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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.