I was diagnosed with Multiple Myeloma in 2003. Fortunately, my doctor was able to diagnose me fairly quickly.
My first research on my newly acquired disease indicated a life expectancy of 2.5 years average. I sat in front of my computer numb. But I learned quickly that much that is on the web is outdated. The 2.5 year figure came from studies done in the early 1990s and published in 1998 – before Thalomid emerged as the first of the novel therapies.
LESSON 1: The web is extremely valuable but you have to be very careful with it. Read dates, cross check, talk to your doctor. Talk to IMF hotline. I went on Thal/Dex immediately. Results were astonishing. My urine protein dropped 97%. CBC values came to normal, creatinine dropped from 3.8 to1.1. But this success may have created a problem. I needed to fly to Berlin for the International Whaling Commission. After returning home I developed a bi-lateral deep vein thrombosis – blood clots. I called the IMF and learned the DVTs apparently came from the combination of flying for ten hours and the detritus of the dead cells killed off by the meds.
LESSON 2: When things like this happen call the IMF and get their input. I then began filming a special for PBS on dolphins. First stop Norway to film killer whales under water. The dex helped a lot. I had huge energy and we made a great film entitled “The Dolphin Defender.” I’ve remained in a stable high quality partial remission for 11 years and moved toward relapse only twice – each time when taken off meds for 16 months.
LESSON 3: Do not take vacations from meds. For more info on this see lesson 2. Another lesson I’ve learned is that you must know as much as possible about the disease. As marvelous as many of them are, doctors are often stretched thin and have many patients. They can forget or lack the organization to do things like schedule bone scans or other tests. I had, on one occasion, to point out to my oncologist that his lack of action when I developed bone lesions was unacceptable. He wanted me to continue untreated after several lesions developed. I called Dr. Durie at IMF and he got me back on treatment which knocked out the lesions and got me back into remission.
I live today in St. Augustine Florida with my wife, Deborah, my dog Chou Chou, and my cat Gracie. I don’t have the energy I once had but I continue to do the work I love and have recently take up painting – at 70 years of age.
— Hardy J.