Published on March 6, 2019
Who can help multiple myeloma patients reach exercise and nutrition goals during or after treatment? A panel of myeloma experts, including Alexa Welch and Melanie House, both from the University of Iowa Health Care, discuss how consulting with an oncology dietitian and physical therapist can help patients maintain or improve quality of life. 27-year myeloma survivor Jim Bond also gives a patient perspective on how others can advocate for themselves during treatment decision-making. Watch now to learn ways patients can partner with a multidisciplinary team of experts to receive the best care.
This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Celgene Corporation and Takeda Oncology for their support.
Transcript | Strengthening Your Medical Team: Benefits of Connecting With a Myeloma Dietitian
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
So, Alexa, and this is for you Melanie as well, but first you, Alexa—so what do we do—so, you all are at the big university medical center, but even if clinics, they often have a dietitian, increasingly now some larger clinics or physical therapist or maybe consulting one nearby.
Should we consult with you, not just if we’re having a transplant but we’re there for a clinic visit? Can we say, “I’d like to see the dietitian, I’d like to see the physical therapist because I want to be strong, I want exercise, I want to eat right?” That’s something that we can request, correct?
Absolutely. I know here we have a dietitian who works outpatients specifically just for our cancer patients who are here for clinic visits. Usually, her schedule is pretty flexible and she is able to add patients on the same day.
So, obviously, I don't know how it works everywhere, but every patient would be an advocate for themselves and how they want their treatment to go. So, if they're losing weight and they know they're not supposed to, they need to meet with a dietitian to see what they can do differently for calorie boosting, for protein-boosting and same thing I'm assuming with physical therapy as well. You need to be an advocate for yourself, ask for those consultations if you're not offered them.
Melanie, you would say that?
Yes, I would agree. And the other thing is actually, for physical therapy, in most states, it is a direct access option for you. So, it depends on what state you live in, but you don't always have to have a doctor's referral to be seen by a physical therapist.
That said, you've heard me say over and over if I'm recommending that you see a physical therapist, I want that therapist to actually be well-informed of your past medical history, any of your lab values, any of your films, and your imaging. So, some facilities will still request a PT consult just so that they have that physician connection and can get all those types of things that they need to know.
So, again, wherever you may be and the sound of my voice, if you will, all physical therapists are not equal. Melanie is an oncology physical therapist now, and she's gonna understand the risks you have in myeloma. We talked about bone, balance, the lab values etc. maybe even complications from treatment you've had or medicines you're taking. So, somebody needs to see the whole picture, same with the dietitian, right?
So, trying to see people get the whole picture is important, you're not gonna have that at the health food store, you probably won't have that at the pharmacy, you need to seek out somebody who has knowledge about this.
So, Jim, a little bit about cancer patient consumerism. You've got to really speak up for yourself. First of all, play a role in your care and speak up for yourself so you get the care you need and deserve.
What would you say to our listeners today, so that when they think about diet, exercise and going on with their life which many people—and you're a great example now-with myeloma can. What would you say to them so that they advocate for themselves to get consultants like these on their team?
Everybody's different and I believe everybody should handle their case the way they're comfortable. Here's what my wife and I are very comfortable with. I want to be an equal partner with my medical team. I don't want to be the boss and I don't want to be bossed around. I want to have an equal vote.
A good example of that is about the 10-year mark, I was told here in my hometown, “Jim you're done with any treatments available. So, you have to go to a hospice. You're all done.” And I said, “No, I’m not going to a hospice.” And that made the doctor leave the room angered, but before he left I was able to say I know of a clinical trial that I had gotten word of and an out of town second opinion in those 10 years.
I said I’m gonna try to get in that clinical trial and he told me I was wasting my time, I was lucky enough to get in it anyhow. I had to leave town and I think that’s one of the great examples of being an equal partner. The doctor had certain advice and it’s happened before in the 26 years. but I spoke up with my wife’s support.
I said, “Look, what if we tried it this way? What if we tried that three-drug mix but without the steroid? Because I don’t really like to take steroids once I learned it caused one hip to have to get replaced.” And the doc says, “I’m really not that keen on that, Jim but I’ll go along with you if you want to run the risk.”
I said, “Yeah, I really do and if doesn’t work and the numbers go up we can also add the steroid later.” And two months later the very popular myeloma doctor called me back and said, Jim, good call on your part it worked fine without the steroid.
So, be an advocate for yourself, don’t be afraid to get educated, there’s lots out there. But if you don’t want to, that’s okay too. If your way of handling is different from that, I believe your way’s right for you.
One thing I’d add to the stretching and the back stuff—I’ve got a really curved spine, I’ve lost at least three inches of height, and I’m sure I’m at risk for something back there. But they don't tell me, “Jim don't bend or don't do this.” Well, I do stretch my hamstrings daily, that's very important to me. And what I've learned to avoid, I don't lift heavy objects.
So, how do you go on with your life? Well, you figure out ways, it's great that we have luggage that has those rolled on them. I have a briefcase that has rollers on it, because I feel the pain if I lift, I'll feel the pain the next day.
So, I stay away from lifting but I just go ahead and do things and I try to ask the doctors and nurses, tell me what I should not do? And listen real carefully and being an equal partner, I got to weigh all that and let them know where we’re coming out on things.
But it’s fine to advocate for yourself and the longer each of you live with myeloma the more you’re gonna realize, hey, there’s a lot of flexibility here. No one’s got the answer or we’d have a cure, so there’s some flexibility, but you got to use your good judgment and that of your medical team.