Pat’s Place: The Philosophy Of Dealing With Side Effects From Myeloma Treatment
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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I love this post. I 'remind' myself every morning when I wake up and every night before I go to bed that I have myeloma (not as if I'm not aware throughout the day but morning and bedtime are the quiet times to think with tranquility). But I don't let myeloma define my daily existence. I'm fortunate to be able to go to work every day, to be able to exercise, to live without chronic pain right now. If people ask questions -- how do you feel? How are you doing? -- I answer quite candidly, surprisingly so for many of the questioners But not negatively. Factually, honestly. It is truly a balancing act.
Pat-
You are implying that conventional myeloma therapies as prescribed by most oncs are a necessary evil of multiple myeloma. That short and long term, late stage and permanent side effects are a necessity of cancer management.
This is simply not the case. There are a host of supplements that have been researched to enhance conventional myeloma therapy (cucumin enhances the effect of velcade) allowing the mmer to reduce her therapy- for example. Lower doses of thalidomide, revlimid, dex, etc can be more effective with lesser side effects.
http://multiplemyeloma.peoplebeatingcancer.org/pbc/search?page=1&pbc_sitename=All&keys=curcumin%20%2B%20velcade
Thalidomide first came on the mm scene 10 years ago as a novel therapy and was prescribed at 400mg per day. Oncs are now giving doses of 25mg daily.
Antioxidant supplementation before, during and after therapy has been shown to enhance chemo while reducing side effects.
http://multiplemyeloma.peoplebeatingcancer.org/pbc/search?pbc_sitename=All&keys=antioxidants+during+therapy
Exercise helps conventional therapy while reducing side effects.
The key to managing side effects is to question conventional oncology, read sites like the Myeloma Beacon and PeopleBeatingCancer.org to learn and empower yourself-knowledge is power.
David Emerson- 16 yr mm survivor- in cr since '99
David,
I have asked my nephrologist about whether curcumin has a negative effect on the kidneys and frankly he couldn't answer. Are you aware of any? Any other supplements you have used that don't negatively impact the kidneys (I was diagnosed with MM due to kidney failure and was on dialysis for over 2 months; I'm always protective of my kidneys!I would appreciate any guidance you can provide; you have a rare perspective on this cancer.
Hi Gino-
Great hearing from you! Glad you like my thoughts about balancing victim and embracing our cancer and taking responsiblility for our care. Keep reading and good luck with your myeloma journey! Pat
Dear David-
We all appreciate your taking the time to share your thoughts and suggest some alternative treatments which have worked for you!
I freely admit I approach my writing and myeloma from a conventional medical bias. No reason, really. I've never worked in the medical field and I don't rep for any drug company. I just figure you need big time weapons to fight a major disease like cancer. Supplements and alternatives may help--and like more conventiional treatments they may not. I know "lucky" and proactive survivors like yourself who have had good, long term luck with alternatives. I know some who have tried and failed. The important thing is letting patients know there are alternatives: Heck, a reader has already asked you for more info based on your comments. How great is that! And thank you again for going to the trouble to provide links for us to follow.
Sixteen years in CR--WOW! You have my attention! Good luck- Pat
Gino-
Sorry for my tardy response.
I do not know of any negative effects of curcumin on the kidneys. In fact, curcumin's has documented detoxification effects.
My reply to Gino threads into my reply to Pat. Pat, I agree that myeloma survivors need "big time weapons" to fight myeloma. The fact is that conventional therapies like thalidomide, revlimid and velcade do not work as single agents for the majority of mm survivors. This is why conventional oncology has combined two or three of these novel therapies into a single regimen with great success.
To take this idea of combining therapies a step further (integrate) I take antioxidant supplementation like curcumin, green tea extract, enzymes and others to enhance the therapeutic effect/decrease side effects of conventional therapies-
I'm not talking about alternatives- I am talking about integrating therapies. Anyone wondering about nutrition should go to Don's myeloma blog and read up on his meal planning. Don is a big fan of exercise too.
Pat, you write well and often. The Myeloma Beacon is a terrific stage for your column. I'll bet that other mmers/caregivers would like to read about the full spectrum of myeloma therapies rather than just reading about the narrow world of conventional myeloma therapy. JMO
David Emerson
Pat,
I was diagnosed about two and a half years ago. It got real bad real fast and I almost died from a chemo-induced pulmonary embolism. With the help of many doctors and nurses and most importantly my wife I made it through that, got into CR after about 6 months of treatment, and was eventually able to go back to work and get my life back to normal. It was a gradual thing, though. After about two years things were almost back to normal when I dropped out of remission and had to do a stem cell transplant. I am just about to go back to work.
I like to tell myself that I should stay positive and enjoy life because I really don't know how much time I have. There is a really good chance it will be a lot shorter than a "normal" person, but I like to think that as long as I am alive there is an excellent chance that treatments will continue to improve and I will live a normal life span. If that happens, I would feel really stupid to look back and think I ruined ten or twenty years of my life with my wife and kids being depressed and worrying about dying!
I have been lucky so far that I have responded well to treatment (mainly velcade) and have not had any major permanent disabling problems. I am also lucky to have a good job with great benefits, access to the best doctors in the world, and most importantly a very supportive family, especially my wife.
Anyway, stay positive and enjoy what you have! It is better than the alternative!
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