Multiple myeloma survivor: Having additional treatment options gives me hope

I was diagnosed with multiple myeloma at age 48, after some blood work from an annual checkup came back a little wacky.

My doctor said the reason for my weird blood work could be something called MGUS (pronounced “MUG-us”). That stands for “monoclonal gammopathy of undetermined significance.” It just means my bone marrow is producing an abnormal protein, which can be detected in my blood.

People can live with MGUS for years without having any real problems. But that condition can also be a sign of multiple myeloma. My doctor wanted me to be tested to find out for sure if I had it. Since I’d always been healthy before that, I kept putting it off.

I finally got tested about a month later. The results showed I had multiple myeloma. I was shocked. My older brother had had Hodgkin lymphoma. But neither multiple myeloma nor Hodgkin lymphoma is hereditary. And no one else in my family has ever had cancer.

My multiple myeloma symptoms

Looking back now, I suppose I did have some symptoms of multiple myeloma before my diagnosis. But there was no big “a-ha” moment.

I ran 5 to 7 miles a day. So, when I started feeling short of breath, I thought I was getting out of shape. When I started feeling tired, I attributed it to work. And when I started losing weight, I didn’t bat an eye. After all, who doesn’t say, “That’s great!” when they notice they’ve lost a few pounds?

Why I chose MD Anderson for multiple myeloma treatment

I chose MD Anderson for my multiple myeloma treatment because it’s known for leading the latest research. Its doctors live and breathe that stuff. And they do a lot of clinical trials as a result. So, I wasn’t really surprised when I was offered a clinical trial earlier this year.

My current clinical trial involves CAR T cell therapy, a cutting-edge cancer treatment. And though it’s still being tested for multiple myeloma, it’s already shown success in treating patients with lymphoma and leukemia. That’s why my whole family was thrilled when we found out I qualified for a CAR T cell therapy clinical trial.

Why I joined a CAR T cell therapy clinical trial 

The clinical trial I’m on right now is not the first treatment I’ve received for multiple myeloma at MD Anderson — or even the first clinical trial I’ve ever been on there.

After my initial diagnosis in June 2015, I started out with chemotherapy and a stem cell transplant, but neither kept the cancer at bay. After that, I joined a targeted therapy clinical trial, but eventually, it stopped working, too. I’ve tried several more combinations of chemotherapy since then, but my blood work kept going in the wrong direction.

That’s why Dr. Krina Patel suggested the CAR T cell therapy trial.

A CAR T cell therapy clinical trial put me in remission

I have a lot of faith in Dr. Patel. She is a research guru, and I really trust her judgment. So, when she recommended this clinical trial, I decided to do it. After all, other people had participated in clinical trials before me. And it would be an honor to be able to repay that in some way. If I could help just one other person, I knew it would all be worth it.

I prepared for CAR T cell therapy by getting high-intensity chemotherapy for three days beforehand. I had the CAR T cell infusion on May 19, 2020. After staying in the hospital for two weeks, I remained in Houston for another 30 days to recover. I’ve been in remission ever since.

MD Anderson’s constant advancement gives me hope for the future

Today, I feel very grateful for the quality of care I received at MD Anderson. And I am elated to be in remission.

But I also know that multiple myeloma is not like a solid tumor, so you can’t just take it out. It’s a blood cancer. That means even if I achieve remission for a while, there’s always a chance that it could sneak back later.

I’ve now been on some form of treatment for my cancer for the last five years. And I’m still here. So, that alone is pretty encouraging.

It’s also encouraging to know that I’m receiving my multiple myeloma care at a place that’s leading innovation in treating this disease. That gives me a lot of hope.

Dr. Patel says there are plenty of new drugs coming out, so I am nowhere near running out of options. Even if the CAR T cell therapy doesn’t work forever, I still have choices. And knowing that is very comforting.

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