July 15, 2013
Acute myeloid leukemia: From diagnosis to stem cell transplant to survivor
BY Gerard Neumann
Three years ago, I started having chest pains. But I wouldn't go to the doctor for fear of being admitted and missing an upcoming trip to my grandson's baptism.
When the pain got so bad that I was screaming during the night, my wife finally forced me to see a doctor.
Initially, the doctor said it was pneumonia. But my high white blood cell count and enlarged spleen led him to change his diagnosis: leukemia.
He sent my wife and me to the local hospital, where another look at my lung showed fluid in my right pleural sack.
Three weeks later, I got a definitive diagnosis -- acute myeloid leukemia (AML). I told my doctor I wanted to go to MD Anderson.
My clinical trial for acute myeloid leukemia
Arriving at MD Anderson felt like the first day of school. The hospital was huge, and I started wondering if I had made the right choice.
My doctor, Farhad Ravandi-Kashani,M.D., helped ease my mind. He confirmed my AML diagnosis and started me on a clinical trial in late July 2010.
The trial required me to spend 30 days in a protective environment, where I received a chemotherapy treatment of Clofarabine, Idarubicin and Cytarabine.
No one except medical professionals was allowed in the room. I could only see visitors through a window and talk to them by phone.
The exceptions were the dining people and my spiritual help -- a Eucharistic minister who brought me communion almost every day. This gave me great comfort.
But in late August, I got bad news: My blast count (the cancer cells in AML) had gone up.
I was devastated. I told my doctor that if I was going to die, I wanted to go home.
He just chuckled and said they still had lots to try.
Preparing for my stem cell transplant
I started chemotherapy again. Dr. Ravandi-Kashani wanted to get me into remission so I could undergo a stem cell transplant.
The chemo did get me into remission, but my counts wouldn't recover. I had transfusions every other day.
Meanwhile, MD Anderson found that my brother was a good match for my stem cell transplant.
A transplant sounded scary. I was afraid I would die. I didn't feel any better knowing that the success rates for stem cell transplants were similar to those of my failed clinical trial.
But my wife pushed me forward, even taking my local oncologist to task when he said I could wait and see if the leukemia came back.
Pushing through my stem cell transplant
The chemotherapy during my stem cell transplant was vicious. It started like the other rounds, but after a couple of weeks, I had lost my hair and even my mustache fell out. Large blisters developed on the bottom of my tongue and down my esophagus. Every swallow was painful.
But I pushed through it. I spent every day before and after the transplant walkingthe ward. This stay was a relief compared to my time in the protective environment.
Going home after my stem cell transplant
On Thanksgiving Day -- 17 days after my stem cell transplant -- I was discharged. My counts were still low, but life was waiting. My entire family gathered in my son's apartment, where we celebrated Thanksgiving together for the first time in years.
Getting out of the hospital had given me a reason to give thanks. Eating dinner with my five children and three grandkids brought great joy -- not just to me, but to my family who, just six months earlier, had learned they might lose their dad.
Two months later, my counts had recovered enough for me to return home to El Paso. I surprised my wife and youngest daughter by arriving a day early. Record cold temperatures meant the schools were closed for four days, so I got to spend my first week home with my youngest daughter and wife, who's a teacher like me.
Celebrating life after AML
It's been two-and-half years now since my stem cell transplant. My counts are almost normal, and I'm 100% engrafted.
Since my transplant, I've seen the births of three grandchildren. I've watched my son Chris graduate from medical school, my daughter Emily graduate from college, my daughter Kaela graduate from high school and my son Tony get married. And I've spent many mornings enjoying coffee with my wife.
I was even honored as teacher of the year my first year back at work after my diagnosis.
During my diagnosis and treatment, I spent a lot of time breaking down in tears. I still tear up, but now they're tears of joy as I consider how fortunate I have been.
TopicsLeukemia Acute Myeloid Leukemia Survivorship Stem Cell Transplantation Cellular Therapy Clinical Trials
A transplant sounded scary. I was afraid I would die.