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Patients and Outcomes

+ Utilization & Outcomes
+ Patients' Stories
   - Keone Penn
   - Gayle Serls
   - Katherine Marguerite Sutter
   - Robert Lopez-Lengowski
   - Mitch Santana
   - Stephen R. Sprague
   - Spencer Barsh
   - Jacyln Albanese
   - Anthony Dones
   - Heidi Tweten
   - Erik Haines


In 2006, Stephen R. Sprague writes:

Having survived a heart attack and bypass surgery before age 46, this diabetic baby-boomer thought he was done with his medical misfortunes. He was wrong. “During a routine physical exam in November 1995, I was shockingly diagnosed with leukemia. CML...a silent, sneaky cancer of the blood. While this cancer is not one of the more common ones, getting such a surprising diagnosis is not so uncommon for middle-aged adults, since this leukemia has few obvious symptoms and is not predominantly a childhood disease, as most folks think. I quickly began to explore creative ways to mentally and physically cope with my treatment. However, the then-standard chemotherapy only kept my CML, a typically lazy, slowly progressing cancer under control for 17 short months instead of the three to five years that are more the norm...the years I was counting on. In April 1997 I found myself in blast crisis, the end-stage of this disease.

What followed I can only describe as a long run of incredible good medical fortune. First, I was able to obtain a remission after a rigorous six-week hospitalization while I began to frantically reconsider my options. Back then, there was really only one. A hematopoietic stem cell transplant. A daunting, risky procedure for those even in the best of health. And an option only available to those lucky enough to find their elusive donor match. Being an only child, I had no related donor and my search for an unrelated matching bone marrow donor was unsuccessful...not so unusual in the mid-1990s when less than 30% of those searching were able to find a match.

But once again I was fortunate to be in the right place at the right time, as my oncologist, Dr. Andrew Pecora, Chief of the Adult Stem Cell Transplant Program at Hackensack University Medical Center in New Jersey, was planning to begin a novel clinical trial for end-stage adult leukemia patients using matching stem cells obtained from umbilical cord blood and expanded ex vivo (in the lab). Cord blood had already been used successfully for the treatment of pediatric leukemia patients. Dr. Pecora’s trial would help determine whether a sufficient quantity of cord blood stem cells could be expanded to successfully transplant adults. In my case, a very large adult.

Adding to my good fortune was the fact that the New York Blood Center, a forerunner in cord blood research and the oldest and largest public cord blood bank anywhere, instantly found a “perfect” (6/6) cord blood match for me. Some young, anonymous-to-me mother delivering her infant daughter in a New York City hospital had decided to do what few mothers were doing in those donate her baby's umbilical cord blood, never imagining, I'm sure, that it would one day become a gift of life for some dying, middle-aged stranger. My pioneering transplant was done in November 1997 and I have now surpassed my 9th post-transplant re-birthday, cancer-free and in relatively good health. It's been quite a journey.

As these years post-transplant now roll by, I have come to learn that winning a battle against cancer gives one many valuable new perspectives, appreciations and priorities. It also seems that some of us lucky enough to fall into the cancer survivor category, have this compelling desire to want to give something turn our personal experiences, learned through a harrowing and difficult-to-describe ordeal, into something beneficial...not only for ourselves in our personal lives, but for others heading down their own medically uncertain path. Survivors have a unique way of bringing an important, rational perspective to the complicated medical turmoil that always seems so unavoidable during any life-threatening illness. One's fellow patients, their families and loved ones, their caregivers and even the medical community can greatly benefit from the human element of our having been there, coupled with our willingness to talk about our experiences firsthand in simple patient-speak. And as I can personally attest, clinical trial survivors...those with much to risk but much to gain...have the extra satisfaction of knowing that by volunteering to be part of an experimental procedure, we may have helped to advance developing medical science from theory to practical applications so desperately sought by patients unable to be helped by conventional therapies.

So that's how I choose to volunteer my time these days. A one-man advocate of sorts...reaching out to the widespread cancer community in person, in print and globally via the educate, to empower and to encourage those wishing to know more, understand better and gain every advantage in their own struggle for survivorship. As a cord blood advocate, I am privileged:

•To share personal experience and educate about the surprises of adult leukemia, the importance of clinical trials, the advances of stem cell technology and umbilical cord blood specifically, as well as the opportunity expectant parents have to generously give a “gift of life” by public donation.

•To empower patients, their families, loved ones and caregivers to take a proactive role in the survivorship game-plan by knowing enough to ask the right questions and better understand the answers based on fact, not emotion. As I personally discovered, a fully-informed, knowledgeable patient "team" will have the advantage of considering every option, including the possibility of using cord blood donated to public banks as an alternative stem cell source.

•And most importantly, to offer a message of hope by "walking the talk" for those wishing to become committed advocates in winning the battle to live...their own personal battle, or the battle of someone they care about.



Stephen R. Sprague

Stephen R. Sprague was treated for CML in a 1997 clinical trial--one of the first of its kind for adult patients--using cord blood that was expanded ex vivo.