Hodgkin lymphoma, leukemia survivor: Targeted therapy clinical trial put me in remission

By the time I got to MD Anderson in March 2021, I’d already been through two cancer diagnoses, three relapses, six types of chemotherapy and two stem cell transplants. I was only 21.

But I’d exhausted all the treatment options near my home in Lithuania. I was worried I wouldn’t be able to watch my sisters’ children grow up, see the world or care about some of the same things my peers did.

Then, I heard about a targeted therapy clinical trial at MD Anderson. That gave me hope.

My first cancer diagnosis: Hodgkin lymphoma

I was first diagnosed with cancer three months before my 17^th birthday. That was in February 2016. My parents had taken me to the doctor for a swollen lymph node near my left collarbone. We were all astonished when the test results showed I had stage II Hodgkin lymphoma.

I had three cycles of chemotherapy at a local hospital in Lithuania. That put me in remission. I got back to my schoolwork and started preparing to study architecture at Cardiff University in the United Kingdom.

But after one year of classes, my bloodwork came back abnormal during a routine checkup. I was diagnosed with treatment-related acute myeloid leukemia in 2019.

My second cancer diagnosis: treatment-related leukemia

Being diagnosed with cancer a second time was much scarier than the first. By then, I knew how hard cancer treatment could be. But I made it through another round of intensive chemotherapy, followed by a stem cell transplant using cells from an unrelated donor. That put me in remission again.

In 2020, though, the leukemia relapsed. My doctor treated it with a combination of targeted therapy and chemotherapy. I went into remission briefly. When I had another relapse, he treated it with a combination of targeted therapy and another stem cell transplant. This time, the cell donor was my elder sister. After a very short remission, I relapsed a third time.

Why I joined a targeted therapy clinical trial at MD Anderson

By that point, I was starting to feel hopeless. My doctor said we’d exhausted all available treatment options in Lithuania. The most he could offer me then was palliative care, with the idea of slowing down the cancer for as long as possible.

I felt like I was in a bad movie. I remember crying hysterically. I couldn’t believe that death was imminent when I was only 21 and had many dreams and goals to pursue.

Then, a few days later, I got some exciting news. My doctor found a new clinical trial at MD Anderson led by leukemia specialist Dr. Ghayas Issa, and he contacted him for advice. Dr. Issa was testing a new type of targeted therapy called a menin inhibitor, which targets the abnormal fusion of chromosomes causing my leukemia. If I qualified for it, the clinical trial might give me another shot at remission.

My acute myeloid leukemia treatment

I really, really wanted to try it. And my doctor thought I’d qualify. So, in 2021, I made the 5,500-mile trip with my sister to MD Anderson. I met with Dr. Issa and his clinical trial nurse, Allison Pike. I was really nervous, but they made me feel safe.

They explained that the targeted therapy drug I’d be on works by blocking the interaction of a specific protein called menin with the leukemia cell engine switch. I’d take the drug for several months and have a third stem cell transplant, then restart the drug again after the transplant.

I started taking the medicine as a liquid at first and later as pills twice a day. It put me in full remission after only a few months. When Dr. Issa told me that the drug was working, I was so happy. I felt like I was born again.

That news cleared me to have my third stem cell transplant on Aug. 17, 2021. I’ve been taking the medicine in pill form ever since. 

What this clinical trial has allowed me to do

I am only the second patient in the world to start taking this drug after a stem cell transplant. That scares me a bit because the drug is so new. But it feels good to know I’m helping advance cancer treatment. And, over the last few years, I have learned to trust life. So, I have to trust it now as well.

At the beginning of the clinical trial, I had nausea, fatigue and differentiation syndrome, which is sometimes experienced by leukemia patients after receiving targeted therapy. In my case, it involved fever, shortness of breath and bone pain. But with the leukemia now gone, I don’t have any side effects at all.

Aside from one week of university classes I missed while traveling to Houston, I was able to keep up with my studies. I graduated with a bachelor’s degree in architecture this past summer and am starting a master’s degree program this fall.

What having cancer taught me

Having cancer so many times was very stressful, but it also taught me a lot. I used to be so scared that I’d miss out on life. Then, I realized being afraid was only making me miss out on more. So, I learned the art of taking small steps and trusting that everything would be OK.

Since then, I have traveled the world, experienced university life, graduated and met many amazing people — especially my two wonderful doctors, who’ve devoted their lives to helping cancer patients like me. I still have much more to do on my bucket list, including a pilgrimage to Santiago de Compostela in Spain. But I’m also determined now to make the world a better place. Thanks to MD Anderson, I’ll get that chance.

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