Multiple myeloma is a tough road to walk. We spend time documenting people's journey here. In this blog, we’ll walk through how Laura and her daughter (Renee) faced this journey firsthand. Laura’s story is one of resilience, family-centered, and full of advocacy. She was diagnosed with a serious cancer that affects plasma cells. Laura’s journey began with a series of unknowns. Many misdiagnoses, delayed care, and eventual treatment offers valuable insights for patients, caregivers, and loved ones facing similar challenges. If only, her doctors took a test to see her calcium, would they have found out she has multiple myeloma. If you’re interested in watching her story, learn more here.
Their story isn’t just about battling a rare blood cancer, but also serves as a reminder of the power of speaking up, understanding your options, and getting the right care at the right time. One theme you will see in this story, is how powerful accessing resources is in people's journey. Join Patient Connect, to meet other multiple myeloma patients.
Initial Symptoms and Delayed Diagnosis
Laura’s experience with multiple myeloma started with severe back pain—the kind that would stop anyone in their tracks. You’d think a few visits to the local emergency room would help get to the bottom of it, but Laura’s first few trips left her with more questions than answers. After four separate ER visits where they focused primarily on managing her pain with strong drugs, no one had taken a decisive blood test. Every time, it was attributed to muscle strain or osteoporosis. But when weeks passed without relief, the situation became dire.
It wasn’t until Laura's granddaughter took matters into her own hands—and drove Laura to a larger, specialized hospital—that things started to change. At Barnes-Jewish West (part of the BJC Healthcare system), the team knew something was off immediately. Blood tests quickly revealed that Laura wasn’t just experiencing back pain—she had multiple myeloma.
This missed diagnosis delayed her eventual treatment by several months, highlighting a critical lesson: Don’t settle. If something doesn't feel right and you're not getting answers, push for better tests and a second opinion. It could save your life.
The Role of Specialized Care in Better Outcomes
The turning point for Laura’s health came when she saw a multiple myeloma specialist. Alan Stepehnson who shared his journey recently is a big advocate for After finally receiving proper care at a Multiple Myeloma (MM) Specialty Center in St. Louis, things moved quickly. Within minutes of arrival, the doctors had narrowed her condition to potentially two diseases, one being multiple myeloma. Further tests confirmed what had gone undiagnosed for months.
The switch from a community hospital to a specialized institution saved valuable time and set Laura on the path to recovery. The team at Siteman Cancer Center, a smaller yet highly specialized facility, became an extension of her family. Unlike larger hospitals where she felt more like a number rather than a person, here she was treated with empathy, and the care was personalized.
Their story underlines this important takeaway: Always seek specialized care for something as serious as myeloma. The level of expertise can mean faster, more accurate diagnoses, and care that takes all aspects of the disease—and the patient's life—into account.
Dealing With Complications and Missteps
Even after the correct diagnosis, the road ahead wasn’t clear or easy. Laura developed sepsis, a life-threatening complication, while waiting for chemotherapy. For six long weeks, she couldn’t begin cancer treatment because of the infection. Beyond this, she suffered more complications, including multiple fractures and hypercalcemia, a condition where too much calcium builds up in the blood.
Through all of this, Laura knew the importance of staying the course and relying on her specialists. Each time a new hurdle appeared in her journey, whether sepsis or additional fractures, her team adjusted the treatment plans accordingly.
This leads to a critical lesson: Cancer treatment is rarely a straight line—expect setbacks, but trust your care team.
The Emotional Toll and Family Support
One of the most heartbreaking parts of Laura’s experience was the emotional struggle she went through during the first few months. Google searches about multiple myeloma brought nothing but grim statistics. No one could explain her condition to her clearly, and as a result, her family felt lost. It wasn’t until months into her treatment that an oncology specialist took the time to sit down and explain the disease to them.
Renee, Laura’s daughter, became her strongest advocate. In fact, it was Renee’s own daughter who finally convinced Laura to go to a bigger hospital where the necessary tests were done. The role of their family in Laura’s care shows why having a solid support system can be life-changing.
In many ways, family and community are crucial. Without the presence of loved ones to advocate and push for better care, it's easy to get lost in the complexity of the healthcare system. And as a patient, don’t feel guilty about needing help. If you’re struggling, let your family step in. You can’t do it alone.
The Importance of Patient Advocacy
Patient advocacy played a key role in turning Laura’s situation around. If it weren’t for her family’s persistence and refusal to accept incomplete explanations, Laura may have faced even greater delays in her diagnosis and care. The lesson here is clear: You have to advocate for yourself, even when it feels uncomfortable.
With multiple myeloma specifically, early and correct diagnosis followed by targeted treatment can make all the difference. Don't shy away from switching hospitals or doctors if your care is lacking. Specialized hospitals and cancer centers have doctors that better understand the nuances of the disease and can offer treatment plans personalized to your situation.
The Power of Online Communities
Life-changing information doesn’t always come from a doctor. For Renee, finding a YouTube video from another multiple myeloma patient, Alan Stevenson, gave her the first glimmer of hope. Later, Laura and Renee became active in the Multiple Myeloma Warriors group on Facebook.
Patient communities often provide current, real-life info that you can’t find with a quick Google search. You’ll find out about new treatments, symptom management tricks, and get emotional support from people who truly understand what you're going through.
Advice for Other Multiple Myeloma Patients
Laura’s advice is simple but powerful. First, if you suspect something’s wrong, trust your gut. Push for more tests, go to bigger hospitals, and don’t accept incomplete answers. Finding the right specialist and the right treatment can change everything.
Second, focus on building relationships—both with your healthcare providers and within support groups. The nurses and doctors at Sitman Cancer Center didn’t just treat Laura; they genuinely cared for her, and that made all the difference. Similarly, patient groups can provide empathy, shared experience, and up-to-date information that might open doors to new treatments.
Lastly, be a little selfish. You’re dealing with an enormous challenge, and you need to advocate for your well-being. That might mean saying no to something or someone when it becomes too overwhelming. Don’t be afraid to prioritize your health above everything else.
What To Take Away from Laura’s Story
Laura and Renee’s journey through multiple myeloma shows us how vital it is to get the right care early. The delay in Laura’s diagnosis cost her months of treatment and pain, but once they found the right specialist, the path forward became clearer.
Multiple myeloma is a complex disease, and navigating its treatment options can be overwhelming. You don’t have to go through it alone. Online communities, family support, and specialist care can make all the difference.
Remember, advocating for yourself and getting the right information is critical. If something doesn’t feel right, don’t hesitate to push for more. You deserve the best care possible.
If you're a patient or a caregiver, consider exploring Patient Connect, a free resource to help you find support and education about multiple myeloma. Here’s to Laura and Renee’s takeaway: “No one fights alone.” Stay connected, stay informed, and keep pushing.
Share Your Story
Have you or a loved one experienced multiple myeloma? Share your story by joining Patient Connect and connect with others who are walking the same path. Together, we are stronger.
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