Rare double-hit leukemia survivor: ‘Go straight to UT MD Anderson’

Normally, leukemia is a disease that strikes old people and babies. So, when I was diagnosed with chronic myeloid leukemia in November 2022, I was shocked. There is zero history of cancer in my family. At the time, I was only 36.  

I was even more shocked to learn that I had not just one form of leukemia, but two: chronic myeloid leukemia and acute myeloid leukemia.  

Having two different types of leukemia at the same time is so rare that the first hospital I went to didn’t even know it was possible. But the doctors at UT MD Anderson recognized it right away. They also saved my life. 

My unusual leukemia symptoms 

Looking back now, I likely had other symptoms. But the way I found out I had leukemia was kind of crazy, too.  

I’d had corrective eye surgery done in my early 30s, so my vision was supposed to be 20/20. Then, one day, I realized I couldn’t see the numbers on my phone while playing Sudoku. I made an appointment with a new eye doctor.

The ophthalmologist who performed my eye exam started freaking out almost immediately. He said I had blood behind both my eyes, a condition known as retinal hemorrhage. I didn’t realize it then, but it can be caused by a very low platelet count, which is a symptom of leukemia known as severe thrombocytopenia.  

The ophthalmologist referred me to an eye specialist who could examine me right away. That specialist said I’d had a stroke in one eye and was about to have one in the other. He sent me to a local emergency room.  

How I got to UT MD Anderson

The attending physicians at the local ER ran several tests. By the next morning, they were convinced I had leukemia. They just couldn’t figure out which one. Eventually, they decided on chronic myeloid leukemia, and I started receiving treatment for it.

Unfortunately, the treatments didn’t work. I just kept getting sicker and sicker. I lost almost 80 pounds over the course of several months, and became so weak I could barely walk. 

The care team told my boyfriend I only had about three weeks left to live. He proposed, and we got married within just a few days in my hospital room. Once we were spouses, he insisted I go to UT MD Anderson.  

That’s how I ended up meeting leukemia specialist, Dr. Tapan Kadia, just two days later. 

Corrected leukemia diagnosis made all the difference

I was in really bad shape by the time I got to UT MD Anderson. But I liked Dr. Kadia right away. He was kind and straightforward, without any sugarcoating. 

Within the hour, he had figured out that I’d been partially misdiagnosed. I did have chronic myeloid leukemia. But I also had acute myeloid leukemia. 

Dr. Kadia explained that chronic leukemia can sometimes turn into acute leukemia. But people usually have one or the other. Still, mine was not some weird transitional phase between the two. I literally had both kinds at the same time, which was extremely rare. 

My dual leukemia treatment

To treat me, Dr. Kadia recommended a combination of therapies. He suggested two chemotherapy drugs called cladribine and cytarabine, plus an immunotherapy drug called gemtuzumab ozogamicin and a type of targeted therapy called a tyrosine kinase inhibitor. 

The first hospital I went to accidentally gave me too much chemotherapy, and my organs started shutting down. I got jaundice three times while I was there and ended up with permanent kidney damage. 

I felt traumatized by that whole experience. So, I was terrified to start this new treatment. But I trusted Dr. Kadia. I followed his advice and did everything he said. 

Soon, my situation completely turned around. My blood counts started normalizing, and I was feeling much better. Within a month, I could walk again. 

I’m just happy to be alive

I still have some residual peripheral vision loss, and my eyes get tired really quickly. But most of my eyesight has returned. I’m also in remission from the acute myeloid leukemia, and thanks to medication, I show no evidence of disease for the other. I went from thinking I had only a few weeks left to live to actually having hope for a future. I am incredibly grateful.

There’s not a lot of data out there on the combination of these diseases. So, I’m not sure how long I’ll stay in remission. I’m still taking several medications in pill form, and I’ll continue to do so as long as they keep working. If the acute myeloid leukemia ever comes back, I’ll have to consider a stem cell transplant.   

But it’s been four years since my dual diagnosis, and I really didn’t expect to be here at all. So, I’m just happy to be alive. 

That’s why I tell everybody now to go straight to UT MD Anderson. Nobody else is as specialized as they are, so they can spot things that other places miss. They can also successfully treat the rarest stuff around. 

I am living proof.

Request an appointment at UT MD Anderson online or call 1-877-632-6789.