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.
I was working long hours on a petrochemical plant start-up in late November/early December 1979. I thought I had come done with the flu, but also had a strange soreness in my buttocks (which turned out to be an abscess), and a cut on my finger (which turned out to be osteomyelitis) that did not seem to be healing. I rarely sought medical attention for what I thought were minor illnesses, but was in enough discomfort to go to a Doctor to get something for the flu-like symptoms and fatigue I felt.
A blood test was run, and I soon found myself in a small community hospital. My white counts were below 200 (I had almost no defense against infection). I thought it was strange when people came to visit me that they had to scrub down and suit up in these yellow smocks, headdresses and masks. The doctors poked and probed for a day or two and could not make a diagnosis. They quizzed me on drug usage and chemical exposure looking for clues. They tried to do a bone marrow, but the aspirations came up dry. I was soon loaded into an ambulance and transported to a large teaching hospital (Herman Hospital in Houston, TX about 30 miles away). The doctors poked, probed and quizzed even more at the teaching hospital. Bone marrow attempts were dry again, until a young Oncology Fellow from MD Anderson (Dr. Abramowitz) decided to do the procedure himself — he was able to get a sample from my sternum with a lot of tugging and pulling, and a day or two later I was diagnosed with hairy cell leukemia.
The doctors did not know a lot about the disease at the time, so they went back and did some literature research and told me that if they removed my spleen they might be able to induce a positive response. The only problem was that with virtually no white cells, they couldn’t operate and expect me to make it through. The plan then became to have my two brothers flown in from Pittsburgh to donate white cells to get me through the operation. After a week or so of transfusions, my spleen was removed, and my counts bounced back to 3000-3500 level with a little more than 1000 neutrophils. At the time, this was the only known treatment for Hairy Cell. This might allow me to live another 2-3 years as the disease progressed.
Over time my white cell counts declined, and my hematologist went out of business. I went to her office one day for a follow-up appointment, and she had moved. I was a bit distressed about this, and talked with someone in the elevator as I left the office building; he told me about a young doctor at MD Anderson that was doing some research on Hairy Cell. So, I contacted Dr. Quesada at MD Anderson, and he was ecstatic to see me because he was having difficulty rounding up patients with this rare disease for his research. I was 31 when first diagnosed, and he told me that it was extremely rare for someone as young as I to have this disease. For a year or so, all he did was take lots of blood and bone marrow, and as long as my neutrophils were more than 1000 and I was infection free, no treatment was done. I had a few episodes of infection requiring hospitalization and strong antibiotics. Around 1982, I was hospitalized for pneumonia; diagnosis of the particular offending microbe was difficult — eventually it was identified as Legionella (Legionnaire’s disease). Antibiotics eventually killed the bug, and I was back home, but my counts were gradually dropping.
At this time, Dr. Quesada told me he was starting a study to determine the effect of interferon on Hairy Cell, and asked if I would like to participate. I accepted. The interferon used in the study was filtered from blood products, and was not pure. The drug came in frozen vials from Finland, and my wife injected me daily (IM); since this was an experimental program and treatment protocol were undeveloped, the dosage level turned out to be higher than necessary. A benefit of an experimental program using a drug that’s not FDA approved for a particular treatment was that the drug was free; they even gave me free parking at the hospital. Within a month or so, my counts started rebounding. After a year of daily injections, the treatment was backed off to 3 times a week — this made a big difference in the fatigue and other side effects. By this time, FDA had approved interferon for HCL treatment as a result of this study. I took the interferon for another year. My counts had rebounded, but bone marrow results always indicated a little disease was present, and I was slightly anemic. I went another 8-9 years without intervention, then came down with pneumonia around 1992-93. The pneumonia was treated successfully with antibiotics, and I was put on another course of interferon. This time it was a pure recombitant interferon, and the dosage was less than before. My counts rebounded, and even the anemia went away — I have been untreated since then, although the doctors still say they can see a few hairy cells in my bone biopsy.
Joe L. Adreon