From Leukemia Diagnosis to Life After Transplant

Amanda’s cancer story began unexpectedly, with a visit to the emergency room that would ultimately change the course of her life. Initially dismissed as fatigue, her symptoms quickly escalated into a leukemia diagnosis that forced her to confront fear, uncertainty and the reality of undergoing aggressive treatment as a young mother.

In this conversation with CURE, Amanda reflects on the emotional weight of that moment, her determination to fight for her future and the long-term impact of chronic graft-versus-host disease (GVHD).

CURE: Thank you so much, Amanda, for joining us here today with CURE. I'm so excited to get to speak with you and learn more about your journey.

Amanda: Thank you for having me.

CURE: How are you doing today?

Amanda: I'm doing okay. The weather is not helping the graft-versus-host disease, so I'm a little sore and have a dry mouth today, but I'm alive and I'm here, and I'm so grateful.

CURE: There you go. Well, to jump right into it: can you take us back to the moment you were first diagnosed with leukemia? What was going on in your brain, and how did you go from there?

Amanda: I was actually diagnosed in the emergency room. I went to the ER in March of 2017 not feeling very well, and they told me I was run down because I had a young child and I was very fatigued. They told me, "You know, just rest, you'll be fine."

Three months later, I went back in May 2017, and they found I had a lot of white blood cells in my blood. The ER doctor told me I had leukemia and that I needed to start right away with medication. I did get another opinion, so I went to another hospital, and then that is where we truly found out the extent of the diagnosis and started treatment right from there.

It was a whirlwind. It was scary. I was a mom to a three-year-old, and it was just hard. I was so scared and so nervous that I didn't know what was going to happen, because that "C" word is so scary. You think "cancer, death," and so for me, I just knew I really wanted to fight because, like I said, I had my son there. I wanted to see all those milestones: graduating from high school and college, getting a car, getting married, all of those things. That's what was in my mind at the time of diagnosis: to fight.

CURE: Yeah, absolutely. It is a scary thing, so thank you for walking us through what was going on in your brain. Also, second opinions are so important, so thanks for highlighting that, too.

Amanda: Of course.

CURE: Moving forward, your bone marrow transplant in 2018 was a life-saving milestone. Can you walk us through what that experience was like for you, both physically and emotionally?

Amanda: So, when the doctor told me that I needed to have a stem cell transplant, my hospital actually had different things that I needed to pass in order to receive it. I spoke with the doctors, did the physical, and made sure my heart was okay to undergo treatment, but I also spoke with a therapist, because cancer isn't just physical — it's also emotional and mental. My hospital, my doctor, and the staff wanted to make sure that I was physically and mentally ready to go through such a life-changing thing with a second chance at life.

I was able to have a gracious man from Germany who is my stem cell donor, whom I absolutely love and admire, because I truly feel like he saved my life. He gave me a gift, a gift that is rare and I'm just so thankful for. But I was scared again, because there are a lot of things that go into having a stem cell transplant. Sometimes you have so much chemo that your body hurts, and sometimes mentally you're not ready to go through that.

A lot of people think it's just chemo, and you put it in the IV and you're okay. Yes, it can be like that for some people, but then you have something like graft-versus-host disease come up after your transplant, and that can be hard to navigate. For me, it was a little harder to navigate. I got the stem cells, but then the weeks and months after were a lot different, and it was really difficult to go through that.

CURE: Although many people view transplant as the finish line, like you were saying, it's a process and it's difficult. When did you first realize something wasn't right and that you were developing something called graft-versus-host disease, or GVHD?

Amanda: Honestly, a few days after the transplant, my skin started getting really itchy and flaky. We just kind of thought it was dry skin from all the medications and everything that I had taken. About three months in, while seeing a dermatologist, they did some testing and said, "We believe this is something called graft-versus-host disease." I had to be super careful.

Now, the first 100 days of the treatment for graft-versus-host disease and the stem cell transplant — usually that first 100 days is super... I don't want to say scary, but you take it day by day. Once you hit that milestone, it's so amazing because you don't know what's going to happen. You don't know if it's going to take. You have to be careful of sunlight, take all your medications, and make sure you don't get a fever.

Basically, you become a baby all over again because they wipe out your whole immune system and give you a brand-new one. Your body has to figure out if it's good for it, if they're going to help each other, or if they're going to butt heads, which is when you find the graft-versus-host disease.

About three months in, it was my skin. Then after that, certain foods started hurting my stomach. I swelled like I was six months pregnant; my stomach would get huge and it was so painful. For me, swelling is painful. With the diarrhea, throwing up, and pain, I unfortunately had to go to the gastroenterologist. I had an endoscopy and a colonoscopy and found out that I did have chronic graft-versus-host disease in my gut, or gut GVHD. Then I started having pains in my limbs: my knees, my elbows, and my joints were really bad.

I would say between nine months to a year after the transplant, I found out I had chronic graft-versus-host disease in my bones and joints, which causes me a lot of pain, especially on days I'm flaring up. For example, if I am outside playing with my son and it's a beautiful day, I know the next two or three days I'm going to have to schedule time for myself because if I exert a lot of energy, my body doesn't just bounce right back.

Disclosures: Amanda is a paid Sanofi spokesperson and was engaged to share her story with chronic GVHD, but individual experiences may vary.

Transcript has been edited for clarity and conciseness.

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