Because multiple myeloma has a high chance of coming back — and you may continue to see your oncologist or take medications over the long term, even once the disease is under control — a survivorship care plan can help you organize your follow-up care and either prevent relapses or catch the cancer as soon as it comes back. With other types of cancer, survivorship care plans are often used to help transition care back to a patient’s primary doctor after cancer treatment. “What’s unique about myeloma is that survivorship probably means continued treatment,” says Arif Kamal, MD, chief patient officer for the American Cancer Society. That said, this ongoing treatment may be less intensive and less frequent. In fact, a survivorship care plan can be even more important for people with a cancer (such as multiple myeloma) that may require long-term treatment, compared with people who had a cancer that may not return, says Brea Lipe, MD, clinical director of Wilmot Cancer Institute’s multiple myeloma program at the University of Rochester Medical Center in New York. Ready to get started? Here’s how to create a plan that works for you.
What to Include in a Multiple Myeloma Survivorship Care Plan
The easiest way to get started is to look for a cancer survivorship plan template, such as the one created by the American Society of Clinical Oncology (ASCO), and customize it with items that pertain to your care. This can include:
Your follow-up appointment scheduleSpace for notes about ongoing symptomsSpace for notes about treatment side effects you experience
Include details about your goals for the journey ahead — something you may have discussed with your oncologist before you started treatment. Right after a multiple myeloma diagnosis, people may understandably be focused on treatment, but long-term goals are important, too, says Dr. Kamal. One thing doctors and patients can include in a survivorship care plan is detailed information about what those goals are and how treatment may need to be adjusted to meet them. “When I talk to my patients, I ask them, ‘When you think about this journey that you’re about to go on, which could be measured in years, what do you hope for the most?’” says Kamal. If you wish to spend time with your grandchildren, travel, or keep working, these things should be incorporated into your survivorship plan. Given the array of treatment options available today, therapies can be tailored to your needs. “If a person’s goals are to travel, then you don’t put them on a regimen that requires them to come to the cancer center every week,” says Kamal. And if someone wants to keep working over the long term, he adds, they may want to take a year off to treat their cancer before going back to work for 10 years. Establishing a multiple myeloma survivorship care plan can help you and your doctor work together toward a shared goal, says Kamal. “It also means if you have terrible pain and you’re not able to work, then it’s not a surprise when you ask for a treatment break — and your oncologist can remember that goal and try to meet it.” Keep these other tips in mind as you craft your plan: Include details about how multiple myeloma has affected your health. Some people experience health problems from multiple myeloma and its treatment. According to Kamal, this can include:
Peripheral neuropathy (weakness, numbness, or tingling from nerve damage, usually in the hands and feet)FatigueBone damage (which can lead to pain and increased risk of fractures)Gastrointestinal problemsWeight gain from long-term steroid use
By tracking these side effects and letting your provider know about them, your doctor can adjust your treatment plan, if possible, or find other ways to help ease your symptoms. Expect changes. A plan for life after multiple myeloma should be viewed as an ongoing process and evolution. It may need to be revised as you go through different phases of therapy or if you have a relapse, Dr. Lipe explains. For example, she notes, a relapse may mean needing to visit a treatment center more often or cut back on physical activity. “Part of the importance of creating a plan like this for myeloma patients is to set the expectation that this is lifelong and that there will be phases and revisions,” says Lipe. Address your emotional health needs. When you’re living with a disease that has the potential for relapse, it’s common and natural to feel stress and anxiety. Taking steps to manage that stress is an important part of staying healthy. Strategies to reduce stress may include mind-body techniques, such as meditation or yoga. You could also consider talking with other multiple myeloma survivors. “Many cancer centers provide survivorship programs with small groups that meet in person or virtually,” says Daniel Verina, DNP, RN, a nurse practitioner in the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City. He also suggests checking out the International Myeloma Foundation and Multiple Myeloma Research Foundation, which offer support groups for survivors. Don’t forget about your overall health. “Part of the survivorship for myeloma is not neglecting other healthcare needs,” says Lipe. “Just because you have one cancer diagnosis, it doesn’t mean you should stop getting your colon cancer screenings and mammograms.” And because people are living longer with this disease, you remain at risk for heart disease and other age-related health risks, she says. This makes it all the more important for your survivorship care plan to include strategies for how to eat healthy, exercise, and get plenty of sleep.
