The days of a cancer patient blindly following the doctor’s orders and rarely getting a second opinion are over. For multiple myeloma, there aren’t just one or two standard treatment options.
Instead, you and your doctor will often face a choice of three or more treatment plans. Some physicians prefer certain approaches, so it’s important when you are first diagnosed to get an opinion from several different treatment centers and to select the one whose approach you are comfortable with.
Sometimes your treatment choices are limited by other underlying health issues—or by the specific type of myeloma you have. But if you are part of the larger patient community without such limitations, developing a therapy plan can involve many different choices.
What type of initial, or induction therapy, should your doctor try first? If that works, should the plan be to immediately undergo a stem cell transplant, or should you wait until after first relapse? What then? Should your doctor put you on ongoing maintenance therapy or recommend your body rest and simply watch and wait for the myeloma to return?
This can all seem overwhelming at times. I understand. Been there, doing that!
Like anything new, it takes time to catch on. Here’s the good news: Myeloma tends to move slowly, giving you plenty of time to learn about your options if you follow sites like The Myeloma Beacon.
Let me make a few suggestions based on my experiences so far. Read about multiple myeloma a half hour or so every day. Use a journal to take notes. Ask your oncology nurse or doctor questions when you don’t understand something. Get your doctor to sit down with you and explain his or her treatment plan. Write it down. Then ask why?
This happened to me yesterday. My oncologist, Dr. Alsina, recommended I get a positron emission tomography (PET) scan to help understand why there are new holes—or lesions—in my hip. I asked her, “Why a PET scan?” After all, I had already undergone x-rays and magnetic resonance imaging of the area. A new hole or “hot spot” was clearly visible on those films. She responded, “Changes in bones are non-specific. PET scan will help determine if these are related to myeloma or not.”
Makes sense. Next, I followed-up with my oncology nurse, Ally. We worked together to schedule the PET scan, a new bone survey, and my lab work—which takes up to a week to get back—for the week prior to my regular quarterly visit with Dr. Alsina. That way she would have all of the information together to review prior to our appointment.
Since I have this new “hot spot” in my hip—and my monoclonal protein numbers, or M-spike, is rising—Dr. Alsina, Ally, and other members of my health care team will sit down with me to discuss a new treatment plan.
Like coaches preparing for a big game, we will lay out a strategy that may include radiation and a change in my chemotherapy regimen. Since this is my first relapse since I was diagnosed four years ago, we will also discuss whether I should undergo a stem cell transplant—also my first.
It’s a lot of work to keep up and learn about this stuff. But when the time comes for a coach to develop strategy for the big game, he or she had better be prepared!
There isn’t any game bigger than this one—it’s my life! I’m not going to blindly turn my future over to my doctor. I’m going to be an active participant in my treatment plan. What will you do?
If it makes you feel any better, here’s something else to think about. Your doctor not only needs to be an expert in your type of multiple myeloma, but other types of myeloma as well—and lymphoma, leukemia, amyloidosis, and other blood cancers. If they are a general, medical oncologist, your doctor also needs to understand solid tumor pathology and therapies. This means lung, kidney, liver, and breast cancer, to name a few.
You have it easy! You only need to learn about one type of cancer—yours. You only need to follow the progress of one patient—you.
How much does a multiple myeloma patient need to know about various treatment options? Enough to understand your options whenever you sit down with your health care team to make decisions that will affect your treatment and your life.
You can do this! Feel good and keep smiling! Pat
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