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My Tips for Coping With Relapsed Myeloma
Sherrie Nickeas, who has lived with multiple myeloma for more than 11 years, shares her journey of resilience, emphasizing the importance of staying proactive with treatment, asking questions, and maintaining a fulfilling life beyond her diagnosis.
00:00:00:00 - 00:00:37:00
Sherrie
I don’t feel like I'm just a multiple myeloma patient. I am a painter, grandmother, mother, wife, sister, friend, and I feel complete in all those activities. My name is Sherrie Nickeas, and I live with multiple myeloma for 11 and a half years. Since the original diagnosis, I’ve had at least 14 relapses. I look at the myeloma like it’s an old soldier, and it knows all the tricks.
00:00:37:02 - 00:01:05:14
Sherrie
You have to be one step ahead of it. Have blood work, get hydrated, make sure every vital is working correctly. The secret is monitoring it. You don’t want it to get out of control. Listen to your doctor. Ask questions about why they’re changing treatments. What markers are making them make that decision? And I always ask every time I see my doctor, what is on the horizon?
00:01:05:16 - 00:01:33:06
Sherrie
What are they looking at now? What is coming out? There are many treatments that are out there and available to patients at this time, and if one fails and you relapse, there’s usually the next one to go to. It’s a marathon. It’s not a sprint. Sometimes you want to jump out of a treatment quickly, but you learn that you don’t want to burn through protocols or treatments.
00:01:33:08 - 00:01:59:04
Sherrie
Keep every option you have available to you as long as possible. So with each treatment, there are certain symptoms that you’re going to have to deal with. As long as it’s tampering down the myeloma, then you should try your best to stay on it, but if you can’t, then it’s time to move on. When I’m not in my treatment mode, I’m actively engaged in my family, my art.
00:01:59:06 - 00:02:22:07
Sherrie
You need an activity that takes your brain away, where three hours goes by and you haven’t thought of medications, you haven’t thought of protocols, you haven’t thought of doctors. Whatever it is that makes you engage like that because if you just look at yourself as a patient, that’s all you’ll be. You have to look at yourself as a whole person.
00:02:22:09 - 00:02:31:10
Sherrie
We’re not just our illness. We’re everything. Learn more and connect at MyMyelomaTeam.com.
When Sherrie Nickeas was diagnosed with multiple myeloma 11 years ago, she thought, “There’s just no way. The doctors are mistaken.”
She felt fine. Her kids were teenagers, and she was working at a job she was passionate about.
Unfortunately, since beginning treatment for multiple myeloma, Sherrie has relapsed (her cancer has returned) at least 14 times. “Fourteen times, I’ve had to hear those words: ‘The myeloma is going back up.’ When you hear it, your heart sinks,” she said.
Over time, Sherrie has learned how to handle myeloma relapses. She gets regular monitoring and reports any symptoms or side effects she notices. She also sticks with each treatment for as long as possible to keep her future options open.
“Sometimes, you want to jump out of a treatment quickly because it’s causing problems for you, but you learn that you don’t want to burn through treatments,” she explained. “As long as it’s tamping down the myeloma, you should try your best to stay on it. But if you can’t, then it’s time to move on.”
Sherrie noted that it’s important to stay engaged with your cancer care team, let them know how you’re feeling, and ask questions about treatment decisions.
Many newer treatment options are available, and learning about them can help you prepare for treatment discussions. “I always ask every time I see my doctor, ‘What is on the horizon? What are they looking at now? What is coming out?’” she said.
Sherrie summed up her experience: “One of the biggest things I’ve learned on this journey is that it’s a marathon. It’s not a sprint. You’re not going to cure it in one go. It’s a lifetime of fighting the disease.”
Overall, Sherrie stays focused on what’s most important to her — her children, grandchildren, and husband. “When I look at them, I see the future,” she explained. “And I want to be a part of that future.”
Watch the video to learn about Sherrie’s tips for managing relapsed multiple myeloma.
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Hi Sherrie, I would like to know if you have ultra high risk cytogenetics or high risk and this may be the reason that you have relapsed?
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Almost at the 30 year mark... still having chemo but living life. Hoping for a future without chemo.
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