by Pat Killingsworth, multiple myeloma patient and blogger
Happy New Year! January should be a hopeful year in the world of multiple myeloma. Thanks to the MMRF and an international cadre of scientists and specialists, more and more new drugs are being developed to help us; so many that there aren’t enough patients to test them on.
It’s true! Myeloma trials are facing significant recruiting challenges. The problem is so acute that it’s beginning to slow the pace at which new drugs can be developed.
Please keep that in mind the next time your doctor mentions one or more trial options, or you run across a trial that you think might help.
I’m trying to do that. But my subtype (no name for it yet) of myeloma makes it almost impossible for me to qualify for most trials. My kidneys are perfect and—so far—my brand of myeloma has responded to basic, tried and true therapies. But (you knew one of those was coming) I develop bone lesions and tumors at extremely low M-spike levels; as low as 0.5.
That’s a mere hiccup for most of you. But if spike gets up to 0.7, the radiologist reading my PET scan probably thinks I’m battling a severe case of termites!
That’s my clinical trial disqualifier. Standard admission to a trial requires a minimum 1.0 M-spike. Some also allow light chain ratios but mine readings are practically normal, so no help there.
A friend of mine recently relapsed after a successful stem cell transplant. He emailed me a list of twenty possible clinical trials he could try. Twenty! He and his doctor will probably take the easy route, starting consolidation—and later maintenance therapy—using readily available drugs outside a clinical trial setting.
I don’t blame them, but that’s a shame. Another opportunity missed to help our doctors and researchers help us.
Keep that in mind if and when the opportunity to join a potentially beneficial trial (you always come first!) presents itself.
That’s one thing that patients like us can control. Here’s another: resolve to take better care of our bodies in 2015.
We can’t control how aggressive our myeloma will be. And we can’t slow down the relentless march of time that seems to come at us faster and faster every day. But we have some control over what we put in our bodies—and what we do with them.
I’ll spare you the “eat organic, locally grown fruits, vegetables and lean, grass fed meats” lecture. And I don’t believe that eating an extreme diet can slow down myeloma once it takes hold and begins to advance. But what eating well can do is help keep our bodies strong—and our red and white blood counts up—so we can continue to take the highly effective, very expensive and toxic drugs that do have the ability to know our myeloma back.
The exercise thing is a no brainer. We have to keep moving! It’s good for our heart and our minds. The best way to battle chemo brain and what I like to call “pomalidomide fog” is exercise.
Staying engaged, physically and mentally, could help us live a longer and better life with multiple myeloma. How well we eat—and how much we exercise and use our heads—directly help us live better lives.
No one ever said living with multiple myeloma is easy. But with the help of hard working groups like the MMRF, participating in cutting edge clinical trials, eating well and exercising whenever possible, we can take back control of our lives
I hope you have a hopeful and productive 2015. I plan to!
Feel good and keep smiling!