Submissions to “Patients’ Stories” cannot be verified for their accuracy. They do not necessarily represent validated medical research. The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Foundation.
After reading some of the other accounts I thought it might be helpful to hear a real positive account of treatment for HCL. This is really a tribute to my oncologist.
In 1986 my blood counts (during a routine physical) weren’t right but the doctors weren’t positive what was wrong. The oncologist said lets be patient. I was checked every 3 months. There was no
discomfort but my spleen was huge and I got pneumonia. Finally in 1988 the symptoms clearly showed I had HCL. The doctor applied for Pentostatin (it was still on protocol) and received permission to use it. I had an immediate positive reaction although it took 7 months of treatments (4 hours of IV in
the hospital every two weeks).
After that I did have some trouble with Shingles. I was in remission for 7 years and during periodic blood analysis once again the HCL was back. This time 2CDA was used (one week at home, 24
hours per day). One complication occurred in that the transmission line became infected and I had to spend 3days in the hospital.
Although there has been no reoccurrence my doctor says we have to be vigilant and I see him every 6 months. I feel I have been one of the more fortunate to get this disease in that it caused very few interruptions to my life and little discomfort. My advice is keep a positive attitude and spend your time to
find the right doctor!
If you would like more information contact me at
April 30, 2003