Published on May 8, 2017
In this Patient Power replay, host Andrew Schorr sits with an expert panel to discuss integrated medicine and strategies for living well with multiple myeloma. The expert panel features Dr. Suresh Reddy and Dr. Robert Orlowski, both from MD Anderson Cancer Center, as well as Dr. Larry Anderson, Jr. and patient advocate, Lynette Heniff. The panel also touches on the importance of disclosing information with one's doctor, improving quality of life, finding support and financial toxicity issues.
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Transcript | Integrated Medicine for Myeloma Patients, Advice From Specialists
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I have a question about integrated medicine. And actually, here at MD Anderson, I don’t know if you have somebody here at UT Southwestern Dallas, but here they have a fellow named Lorenzo Kohn. We’ve had him on programs before, and you know him as well, Dr. Reddy. So let’s talk about that. People are going to say what can I do myself? Can I take supplements? Dr. Reddy, maybe you want to talk about it. In some states, let’s say for pain or nausea, it might be medical marijuana they would wonder about, or acupuncture or other things. What can I do myself outside of the clinic? Maybe you could talk about that a little bit, because people want to take back control.
I think as far as herbal medications, a lot of patients do take them anyway. Unless you ask them, they won’t reveal what they’re taking.
And they should.
And they should, because sometimes there are interactions between those medications that they are taking, and then the treatment for myeloma, it could be. So it’s important for them to disclose what they’re doing. But typically, we don’t ask them. That’s why sometimes having an integrated medicine department who really specializes in this, who are able to advise people on this herbal medication is very important. So coming to taking care of themselves, the advice is being generally integrated medicine department, we generally teach them meditation, mindfulness and sometimes yoga, and deep breathing techniques and things like that. So this directly impacts the emotional aspects.
And acupuncture for pain?
Acupuncture for pain. There’s a lot of evidence that acupuncture helps, especially in acute situations—not in every patient but it’s worthwhile trying it just to see how much it’s helping.
Okay. I want to get a comment from you two about things that people do and their importance on disclosure. You’re trying to fight the cancer with them, and you have that long list of medicines, different properties. I didn’t remember the dexamethasone (Decadron) can be an anti-cancer drug, as well. So they’re running around, or a neighbor or a friend is saying to go on this diet or do this ad that. They don’t tell you.
So first of all, do you ever have any concern that something that they may be doing is working against what you’re trying to do for them? Do you want to start with that, Larry?
Sure. There are some studies, at least in the test tube, showing that some of these supplements in high doses, for example vitamin C and others, can interact and interfere with the activity of the myeloma treatments. And so we want to know if they’re taking any of these and also avoid taking high doses of those type of medications or over-the-counter supplements.
Okay, any comment about that?
Yes, I would agree. Bortezomib (Velcade) in particular is the drug that can be interfered with by—we think—high doses of vitamin C in patients, although again it’s only been looked at in test tubes. But it is worth having a good discussion with your doctor or nurse practitioner or physician assistant just to make sure that everybody is on the same page. And there are some supplements that may be of benefit. There are some suggestions that maybe some of them would help with neuropathy, for example.
The problem is most of them have not been studied in what we would consider kind of gold standard studies, where you do a randomized trial. Half of people get the intervention, half of people don’t, and you see which half does better.
I think what people worry about in disclosing any of this to you is you’re going to judge them. And it’s not about judgment.
No, not at all. Many of the drugs that we use have some basis for their start in natural products. And it’s very possible that some of these can be of some benefit. The problem is that they’re not regulated in the same way as drugs by the FDA. So they can make broader claims with less information to back them up. And especially if it comes to things like financial toxicity, a lot of the therapies that we have now unfortunately can be quite expensive, and sometimes insurance covers it, sometimes it doesn’t.
If you’re spending a ton of money on top of that for supplements, you should only be doing it if there’s good evidence that they actually work, not because there’s a website somewhere that says this helps against myeloma.
Yeah, I keep giving the example of my dad, but I remember as his prostate cancer advanced, somebody told him there was some website for a product from China that was going to help, and he never told his doctor.
And he spent a lot of money on it for a little while. It never did anything that he could tell, but it was sort of out of sync with everything else and cost him dough. There are people that want to take your money, unfortunately, for things that can’t be proven. Now, there are things that you can discuss with scientists like this, and you can see is there evidence of that. And I think that’s a fair discussion. We talked about emotional. I'll just say I can share this about exercise. There have been studies that show even if you’re in active cancer treatment, exercise is a good thing.
And I think you were talking about keeping people moving, Dr. Reddy. So if you are—whether it’s pain or something else, end up staying in bed, that can set you up—particularly for an older person—for pneumonia and lots of other things that ain’t good, right? You gotta keep moving.
Absolutely. That’s why the number one thing we look for is the function.
I think if they don’t have good function, then they won’t be eligible for a lot of trials, because they’re bedbound, and their functionalsituationis not good. They won’t be able to take the strong chemotherapy. Because they’re bedbound, they’re losing muscle, and that sets in a whole, vicious cycle of staying in bed. They don’t use motivation. You don’t release your own natural chemicals. There are so many aspects to it. So that’s why we, in addition to controlling pain, we insist about function, improving function.
It’s not that you have to run a marathon.
Just do—it’s like Nike used to say: just do it.
Lynette, so what do you do for support? Do you use any online support groups? What do you do for support?
Primarily I just communicate with family and friends. I’m not using any online support groups this time.
I’ve actually tried to, about once a month, meet with a group of ladies for lunch that I used to work with. So just getting out there and trying to do some of those kind of things, calling and touching base with friends. I actually recently, about a month or two ago, one of my best friends in DC and I started a Bible study over Skype. So once a week we get together and discuss the section of the Bible that we’ve been studying.
And in addition to that, touch base on how our lives are going, how we’re feeling, some of those kinds of things. And sometimes I’m bringing up my kid griped about her. Okay, sometimes I’m bringing up my health issues and what’s going on there. Sometimes we’re talking about what’s going on in her life. So it helps to have those people to share with, no matter how you’re doing it—whether it’s over the phone, meeting in person, some of the new technologies that are out there.
I think there’s a good point you were making there. You don’t wear like a big sign that says myeloma. You have many other aspects of your life. And while you’re attentive to your myeloma, you’re going on with your life in other things. And your support is about you as a whole person.
And I think that’s important for people. We talked about anxiety and depression. It can just be debilitating. It’s all you think about. When you have so much else in your life, and their whole job in working with you is to have you live your life. So we have to remind ourselves to go live it, be attentive to our cancer care but go live it. Okay. So I'll just mention some support group resources. There are a number. So first of all, there are a number of groups. Myeloma Crowd is very active in that. There’s the International Myeloma Foundation, the Multiple Myeloma Research Foundation.
There are groups on ACOR.org in myeloma. There’s a group called Health on Lot. Now you have a new group called Smart Patients, various websites. And then there are our friends on Facebook who have started different communications. My friend—you know her, Bob—Cindy Chmielewski and Jack Aiello and all that. The Leukemia & Lymphoma Society have patient assistance managers, as well. And you used to work—I wanted to talk about it just before we get to Q&A—financial toxicity. And actually, I got to be an advisor one time for the President’s Cancer Panel.
It was really cool. I flew from California to New York and got to be on with a lot of people who were very concerned. And, of course, Dr. Ken Tarshan here at MD Anderson sounded off about drug costs. I’ve heard it can cost anywhere from $2.5 billion to $5 billion to get some cancer drugs to approval.
You’ll see drug companies working together and pooling money to do it. It’s a long road, very expensive, and then these drugs can be very expensive. One I take for blood cancer is $10,000 a month a pill. Thank God insurance is paying for it right now. Not everybody has that insurance. And if you’re combining drugs, and you guys are saying we’re going to combine drug A with drug B, how are we going to afford it? And if there’s a copay, so we’re worried about that.
And I know you as physicians think about that, too, with your various organizations. So I will mention that as drugs are approved, many of the drug companies have assistance programs. So it’s important to ask. And Tiffany had to leave us. But often the nurse practitioner, the physician’s assistant, the oncology social worker can help you see are there resources to help you in your situation with even approved medicine that may otherwise be out of reach for you.
There are assistance programs. There is copay assistance, whatever. And you don’t have to be destitute. It varies by program, so you’ve got to ask. Just like we said in corrects, maybe you can’t afford the plane ticket, or maybe you can’t afford the hotel. Is there assistance for you to be in a trial? Okay, enough said.