LifeLinks - Long-Term Follow-Up Newsletter, Spring 2014
In this issue:
- Message from the Director
- Survivors’ Surveys Give Insights on Heart Disease Risk
- Online Version of Annual Patient Survey Gets Kudos
- Kevin Bray: Collecting Data to Improve Patient Care
- Survivor Story: Sandy Weiss
- FAQ: Healthy Habits that Pay Off
- Events & Resources
Many of you graciously continue to fill out our annual survey, telling us how you feel and what challenges and triumphs you face. We truly appreciate your participation and are committed to share our research results with you. Please see the article in this issue for an interview with Eric Chow, MD, who used data from the survey to analyze the interaction between risk factors and cardiovascular disease.
Over the next year, we’ll be carefully evaluating the types of information we collect, trying to decrease the number of questions but making your answers even more useful for our survivorship studies.
Thanks as always for staying in contact with us!
Stephanie Lee, MD, MPH
Director of Research, Long-Term Follow-Up
Researchers already have made good use of results from the LTFU supplemental survey on heart and blood vessel diseases sent to LTFU patients two years ago.
Survey results show that survivors who followed recommended healthy lifestyle choices had reduced rates of serious heart disease or stroke compared to survivors with unhealthy habits. Healthy choices include not smoking, eating five or more servings of fruits or vegetables a day, and getting at least 150 minutes of moderate exercise or 75 minutes of vigorous exercise every week.
People who undergo stem cell transplants have a significantly higher risk of heart and blood vessel disease because of damage from radiation and chemotherapy given as part of the transplant process. Eric Chow, MD, MPH, and fellow researchers wanted to determine if that risk might be lowered by behaviors survivors can change, such as diet, exercise, and smoking.
Lifestyle Choices Matter
“Because these patients have gone through so much in terms of radiation and chemotherapy, there has been some question whether these lifestyle changes would work as well as for other people,” Dr. Chow explains. “This study gives support to the idea that lifestyle does matter after transplant—that you’re not stuck with the body you have.”
Survivors with healthier lifestyles also had lower rates of risk factors for heart disease and stroke--high blood pressure, high blood cholesterol or fat levels, and diabetes. Dr. Chow cautions that because they only surveyed survivors at a single point in time, the findings don’t prove that healthy living causes the better outcomes in survivors.
But he considers it promising that the same good habits that work for the general population are also associated with a lower risk of heart disease and stroke in cancer survivors. The research was published in the Journal of Clinical Oncology in January 2014.
Follow-up Study Needed
To provide stronger evidence that healthier lifestyle matters, Dr. Chow hopes to repeat the questionnaire in a few years and see if these lifestyles continue to be associated with lower rates of heart-related problems.
He notes that LTFU survivors report healthier lifestyles compared to the general population, but there’s still “much room for improvement.” Surviving cancer is a huge motivation to live healthier for many people, Dr. Chow says, and he urges survivors, their doctors, and other health care providers to “take advantage of this teachable moment.”
“Hopefully people will take heart and use these findings as motivation,” he adds. “Any information that helps people keep New Year’s resolutions is good.”
Response has been positive since the annual patient survey went online in October, and data supervisor Kevin Bray would like to see more people give it a try instead of completing the paper version. About 22 percent of patients completed the survey online in the first four months.
“The online version was easier to complete and took less than half an hour total (even including the time it took to include my medication list),” said one patient. “Thank you, thank you . . . Loved the enhancement.”
Information and instructions about the online survey are included in this year’s packet with the LTFU Patient Recovery Questionnaire (PRQ). It’s your choice whether to complete it on paper or online.
As with the paper version, the online survey draws on patients’ previous answers, so you won’t be asked for information you already provided. Answers are encrypted to protect personal health information. As much as possible, the online survey mirrors the paper version. You can pause in the middle and return to complete the survey later, even from a different computer.
Each month LTFU sends about 385 questionnaires to patients and nearly that many to physicians. Patients receive the questionnaire on the anniversary of their transplant. About half of survivors complete it.
“By making it easier for transplant survivors to participate, we hope to increase the percentage of survivors who complete the questionnaire,” says former LTFU director Paul J. Martin, MD. “With a higher percentage of responders, we will have a more accurate and complete understanding of health among people who have had transplantation. A higher return rate would give us more confidence about the interpretation of the data we gather,” adds Dr. Martin, who stepped down this past summer. The complex process of developing the online version was in the works for more than five years.
The online survey will also make it easier to collect and analyze data, Dr. Martin says. Responding to the survey on paper requires that an LTFU staff member re-type answers into the electronic database. Skipping that step will save time and money and eliminate data entry errors.
Kevin is taking over the helm from project manager Peggy Adams Myers, who is leaving LTFU to work full time on her dog training business.
When Kevin took a temporary data entry job at LTFU seven years ago, he knew nothing about cancer or stem cell transplants. “I learned a lot about what people go through during a transplant” while typing patient answers from the annual survey into the database, he says. When a permanent job came up, he was glad to stay.
“I feel good going to work each day and knowing what I’m doing is hopefully really helping somebody,” he says. “It’s more than just a job. It’s something I really care about.”
Kevin advanced from entering data to working on the annual questionnaire. For the past several years he has focused on collaborating with programmers to create an online version, which many patients have requested.
“The toughest part was explaining to programmers what we need. Part of the reason it took so long is I wanted to make sure people did not get frustrated when they went online to do it. I gave the programmers a hard time,” he laughs.
Although he has no direct contact with LTFU patients, Kevin feels like he knows them from their comments on the annual survey. “People feel they are lucky to be alive and treat each day as a blessing. That is really cool,” he says. Anthologies of past comments can be viewed online.
Away from work, Kevin loves music of all kinds. The father of a two-year-old daughter, he no longer has time to play drums in his rock and roll band, but he enjoys delving into the bins at record stores for vinyl treasures. He likes hiking, especially trails along the Mountain Loop Highway where he grew up.
There was no annual survey of transplant patients 28 years ago when Sandy Weiss had the bone marrow transplant that cured her chronic myeloid leukemia (CML). But she has answered every survey since LTFU researchers began sending patients an annual questionnaire.
“How will anyone know the long-term effects for people undergoing bone marrow transplants unless there is a long-term follow-up study?” she asks.
“I know all the information I’m sending is going into a databank and being used to evaluate how people are doing after transplant. I think it’s really important to know how patients are doing years after, and what sorts of problems they are experiencing, if any,” says Sandy, who works as a clinical lab technologist. She retired in 2009 but went back to work part-time two years later to stay mentally active. She likes being busy, and also attends book clubs, travels, and volunteers.
Sandy’s CML went undiagnosed for months despite extreme fatigue, bruising, aches, and low spirits before she sent her own blood sample to a lab for testing. “The report came back three days later and said it showed a pattern consistent with CML. It was like someone pulled the rug out from under my feet.”
That afternoon she saw an oncologist who confirmed the diagnosis. “After another opinion, both oncologists told me if it was them, they’d be on a plane to Seattle. Fred Hutchinson [Cancer Research Center] was the best place to go.” Six weeks later she flew from Detroit to Seattle.
“There was no question I was going to do the transplant, if I had a donor,” recalls Sandy. “Without a transplant my survival time was three to five years. In spite of the risk of bone marrow transplantation, there was no doubt in my mind that I would go through with it. I had two young children to think about.” Her younger sister was her donor.
The thought of her children kept Sandy going through the grueling total body radiation and chemotherapy that was standard “conditioning” 28 years ago. “They had a saying, ‘Take it one day at a time,’ so I figured, OK, I’ll get through today and worry about tomorrow tomorrow.”
She spent four months in Seattle during the transplant and recovery. Sandy has had relatively few problems over the decades. The graft-versus-host-disease that she experienced after the transplant has resolved. Dry eyes are bothersome because her body no longer makes tears. Dry mouth sometimes makes it difficult to swallow. “I eat much slower than everyone else,” she says. “Other than that I don’t have a lot of problems.
Taking Good Care
“I’m so thankful, especially reading some of the comments from other patients. In general I think I’m in much better physical condition than many people my age,” says Sandy, who turns 70 this year.
She looks forward to reading comments from other patients when she receives her annual questionnaire. “It’s good to read the different perspectives people have, to read how other people feel about having gone through this terrible experience.”
Knowing she has a higher risk of a secondary cancer because of her transplant, Sandy takes good care of herself. She tries to eat right and goes to the gym four or five times a week. “I’m working out with people 30 years younger than me on average and I can keep up,” she says of her weight training and Zumba classes.
Her daughter, who was a toddler when Sandy had her transplant, now has a baby of her own and Sandy is eager to babysit.
“I feel so lucky to be here,” she says. “I don’t want to sit around and waste the time I have.”
Q. How much does having a transplant increase the risk for heart disease and strokes?
A. Estimates vary, but in general risks have been estimated to be two to five times higher than in people who did not have a stem cell transplant. Many studies have confirmed the increased risk for heart disease, strokes, and other related diseases in people who have undergone autologous or allogeneic transplantation.
Q. If I try to have a healthier lifestyle now, will that make a difference? How much of a difference?
A. In the general population, health and quality of life benefits have been clearly seen within the first few months among people who stopped smoking, lost weight, started exercising, or improved their diet.
Adopting healthy habits starts helping whenever you start, even if you have already had a heart attack or stroke. Not only might you avoid these problems, you may prevent other conditions—obesity, diabetes, high cholesterol, and high blood pressure—that are dangerous on their own.
Q. Since risk for heart disease and stroke increases as we get older, is it worth changing my habits if I’m past middle age?
A. It’s true that older people are at increased risk for heart disease and stroke, even if they did not have a transplant. But regardless of your age, it is important to have healthy habits and get appropriate treatment for medical conditions (diabetes, high blood pressure, and high cholesterol).
Q. What are the most important healthy habits?
A. All healthy habits are important. But if you smoke, quitting should be your number one priority.
If you do not smoke, then getting sufficient exercise is probably next on the list, followed by making sure you have a healthy diet. Many people find that healthy habits seem to go together. It may be easier to eat healthily if you are also exercising.
Q. How do I start having healthy habits?
A. If you are having a hard time getting started exercising, try to start very slowly, maybe five minutes of exercise once a day. Increase from there. If you start now and increase by five minutes a day every week, in six weeks you’ll be doing half an hour a day. That’s even better than the recommended minimum. (The Centers for Disease Control and Prevention recommend 150 minutes of moderate exercise or 75 minutes of intensive exercise per week.) Don’t forget to do some strength training, too.
Eating healthy foods can be challenging in this fast-paced world. One tip is to make sure you have at least one healthy snack a day (cut up an apple in the morning) and make sure you have a fruit or vegetable serving at each meal. Once you are doing this consistently, you can introduce other healthy habits.
Support for Patients and Caregivers After Transplant
Join us in person or by conference call.
What: A peer support group for patients and caregivers, facilitated by LTFU nurses. All transplant and returning follow-up patients are welcome.
When: Every Thursday, 11:30 a.m. to 12:30 p.m.
Where: Seattle Cancer Care Alliance
825 Eastlake Ave. E., Sixth Floor, Room 23
Seattle, WA 98109
1. Dial 1-641-715-3300.
2. Enter 882679# at the prompt for a PIN number.
Long-distance charges apply. If you need financial help, we can provide a phone card.
Questions? Contact Long-Term Follow-Up at (206) 667-4415.