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My name is Lou DiFinizio living in Whitinsville MA. I’m 56, the father of two boys 31 and 29, married to a lovely woman (a nurse as well) and have been cured since June of 1992. My story is a bit different form others in that I was originally diagnosed in January of 1991 with Aplastic Anemia (a bone marrow failure of unknown origin), a disease which mimics HCL. The Anemia was diagnosed by my Hematologist and confirmed by a second opinion with a completed of exhausting tests. I was treated with two courses of a serum (ATG) for the Anemia with no success.
Finally in January of 1992, I was sent to Brighams and Woman’s Hospital in Boston to discuss a bone marrow transplant, since all previous treatments had failed. At that time I had two transfusions of packed red blood cells and had not identified a marrow donor. Within a few days of the bone marrow consultation my spleen had enlarged. My doctor immediately sent me down for a Cat scan (I was in the Hospital at the time). The test had confirmed an enlarged spleen. Another Bone Marrow test this time showed signs of HCL. The previous 4 tests did not show the HCL, all toll I’ve had 9 bone marrow aspirations.
I recall my Doctor saying, “Hope you have Hairy Cell Leukemia, because I can cure that”. God knows that we had no success treating the previous diagnosis. 2CDA was the treatment of choice, but was still experimental in California. A call to the National Disease Center got an agreement to send the drug to Massachusetts for my treatment. I was one of the first people outside the initial drug testing in California to receive 2CDA. I received the 24 hour a day, for 7 day treatment via IV in the Hospital and stayed another 10 days before they thought it was safe to send me home. The 2CDA was the easiest treatment that I had endured throughout the ordeal. The two courses of the ATG were 6-8 hour infusions for a 10 day period.
My worse Hospital experience was a course of an anti fungal antibiotic which was a 4 hour infusion from 10:00 PM each evening to 2:00 AM . The Nurses fondly called the drug “Shake and Bake”. This is because the first two hours I shook so violently from the cold that the bed moved, followed by 2 hours of the sweats that soaked the bed linens. 2 CDA was a walk in the park !! Within days of the treatment my white cell count was 200 with zero signs of an immune system. I received daily CBC blood tests and lab reports each morning. One faithful day the nurse reported I was up to 400, the next day was 600, then 800 and I was on my way !!
One strange thing occurred though, that is, I had terrible bone pain, which is a feeling of “aching down to your bones”. Each day different parts of my skeleton would ache from by feet to my hands with the most pain in the areas with the thinnest bones. The doctor indicated that this was the barrow regenerating.
By May I had finally returned to normal blood count levels with lots of strength and energy, I began to plan on returning to work after 5 months of disability. Then one more chapter had to be played out !! On Mothers Day (May’92) I ran a temperature for 3-4 hours in the evening. This continued for weeks which required occasional Hospitalization, more Bone Marrow tests and a battery of tests to determine the origin of the temperature. My new diagnosis was “Fever of Unknown Origin”, sounds ominous, doesn’t it ?
After eliminating all other possibilities it was determined that I had vasculitus (an irritation of my blood vessels) which was caused by the past year various treatments, but generally believed NOT to be caused by the 2CDA. A course of prednazone (spelling ??) had me back on my feet with no more fevers after an addition 5 weeks of heart ache. But it’s all over !! All toll I spent 13 weeks off and on in the Hospital at no cost to me. My HMO was terrific through the ordeal and has been rated one of the top two HMO’s in the country over the past two years.
In the fall of 92 it was determined that I had some permanent kidney damage, again believed not to due to the 2CDA, which caused an increase in my blood pressure. A simple medication keeps that in check. I now see my Hematologist every six months where we review my blood count, an exam of my spleen and a long discussion on family and tennis. I’m in remission(they don’t seem to use the word cure…) and haven’t had a bad day since June of 1992.
Lou Finizio ( Lou_difinizio@maxtor.com )
March 18, 2002