valedav's Journey with Fast Growing, Chronic Lymphocytic Leu...

Referral to a Hemotoligist/Oncologist after a summer believing I had mono (positive monospot) and enjoying the "license" to take a nap whenever I felt tired. A mammogram showing enlarged lymph nodes, an ultrasound showing enlarged lymph nodes and swelling in neck, and a number of blood tests showing unusual white blood cell counts all contributed to my provider's concern that I had something other than mono. To make things worse, the Oncologist office ushered me right in and started to discuss my "plan." Since I was quite sure that I only had mono, it was a shock, to say the least, to see how positive they were that I had either non-hodgkins lymphoma or leukemia. Further testing determined that that I have Chronic Lymphocytic Leukemia/Small Cell Lymphocytic Lymphoma with a mutation of the chromosome 17p (deletion), which makes for an agressive cancer with a poor prognosis.

My chemotherapy included Fludera, Cytoxan and Rituxan, or FCR. I had three days of chemo every four weeks for six sessions. Each session was followed by neupogen shots for 7 days to stimulate the manufacture of cells. I did not lose my hair, but experienced fatigue and nausea for several days after each session.

Anti-nausea drugs injected with chemo worked great during treatment itself, however, for several days following the treatments, I experienced nausea. After the first time, I got two different types of anti-nausea pills, each working on different receptors, and the remainder of my sessions were much, much better.

Due to the mutation of chromosome (del 17p), my doctor told me that I would be referred to a transplant hospital at the end of my treatments as chemo would only be a short term fix. I was referred and had a thorough appointment with the recommendation that since I now feel really good I would return for preparation for a nonmyleoblative transplant once tests show the cancer ihas returned. My siblings were tested and all three of my brothersmatch. This is very unusual as approximately 70% of people do not have a sibling match.