On my 61st birthday, January 2009, I got my diagnosis of Multiple Myeloma. Happy GD Birthday!
I had been pretty healthy up until I was age 55. I was hiking, climbing mountains, biking, and racing sailboats. I retired early and life was good. A few months later, I was riding my bike when I had chest pain. I stopped for a few minutes, it went away, I think it is heartburn, get back on the bike and keep going. Same thing happens twice more, and the last time, I slow down, but did get to the top of the hills for the down-hill trail riding.
When I told my wife about it, she was concerned. She always has been smarter than me. I already had a physical scheduled in a few days, so waited for that to ask the doc. He of course sent me right away to a cardiologist, who arranged for an angioplasty right away. Over the next couple years, I had a total of 4 angioplasties, with two stents.
All this got me interested in my heart, and so I was wearing a heart monitor when I hiked and biked. I take several meds to keep the heart rate and blood pressure low, but found my heart rate fluctuating greatly, and sometimes going very fast. I asked the cardiologist, and he said it could be because I am slightly anemic, maybe I should get that checked out.
So my primary care doc decided to send me to a hematologist. I had never even heard of one, but when the sign said hematology/oncology, I was suddenly realizing this might not be a simple problem. Sure enough, the diagnosis is multiple myeloma.
My oncologist has described it as smoldering. In the 18 months since diagnosis, I have been trying to understand the disease. I have had no treatment of the disease, only transfusions for the fatigue symptoms. About every 6 weeks, my hematocrit has fallen to 27, and I get 3 units of red cells. One time my hematocrit had fallen to 23, and I got 5 units over a few days. A unit of red cells raises the level by about two points, and takes about two hours to administer.
Normal hematocrit levels for an adult male is about 48, so I never get up to the level I should be. Consequently, I never have as much energy as I should. How much of that is just being age 62, I'm not sure.
One of the risks of transfusions is iron build up. Too much iron can damage the heart and liver. So we are discussing when to start treatment. Original marrow biopsy at diagnosis was apparently 60% abnormal. Now it is 70%.
As it now stands, I will get 3 more units of blood mid October, and discuss with the doctor at that time beginning treatment after a vacation to BVI in November. Treatment to be some chemo cocktail requiring twice weekly infusions, two weeks out of three.