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Leukemia Message Board


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I don't want to scare anybody and I'm not in anyway saying that you might have what I have, but I feel I need to share my story. In 1992 when I was 17 years old I got really sick with the flu and my mom took me to the hospital. I was admitted because my white count were extremely low. Doctors at that time thought that I might have leukemia. I didn't and they released me with diagnoses being mono even though all blood test for mono came back negative. For the next 12 years my health had brief periods of opportunistic illnesses and I saw an onocologist yearly my WBC remained between 3.2-4.7. Last xmas I started losing weight. A lot of weight 25 lbs in 6 months. I had strep cronically, swollen gland, bronchitus, e coli infection, sinus infections. I went to my onocolgist with this, he did a blood test WBCS were 3.7. Pretty consistant. He said I was fine. Meanwhile I was getting sicker and losing more weight. My GP was confused, He tested me for mono 3xs. Everytime negative, at one visit he just stood there staring at my chart with a puzzled expression for at least 3 min. Finally at my wits end I called my onocologist and said transfer my records to a larger cancer research institute. They did and within 12 hours of the fax I received a call. They wanted to see me immediately. So I went. They did a bone marrow biopsy, something that my former onocolist had never done. The tests were rushed. The results;cell dyplasia in my bone marrow. What does this mean? Well I'm still learning. The grade of dyplasia is low but there is a good chance it could develope into a lethal form of acute myloid leukemia. The hope is that I can receive a bone marrow transplant before this happens. Being realistic the odds are not in my favor, first I need to find a donor, then I need to survive the transplant and then the bone marrow needs to graft, each step stacking new odds against me. I am telling you this because Sometimes doctors don't listen and you need to make them listen and listen to yourself. If you can't make them listen go to someone else. If I had given in and stopped listeniing to my intuition. I would still be undiagnosed and struggling to find answers. Thank you for listening. I hope that in some way my story will help some of you out find the strength to get anwers when the answers seem so far away. Never stop fighting.





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