Chronic Myeloid Leukemia Transformation

My symptoms consisted of noticeable weight loss, persistent fatigue, and unexplained bruising. I was diagnosed with Chronic Myeloid Leukemia (CML), also known as Chronic Myelogenous Leukemia. It’s a type of blood cancer that begins in the blood-forming myeloid cells—or stem cells—found in the bone marrow. Additionally, I tested positive for the Philadelphia Chromosome, a genetic abnormality where part of chromosome 9 swaps places with part of chromosome 22. This genetic exchange creates a new gene called BCR-ABL on chromosome 22, which leads to the uncontrolled growth of cancer cells.

During the first five years following my diagnosis, I was treated with TKI (Tyrosine Kinase Inhibitor) therapy — an oral medication designed to target how my cells function and grow. I initially started on Gleevec (Imatinib), which I tolerated well for a few years until my body developed resistance to it. I was then transitioned to Sprycel (Dasatinib) and later Tasigna (Nilotinib), as my response to each medication diminished over time.

After an extended period of using various TKIs without lasting success, my health significantly declined, and I was in urgent need of a bone marrow transplant. Unfortunately, despite extensive efforts, a suitable donor match could not be found. My two full-blooded sisters and several other family members were not matches, and even after organizing bone marrow drives that added over 500 people to the national registry, no match was located. As my condition worsened, I underwent a procedure called leukapheresis, which involves drawing blood from the body and separating white blood cells from the red blood cells, plasma, and platelets. Despite this intervention, I remained critically ill and required a transplant as soon as possible. My oncologist then recommended an allogeneic stem cell transplant, which involves receiving healthy blood-forming stem cells from a donor. To prepare for the procedure, I underwent full-body radiation and several weeks of intravenous chemotherapy, including Vincristine and Omacetaxine Mepesuccinate. The transplant was successfully performed on February 26, 2012.

10

My advice to anyone facing a similar situation is to be your own advocate—ask questions, do your research, and don’t hesitate to seek second opinions. Connect with a support community where you can learn from others’ experiences, explore different treatment options and therapies, and better understand symptoms and healing paths. One thing I wish I had known earlier is the importance of fertility preservation. It was never discussed with me until it was too late and my health had declined. Whether you’re male or female, and even if you're unsure about having children, take the time to learn about your options. Ask the questions. It’s far better to have the choice later than to be left without one, facing the physical and emotional challenges of infertility.

Following the transplant, I achieved 100% remission from leukemia, which I’m incredibly grateful for. However, the journey left me with lasting side effects that I continue to manage to this day. These include chronic GVHD (Graft-versus-Host Disease), persistent fatigue, chemo brain, infertility, and fatty liver disease.

I believe the root cause of CML lies in the genetic mutation that triggers the rapid growth of abnormal cells. However, I also believe that what we put into our bodies—through our diet and environment—can influence the progression and severity of the disease.

If I could go back, one thing I would do differently is take more time to educate myself. Although I was extremely ill at the time, and incredibly fortunate to have a strong support system of family and friends, I wish I had known more about the treatment options and decisions leading up to my transplant. My family advocated for me wholeheartedly, and I was blessed with an exceptional medical team and oncologist who truly took the time to care for me. Still, I realize now that there were important areas—like mental health support, physical rehabilitation, and fertility preservation—that weren’t fully addressed. I wish I had been more informed and better prepared for those aspects of the journey.