Long-Term Follow-Up

What are we doing for survivors today?

When it comes to blood and marrow transplants, Hutchinson Center researchers continue to seek improvements to better people’s lives

Last summer, when the Hutchinson Center hosted a reunion for more than 300 former patients surviving more than five years after bone marrow and stem cell transplantation, Dr. Karen Syrjala spoke to them about a subject with clear implications in their lives: "What have we learned from you? And more importantly, we have to ask ourselves, what are we doing for survivors today?

"All of the improvements in treatment have been inspiring to me, but the greatest inspiration has come from you, without a doubt," she told survivors at the fifth patient reunion in the Center’s history.

For Syrjala and other doctors and cancer researchers at the Hutchinson Center and its treatment arm, Seattle Cancer Care Alliance, it has been important to stress to patients that their experiences cut across a wide spectrum of survivorship; no two patients are alike, and there are many different ways that patients can function in their lives.

"If we didn’t do the research, one might assume that some of the stories from a few individuals represent the whole picture," she said. "But thanks to our patients who continue to participate in our studies, we know that the experiences of our survivors vary widely.

"Some people will have significant health problems and complications stemming from the disease and transplantation, and they’ll struggle with finding a balance in their lives. For others, it will be easier. However, most survivors will remain at risk, not just for cancer, but also for other health problems."

There was plenty of good news for former patients at the reunion. One of the most recent Center studies shows that survival rates after transplantation had increased during the decade after the mid-1990’s.

Researchers continually make improvements to the transplantation procedure, which also translates to fewer side effects for patients. For example, along with decreased mortality, Center researchers have found significant declines in the risks of severe graft-vs.-host-disease, infections caused by viruses, bacteria and fungi, and complications caused by damage to the lungs, kidney and liver after transplantation.

Syrjala also reported important findings in her areas of research. The cognitive impairment known as "chemobrain" or "chemofog" is all too real, one of her studies showed, vindicating many patients who couldn’t quite put a name to what they were experiencing.

Chemobrain is often characterized by loss of memory and stumbling to find a word that seems just out of reach, among other symptoms. Syrjala found that for many patients, the effects of chemobrain tend to improve with time. Many adapt by learning new strategies for coping with the problem.

And while about 40 percent of patients do not fully recover in verbal and fine motor skills, most are able to adapt to their mild limitations. For others, more extensive rehabilitation strategies can help them find satisfaction in their lives, despite the challenges.

Thanks to research, we also know that significant muscle loss and muscle cramps affect many patients, raising major research questions.

"Muscle loss occurs more frequently than in the general population and it happens at a more accelerated rate," Syrjala said. "That’s why it’s imperative to understand why this is happening and to learn what we can do to reverse or prevent muscle loss in the first place.

"The health needs of our patients differ from the needs of the general population," she said. "The challenge is to live as healthy and full a life as possible, and we want to do everything we can to help transplant survivors achieve that goal."