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’m a female living in North Carolina, and was diagnosed with Hairy Cell Leukemia at age 57. I’d been bothered for a few years by menopausal symptoms like hot flashes and insomnia, but at the same time had fatigue that limited my activities, excessive thirst, and occasional light-headedness and dizziness. The GP I saw said I should take hormone therapy. I tried three different kinds of hormone therapy and got no relief from any of the symptoms. However, a gynecologist sent me to an internist to be checked for diabetes. A complete blood count showed that I had low white and red blood cells and platelets, so she sent me to a hemotologist, who did more extensive blood tests and a bone marrow biopsy. The slides showed hairy cells.
By that time, I was actually relieved to get a diagnosis of something treatable, though I wish people would stop saying that if you have to have leukemia, hairy cell is the one to get. Not comforting. I think they should just say that fortunately, it’s very treatable!
The hematologist/oncologist told me that the chemotherapy would be delivered for seven days continuously, and I chose to have it at home.
I had a PICC line inserted at the hospital. A very thin plastic tube was inserted into a small incision in my arm and threaded into a major vein, stopping short of my heart. The removal of the line seven days later was painless and quick, with no bleeding. Fortunately, the most painful part of all these procedures was the brief sting of the needles for the pain killers!
I had to wait a few days for the cladribine to get to the clinic—it actually got held up at the airport. In the meantime, my husband and I had a visit from a home infusion nurse to teach us how to flush the line with saline and heparin to keep any clots from forming and blocking the line. I started taking an anti-gout medicine daily. A nurse at the cancer clinic explained to us in detail what the treatment would be like and how to keep the insertion site dry when bathing, etc.
When the medicine finally arrived, it was placed into a small pump which was hooked up to my PICC line and started. It fit into a small black bag like a fanny pack with a strap which could go around my shoulder or waist. A digital readout showed that it was running and counted down the amount of medication remaining. At night I placed the pump beside me on the bed. I couldn’t sleep on the side the pump was attached to, but otherwise slept in a normal position.
I have always had a healthy life-style, with a good diet, daily exercise, no smoking, very little alcohol or caffeine, small amounts of sugar. I previously had no serious illnesses or injuries. I believe that is why I had no bad side-effects and an amazingly easy time with the chemotherapy. A couple of hours after I was hooked up, I did break out in a very itchy rash that spread to several parts of my body and turned very red. I called the after-hours number at the cancer clinic, and the nurse suggested Benadryl and Zantac, which my husband went out for. I had to take the Benadryl for most of the seven days.
My only other problem was fatigue. I felt light-headed and tired, but was able to do laundry, feed the cat, water plants, watch tv, and answer e-mail. I never needed anti-nausea meds. In fact, I was hungry, and ate almost normal amounts of food. I found high protein foods made me feel better.
Friends and family sent me cards and e-mails, and phoned, and understood why I didn’t want them to come over. For people who might be reading this on behalf of a patient, your support means everything. I had very few low or depressed moments.
Over the next two years, my blood levels continued to gradually improve as I got back to normal life. However, two years after the hairy cell diagnosis, I was diagnosed with ovarian cancer, at a very early stage, and took standard chemotherapy for that disease. Because my blood counts overall remained at a borderline low level, a six-month regimen stretched into nine months. I am now in remission from both diseases and living a normal life at age 62.
I have been interested to read that many Vietnam vets are being diagnosed with Hairy Cell, and that Agent Orange exposure is considered a cause. I grew up next to a railroad line, and I learned in an agricultural chemical course that at least one of the herbicides in that mixture has also been used on railroad tracks. Our vegetable garden was next to the track!