Monday, September 16, 2024

I never gave up hope or my faith

One day in August 2013, I was with friends as my children, Hudson, Lola, and Bella, then ages 3, 5, and 7, were having a play date. I started to not feel well and, when I went to the restroom, I noticed I had blood in my stool. I knew this wasn't normal, so I called my doctor and then headed to urgent care. I figured they would run some tests and maybe prescribe some medication and I told my husband, Scott, that I would be home shortly.

Then the lab test came back and the results showed a platelet count of 1,000. The typical number of platelets in the blood is usually 150,000 to 450,000, so my count was incredibly low. The doctor even repeated the test, assuming the equipment must have malfunctioned the first time. It had not.

Instead of going home with a prescription in hand, an ambulance took me to the hospital. I was admitted and ended up staying for about 43 days. After nearly a month and a half and countless tests, I was diagnosed with Stage II diffuse large B-cell non-Hodgkin lymphoma. I came to learn that this is a type of cancer that affects your white blood cells, or lymphocytes, and that it's particularly fast-moving and aggressive.

As you can imagine, I was scared. At 32 years old, I was a young mom with a wonderful husband and three beautiful children, with so much life left to live. A cancer diagnosis was the furthest thing from my mind. But, I came to find out that this cancer typically responds well to treatment, and my disease was caught in a relatively early stage, which would increase my chances for survival.

I began a standard protocol of chemotherapy. Halfway through treatment, a scan showed no tumors. I was ecstatic, but about seven months later, tests revealed that the cancer had returned. Next was a stem cell transplant, which was just the hardest treatment that you could ever imagine. But my body wasn't responding the way it should and the cancer was still there.

The transplant was unsuccessful. I was driving my kids in the car when I got the news from my doctor that my transplant had failed. It took everything in me to hold it together for them. When I got home, I lost it. I was completely heartbroken. I knew I was quickly running out of options.

At this point, my chances of survival were incredibly low. In fact, I was given only six months to live, but I didn't even know it. A doctor had shared that with my husband, but he didn't tell me because he wanted to protect me as best he could from the scary stuff while I focused on my treatment. He knew how important it was for me to continue to have hope. Sometimes, when you realize how dire things are, you do become hopeless, and it's so much harder to fight when you're hopeless.

When we finally met with my doctor, he told me that my only option left was a clinical trial. The challenge was that this clinical trial wasn't available in my home state of Kansas yet, and my doctor didn't know if I had enough time to even make it. You'd think that I would have been distressed by that news, but in that moment when faced with this life-or-death situation, all I felt was hope and faith instead of fear. I knew we would find a way.

This clinical trial, ZUMA-1 as it was called, was exploring an entirely new way of treating cancer in 2015 that the doctors told me was my best—and maybe only—chance for survival at that point. It was an immunotherapy called Chimeric Antigen Receptor T-cell therapy, or CAR T-cell therapy. This one-time therapy is designed to use my immune system to fight the cancer.

CAR T-cell therapy involves using your own T cells, a type of white blood cell, which were collected through a process called leukapheresis—blood withdrawal—and sent to a manufacturing facility where they add receptors to those T cells that match the protein on the cancer. These "supercharged" T cells are then infused into the body to fight the cancer.

My local hospital wasn't participating in this trial, so I had to travel to a hospital in Houston. I hopped on a plane to see if I qualified for this trial. I was a perfect fit and was quickly enrolled.

Nearly two years after my cancer journey had begun, I became just the third person in the world to take part in the clinical trial. ultimately this treatment developed by Kite Pharma became the first CAR T-cell therapy approved by the U.S. Food and Drug Administration in 2017 to treat the type of cancer that I had. By participating in the clinical trial, I helped pave the way for thousands of blood cancer patients like me who have been successfully treated since.

Within a month, scans showed that the cancer was gone. The same thing at 18 months. And now, nine years later, I'm still cancer-free. I never gave up hope or my faith, both in God and in the incredible doctors who were treating me. I'm grateful to be a survivor and for the opportunity to be a part of something as revolutionary as CAR T-cell therapy.

I truly feel that I'm here for a reason, that it wasn't my time to go. I believe that there were things that I was meant to accomplish, and I feel a responsibility to use my experience to help others.

I've been actively involved with the Leukemia and Lymphoma Society, as have my children who grew up with their mom fighting this battle. Over the years, we've helped to raise more than $200,000 for research. I never imagined that I could be passionate about something like this, but I just feel like that was part of what I was called to do in order to give back.

Today, I'm healthy and Scott and I are happier than we've ever been. Our children are now 18, 16, and 14. Bella just started college, Lola is playing on her high school golf team, and Hudson wants to be an oncologist. I think back on the years dealing with my cancer and just trying to survive, and I feel like I missed a really special time in my family's life. That makes me appreciate the time we have now even more.

I remember thinking that I could never imagine being normal and healthy again, and that I'd never be able to get back to a normal routine. I now know that my life isn't completely the same and I've changed as a person because of this experience. People often ask me about it, and I tell them I wouldn't take it back or go back in time and not have cancer, which may seem shocking. But it helped me look at life differently and I've grown—we've all grown—so much because of that and I would never want to take that away.

Emily Dumler was diagnosed with stage II diffused large B-cell non-Hodgkin lymphoma at the age of 32 in 2013 and given six months to live. With no other approved treatment options available, Emily was brave enough to try CAR T-cell therapy that was in clinical trial stages at the time. Within a month of the trial, Emily was declared cancer-free and remains so to this day. CAR T-cell therapy is now an approved treatment.

https://www.newsweek.com/i-was-given-six-months-live-wasnt-told-1948620

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