I turned 40 years old in 1997, my son had just turned one, my daughter five and I thought, given those circumstances, it would be a good idea to see a doctor for a check-up, it had been 9 years since I had had one. I had my physical and everything seemed fine, I returned in a couple weeks for the results and was told that my blood levels were a little abnormal probably due to an infection. I was put on anti-biotics and told to come back in 6 weeks. All of my life I had been so healthy that I have never even taken an anti-biotic, I thought nothing of it. The blood test was redone and I left assuming that that was it.
About two weeks later I was on business in S. Fla and received a message that I needed to contact the doctor. I called and spoke to an assistant who told me that the doctor was referring me to a specialist. I began to feel a little uneasy and when he told me the specialist was a hematologist/oncologist the alarm bells were deafening. I remember only that I had questions, a lot of questions most of which were unanswerable. I did have an immediate need to see the oncologist, whatever the problem was I needed answers, reassurance, I was hoping a serious mistake had been made and it would be cleared up, this couldn’t be happening.
The appointment time finally came, I remember being in the pre-examing room getting my blood taken when a gentlemen walked through and looked at me with an unusual expression, I was soon to learn that he was my doctor and he was sizing me up to determine how I might react with what he was about to tell me. When I got into the examining room he came in 5 minutes later, introduced himself and asked me to sit down. He unhesitatingly told me that I had chronic myelogenous leukemia and that if I was going to be cured and have any chance of living a normal life I needed a bone marrow transplant and sooner than
later. We spent the next hour discussing what a bone marrow transplant was and how I needed a match in order for it to work effectively. My best chance for the match lay with my immediate family, I was trying to digest the information but my mind was reeling I felt paralyzed and afraid. The questions that were coming into my mind began to deal less with my health and more towards my family and what happens to them if I die.
I returned home and told my wife, called my parents, brothers and sister. In my situation I don’t believe I would have been able to get through those first few months with out the support of those that are close to me. It’s difficult to explain the desperation you feel. My doctor told me that the average survival for someone with CML that doesn’t have a transplant is 6 years. My siblings were tested and did not match. I spent a day at the Moffit cancer center in Tampa discussing a non matching transplant, it was not encouraging.
My doctor placed me on Alpha Interferon and I injected it daily. My blood counts fluctuated wildly in the first few months, and then gradually the white counts began to stabilize. I was told that a small percentage of CML patients respond extremely well to Interferon and reach a permanent remission, I prayed for those results. The first year passed, I was told that in order for the bone marrow transplant to be of optimum effectiveness, it needed to be done in the first
year. I was committed to the drugs being able to work. A friend told me to ride the technology wave and that’s what I was going to do.
One year turned into two and two to four, I had responded extremely well to interferon, there are side effects but I was not overly effected. During those years, a new drug was developed that was fast tracked through the FDA process due to its potential for being so effective in treating this disease. I had continued to respond so well to Interferon that I didn’t immediately switch to Gleevec. About three years ago my white counts spiked upward for the first time and we decided that switching to Gleevec would be the prudent thing to do, I’ve been on it ever since.
I am still alive and the luck I’ve experienced on this journey continues to amaze me. If I hadn’t gone for the physical when I did, if I hadn’t responded to the interferon to get me to Gleevec, if Gleevec isn’t developed or moved forward as quickly as it was. As I write this I’m watching my son play Pop Warner Football (he’s a fullback and linebacker and pretty good!) my daughter is in the honors program at her school and is on a nationally recognized cheerleading team. I have a beautiful wife that I consider my best friend. I am approaching my ninth year from the original diagnosis. This disease is survivable and more and more who are stricken with it are living full lives, I’m living proof.
I sincerely appreciate Bill and the people responsible for putting together this website, information is the most important element in understanding all that this disease involves.
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