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Pat’s Place: The Philosophy Of Dealing With Side Effects From Myeloma Treatment

By: Pat Killingsworth; Published: August 12, 2010 @ 4:59 pm | Comments Disabled

Before I get started, a word of warning: This column isn’t going to be a collection of tips on “how to handle dexamethasone side-effects.” I would be glad to write about that sometime in the future.

No, this column is about how patients can and should philosophically deal with side-effects caused by their multiple myeloma therapy. Philosophically? “What does philosophy have to do with my peripheral neuropathy or inconvenient constipation?” you might ask.

Here’s the thing. I don’t want to discourage patients from venting about their “dex days,” fatigue, or peripheral neuropathy. And I certainly don’t want to minimize or seem to be unsympathetic to a patient’s frustration with the long-term effects of treatment.

But I believe how you view your treatment makes a big difference in how you feel—and how painfully inconvenienced your treatments make you feel.

Here is the brutal truth: Multiple myeloma is cancer—incurable (at least for now) cancer. It isn’t the cold, or flu, or tendinitis of the elbow.

I’ve seen a number of myeloma patients express frustration and act-out about the smallest of inconveniences. This is understandable. Myeloma is neither curable nor immediately terminal for many patients. It’s often considered a chronic disease – one that I’m sure all of us would like to just “wish” away so that we could feel normal and lead a normal life again. But we can't.

There are those who let their cancer control their lives. And then there are those who try to forget they have cancer and hope to get through the day without thinking or worrying about their multiple myeloma.

I believe a multiple myeloma patient should seek a happy medium here. Be aware of how you feel. Share your feelings and symptoms with your caregiver and health care team so they can work together to help minimize or erase as many negative side effects as possible. But try not to let cancer define you. At the same time, don't pretend it doesn't exist. This can be dangerous—both for your physical and emotional health.

We all want to live relatively normal lives. But remember, if you were diagnosed five years ago, you’re among the lucky half who is still alive and able to read this today.

With the recent advances in multiple myeloma treatment, could we all be getting spoiled?

In “the old days,” a cancer patient took whatever the doctor gave them—there really weren’t many options. Chemotherapy might make you sick for weeks—or even months. That is still the case today for many patients with solid tumor cancers. Once diagnosed with cancer, you expected the treatment might be worse than the disease!

We have come so far! Drug companies, researchers, and physicians have a moral obligation to work toward improving a patient’s overall quality of life—and, for the most part, they do. And the longer we live, the more important it is to minimize negative side effects caused by long-term use of anti-myeloma therapy agents.

But a patient is not without responsibility as well. Eat healthy, and exercise daily. Take your meds on time. Work hard to stay positive.

Staying positive is at least as important as any of the other patient responsibilities. Why? Because studies prove patients with positive attitudes heal faster and better. Because positive patients tend to get out more, stay more active, and feel better. I know, I know—that's easier said than done. So next week, I will share a few tips with you that some of my multiple myeloma friends use to help them stay positive.

Until then, feel good and keep smiling! Pat

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