I am a 61 year old physician, who was diagnosed with CLL on the basis of a high lymphocyte count done as a routine test in October 1997. I was watch and wait at the start. Having this disease in which both the condition itself and its treatment lead to immune defects, I realized that perhaps continuing as a general pediatrician constantly exposed to viruses may not be a good idea. So I left practice and while working as an internet medical news editor got a Masters degree in computer info systems, and then moved to Philly area to work for a company that does pharma marketing primarily via the internet. Changing docs due to the move, I settled on a small group at Hahnemann hospital (Drexel med school) because they were the first to do bone marrow transplants in the region. This is a decision I do not regret as I like all 4 docs in the group and the 2 oncology nurses I know well. I am not in a rush to get a stem cell transplant as have not been that sick and still have meds available to treat me. Although I went to U Penn med school I chose this group and even after the amazing
news from Penn about the experimental T cell activation success in CLL, have yet to even get a second opinion there, but certainly will if I feel I need to consider another direction.
My treatment history sinee diagnosis:
- In 2004, WBC went from over 100K to about 60K but had fever, increased nodes, enlarged spleen and liver as well as decreased red cells and platelets, I responded well to fludarabie alone then.
- Several years later my WBC also increased and had anemia and thrombocytopenia, this time treated successfully with FR (fludarabine and rituximab)
- About 2 years ago WBC went up fast and nodes became much larger so got FR again. On the 5th cycle I was admitted to hospital with fever and neutropenia and although I was given the usual heavy duty antibiotics to cover potential bacterial infection it turned out I had a tick-borne infection called anaplasmosis that responded to a simple oral antibiotic, doxycycline. (I live near the piney woods of Wharton state forest and often walk my dogs there on weekends, believe me, I have been much more careful with deer tick prevention since....)
So now I have had increasing node size since the spring and my count although normal since stopping the FR about a year and a half ago now shows 23K WBC, hemoglobin down to 11 and platelets to 60K. So now may qualify for a phase 2 trial with Revlimid that I failed to qualify for last spring as nodes not big enough then. I will find out in the next several weeks. If Revlimid does not work or can't get in trial my doc may use bendamustine and Arzerrra (which may work better than Rituxan which I have had before). Time will tell, more musings on Revlimid in next post.
