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Getting Support for Multiple Myeloma

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When 69-year-old Keith Guernsey from Gainesville, GA, first found out he had multiple myeloma, it was a complete shock. He’d just gotten past prostate cancer surgery and was looking forward to putting cancer behind him. He hadn’t noticed any signs of another health problem. But, blood tests his doctor ordered related to the earlier cancer led to the unthinkable: Guernsey was facing a new, and this time treatable but incurable, cancer diagnosis.

“My wife became my sole caregiver because the rest of my family is scattered,” Guernsey says.

He took advantage of online support groups, where he met people all around the country at all different stages of multiple myeloma. He found special inspiration in a woman in California whose initial diagnosis was stage IV multiple myeloma.

“She was told to get her affairs in order — that she had 6 months to live,” Guernsey said. “She’s been in remission for 20 years. So, she gives me and others a lot of hope. It’s a very supportive group.”

Finding Resources

While multiple myeloma is a rare cancer, there are lots of resources available to support people who have it. A good place to start is your own care team, says Jason Valent, MD, a myeloma specialist at Cleveland Clinic. In addition to specialists in myeloma, he says care teams include palliative care specialists to help with the pain as well as psychologists and psychiatrists to help you cope with the diagnosis.

“That’s a very important thing for patients to have access to,” Valent says. “The emotional pain is oftentimes just as bad or even more severe [than the physical pain].”

Michelle O’Hare, RN, an oncology nurse who cares for myeloma patients at Memorial Sloan Kettering Cancer Center, says those who need extra support can talk to a social worker, who can connect you with transportation help and other assistance. A case manager can be helpful if you’re in need of nursing care at home. She also recommends support groups, which may be in-person or online.

“I always tell patients that they can google multiple myeloma support groups and get a whole list,” O’Hare said. “That’s the beauty of the internet.”

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Online organizations that offer help for people with myeloma include:

  • Myeloma Crowd by Healthtree
  • Multiple Myeloma Research Foundation
  • International Myeloma Society
  • Leukemia & Lymphoma Society (LLS)

“LLS can provide not only patient resources in terms of support groups, but also financial assistance for copays,” Valent says.

In addition to support groups, some organizations can connect you with a one-on-one mentor or coach. For instance, the coaches at Myeloma Coach by Healthtree are myeloma patients or caregivers who stay in touch with you, listen, and offer guidance on financial aid, online resources, and more.

Finding Your Own Way

When deciding among your many support options, Urvi Shah, MD, a myeloma specialist at Memorial Sloan Kettering Cancer Center, says you should be true to yourself.

“Patients should be careful to pick what’s right for them,” Shah says. “For some, support groups are helpful. They want to know what lies ahead and it reduces stress. For others, hearing too much worsens stress and anxiety. Knowing what type of personality you have can help you to decide if you want to reach out and to whom.”

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Amy Pappas of Cleveland, OH, found out she had multiple myeloma at age 45, after intense back pain sent her to a spine specialist. It turned out the cancer had cracked her spine. It was also in her ribs, pelvis and skull. For support, instead of online groups, she relied on a close network of friends and family.

“Even though I did feel really sick [at times during treatment], I just kept going,” Pappas says. “That’s my personality: trying to feel normal as I was getting better. Distractions were huge for me. I could say to my friends, ‘Hey, I feel like crap, but come over and distract me.’”

She also took advantage once or twice a week of the yoga classes that Cleveland Clinic offers for people with any cancer type. The classes were relaxed and small and included people at all different stages in their cancer journey.

“Being around those people did feel good,” she says. “It was a nice outlet and different from being in a regular yoga studio.”

Coming Full Circle

Guernsey is now in his second year of remission. He says he’s feeling as good as he’s felt since he was 28 and still playing hockey. He still has regular Zoom calls with folks he met through an online support group. He also serves as a myeloma coach for others who are going through the same things he has.

“I’m not a doctor, so I don’t pretend to be,” Guernsey says. “But I share my experience and try to let them know what worked for me. It can also work for them.”

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