OK. I have stalled long enough. I have promised anecdotal evidence supporting longer life expectancies for multiple myeloma patients for the past three days—so here goes:
I belong to two large multiple myeloma support groups. One in Stillwater, Minnesota and one in Minneapolis/St. Paul. I also travel often, speaking to support groups all around the country.
Since I began attending meetings, very few support group members have died. Out of seventy or more members of the two Minnesota groups, only a handful of patients have passed away in two years. Among those that have died, all but one lived at least five years. Several of my brave friends died of other causes—a different form of cancer, or other health complications which may or may not have been linked to their myeloma. Of those who died from myeloma, two just literally “wore out.” I swear it was the constant pounding of the drugs that killed them, not the multiple myeloma. I hear similar stories wherever I travel. Multiple myeloma support groups are celebrations of life, not grim reminders of death and dying. Why? Because most members are still alive!
Do the math. Seventy multiple myeloma patients between ages 34 and 80+, representingfrom different backgrounds , all in different stages of the disease. Only four or five deaths over two+ years. Only one of the these patients lived less than five years. Two lived over ten years. The math simply isn’t adding up!
Now, I realize there is a flaw in my observations: Often, healthier patients are the ones attending support groups. These patients are the ones with positive attitudes who are physically able to make it to meetings. They tend to be well versed in the latest advances in myeloma therapy, have good insurance, get good medical care and receive lots of support from other group members, family and friends.
But it doesn’t matter if my sample is statistically scewed! Why? First, because it goes to show, as we increase patient awareness and support, patient quality of life and survival rates should continue to improve—with or without the invention of new miracle drugs. The more patients we can encourage to attend support groups and help recieve excellent care and treatment, the longer those patients should be able to survive. Second, these brave Twin Cities area support group members are a representative sample of the one half of patients living longer than the median. These are the survivors who are blowing through the barriers to how long—and how well—a patient can live with multiple myeloma.
I’m pumped! I’m fired up—aren’t you! Attitude does matter. Hanging in there, eating right, exercising, waiting and watching—it’s all working! How lucky most of us are—for cancer patients, that is.
Feel good, keep smiling and keep moving, keep hoping, keep praying and keep living! Pat