Diagnosed with Myeloma at 34: Thomas Shares His Stem Cell Transplant & Clinical Trial Experience (https://www.myeloma.org/videos/diagnosed-myeloma-34-thomas-shares-his-stem-cell-transplant-clinical-trial-experience)
How a Clinical Trial Changed Thomas' Life
At Just 34, Thomas Goode Was Diagnosed With Multiple Myeloma After Initially Being Misdiagnosed With Bursitis
Facing a life-changing diagnosis, he underwent two stem cell transplants, one using his own cells and another with his brother’s and participated in a clinical trial that helped extend his life.
Thomas shares the physical and emotional challenges of treatment, the importance of faith, family, and support, and how his journey has turned him into a source of hope and inspiration for others living with myeloma.
Watch Thomas’s story to learn more about:
- Early signs and misdiagnosis of myeloma
- Stem cell transplants and clinical trial options
- Coping strategies for patients and care partners
- How one person’s journey can inspire others
Thomas’s message: Myeloma doesn’t have me—I have myeloma.
Learn more about clinical trials and support for myeloma: https://www.myeloma.org/sparkcures (https://www.myeloma.org/sparkcures)
Being an athlete, I know my body, I can tell a difference between certain pains, and this pain was something that I had never felt before. It wasn't like it was a workout pain. So I was nervous going into the doctor's office because I didn't know what to expect. All he did was he moved my arm up and down. He pulled against me, he pushed down, he pushed up, and then he just said, "Okay, you have bursitis," and he wrote me a prescription for some pain medicine.
So as I left, I was like, "I really don't like that diagnosis." I felt misdiagnosed. He looked at my physical appearance and he said that, "This is a young Black man that's muscular, it can't be nothing else but bursitis." I was already considering finding somewhere else to go, but I knew that my orthopedic specialist had seen me before and I knew what he'd do for his normal protocol, a x-ray and a MRI. When the results came back, he told me that I had a plasma cytoma.
So I said, "Break that down for me." He said, "That's a cancerous tumor that's isolated in one area." I asked him, I said, "You telling me I have cancer?" And he said, "Yes." I went blank after hearing those words. I was diagnosed with multiple myeloma at the young age of 34 years old. I was thinking, "Am I gonna die?" because it's a cancer diagnosis, that's what most people think when they hear the words, "You have cancer." Average lifespan for newly diagnosed patients was three to five years.
My doctors said that I was still young, so I was a prime candidate for a stem cell transplant. So we had a autologous stem cell transplant, autologous meaning using my own cells. Unfortunately, the cancer came back after a few months. My doctor said that I was still a prime candidate for another stem cell transplant, but this time, they was gonna use my family. My oldest brother was a perfect match. So as he and I started our journey, we both was in treatment together. After we finished the treatment, I got his cells back via a clinical trial and he was there for me as my support.
At first, I was hesitant about joining the trial because I really didn't know anything about it. But you never know what happens until you actually start taking the medication. It was vigorous, you know, because it was a lot of treatment. My faith, my family and my friends were the reason that I made it through that stem cell transplant. I want others to see that myself has been on a trial. If I can use my journey to elevate someone else's journey, to live their life longer by being on a trial, hopefully that can help them make that informed, educated decision to be on one themselves. I never thought that I'd make it this far, to be honest. That strength comes from the drive to live, the drive to be a voice, the drive to help others.
I've never thought that I'd be a role model for anybody outside of my children, but I have become a role model for people that don't even have any type of disease. I can be in the gym and they can see me in there laughing and smiling and joking, and then they're complaining that they're there. I call 'em weak and I tell 'em what they're doing. And then when I out-lift them, then I tell 'em I have cancer, I take chemotherapy, I take medicine every night before I go to bed, and I have treatment every other week, and then they're embarrassed. And then they'll be like, you know, "You inspire me." That helps motivate me to keep doing what I'm doing because it shows that what I'm doing is positive and it's helping other people. It makes me feel like I have a purpose. Myeloma don't have me, I have myeloma.
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