My T-LGLL/Aplastic Anemia Story – Tina Cancio ~ Tampa, FL
I was diagnosed with probable evolving Aplastic Anemia (bone marrow failure disease) in May 2010. It is an extremely rare blood disease with only 600-900 reported cases each year. It has been difficult to accept and to discuss that many people did not even know I have an illness.
I also tested rare T-Cell positive (beta and gamma cell positive), for Large Granular Lymphocytic Leukemia (T-LGLL) when I was diagnosed in May 2011. It is a very, very rare form of leukemia, as only 200-300 people get it each year. Therefore, continual T-Cell clonal evolution and molecular T-Cell gene rearrangement studies are needed to track it, via bone marrow biopsies. It is a constant education for myself, as the blood certainly is tricky and too bad you need it to live! It is like learning an entirely new language.
I became officially retired in November 2010. After working for the last 25 plus years in business, as a Sales Management Executive in the Food & Beverage Industry for; Sara Lee, Melitta, Pepsi, Vitaminwater/Coca-Cola for most of that time. It has been a polar opposite life shift for me to get use to. It has been very challenging given my ‘Type A’ personality. Hmmm, I am also “A+” for my blood type as well…connection?…now I wonder. It has been a long and winding road. However, with my incredible friends and family, this life-changing journey has been filled with much love and encouragement.
I have been told the only possible cure for Aplastic Anemia, along with my T-Cell LGL Leukemia is an “Allogeneic Bone Marrow Transplant”. We have had the very long, 4-hour Bone Marrow Transplant Department tour. I do not qualify for transplant, as I am over 35 years old and do not have a full sibling. Unfortunately, even with a “full” sibling, there is still only a 25% of having a positive match. Therefore, my transplant risk for getting Graft Vs. Host disease is very high and the mortality risk is simply to great of a risk to take. My best option for a possible match, should I ever need one in the future, would be the National Bone Marrow Donor Registry (www.marrow.org). I can’t use my parents or Sera’s bone marrow/stem cells for transplant, according to the BMT Department at Moffitt Cancer Center.
When I am immunosuppressed (have very low anti-bodies), I am extremely susceptible to infection. Therefore, I need to avoid large indoor crowds, indoor shopping malls, indoor restaurants, away from sick people, no air travel, etc. and keep myself bathed in anti-bacterial gel/mask. Although on slow days or if the areas are not very heavily populated, I can slip in and out for a short time with my mask on.
I had my 6th bone marrow aspirations/biopsy (bone, blood and marrow surgery, on January 31, 2013 (moved up from April due to my January 2013 ICU visit), to check the status of my diagnosis. After 4 hospitalizations in 6 months in 2013, the doctors are continually treating my symptoms; severe migraines, extreme fatigue, difficulty breathing, cardiac arrhythmia, low blood pressure, severe bone pain (spine and hips), anti-body deficiency, etc., as they occur.
I had my 7th bone marrow biopsy surgery on May 19th, as the result of my most recent hospitalization that came out of nowhere in March 2014. Therefore, I had to be ambulanced to the hospital, due to a severely low B/P of 90/16.
To date, I have had great success with IV infusion treatment/IVIG (Intravenous immunoglobulin is the pooled immunoglobulin G (IgG) immunoglobulin’s from the plasma of approximately a thousand or more blood donors). The chemo drug of choice is Methotrexate for the LGL-L or ATG Horse for the AA. However, my Hematology Oncologist and I have opted for me NOT to have chemo, as the end result will not change the outcome. It will only make me more ill than I get now, so it does not make sense to mess with it (no more ICU visits for me!!;).
It all began with me feeling VERY tired around early 2009 and I slept all the time I possibly could. I just chalked it up to my extreme work/travel schedule, being a parent to 2 children and also owning a salon spa with my husband (who has been there for 20 years). I also began to have monthly infections that would not go away, even with antibiotics. So, my family doctor sent me to a local Hematologist, after he noticed my labs were consistently low and not typical.
The Hematologist sent me for my first bone marrow biopsy, which came back 10% hypo-cellular bone marrow and strange results. At first they thought I might have MDS. They also thought the results were a mistake at first from a “bad sample.” However, since my labs were still consistently low, they decided to send me to the Mayo Clinic in Jacksonville, FL (3.5 hours from my house). I went to the Mayo Clinic for 6 months, all the while working, planning my wedding and 2-week honeymoon to Europe. My husband still says to this day, “I don’t know how you did it in that last year?!”
After 6 months at the Mayo Clinic, they referred me back to the local Hematologist. Who then was VERY puzzled and decided to send me to a Hematologist he believed would know what I had, as the Hematologist was featured on the TV Show called, “Mystery Diagnosis”. Ironically, we actually saw the show a year prior and didn’t realize it was him, until he walked through the door. It was at that point I was sent for my next bone marrow biopsy and every test under the sun. After my results came in, I received my 1st diagnosis of Aplastic Anemia (bone marrow failure disease) in May 2010.
A year later, May 2011 is when my 2nd diagnosis came in as T-Cell LGL-L and there you have it. I asked was the LGL-L there first and he said it was like the chicken or the egg. He is not sure, but believes the LGL-L was there first, as it likes to attract autoimmune diseases along the way. I am so blessed to have such amazingly loving, caring, and supportive family, employees and friends! I try to always remain POSITIVE, no matter how bad or desolate things get. I am a strong woman of Faith and believe that GOD is in control. I do my part to live a clean life and pray for my next bone marrow results to be 100% NORMAL! I am most grateful for his Gift-the Gift of LIFE and I will live it to the fullest, no matter what.
No doom and gloom here and I have never once asked myself, “Why me?” but instead have asked, “How can I help others?” That is what led me to create the LGL Leukemia Foundation, as when I was 1st diagnosed, there was nothing out there to help guide me with answers or connect me to others with the blood disorder. There was the Aplastic Anemia & MDS International Foundation, but nothing else out there for LGL-L. It is my hope the website can be a hub for those diagnosed to get general information and connected to others struggling with the same questions. http://www.LGLLeukemiaFOUNDATION.Org