Thriving, Summer 2014
In this issue:
- Intimacy after Cancer
- Thriving Cancer-Free: Anita Mitchell’s Story
- Summer Events to Stay Active
- Survivorship Clinic News
- Women’s Wellness News
- Healthy Ways to Control Weight
LTFU Special Section:
- Message from Dr. Lee
- Chronic GVHD: Signs to Watch For
- Man Transplanted at 56 Celebrates 16th Anniversary
- Survey Focuses on Physical Function and Intimacy
Welcome to the First Issue of Thriving
Our new quarterly newsletter celebrates and supports the lives of all cancer survivors. Thriving combines publications from the Survivorship Clinic (Survive & Thrive), Women’s Wellness Clinic (Women’s Wellness), and the Fred Hutchinson Long-Term Follow-Up Program (LifeLinks). Our goal is to share great information that each has previously delivered to separate audiences.
In this edition we explore challenges survivors experience with intimacy and sexuality, give guidance on healthy eating, and feature stories on people thriving after their active treatment.
Please tell us what you want to see in future issues by taking a short online survey.
After cancer, it’s normal to view the world, jobs, mortality, relationships, and intimacy with a new lens. Along with different ways of doing and being in the aftermath of cancer is the opportunity to find a new level of intimacy and sexual well-being, according to Mary Ellen West, a certified sex counselor who participated in the Moving Beyond Cancer to Wellness event June 7 at Fred Hutchinson Cancer Research Center.
West calls this a “reboot.”
“When intimacy is good in a relationship, it doesn’t carry much weight. When it is dissatisfying for one partner or the other, it can become a huge elephant in the bedroom,” West said. “Unfortunately, sex and intimacy are often difficult discussion topics for couples. And for those going through cancer treatment, intimacy concerns often take a back seat to the full-time job of surviving.”
Many couples don’t discuss any problems until up to a year after treatment, West said. Partners may be nervous about bringing it up, because they do not want to put pressure on the survivor.
“Once you are able to have an honest discussion about intimacy and romance, you can start the reboot,” she said.
We all tend to develop a sexual script that guides us, and cancer often requires us to rewrite it, West said. “Some of our ideas about intimacy that come from television, movies, and magazines make us believe our sexuality is inadequate, and the pressures of treatment don’t make it any easier.
“Being aware that the brain is the largest sex organ in our body enables couples to find new ways to feel romantic and become intimate with one another,” she added. “Losing one sensation usually opens the door for a new one.” As an example, she noted that skin is very sensitive and can be a source of sensual pleasure.
When starting to reboot after treatment, she advises survivors to begin by having a conversation, whether it’s with your partner, therapist, or someone at the Survivorship Clinic. The benefits are worth broaching an uncomfortable subject. Research shows couples who are able to adapt to changes and explore new ways of being intimate are more successful and happier long-term.
Keeping an open mind can help your sex life during and after cancer treatment. Learn more self-care tips.
Anita Mitchell celebrated her 50th birthday in 2013 with an “Alice in Wonderland” party.
“We had props from the book, and everyone dressed up—even my surgeon and oncologist from Seattle Cancer Care Alliance!” Anita said. She was the Queen of Hearts. This theme honored her ninth anniversary of travelling down her own “rabbit hole” fighting stage IV colon cancer.
In the nine years since her successful treatment, Anita has dedicated her life to colon cancer prevention and awareness. She started the “Dress in Blue Day” movement in Seattle that is now observed nationally each March. She speaks regularly at events and has won several awards and a tour of the White House in recognition of her advocacy work. Her latest effort is supporting National Round Table’s “80 Percent by 2018,” which aims to increase the percentage of screening colonoscopies performed each year.
Anita’s life isn’t all about prevention work, however. She stepped out of her comfort zone last summer to attend Epic Experience, a camp for cancer survivors in the Colorado Rockies, kayaking and horseback riding—things not usually on her preferred Fun List. But she loved it. “I would do it again!” she said. “The group teaching the activities was compassionate, caring, and non-judgmental. We all, men and women, had different kinds of cancers. It was a nice experience to share. We’ve even had two reunions since.”
Anita was 41 when she was diagnosed. Her treatment included surgery, chemotherapy, and radiofrequency ablation. She has been cancer-free since 2005 and relies on the Survivorship Clinic for follow-up support.
Anita is tentative, yet totally looking forward to her 10-year cancer-free anniversary in 2015.
Living with uncertainty has been the hardest part about being a cancer survivor, she said. “I learn every day, live fully, and have hope.”
Mt. Adams Climb, Jul. 28 to 31.
Team Survivor Northwest supports women cancer survivors to train and climb a mountain. firstname.lastname@example.org
Obliteride, Aug. 8 to 10
Features bike rides, celebrations, and concerts. Every dollar raised goes to lifesaving research at Fred Hutchinson Cancer Research Center.
Swim Across America, Aug. 23 and Sep. 6.
Raise awareness and money for cancer research, prevention, and treatment at SCCA. Participate as a swimmer, volunteer, or fundraiser in Moses Lake or Seattle’s Lake Washington, both open water swims.
Wings of Karen 5K Bra Dash, Sep. 28. Funds benefit breast cancer research in the Pacific Northwest, including SCCA.
The SCCA Survivorship Clinic helps patients who have completed active treatment or who are in long-term therapy to prevent their cancer from coming back. To schedule a clinic appointment, call (206) 288-1024.
Epic Experience: Adventure Camp for Survivors
A free, week-long, outdoor adventure for people treated at SCCA is scheduled Aug. 24 to 30 in Colorado. Caregivers can attend a separate camp, all expenses paid. Stand-up paddle boarding and kayaking are among the activities offered at Epic Experience Ranch. A dozen people from SCCA attended last year. To apply or learn more, visit www.epicexperience.org, call (855) 650-9907, or email email@example.com.
SCCA is enrolling cancer survivors in a research program to help improve memory and thinking abilities in people experiencing cognitive problems after treatment. The program consists of a seven-week group workshop, with cognitive testing before and after the workshop. For more information, call (206) 667-7930.
Share Your Story of ‘Chemobrain’
Is mental fogginess part of your cancer recovery journey—now or in the past? Do you have trouble with your memory or planning ahead? What helps you cope? Please share your experiences and tips for an upcoming article on chemobrain. Email your comments to firstname.lastname@example.org.
The Women’s Wellness Clinic at SCCA offers wellness-focused follow-up care for women who have completed cancer treatment for a gynecologic cancer or breast cancer. For appointments call (206) 288-6576. Below are new studies you might be interested in.
Open to women at increased risk for breast cancer, this randomized study tests whether taking a flax supplement reduces cell turnover in the breast, which researchers believe may be a sign of reduced risk for breast cancer. Potential participants are screened with random periareloar fine-needle aspiration (RPFNA), to collect breast cells. Participants will receive either the flax supplement or placebo for one year. This study is supported by a Susan G. Komen Foundation grant.
Tamoxifen has been shown to reduce breast cancer risk by up to 50 percent in high-risk women. This study is evaluating whether a lower tamoxifen dose may also be effective, and with fewer side effects, in women who have received radiation to the chest wall, arm pit area, or whole body for cancer treatment. The study is enrolling eligible women who are at least 25 years-old, received radiation treatment before age 40, and have remained free of disease for at least two years. Participants must have been diagnosed with childhood, adolescent, or young adulthood cancers two or more years ago. This study is supported by a National Cancer Institute grant.
This study evaluates acupuncture to see how well it works to reduce joint pain related to aromatase inhibitors in women with early stage breast cancer. Eligible women are post-menopausal with a previous diagnosis of stage I to III breast cancer and who show no evidence of recurrent or metastatic disease. Participants must currently be taking a third generation aromatase inhibitor and experiencing significant joint pain as a side effect.
Research study coordinator, Donielle O’Connor, can answer questions about the three trials above. (206) 288-7427 or email@example.com
By Gretchen Gruender, MS, RDN, CSO, SCCA Nutritionist
No matter where you are in your journey, a visit to your oncologist probably begins by getting on the scale. Weight is being watched for many different reasons. For many people, the concern is having a high body mass index (BMI) or weight for height.
A growing body of research is looking at weight as a factor in survival and recurrence of cancer. Overweight and obesity increases risk for eight different cancers: colorectal, pancreatic, ovarian, endometrial, kidney, gallbladder, esophageal, and post-menopausal breast cancer.
The answer to weight loss, if this is part of your journey, is going to be different for each of us. How we eat, our relationship with food, our metabolism, and other contributing factors all play a role in this picture. Here are four key points to making positive changes for sustained weight loss:
- Know what you eat. Track the food you eat for a set period of time. This will give you an idea of how much you are eating and where you may be getting your extra calories. Use a notebook or try downloading one of the many available apps like www.mynetdiary.com or www.myfitnesspal.com.
- Stay active. Set attainable goals and keep yourself accountable. Find activities you enjoy and/or workout with a friend. If you miss a day or two of exercise, it is important to not give up but instead restart.
- Evaluate your plate. Check the serving sizes against commonly recommended portions. When eating out, split a serving in half and save it for later or share it with a friend. When at home, use a salad plate versus a dinner plate. The American Institute for Cancer Research recommends at least two-thirds of your plate contains plant foods from vegetables, fruit, legumes, or whole grains and one-third or less from animal protein.
- Make a plan to maintain weight. To support your plan long term, consider: joining support groups (online or in person), engaging the people around you, taking a cooking class that introduces variety into your healthy diet, and setting fun activity goals.
Many of you generously continue to fill out our annual survey, telling us how you feel and sharing the ups and downs of life after transplant. Your participation in our research helps us improve care for all survivors.
Chronic graft-versus-host disease affects many of you. Hopefully, you will find the article in this issue about monitoring yourself for changes useful.
We hope you enjoy receiving this newsletter. Thanks as always for staying in contact with us!
Stephanie Lee, MD, MPH
Director of Research, Long-Term Follow-Up
Chronic graft-versus-host-disease (GVHD) affects 30 to 70 percent of transplant patients who receive donor stem cells. Unlike the acute form, chronic GVHD typically develops more than 100 days after transplant. It can affect the skin, eyes, mouth, lungs, and other organs. It can be mild to severe, sometimes making life miserable months and even years after a transplant, as donor cells attack a patient’s body.
The risk of developing chronic GVHD varies greatly depending on the type of transplant and methods used. “But anyone is at risk and it’s important to know the signs to watch for,” said Stephanie J. Lee, MD, MPH, director of research for the Fred Hutchinson Long-Term Follow-Up Program (LTFU) at Seattle Cancer Care Alliance. Early diagnosis and proper treatment of chronic GVHD may prevent permanent damage.
Risk seems to increase when medications are being adjusted, either tapered down or stopped, “so that’s a particular time to be vigilant about watching for signs of GVHD,” Dr. Lee adds. Events that tax the immune system, such as an infection or sunburn, also increase the risk.
10 Signs of Chronic GVHD
LTFU Clinical Service Director, Mary Flowers, suggests transplant patients screen themselves for GVHD every week for three months after stopping immune suppression. Otherwise, check monthly or at any time that new symptoms appear. Consider these questions:
- Does your skin feel tight, hard, very dry, itchy, or look different?
- Have you stopped sweating and have trouble cooling off?
- Are you losing hair (scalp or body) or are your nails brittle or ridged?
- Are your wrists, fingers, or other joints stiff or painful?
- Are your eyes dry, painful, or sensitive to wind or air conditioning?
- Is your mouth dry, sore, or sensitive? Do things taste different? Do you have sores?
- Do foods or pills get stuck when you swallow?
- Do you have trouble breathing, or do you cough or wheeze?
- Do you have vaginal dryness, pain, or itching? Do you have penile pain or pain when urinating?
- Have you lost weight without trying or can’t gain weight?
Tips for Self-Exams
Dr. Flowers recommends you examine the skin on your entire body with a mirror or loved one’s help. Use a lamp or flashlight with a halogen light bulb to examine the lips and inside of cheeks, gums, tongue, and throat. Assess the flexibility of your joints, including ankles, shoulders, wrists, and elbows.
Review these photos and questionnaire to help guide your self-exam.
Report Suspected GVHD
If you are working with LTFU, report any suspected GVHD symptoms to LTFU. Otherwise, tell your own doctor. If possible, take pictures to show the changes. Be sure to provide a list of all medications and treatments.
If you are affected by chronic GVHD “there are more options than ever before,” says Dr. Lee. “We have more targeted treatments, designed to treat GVHD in a more focused way than prior drugs. Many clinical studies are going on,” she adds, “so don’t give up looking for something new if past treatments haven’t relieved your symptoms.”
For more information, contact the LTFU program at (206) 667-4415 or LTFU@seattlecca.org.
When John Sturman was diagnosed with chronic myeloid leukemia (CML) in 1996 at age 54, he was considered too old for a bone marrow transplant, the only curative treatment for CML at that time. Although John played competitive squash and tennis every week and regularly ran road races on Staten Island, patients his age were typically rejected as too old to withstand the conventional high-dose conditioning regimens.
He initially responded well to treatment with alpha-interferon but relapsed a year later. Further immunotherapy was not effective. Dogged determination led him to contact the Fred Hutchinson Bone Marrow Transplant Program (now part of SCCA), which was investigating transplant methods for older and sicker patients.
“Hearing my situation, and that I was in good physical condition and a research scientist myself, the attending physician thought I might be a good study candidate. I was, and I am still thriving,” said John, who just celebrated his 16th transplant anniversary.
Evolution of Reduced-Intensity Transplants
His successful transplant and recovery helped open the door to transplants for older patients, who are at higher risk for many cancers. Although John received full-intensity conditioning before infusion with donor cells in 1998, that same year researchers at the Hutch began clinical trials to test a lower-intensity approach, which led to development of reduced-intensity transplants (also called mini-transplants or non-myeloablative transplants). In reduced-intensity transplants, lower dose conditioning is used to weaken, but not destroy, the bone marrow and immune system before infusing stem cells from a donor.
Transplants for Patients in Their 70s
Thanks to this option developed at the Hutch, there is no longer an absolute upper age limit for transplantation. Patients in their 60s and 70s, as well as younger patients with additional medical conditions, can now undergo reduced-intensity transplants.
“It’s amazing to me that in less than a decade the upper age of transplantation has increased so much,” he said. He returned to the LTFU Program at SCCA on his first, second, fifth, and tenth anniversaries. Visiting in 2008, he learned that SCCA had recently transplanted a 70-year-old man. “That makes my whole saga worthwhile,” he said.
Up close and personal is an apt description of this year’s in-depth survivors’ survey for the Fred Hutchinson Long-Term Follow-Up Program at Seattle Cancer Care Alliance.
“We know what issues people face early on, but we don’t have good information on how they’re doing physically, sexually, and in their relationships more than two years after transplant,” said Karen Syrjala, PhD, co-director of the Survivorship Program at SCCA. “Our goal is to understand the quality of life in these areas for people more than two years out. If we don’t ask, we don’t learn.”
Syrjala has worked with transplant patients for more than 25 years and is the director of Biobehavioral Sciences at Fred Hutchinson Cancer Research Center. “If we know the issues, we can be more effective at saying who might have problems and how we can help.”
The survey includes questions about your physical abilities, moods and feelings, whether you are in a committed relationship, your sexual activity, and any problems you may be having such as pain or difficulty reaching orgasm.
“These questions are sensitive and personal,” she acknowledged. “We know sexuality is very important to quality of life for many people, but it tends to be forgotten in the context of all the other issues people face at this time. We do have good methods that help people improve their sexual functioning. We want to get these methods to the people who need them so they can improve the quality of their sex lives.”
As always, participation in the survey is voluntary and much appreciated by the LTFU staff. Your answers will be stored in a separate, password-protected database, not as part of your medical file. No one will be able to identify you or your answers to the questions in this survey. A survey will be sent to you on the anniversary of your transplant.