For the first 49 years of my life, I enjoyed excellent health, never having had a surgery, never having spent a night in a hospital, just no medical history at all.  I live in Healdsburg, CA, which is about an hour north of San Francisco and I own and operate 30 acres of vineyards and a small, very high quality estate winery known as Limerick Lane Cellars.

Historically for me the word leukemia is quite familiar as when I was 12, my maternal grandmother contracted CML and died a year later of it at the age of 73.  Years later, my mother at 52,was diagnosed with CLL.  She handled it rather well for the better part but died of it at 61,having endured many courses of chemotherapy.  She had an identical twin who developed CLL at 60 and died at 64 from a severe lymphoma related to the CLL.  I have really horrible memories of what all three of these people endured.   My father was so impacted by his wife's death and then her sister's, that he became a paranoic and in 1993, murdered my younger brother, tried to murder me and then shot himself fatally.   Leukemia has taken a dreadful toll on my family.

So a little over a year ago, realizing that I would soon turn 50, I decided to have a thorough physical exam.  It had been many years since I'd had one but I felt as well as I ever had.  My only concern was a tiny growth that had appeared on my lip over a year earlier and had been removed several times but continued to reappear.  When the doctor did my exam, he felt that I was in excellent health in every respect but ordered a number of blood tests.   The metabolic panel was perfect, excellent liver function, low cholesterol, a negative HIV result.   However, my CBC showed 85% lymphocytes but both the lab and the doctor dismissed it as reactive to some infection.

Knowing my family history, I insisted on seeing a hematologist post haste.  When the flow results came in he told me that I had Hairy Cell and Chronic Lymphocytic Leukemias.    I had heard of HCL as I knew two people who had it years ago and knew that both had been treated at Scripps Clinic.  At that time that was all I knew.  The hematologist told me of 2-CdA and told me to take it immediately but the bone marrow report said my case was most unusual and ought to be further investigated and suggested Stanford University,  but the hematologist insisted that they wouldn't say anything different there.  I decided to part company with that doctor and remain glad that I did.  To date, I have investigated various drugs, spoken with many experts but have remained symtomless and have yet to be treated with anything.

I did go to Stanford last April and had many tests but was not happy with their report as it was so vague as to have been written by a lawyer rather than a doctor.  However I did learn that my LDH and B2 microglobulins are low and that is a good indicator of long term survival.   They wanted to determine whether the two cell populations were clonally related but wrote the report in such a manner that no one seems yet convinced that they are or not.  The advice was to use 2CDA sometime in the future when symptoms appeared.

I went to Scripps after Stanford.  There I was seen by Alan Saven who insisted that I should not be treated with anything at this time.  I have no enlarged nodes, my spleen is not enlarged, no night sweats, no fatigue.  I had a CAT scan and it showed not a thing. 

My flow cytometry last spring showed 23% HCL and 6% CLL  ,six months hence, those percentages had doubled, yet I feel as well as ever.  My red counts have been ok, my platelets up and down ,averaging a bit over 100,000.   The differential is better than it was a year ago, my overall white count is about 10,000.

So far, the worst for me is the anxiety of knowing I have two smoldering diseases and that this combination is apparently unique.  While I have not one typical leukemia symptom, that growth on my mouth has been biopsied as a wart, has spread all over my mouth, has been frozen over 70 times and continues to grow despite weekly visits to a dermatologist.  It is chronically painful and renders me unable to smile, is noticeable and has me very worried.  Dermatologists claim it is a result of my low t cells and the leukemia, yet hematologists say they have not seen this problem in other leukemia patients.  The general opinion is that 2CDA might worsen it further.  This is for now a bigger quality of life issue for me than is leukemia and no doctor seems to have a clue as to what I might do.  It is a real catch 22, it's getting worse and I am fully frustrated over it.

That's the long and short for now.   I may know a bit more shortly as I have had an extensive work-up at UC  San Diego .  If you wish to contact me, my e-mail address is limerick@monitor.net

Michael Collins