My Journey with LGL Leukemia

It all began with me feeling very tired in early 2009. I slept as much as I possibly could. I just chalked it up to my extreme work and travel schedule, being a parent to 2 children, and owning a salon spa with my husband (who has been there for 21 years). I also began to have monthly infections that would not go away, even with antibiotics. So, after my blood test results were consistently abnormally low, my family doctor sent me to a local hematologist.

The Search for a Diagnosis

The hematologist sent me for my first bone marrow biopsy, which came back with strange results. At first they thought the results were a mistake that came from a “bad sample,” or that I might have myelodysplastic syndrome (MDS), a bone marrow disorder that can develop into leukemia. However, because my blood tests were consistently low, they decided to send me to the Mayo Clinic in Jacksonville, FL, which is 3.5 hours from my house. For the next 6 months I visited the Mayo Clinic, all the while working and planning my wedding and a 2-week honeymoon to Europe. My husband keeps saying, “I don’t know how you did it!”

After the 6 months of visits to the Mayo Clinic, I was referred back to the local hematologist, who was very puzzled. He sent me to another hematologist who was featured on the TV show called “Mystery Diagnosis.” Ironically, we had seen the show a year earlier, and we recognized him when he walked in. I was sent for my second bone marrow biopsy and what seemed like “every test under the sun.”

In May 2010, I was diagnosed with aplastic anemia (a bone marrow failure disease), a rare blood disease, with only 600 to 900 reported cases each year. Many people don’t even know I have an illness. I look perfectly healthy on the outside, but the “face of cancer can be very deceiving.”

I retired officially in November 2010. After working for the past 25-plus years in business as a sales management executive in the food and beverage industry in different companies, such as Sara Lee, Melitta, Pepsi, and Vitaminwater/The Coca-Cola Company, it has been a big shift for me to get used to retirement. It has been very challenging, given my “type A” personality. My blood type is also “A+.” Could there be a connection here?

Another Diagnosis

In May 2011, I was diagnosed with T-cell large granular lymphocytic (LGL) leukemia, a rare, chronic form of leukemia that affects white blood cells called lymphocytes, with only 200 to 300 reported cases diagnosed each year. I asked my hematologist-oncologist whether the LGL leukemia was there first, and he said it was like “the chicken or the egg.” He believes the LGL leukemia was there first, because it can “attract” autoimmune disorders.

Aplastic anemia and LGL leukemia are 2 rare conditions that require more studies for understanding. For me this is a constant educational process, because blood is complex and not well understood. Unfortunately, we need blood to live! It’s like learning an entirely new language.

The Search for a Cure

I have been told that the only possible cure for aplastic anemia, along with my T-cell LGL leukemia, is an allogeneic bone marrow transplant. I had a 4-hour tour of the bone marrow transplant department, only to find out I don’t qualify for a transplant, because I am older than 35 years and I don’t have a full sibling. Even with a full sibling, there is still only a 25% chance of a positive match.

Therefore, my transplant risk for getting graft-versus-host disease is very high, and the mortality risk is simply too great. My best option for a possible match, should I ever need one, would be the National Bone Marrow Donor Registry (www.marrow.org).

Because I am immunosuppressed (I have very low antibodies), I am extremely susceptible to infection.Therefore, I need to avoid large indoor crowds, indoor shopping malls, and indoor restaurants; keep away from sick people; avoid air travel; and keep myselfbathed with antibacterial gel. On slow days or in areas that are not very heavily populated, I can be in and out for a short time wearing my antibacterial mask.

Treatment Options

After 4 hospitalizations in 6 months in 2013, and 1 in March 2014, my symptoms are being treated as they occur. My symptoms include severe migraines, extreme fatigue, difficulty breathing, cardiac arrhythmia, low blood pressure, orthostatic hypotension, osteoarthritis, day and night sweats, chronic infections, severe bone and joint pain (especially my spine and hips), and antibody deficiency. I will be having my eighth bone marrow biopsy surgery in May 2015. 

To date, I have had great success with intravenous infusion treatment and intravenous immunoglobulin (IVIG). The chemo drug of choice is Trexall (methotrexate) for LGL leukemia, or horse antithymocyte globulin for aplastic anemia. However, my hematologist-oncologist and I have opted not to use chemo because I am highly sensitive and react negatively to most medications, but I will if I absolutely have to.

Keeping a Positive Outlook

I don’t believe in doom and gloom. I have never once asked myself, “Why me?” Instead, I ask, “How can I help others?” That is what led me to create the LGL Leukemia Foundation.

When I was first diagnosed with LGL leukemia, there was nothing available to help guide me with answers or to connect me with other patients with these blood disorders. There was the Aplastic Anemia & MDS International Foundation, but there was nothing for LGL leukemia.

I hope the LGL Leukemia Foundation website can be a hub where patients can get information and connect with other patients struggling with the same questions.

I am blessed to have such an amazingly loving, caring, and supportive family, employees, and friends! I try to always remain positive, no matter how bad things get. I am a strong woman who believes that God is in control. I do my part to live a moral life, and I pray for my next bone marrow results to be 100% normal!

I am most grateful for the gift of life, and I will live it to the fullest, no matter what. It has been a long and winding road. With my incredible friends, family, and my faith, this life-changing journey has been filled with much love and encouragement.