Dickey, a freight broker who lives in Menifee, CA,was diagnosed with multiple myeloma in 2010, after he fell to the floor during an otherwise regular workout at the gym. His bones had been weakened by the disease, a blood cancer that develops in the plasma cells found in the soft, spongy tissue at the center of your bones (you may know it as bone marrow).
“I dealt with my diagnosis by staying busy,” Dickey says. “It gave me a sense of being alive and active.”
But managing the nausea that would hit without warning after chemotherapy was a challenge. He discovered how much of a challenge early in his treatment when he forgot to take his anti-nausea medicine.
“I went to a breakfast meeting the morning after a chemo session, got out of my car, and all of a sudden got sick right in the parking lot,” he says. “I never forgot to take that anti-nausea medicine again.”
Side effects, of course, depend on a lot of things, including:
- Your age
- The cancer’s stage
- The length and dosage of treatment
- Your overall health
The most common side effects of multiple myeloma treatment include:
- Blood clots
- Low blood counts, leading to anemia and easy bruising
- Tingling and numbness in your hands and feet (called peripheral neuropathy)
There are ways to treat them.
“We want patients to be able to stick to their routines to the extent that they’re able to,” says Sagar Lonial, MD, chief medical officer at the Winship Cancer Institute of Emory University.
To increase your odds of doing that:
Talk with your medical team about side effects before treatment begins. Avoid a Googling expedition. Ask your doctors which side effects you’re most likely to have. Also ask when they’ll probably happen and what can be done to ease them or keep them from happening at all.
“People get scared of the side effects before they’ve even had the drugs,” says Parameswaran Hari, MD, director of the Adult Blood and Marrow Transplant Program at the Medical College of Wisconsin. “I give patients only a list of common side effects and say, ‘You can expect them, but we can relieve them. There are rare side effects, too, so whatever you [have], call me.’”
Line up caregiving and emotional support. Because multiple myeloma gets worse over time, your needs probably will change. It’s important to find caregivers who can change with you.
After Dickey began treatment, he asked a friend’s wife to be his communications person.
“My parents would get a lot of phone calls, so I gave her a list of people who wanted to be updated, and at least once a month she’d write an email and blast it out,” says Dickey. “That would allow people who were concerned to know what was going on. If someone wanted to call me or my parents, they’d go through her.”
She also helped organize meals so that Dickey, a single father of three, would have one less thing to deal with during treatment. She put together a spreadsheet to track who would be delivering what each day.
“We had more stinking food than we knew what to do with -- so much that we’d make people stay and eat with us,” Dickey says.
Keep track of side effects -- during and after treatment. Side effects, no matter when they happen, are an important part of your care, even if they seem insignificant at the time.
“We have patients keep a diary and write down whatever happens,” Hari says. “Let’s say they get diarrhea one day. We don’t know if it’s the chemotherapy or something they ate. But if we see that they get diarrhea only on the day of chemotherapy, then we know it’s the chemo.”
Use whatever is most convenient to keep track: your phone, a notebook (digital or otherwise), or share with your note-taking caregiver.
That’s what Dickey did.
“I would tell my mom and she never forgot,” he says. “She’d remind me to ask doctors at my weekly visit.”
Communicate with your medical team. It doesn’t have to be your doctor.
“The team that’s caring for you can help you deal with some of the issues or concerns and provide reassurance,” Lonial says. “Everybody on your medical team has an area where they’re very good, and sometimes the non-physician can spend more time with you than the physician can.”
Pick an advocate. When Dickey was first diagnosed, his parents moved in with him to provide emotional support and help him make decisions about treatment.
“All the drugs can really mess with your decision-making ability,” he says. “When you’re on painkillers, you’ve got to have an advocate who keeps you straight on what reality is and help you decipher what’s real and what’s not. My parents knew what was going on with me 24 hours a day.”