Even remission isn’t easy with multiple myeloma
It’s hard to explain that life isn't quite the same anymore
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Remission does not equal a cure.
That can be a tough concept for people who don’t live with cancer. They see you go through treatment, maybe ring a bell at the end, and they think you’re fine now and can go on with your life as it was before.
Those of us living with multiple myeloma know differently.
The difference between ‘remission’ and ‘cure’
According to the National Cancer Institute, “In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.”
In contrast, as the American Cancer Society notes, “A cure means that there are no traces of your cancer after treatment (you might hear this called NED or no evidence of disease), and your cancer is not expected to come back.”
I’ve always expected my cancer to return, or relapse, because the first thing I learned about myeloma was that it is treatable but not curable. I also expect that when — not if — it comes back, it will be tougher than before, like the mythical Hydra with new heads springing up each time one gets chopped off. (I obviously watched too many Ray Harryhausen movies over the years.)
Sometimes I think that boomerang potential is why some doctors don’t talk about remission. Mine didn’t for a long time, instead using the phrase “stringent complete response” to describe my myeloma status.
But I also wonder whether some doctors avoid “remission” to manage expectations and avoid the fallacy that remission equals cure.
‘Why’d you have to go and make things so complicated?’
Life changes after a myeloma diagnosis, even in remission (or stringent complete response). I’m one of the lucky patients who hasn’t had serious aftereffects from the cancer or the treatments. I’m still working, traveling, and doing the things I enjoyed before myeloma entered my life. But I often think of a line from an Avril Lavigne song: “You’re watching your back/ Like you can’t relax.”
It’s hard to relax when you know the Hydra is waiting to sprout more heads with lots of sharp, pointy teeth. The end of treatment for active cancer is the beginning of constant vigilance. There are regular blood tests to monitor monoclonal protein spike (M-spike), immunoglobulins, and light chains. For a while, I was getting those monthly; I’m now on a quarterly schedule. There are PET and CT scans, as well as X-rays, to look for bone lesions. Some patients have regular bone marrow biopsies, too; I’m happy not to be in that group!
Plus, there’s maintenance treatment to keep the Hydra locked up for as long as possible, and regular injections or infusions for strengthening bones damaged or weakened by myeloma. And they come with potential side effects that make some patients feel pretty lousy.
It’s complicated, this business of staying healthy with myeloma. But I can live with complicated, and I plan to live with it right up to the day when “remission = cure” is no longer a fallacy.
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
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