Donna’s Advice to Multiple Myeloma Patients

This article was originally posted on Cure

Donna gives advice to other multiple myeloma patients about what she has learned from living with this disease and her various therapies.

Cristina Gasparetto, MD: We talked about your quality of life. Sometimes patients, they listen to us as physicians, but they listen to patients more. What type of advice would you want to give to other patients with multiple myeloma in your situation?

Donna Kidder: Well, first of all I would tell them to maintain hope, or faith or whatever, because so much is going on in this particular field. When I first was diagnosed, I was told I had one and a half to two and a half years to live, and the treatments I have had, none of them were available when I started.

Cristina Gasparetto, MD: That’s true.

Donna Kidder: So much research has been occurring that there’s always something out there that hasn’t been tried yet, so I think it’s a very positive sign. So at first, just have faith.

Cristina Gasparetto, MD: Perfect.

Donna Kidder: Second, I think it’s really important that patients communicate religiously with their providers, telling them about symptoms, because providers can help them with over-the-counter drugs to minimize the symptoms. But also, I want to make sure that providers have a good understanding of all of the side effects of these drugs, and unless patients communicate, they’re not going to have that information. And the last thing is to keep moving. Whatever you can do at a particular point in time with your therapy, you should be doing it, because if you become sedentary it’s going to become your life. I made up this term, “You should do the Donna cancan.” Do what you can, when you can, so that for the longest time possible you’re mobile and capable of fully enjoying your life. Those are my three things.

Cristina Gasparetto, MD: You’re great. You’re amazing, Donna, and I admire you a lot as a patient, as a friend. You’re correct. You are living with this disease, and so the communication with your physician is important. We approach myeloma at different levels; what we call the multidisciplinary management of myeloma is important because we want to maintain a good quality of life. So we work with a spine clinic, the renal clinic, the palliative, the pain control specialists. We all work together to make sure that you maintain a good quality of life. There is no point otherwise. The communication is important because every drug, every combination we choose is different for you. We have the expected side effects, but we can work with you to make it more manageable. I think it’s also very important to have your social network, your support at home. You are doing a phenomenal job, but I’m sure you have your network. Your caregiver, your people, right?

Donna Kidder: Yes.

Cristina Gasparetto, MD: I think it’s very important for every patient to delegate, to have their own social support. And also for the caregiver, it can be very stressful because sometimes they see you going down, reaching the bottom again. It’s very difficult to see a loved one going through that journey. I think it is very important also for the caregiver to be your cheerleader in a way. Does that make sense?

Donna Kidder: Yes.

Cristina Gasparetto, MD: My suggestion is, I always tell patients to live their life at full force. Exercise, maintain a good quality of life. Sometimes I adjust therapy based on if they have something to do, a trip or something. Of course we can do that. You need to address life, unless the myeloma is causing a lot of damage, but other than that, we can definitely make some adjustments. I think your quality of life is most important. As a physician, following patients with myeloma now for many years, I notice that patients are able to understand that. They live day-by-day and they enjoy their life, or they want it to be the best it can be.

Donna Kidder: Right.

Cristina Gasparetto, MD: They continue to live their life, and myeloma is not dictating; it’s part of their life, but not the driver of their life. You are controlling the myeloma, with our help.

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