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.
The “USUAL” case of HCL.
So many of the stories here are grim and leave the readers with many apprehensions. Mine is less grim than many and I suspect my story is actually “more the norm” for most people diagnosed with HCL.
I am a white male, 56 years old, married to a wonderful woman with 3 grown daughters, all married to great guys. They have blessed us with 5 wonderful grandchildren. I own a pest control business, and have worked in that field for the past 34 years. I enjoy working with my hands which, in a round about way, is what lead me to find out I have HCL. On April 28, 2007 I was finishing off my daughters basement, cutting baseboards, and cut the tip off my index finger with a power mitre saw. Stupid accident, as I have used that type saw for years. I was scheduled for finger tip surgery and while obtaining the pre-surgery physical it was discovered my blood counts were low. A second blood test with a hematologist-oncologist prompted a bone marrow biopsy. The biopsy showed the HCL. When the oncologist gave me the diagnosis I was truly amazed. Other than being slightly overweight I thought my health was great. I had been a little sluggish lately, but attributed that to age. I had been getting complete annual physicals routinely, with CBCs and the works, until my family doctor moved to another state. Since I was not comfortable with my doctor’s partners and with the hassle of finding another doctor, I had not had a physical for 3 years.
When the oncologist told me I had Leukemia her words were “If you have to have Leukemia, you have the kind to get. In 85%to 95% of the cases the treatment puts Hairy Cell in remission for many years, maybe forever.” Of course I was still apprehensive. Other than a very sore finger I felt too good to have Leukemia. Can any of this really be true?
I went into the hospital on May 22nd and within a few hours began a chemotherapy treatment with Cladribine. The Cladribine was administered through a pic line that went from a vein under my arm to a large vein just above my heart. I received 10.5 ml of Cladribine mixed with 489.5 ml of normal saline over the next twenty four hour period. I was then given Zotran, 4 ml ondonsetron mixed with 50 ml of normal saline over a thirty minute period through the same pic line to prevent nausea that is associated with Cladribine treatment. The IV was then unhooked, covered with plastic & tape, and I was given about twenty minutes a day, off the IV, to shower. This procedure was repeated for the next seven days. Other than the discomfort of the IV line and the typical hospital routine of being awakened every couple of hours for vitals testing the hospital stay was not all that bad. In fact I actually felt guilty for feeling so good while others in the ward were suffering with very painful cancer. Because the Cladribine’s job is to kill most of your white blood cells (the cells that fight bacteria and disease), I was required to remain in the oncology ward of the hospital the first four days, and was confined to my hospital room the remainder of my stay. On the fifth day I developed slight fevers (around 100-101degrees) every afternoon and lost all ambition to walk around. My white blood count (WBC) was 1.0 Lx10^3/ul when I was discharged from the hospital on May 29th.
I was advised to stay in my house with no visitors other than my wife until my WBC came back up. I had to be careful with what foods I ate, no fresh fruit or anything uncooked. I took the advice and other than rides in the car with my wife in the evenings I stayed pretty much in isolation in my house for the next few weeks. My WBC hit an all time low of 0.7 one week after discharge from the hospital. I had slight fevers every afternoon for about two weeks after being discharged from the hospital. I visited the oncologist office weekly for blood tests and over the next several weeks my WBC elevated ever so slowly. By June 14th the WBC was back to 1.0. On June 28th it was at 1.5 and the oncologist told me I could return to light work in my office when the count gets above 2.0. On July 5th the test showed my WBC at 2.2. Yea, five weeks has passed since I went into the hospital and I can go back to light work and my real passion, fishing in my bass boat. Life is returning to normal. On Aug. 9th the WBC was 4.7, almost within the normal limits of 4.8 to 10.8. On Aug 28th I had another bone marrow biopsy and a couple weeks later the oncologist gave me the news that there were no signs of any hairy cells and everything looks fine. For the time being I will go in for blood tests every three months. It’s now Oct. and my wife and I just returned from a week in Ireland , a trip that had been planned several months before the diagnosis of HCL, and I feel great. Just a few weeks ago we thought we might have to cancel the trip.
So what caused the Leukemia? I haven’t smoked since I was 22. I quit drinking alcohol at age 35. My Oncologist suspects the pesticides I’ve worked with over the past 34 years. However, I am very active in my state and national pest management associations and know thousands of other pest control operators and farmers that have also worked around the same pesticides. No one that I know that works with pesticides has ever had HCL. The only other person that I know with HCL is an attorney friend. Maybe it’s office work that causes it? Just kidding. Perhaps we’ll have the answer someday, but in my opinion, for now the cause is still up for grabs.
Herman Moxey October, 2007