nielsen permalink
    January 3, 2012 3:59 pm

    As a multiple myeloma patient in her tenth year of remission, and knowing my odds against staying there are getting less and less, I really appreciate you sharing Jenny’s battle with all of us. Back-to-back auto/allo transplants in 2001 have kept me going, but I know that I will one day have to enter the field of clinical trials again if we…all of us…are to win against this rotten disease. While it scares me to read about her struggles, I am also so proud of her, people like her, and myself, for daring to fight regardless of those long, long, scary lists of potential side-effects. And thank you, Jenny, for being strong enough to be part of preparing the next leg of my journey. You go before me, as have countless others, as will I, to fight for life. And it really does take true courage…for when the body is weak, and the spirit is worn, to keep on fighting as Jenny is, for herself and all of us, is truly amazing.


  1. Forging a deep connection to Fred Hutch and SCCA | Petri Dish

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