Miguel’s Journey: Embracing CAR T-cell Therapy as a Latinx Myeloma Survivor
Miguel’s Journey: Embracing CAR T-cell Therapy as a Latinx Myeloma Survivor from Patient Empowerment Network on Vimeo.
Myeloma survivor Miguel wasn’t experiencing any symptoms when he received his shocking diagnosis. Watch as he shares his experience as a Latinx myeloma patient dealing with testing, multiple lines of treatment, and CAR T-cell therapy – and how to stay [ACT]IVATED in your care.
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Related Resources:
What Is the Impact of CAR T-Cell Therapy Access Barriers on Patients? |
CAR T-Cell Therapy Follow-Up Monitoring | What Patients Can Expect |
Transcript:
Being ACTIVATED in CAR T-cell therapy care is critical for patients and families. My name is Miguel and I want to share my story as a myeloma survivor and Latinx man. Even though CAR T-cell therapy has improved survival rates for myeloma patients, some disparities to treatment access still persist.
I was 52 when I was diagnosed with smoldering myeloma, and my diagnosis came as a complete shock. I wasn’t experiencing any symptoms, and my doctor only discovered my condition after noticing that something looked abnormal in my blood work. After ordering further testing, my diagnosis was confirmed with a bone marrow biopsy. That was just the start of my long journey. My hematologist informed me that several rounds of chemotherapy would be best for my first line of treatment.
After I finished my rounds of chemo, my hematologist continued to monitor my tests closely for signs of recurrence. When my tests reached concerning levels, my doctor then recommended that I move forward with an autologous stem cell transplant – taken from my own stem cells.
Those were just my first two lines of therapy. My third line of therapy was an immunotherapy as part of combination therapy that worked for nearly two years. An allogeneic stem cell transplant – with stem cells taken from a donor – was recommended next. That second stem cell transplant kept my myeloma at bay for about two years. It was a nice break, and I was able to qualify for a CAR T-cell therapy when it came time to act on my fifth line of treatment. I had learned from my myeloma support group that patients need to have a lot of support to qualify for CAR T.
Patients need to have a care partner to support them, and I was fortunate enough to have my sister stay with me to help me with my appointments and recovery. CAR T-cell therapy has made the future brighter for so many myeloma patients.
There have been a lot of recent advancements in CAR T-cell therapy for myeloma. I hope that sharing my story will make a difference for other myeloma patients who may have some mistrust of doctors. Remember, become empowered and stay [ACT]IVATED with these tips.
[ACT]IVATION tips for CAR T patients:
- Ask your care team questions to learn about the status of your myeloma, treatment options, and what to expect during and after treatment.
- Inquire if a clinical trial may be a potential treatment option for your myeloma.
- Join a patient support group to offer and receive emotional support.
- Stay updated about myeloma treatment options and research advancements.
Being proactive is an essential step in your myeloma journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.
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