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 diagnosed in the Fall of 1992 with Hairy Cell Leukemia, when I was 42 years old, after a Summer of feeling unwell, ear infections, and flu like symptoms that did not go away. I had a husband and 3 young children at the time. That was almost 20 years ago, so I obviously survived, and in fact I have been very well for a long long time. But it was a brush with fate that caused us all a lot of fear.

My blood counts were what alerted the local family doctor after an initial visit, and he sent me to an oncologist at our local hospital. There I had a bone marrow biopsy, and the results confirmed, that there was a type of blood cancer. I was referred to Stanford Hospital for a definitive diagnosis. It was shocking to hear that I had leukemia, but as others have attested, I also was told this is the best type of leukemia to get if you must have it. The Stanford doctors recommended a 7 day continuous infusion of a fairly new drug call 2CDA….the longer word I forget. As it was still not approved, I was put on a clinical trial, and it was administered in my local hospital for 7 days, as an inpatient.

I was told that the foremost expert in the “world” in the field of hairy cell, was Dr Alan Saven, at Scripps Clinic in San Diego. So, I flew down and I saw Dr. Saven a couple of times, just to be reassured that in fact, 2cda would be the best treatment for me and to see if he had any other comments. He recommended that I see a hematologist at Stanford for followup and I did meet with the Head of Hematology, Dr. Stanley Schreir, now retired.

My symptoms reoccured 2 years later, 1994, and this time I was told that the 2nd round of 2cda, would be administered at Stanford as an outpatient, and they put in a stent, and sent me home where I had the infusion for 7 days again, with a home care nurse coming by to replenish and take my vitals.

After both procedures, I felt fairly good, no hair loss, no nausea, just a little fatigued and worried. I would say that the bone marrow biopsy was the worst part of the entire ordeal, and I hope never to have those again.

I am now 61, have had so many good years of health, seeing my children grow, and travelling with my husband. I dont worry about it any more, and just feel fortunate that there is such good research out there, and so many great doctors who helped in my survival.