Krisstina Gowin, DO and Onyemaechi Okolo, MD
University of Arizona Cancer Center
Interview Date: September 4, 2020
Thanks to our episode sponsor
We've heard about using complementary medicines or alternative medicines when thinking about cancer treatment, but what about an integrated approach, where myeloma therapy is used in addition to other helpful treatments or therapies? Dr. Gowin and Dr. Okolo join Myeloma Crowd Radio for an excellent review on a new term called "Integrative Medicine" - taking the best regular myeloma care has to offer and adding to it with additional modalities. Learn more about fitness approaches, Tai Chi, acupuncture, vitamins and supplements, curcumin, sugar and more in this valuable show.
To hold a telehealth integrative medicine visit with Dr. Gowin, please call 520-694-2873 for an appointment.
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Jenny: Welcome to today’s episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers. I’m your host, Jenny Ahlstrom.
We’d like to thank our episode sponsor, Karyopharm Therapeutics, for their support of Myeloma Crowd Radio and this episode.
Now, I would say one of the most common set of questions we get from myeloma patients that we support as we've administered our different Myeloma Crowd programs include the use of alternative and complementary therapies. Every patient wants to know what they can do in addition to their myeloma care to help them get better outcomes and how to improve their quality of life. So we all want to know that as patients. I remember some of the first discussions I ever had with my doctor, well, what should I be eating? What should I change about my diet or what are other things that I can be doing?
Now today we have with us two myeloma experts who are performing research on such topics. We are very excited to host Dr. Krisstina Gowin and Dr. Onyema Okolo from the University of Arizona. Welcome, Doctors.
Dr. Okola: Thank you.
Dr. Gowin: Oh, thank you so much. We're so excited to be here. Thank you so much to the Myeloma Crowd Radio and all you do. We really appreciate it.
Jenny: I know patients are very excited to hear what you have to say today. But before we get started and jump into questions, let me introduce you both.
Dr. Krisstina Gowin is Assistant Professor of Medicine and practicing myeloma specialist at the University of Arizona Cancer Center and performed her fellowship at the Mayo Clinic in Scottsdale, Arizona. Dr. Gowin is doing extensive research on the use of integrative medicine in multiple myeloma.
Dr. Okolo is performing her Hematology and Oncology Fellowship at the University of Arizona Medical Center in Tucson under the direction of Dr. Gowin. She has won the Arnold P. Gold Humanism Honor Society and White Coat Award nominee. She also belongs to ASH, ASCO, and the African Organization for Research and Training in Cancer.
Well, let's go ahead and jump into the questions, and I'll let you to decide who's going to answer the question, or maybe both. But maybe you want to start with a broad definition of what is considered an alternative therapy. I've heard this kind of formal definition of complementary and alternative medicine, I guess, or call it CAM for short. But what actually is it?
Dr. Gowin: Yes, thank you for that. So I would say that as a community now, we're really moving towards the term of integrative medicine. What integrative medicine is, it's really the best that Western medicine has to offer. It's precision-based medicine, all of our wonderful therapies, NCCN Guidelines. But then we're using kind of the ages of wisdom from other cultures, lifestyle medicine, botanicals, all together really to aim at improving outcomes, improving quality of life. We now have a society and that's called the Society of Integrative Oncology. They actually came together in 2017 and came up with a robust definition of what integrative oncology is. They did this via survey-based analysis and actually came together on a really structured way to formulate this definition. So I'll read that to you.
Integrative oncology is a patient-centered, evidence-informed field of cancer care that utilizes mind and body practices, natural product, and lifestyle modifications from different traditions alongside. This is the key. It's really alongside conventional cancer treatments, and that's where it differs from alternative medicine. Integrative oncology aims to optimize health, quality of life, and clinical outcomes across the cancer care continuum to empower people.
I think that's really the strength of integrative medicine is it really empowers people to prevent cancer and to become active participants before, during and beyond their cancer treatments. So that's kind of the accepted definition of what integrative oncology is at this time.
Jenny: Well, thank you for that definition because I think sometimes patients hear all types of different terms and are kind of not sure. I know some patients have reached out and said, "What can I use instead of conventional therapy?" I love the fact that it's evidence-informed. What you said is so key. So you're bringing this all together. I think that's really truly amazing and should be done more in oncology.
Dr. Okola: Agreed.
Dr. Gowin: Absolutely, absolutely. The best outcomes are really when you get the best of both worlds, right? Whenever patients come to me, like the scenario you had said and said, "What can I do instead of?" I really tried to convince them that, oh, no, it's not instead of. It's an in addition to, what can we do to make this more tolerable for you so you can get the best of both worlds?
Jenny: Well, also, I think your point about empowered patients is really key because it's not fun to have to go through cancer treatment at any level, but there are things and ways that you can change that experience for yourself. If you feel like there are certain things that you can do to improve your quality of life, to increase the speed at which you recover, or to strengthen your immune system in between treatments or even during treatments, these are really important things that a patient can feel like, okay, I have this thing I'm dealing with, but I still can live my life in a really great way and be in control of my life.
Dr. Gowin: Exactly.
Dr. Gowin: I think you hit the nail on the head there because unlike other health problems where the patient in the driver's seat as far as I have diabetes, I'm going to choose to lower my ANC by working on my diet and taking my insulin and things like that, when you enter the realm of cancer, it's mostly the oncologist that's in the driver's seat. So many patients no longer feel empowered and end up seeking other methods to empower themselves. I think integrative medicine and integrative oncology really does emphasize the partnership between the oncologist and the patient.
Jenny: Yes, I think that's a really critical -- it is about shared decision making. It is about working together as a team. Sometimes patients, it depends on the person's personality. Some people are more forceful and self-directed, and some people are more accommodating, I think. It's just important to take charge of that, of what you can, and it makes you feel happier. I'm just curious about how you both became interested in this topic because I think in many clinics, there's not a lot of expertise on this topic.
Dr. Gowin: That's so true. It always resonated with me. My whole philosophy of wellness even as I med students, a resident and fellow, you really have to look at the whole person. So it's not just about taking that medicine. It's about taking care of the cells and all the domains of the cells. I immediately was drawn to osteopathic medicine, integrative medicine. I knew that that was going to be a part of my practice moving forward. And then as I was a fellow, particularly in oncology, you could just see the patient's desire. Again, they wanted that piece to empower their own path. They wanted more data. Then there's this unmet need as well as we have these wonderful cancer therapeutics, and they're phenomenally effective against cancer, but unfortunately, the quality of life is still suffering. So that's where the beauty again of integrative medicine lies is that it can help to fulfill that unmet need. So it's been a long journey for me, but I always know that that was going to be a piece of the puzzle.
Jenny: Dr. Okolo, how about you?
Dr. Okola: I wasn't born in the US and so cultural practices, especially the differences in medical care as far as different cultures, have always been interesting to me. I wanted to learn the best way to care for myself, optimize my health, but also honor my immigrant heritage and my culture. There didn't really seem to be a lot of room for that just in conventional medicine. It was mostly treating an illness, take this medicine. So on my own, I kind of began, like Dr. Gowin, incorporating different cultural aspects to my wellness and taking charge of my life in that manner.
When I started med school and then started residency, I started to find that preventive medicine was something that was very important to me. When I started working with cancer patients, I found that the fear of things like recurrence or what could I have done or what can I do now, those questions always came up. I'm lucky in that I ended up at the University of Arizona, which is kind of the grandfather institution for integrative medicine. So I was able to start an integrative medicine fellowship here. If you want to call it kismet is where I met Dr. Gowin, and she became my mentor. So for me, it almost seemed like this has always been the path for me. There was kind of no resistance in moving towards this direction. So I've been really lucky in that.
Jenny: Well, we're so happy both of you are studying this because I think we do need more data, I think, so you can make these evidence-informed decisions of what works and what doesn't. We'll talk about that a little bit later in the show how you're trying to do that. Maybe before we jump into different types of these integrative medicine therapies, can you just identify the outline of the potential benefits? I mean, you're talking about people as being a whole person. I love that you're thinking about it like that. How does that affect you, in what types of ways, using integrative medicine? Can it actually have an impact on your immune system or things that are more measurable, I guess? There are things that are not measurable, or I guess they could be in different ways. But maybe you want to give us an idea of overarching potential benefits of using integrative medicine that you've seen in your patients.
Dr. Gowin: You bet. I would say, Jenny, that the first thing is it's such a personalized approach to each patient. So the integrative oncology visit that I do is separate from my medical myeloma visits, and it's a full hour to 90 minutes that I spend with each patient. During that time, I take an extensive history about their lifestyle factors, their stress factors, social factors, spiritual factors, joy factor, and what is it that they really want to accomplish together as a team. I think that so much drives our goal making together and what our event intervention is together.
Every patient during that office visit, we kind of go through what I call the four pillars of wellness, which is body, mind, spirit and joy. So within the body category, we talk about the foundation really is Western medicine, the best that we have of our targeted therapies. What is your FISH panel? What are your cytogenetics? How are we using that to tailor your therapies? the best of that kind of medicine. And then just to step up, we talk about lifestyle medicine and what they're doing now and how we can complement that. How are they sleeping? We dive into botanicals. Some patients are taking a laundry list of different supplements and botanicals. Honestly, a lot of times my practice is paring that down. Then others have no interest in botanicals.
We talk about touch therapies and how that can really complement the care. Then we talk about mind, and that's really stress reduction. What we know about stress is there's a trigger in the mind, whether that's internal or external, and that triggers hormones to be produced, and that's from the brain that go to the adrenal cortex and produces norepinephrine and cortisol, and then that actually impacts the tumor microenvironment. We see that viruses are replicating faster. The cancer cells are replicating faster. More blood vessels grow. The immune system is thwarted. There's less natural killer cell activity. There's less of them. They're less active. So that's all the tumor microenvironment that's impacted by stress.
So we spend time identifying stress and methods that already resonate with the patient on how to release that stress because getting into a peaceful, relaxed space is really good medicine. Then we talk about spiritual care. Again, that's so, so unique to each patient and just asking what is their practice. If they are not spiritual, are they connected to nature, because we see that those that have a meaningful connection to something else aside of themselves tend to have better outcomes, better quality of life.
Then the final pillar is really joy. Joy sometimes is lost, particularly amidst COVID and quarantine but also cancer diagnosis. So trying to find that spark of joy and intention for joy every day is really powerful medicine.
So every patient -- kind of a long answer to your question there -- but every patient will gravitate a little bit more or less to each one of those pillars. So the intervention and the outcome and what we measure, sometimes it's strength. You can actually measure that with some of our frailty myeloma index scores which I have seen go down, because higher is worse, go down with integrative interventions, particularly physical activity interventions, anti-inflammatory diet.
I've actually had a patient who had induction therapy transplant without maintenance therapy and didn't tolerate his Revlimid very well and actually was off therapy for a while when I met him. He had biochemical relapse, and he was very stressed about a couple of things. I said, "Well, look, there's no clinical relapse here, and it's a small biochemical relapse that we just hear M spike again. What if we tried integrative intervention? For him, we did kind of that four-pronged approach again, and his M spike disappeared within two months of therapy.
So that was a really, I mean, that's an anecdotal intervention within my practice, and I have a few as though. But again, that's a measurable outcome. Why that have happened anyways we don't know and which component. This was the complexity of integrative medicine is which component really was the active intervention there, we don't know, but it was impactful. I've had patients with terrible neuropathy, limiting their therapy, and did some integrative interventions, anti-inflammatory diet, omega 3's, turmeric, acupuncture, and then all of a sudden, their neuropathy was much better and they were able to get back on therapy again. So those are some examples, kind of a broad structure of how I approach integrative medicine in my clinic.
Dr. Okolo, did you have any examples of how you're integrating it in your clinic?
Dr. Okola: I think the first thing is always just letting patients know that it is a subject that is on the table, but it's an open subject and they shouldn't feel restricted as far as having that discussion with you in the first place. I also think specifically in the myeloma population, it's a malignancy of cancer that is especially impactful and affects the immune system. All of the modalities, you discussed the four pillars, all in some way help to positively affect the immune system. I think that's a big buzzword nowadays, especially with the pandemic going on, is how can we optimize my health in the midst of this disease and increase and improve my immune system? I think everything you said is very, very relevant and help integrate all of these things together.
Jenny: Yes, COVID hasn't helped, right?
Dr. Gowin: No.
Jenny: I mean, it's all part of dealing with multiple myeloma, and then you have COVID on top of it. I wish this were everywhere because I've been seen by really top experts at several facilities. This idea has never been offered. I would love it. I think it would be fantastic. So I wish this were everywhere at every facility. I think patients at the end might be asking if you do telemedicine visits, the two of you.
Dr. Gowin: We do.
Jenny: Yes, to do that, I think that would be really awesome. But anyway, I love the four pillars and how you're thinking about it and how you're thinking about what's lacking or what you can add to each one and do that personally. I love that it's a separate appointment that you have when you're not just talking about what myeloma treatment are you on and what's your M protein level or your kappa light chains or whatever.
Dr. Gowin: Exactly.
Jenny: Which is also important, equally as important, right?
Dr. Gowin: I find that having that separate space, really it opens the discussion up into a whole new way. So patients just soften and open when it's really under the umbrella of integrative medicine. I do think that separate appointment is very useful.
Jenny: Oh, I think it'd be fantastic for everybody. Well, let's jump in and talk about different types of integrative medicine. They seem to fall in certain categories. Maybe you can just share what types of resources are available, how they're used, especially with myeloma patients, where you're seeing things the most beneficial or not, and go through some of these things. Then I would just have everyone listening be thinking of questions you might want to ask at the end of the show. We'll have some Q&A time. When you have that time, you can press 1 on your keypad, and then I'll know you have a question for the doctors.
So let's talk about first fitness types of approaches, yoga or just general exercise or things like Tai Chi or things that are, I guess, things that are physical in nature. What are the resources that you have used or find most effective?
Dr. Okola: First of all, I want to say maintaining physical fitness is not only feasible in patients with cancer, including those actively receiving chemotherapy has actually been shown to be beneficial and improve clinical outcomes. So this can be something as simple, well, not simple but something like maintaining a healthy BMI, which is inversely associated with all-cause mortality. What that means is that, so better outcomes for those who start off healthier, which makes sense.
Something that was really good this year, this year's American Society of Clinical Oncology Scientific Program Annual Meeting featured a lot of research and poster presentations showing the impact of exercise in our patient population. Over the years, I've noticed that this kind of research are becoming more and more prevalent because we are recognizing how important it is. Fitness regimens can and should include things like aerobic exercise, meditative movements. For example, aerobic exercise specifically has been shown to decrease fatigue, maintain VO2 peak, allows our patients to return to regular life faster. Generally, also patient reported improvement and just quality of life. So that is just the baseline of just trying to maintain your physicality while you are dealing with a malignancy. That's with no medications, just already putting yourself ahead of the game.
Things like yoga use breath control, meditation, specific physical postures. Yoga has been shown to lower anxiety levels and stress, helps improve sleep, reduce fatigue. As you can imagine, when you're dealing with myeloma, if you're having increased anxiety and you're not sleeping and you're fatigued, you're not going to feel good even when you are getting your treatments. The improvement in quality of life cannot be overstated. Other things like Tai Chi and Qigong, which are related mind and body practices similar to yoga, are particularly great in things like improving balance and stability. Some research has actually shown that Tai Chi can increase T cell activity. T cells are cells that help with our immunity by possibly decreasing inflammatory responses. There's just so much when it comes to the physicality, the physical movements that you can do when dealing with malignancy and myeloma.
So that's physical. We can discuss things like just meditation. So you can sometimes feel that if you're just sitting there meditating, you may not be doing much, but essentially when you're doing something like a guided meditation, which is when you have a coach, which is either video or sound or music to help you through your meditation practice, we have data that shows reduced anxiety, providing better mental clarity. It's also been shown some moderate pain symptoms, reduce frequency of negative thinking, and decreased insomnia, and increased general feelings of wellbeing, which is everything we want when we're taking care of our patients, we want the best possible scenario while dealing with with cancer. So guided meditation and mindful breathing.
One such method I practice is called the 4-7-8 breathing technique. Dr. Gowin and I have done this in clinic to recenter several times during the day. It's a breathing technique when you exhale completely through your mouth, inhale through the nose for a count of four, hold that breath for a count of seven, exhale through the mouth for a count of eight. I do this three to five times in one sitting, and it just refocuses instantly, reduces stress, and it's something that anyone can do at any point. That also has been shown to have such great benefit. So those are kind of more, I would say, well-known or semi-mainstream methods.
Dr. Gowin, I didn't know if you wanted to jump in on any of those before we kind of move into talking about things like food and supplements.
Dr. Gowin: Sure. So meditative movement such as yoga and Tai Chi is actually an area of my research interest. So I did a clinical trial, two different clinical trials, looking at yoga. Yoga actually decreased depression and fatigue levels. Then in our second pilot, we actually measured markers of inflammation on using tumor necrosis factor alpha, as well as salivary cortisol, both of which were impacted with only 60 minutes of yoga a week. So very little amounts of yoga burden but quite a bit of benefit there.
Then in Tai Chi, I think there's just something very unique about the complement of meditation and body movement. This is ancient medicine and kind of going back to the definition of integrative oncology, the cultural medicine from the ancient wisdom, from Indian medicine, Chinese medicine. So Tai Chi is just centuries old. But I did a pilot during my time at Mayo Clinic in Scottsdale looking at Tai Chi Easy intervention. So it's an easy version during autologous bone marrow transplant for multiple myeloma patients. It was randomized, and there was a journaling control. We had 29 patients. Those that were randomized to the Tai Chi Easy arm actually had two-day shorter hospitalization, which was statistically significant, as well as less episodes of febrile neutropenia. The hypothesis there is that again that Tai Chi is actually impacting the immune reconstitution post-transplant.
I just received a grant to study this further here at the University of Arizona. I am partnering with Ricky Simpson, who is fantastic NASA exercise physiologist. He's been looking at myeloma as well. He found that exercise via a bicycle, so bicycling, kind of vigorous exercise, actually changes the natural killer cell type, what we call the phenotype, as well as the activity of the natural killer cells post-exercise. So we're going to measure this now in his lab with Tai Chi Easy during transplant here at the University of Arizona. We'll be looking at immunoglobulin levels as well as lymphocyte subsets and natural killer cell activity and phenotype.
What's really interesting is we know that master killer cells are so potent against myeloma cells. The long theory is that if we can augment this NK response post-transplant with Tai Chi Easy, can we affect myeloma outcomes? So we're going to be doing MRD assessment with Adaptive clonoSEQ on all of these patients as well with a plan to do a larger clinical trial in the future with that being our endpoint is great with MRD negativity. So I'm really jazzed about that trial. I think that's going to be a lot of fun. Again, it's such an easy thing to do at home with no risk. It also has been shown in elderly populations to decrease the risk of falls. So it's great for elderly patients with neuropathy in particular. So why not? What an easy tool to be putting in your tool belt. I'm a huge Tai Chi fan.
Then the 4-7-8 breathing. I've had many patients who have had significant anxiety and were actually on benzodiazepines, so these anti-anxiety oral medications, and have discontinued after routinely practicing this 4-7-8 breathing technique. So it really is a learned response. Once it's practiced, it gets more potent. I typically tell patients to wake up in the morning with their 4-7-8 breaths and then in the evening before going to bed, practicing it again and then calling upon that breathing technique anytime that they feel like they're in that stress response throughout the day, whether it be driving during a PET scan, receiving their chemotherapy, et cetera. I do think that's a really powerful technique.
Jenny: Well, I have an incredible number of things I need to go try now. I think we'll write an article on the 4-7-8 breathing so patients can kind of learn in more detail what that's all about. And then, yes, I don't know anything about Tai Chi. So now you have me curious about doing that. I could probably do 60 minutes of yoga a week. Just a little shout out too is that we know how important fitness is for myeloma patients. So we have this Muscles for Myeloma Challenge going where you can download this Move Spring app, and you can just track your minutes. And then we have a fun set of prizes that you can do. You can do it through the month of September because it's blood cancer awareness month. So we're trying to do our part, I think, to encourage that. But yes, now I want to go take a Tai Chi class. That's fantastic.
Dr. Gowin: Great. My work here is done.
Jenny: No, not yet :) We have a lot still to talk about. So other types of therapy, like in your study that you're running that we'll mention in more detail later, inside of HealthTree, there are some things that you ask about like music therapy or laughter therapy or dance or cooking or support groups. Can you talk about those types of therapies as well?
Dr. Okola: For sure. I will talk about something else aside from physical fitness, and close to my heart is cooking. I find cooking to be very therapeutic in and of itself because you get multiple benefits in one activity. Cooking allows you not only to be mindful and present about the ingredients that you're using and the choices you're making about what you put into your body, but it can also be great aromatherapeutic activity. It can be a social activity, bringing friends and families together so that you know you're feeding your body but you're also feeding your soul.
Diet and nutrition are probably the backbone of integrative medicine as Dr. Gowin will agree, I'm sure. One motto that I always tell patients was actually coined by Hippocrates, the father of modern medicine, where he says, "Let food be thy medicine and medicine thy food." So your body is a vehicle that moves you through this life, and you want to be able to withstand the effects of life. That starts from making sure you have a firm foundation, and that starts with healthy foods. I generally advise patients to maintain a colorful plate. By that I mean eating foods that aren't beige. There's nothing inside of beige food that is good. You want vegetables and fruits to be the base of your mealtime. A primarily plant-based diet has been shown to reduce risk of certain cancers and also improve outcomes of patients living with cancer because it helps reduce chronic inflammation.
One very well-studied diet is the Mediterranean diet and that emphasizes veggies, whole grains, fruits, nuts, olive oils, fish for the omega 3 fatty acids. It also limits things like red meat. So it's not saying you can't have it, just not as much, and also processed meats, which we have data showing that processed meats actually increase the rates of cancer. So when you get your nutrients primarily from your food, the amount of supplements that you need to take, you get your phytonutrients, your ligands, which are from seeds and whole grains, indoles from things like kale and Brussel sprouts and carotenoids from tomatoes and carrots and your flavonoids from apples and onions and things like that.
So when you have a healthy diet, you're already giving your body all of the supplements that you need. So that's why Dr. Gowin mentioned, sometimes in her integrative medicine practice, she sees patients that just have a plethora of supplements on their med list, she actually is able to optimize them and reduce the number of supplements they're taking just by helping them get to a better diet and nutrition status.
But I do think that supplements tend to be the biggest elephant in the room when it comes to caring for patients in our population. I find that, like I mentioned before, a lot of patients tend to feel powerless when it comes to treating their cancer, and they want to be an active participant. One such method is through taking supplements. It's important to know that not all supplements are created equally. It's important to look at the labels, ensure you're getting something of quality. Some specific quality control groups are the USP or the NSF, Consumer Labs.
So I always encourage patients who are taking supplements, make sure you're taking supplements of quality. You also need to be honest with your oncologist when using supplements. Some supplements can have negative interactions with your treatment. Especially with the combination of chemotherapies, we know that certain antioxidants like vitamin C and E work against chemotherapy. We usually will recommend patients to not take things like that while on active chemotherapy where they can be useful outside of that timeframe. So these are just some examples of how you can optimize your diet and take some supplements. I think the practice of integrative oncology gives us the knowledge to be able to have these conversations comfortably with our patients.
Jenny: That's a really important point, that you need to tell your doctor what you're doing in terms of supplements or vitamins or things like that. At my facility, they told me kind of a horror story when I first started getting treatment 10 years ago about a patient who had another type of cancer, but they were giving very heavy chemotherapy, and it just wasn't touching it. Like their hair wasn't falling out. They were just saying, "This should be really affecting you. It's not at all. So what are you doing?” The patient finally fessed up that they were taking like a ton of noni juice or something that was actually preventing the chemotherapy from working at all. You need to tell your doctor what you're trying in addition to what they're doing so they can let you know. So that's really interesting about that vitamin C and vitamin E as well.
Dr. Okola: Exactly.
Jenny: Dr. Gowin, did you have anything you wanted to share about the other types of therapy, like support groups or the music or laughter therapy and things like that before we review your opinions about vitamins and supplements?
Dr. Gowin: Well, sure. I think this is where it's so important again to really know your patients, know what therapies really resonate with them. If they are a music teacher or play the piano, then clearly that's a therapeutic modality for them and it brings joy. I think that the concept of joy is, again, it overlaps with some of these modalities. But anything that makes you feel alive and makes you smile and you really feel like you can drop all of your thoughts from the future and past and be in that present moment is therapeutic for you. That's where music, is it dance, even for laughter, what makes it for you? That's what I ask patients. Sometimes it's hard and I have to compete as far as decades back sometimes to really find those slivers of pieces of what used to be their identity that maybe they had slowly lost throughout the years, but just trying to rediscover those and nurture them, I think it's medicine. That includes all of those modalities and more, right?
Laughter is a really fun one. We actually did a laughter intervention during a Leukemia & Lymphoma Society event that we sponsored here at U of A last year. This woman came in, and she made us literally laugh out loud in response to various things for 30 seconds up to a minute. It changed the whole vibration of the room. These patients just loved it. So I do think that there's something to laughter therapists and that is the thing. So that was a lot of fun. All of us will benefit from laughter, right? So even if it's a funny movie.
Acupuncture, I wanted to hit on acupuncture because I really find this beneficial. The data is definitely maturing and in particular for multiple myeloma, there's not that much out there, but there is quite a bit out there with some other disease types, particularly breast cancer. There's actually a randomized controlled trial of patients who have breast cancer, and they're receiving a hormone inhibitor plus acupuncture versus the hormone inhibitor alone. Patients have significantly improved quality of life and tolerance to their medication with concurrent therapy. I usually recommend at least trial of acupuncture. I think it helps with fatigue, sleep, neuropathy, depressive symptoms, et cetera, smoking cessation. But there are responders and non-responders. I usually recommend patients, if they're game and they're interested to do this, is to find a local practitioner which they trust, usually within the cancer center if possible because there are some parameters that need to be looked out for such as what is the absolute neutrophil count? Is the immune system robust enough? What are the platelets? Those kind of things. They need to be trained to look at those things. But I do think it's helpful. A good trial, in my opinion, is weekly for a period of four weeks to see if there's benefit. Then I also say that there are differences amongst practitioners. There are all different types of styles. So sometimes it takes a couple different practitioners to really get your optimal response with acupuncture.
There was a summit that was held, I think it was 2016, at the NCI. They had 19 different researchers and clinicians come together with some level of expertise within acupuncture and Chinese medicine and kind of talked about the role of acupuncture within cancer care. First, they looked at safety and the outcome was yes, it was a safe procedure. But again, it should be overseen by a practitioner who has some experience with oncology patients. Then the other thing they looked at was efficacy. Efficacy was strongest for pain intervention, for fatigue, and then those with refractory nausea and vomiting. So I think in particular for patients that are struggling with those particular symptoms, but acupuncture could be very beneficial.
I think Dr. Okolo did a beautiful job describing diet. The Mediterranean diet is definitely the most robust data that we have for dietary intervention, which is coming primarily from our cardiovascular research, but we do see that there's decreased cardiovascular events and death with a Mediterranean-based diet. Actually, the risk goes down with the more Mediterranean components that you eat throughout the week. Olive oil tends to be a very anti-inflammatory fat. So with more olive oil supplementation, the risk of cardiovascular death actually went down, and that's within the -- it's called the PREDIMED study.
I base a lot of my recommendations off of the Mediterranean diet. The University of Arizona actually has their own little twist on that, and they call it the anti-inflammatory diet, and they add a few components to it, some Asian mushrooms and things. But in general, it's pretty Mediterranean based.
Jenny: Well, that's fantastic. And it's good food. It's fun to eat. I think we need a little more help on diet.
Dr. Gowin: It is good.
Jenny: I think maybe we'll include some things on the website if you want to forward some resources to us. We'll ask a little bit about resources at the very end of this show, so patients know where to go to try to find this information.
Let's talk a little bit about supplements. You hear in myeloma a lot about turmeric or curcumin. Do you want to address that? Because I know a lot of patients will have questions about that particular supplement. And then I've heard other things like Turkey tail or other things. Have you found any particular supplements that are helpful in myeloma that patients should consider?
Dr. Gowin: Curcumin is such a hot topic right now. You're absolutely right. I knew this question was coming, and so I actually did an updated PubMed search, just see how many hits there were. So if you go to PubMed, which is kind of our literature base in medicine, and you put in curcumin and myeloma, you have 62 studies that pop up now. So there's definitely a lot of ongoing research. I'm sure there's much more out there.
But curcumin is basically the active ingredient from an ancient Indian spice turmeric. It's that bright orange color that you get from curries and things, yellow curries. It really displays this kind of wide range of biological activities. It's an antioxidant. It's an anti-inflammatory. It's been shown to be cytotoxic or kills cells and numerous cancer cell types within myeloma. There is suggestion that it's changing the expression of cereblon, the gene which actually is modulated by drugs like lenalidomide, pomalidomide. There are many mouse models and cell line data looking at cytotoxic impacts of curcumin. There's been, again looking within cell lines and mouse models, but some synergies that can occur between carfilzomib and curcumin, which is really interesting. Then it downregulates one of these really active pathways that we know is upregulated in myeloma signaling, the NF-kappa B pathway.
This started a long time ago. In fact, one of my predecessors here at the U of A, Agarwal, published this in Blood, which is one of our prominent journals in hematology, back in 2003. So this has been going on for 17 years plus. I'll say that's kind of frustrating, in a way, because what we're limited to is still a lot of cell line data and mouse model data. But what we know is that that does not always equal what happens in the body, in the human body. There's been lots of research though in different cancer types, prostate, breast, colon, et cetera showing a very tolerable therapeutic window. So doses up to 10 grams per day does not have significant toxicity, maybe some diarrhea. I would say most of the clinical trials are anywhere from two to four grams, so much less than that.
I do think it's a potent anti-inflammatory. There are case reports in myeloma using it as a steroid-sparing agent, which is such a hot topic in myeloma because every regimen is fraught with dexamethasone. Then dexamethasone is not an ERT drug. As we know, patients are very symptomatic sometimes from their steroid exposure. So if this could be a steroid-sparing agent where we could start limiting the amount of dex, particularly on those that are on more aggressive kind of maintenance regimens that maybe include a steroid, that is definitely appealing.
I think it's really an interesting compound. I will say that we need more human data. We need randomized controlled trial data, but I do feel that it is safe and that I've done my due diligence and looking at -- it's called the Natural Medicines Database. So you can put the supplement in and you can put the chemotherapy, and it does not cross-react with many of the multiple myeloma drugs. I do say that a lot of my patients are interested in this and are utilizing this.
The only other thing I did want to say is that they were looking at -- there was one study I stumbled upon that was in 2009, so a little while ago. But they looked at MGUS and curcumin as an intervention for those with MGUS and impact their paraprotein levels of just curcumin, and it was four grams per day, oral. Those that have the higher paraprotein, so M spikes greater than two, had a 50% reduction in their M protein. This is small setting, again, 26 patients. So it's not power to really kind of show causality like that. But it's definitely provocative, and so I found that really interesting.
Jenny: Right. I also saw something that said that curcumin, when used with Kyprolis or something, was helpful.
Dr. Gowin: Yes, exactly right. But I think the downside of that, again, is within cell line in animal model. So the impact in humans is unknown. I think what it does is it gives us as researchers food for thought that yes, oh, wow, this could be a potent synergistic agent, and this should be studied in trials. But that does not mean that everyone, like those on Kyprolis, gets turmeric in my clinic. I'm a little hesitant for that. But yes, we need more research, more funding for this type of research.
Jenny: Right. When you were talking about how sometimes you take patients off certain supplements, when do you that typically?
Dr. Gowin: If the patient comes in and they literally have 40 supplements that they're on and then there's a lot that tend to be on combination products, then that’s a lot of overlap. So for example, one in particular is like vitamin A. I have one patient who had a little bit of cataract or something, and so he thought he needed the silver doses of all these different combination products. So his vitamin A dose was off the charts. So things like that. Green tea tends to be kind of weaved into a lot of the combination things. There's a lot of conflicting data in green tea in myeloma and bortezomib in particular and interfering with efficacy. So that tends to be one I care about.
But just, in general, I think that my philosophy, going back to what Dr. Okolo was saying, is that food is medicine and that there's some beauty to plant medicine and nutritional science that a supplement is an isolate of one compound. But the plant itself is much smarter than we are at this point in science. There are all these different components that work together synergistically. So by eating the food, you're getting much more than what a supplement could provide you.
Jenny: Yes, I like what you said, Dr. Okolo, about food as medicine and not overdoing the supplements and just getting this really healthy diet. So I love that.
Dr. Okola: I've met a lot of people who take supplements, that they see something about it and they decide and take it. I think you have to know why you're taking something. Don't just go out and buy a supplement. That's part of the education that we also provide is, okay, so you're taking supplement x. Why are you taking that? What made you decide to take it? What are you hoping to get from it? Just simple questions like that can elucidate a situation for you as far as what is this particular person concerned about? And how can I help them?
Jenny: Yes, absolutely. Do you both want to share the study that you're currently running? We decided to collaborate with you using this HealthTree platform. But I think patients would like to hear directly from you what you're trying to accomplish and what you hope to learn.
Dr. Okola: Sure. We are running research on the utilization of integrative therapies like we've discussed already in myeloma patients. It's an investigational study that's directed towards patients with known diagnosis of a plasma cell disorder. Our goal is to gather information about general practices and the uses of integrative medicine methods, including, but not limited to, things like mindfulness, meditation, exercise, use of herbs and supplements, diet and quality of life. So we ask general demographic questions: age, race, gender. We also about the type of plasma cell disorder. So MGUS, myeloma, plasmacytoma and the stage, as well as medications, conventional medical therapies for the cancer that you've tried in the past.
One thing that is particularly important in the survey that I think we ask about things like medical comorbidities -- diabetes, heart disease -- all these things that increase a person's baseline inflammatory status. And then we dive into specifically integrative medicine questions like symptoms, supplements, acupuncture, homeopathy, your support systems, religion, things like that, prayer. We're doing all of this because the use of complementary and alternative medicine practices are poorly described in our patient population. So we want to have this information available for analysis, so we can look at correlations and hoping to find if in these correlations, are we finding decrease in symptom burdens? Are we finding interactions? What are our patients doing and how can we treat them better? The information we gather from this survey will inform a lot of future research as well.
Jenny: Great. You can find this study or participate in this study by going to healthtree.org. And then you'll find it under the section that talks about accelerating research. We've already had, I think, in 48 hours, we had a lot of people sign up for the study and complete the study. So that was super exciting to hear about patient interest in doing that. It's really fantastic.
Dr. Okola: I'm really excited as to what we'd find out.
Jenny: I know, it's so fun. We're so happy to be able to help facilitate this. We have so many patients that are using the tool already. This is a way that patients can contribute to your research and help you to come to better conclusions faster, and even develop new hypotheses potentially. So that's why we're so excited to help you do that.
I do want to open it up for some caller questions if people have questions. And then I want to end with just having you share different resources or places patients can go for this. So I'll just start, if you would like to ask Dr. Gowin or Dr. Okolo a question, please dial 347-637-2631 and press 1 on your keypad.
Caller: Hi. My name is Tom, and I'm wondering if you might be able to address many multiple myeloma patients. Obviously, pain is a big component and at this point, opioids are used and whatever. If you could address how you might be able to address the pain aspects of the bone pain caused by multiple myeloma.
Jenny: Yes, great question, Tom.
Dr. Gowin: Yes, thank you for that because I think it's such an important topic that I think is pretty universal for myeloma communities. Obviously, opiates are there, but it's not ideal, right? So other adjunctive therapies, and I know we've talked a little bit about acupuncture before, I do find that to be quite beneficial for pain. Massage therapy adjuncts to the pain, going back to Western medicine and adjuncts for pain, looking at is there a neuropathic component, things like gabapentin, pregabalin or Lyrica, Cymbalta, etc. Sometimes even the involvement of a pain management specialist can be helpful.
Clearly, radiotherapy, if there's a focal area of bone pain, radiation can be obviously a very helpful focal fix to that area. Mind-body therapeutic approaches, mindfulness, changing the experience of feeling pain, not trying to cover the pain, so that actually can be quite helpful for patients is just doing some mindfulness education on how to just experience pain a little bit differently. And then we had talked about some of the anti-inflammatory diet can be an anti-inflammatory. Omega 3 fatty acids can actually be a potent anti-inflammatory, can cool down pain, curcumin, etc. There's another few out there.
So I think really there's multi-disciplinary approach to pain management where it's using, again, that Western medical model and then trying to pile on all these are complementary therapies to promote pain control.
Jenny: Great. I know that's a really common question, so great question, Tom. And thanks for your answer. Okay, our next caller, go ahead with your question.
Caller: Hi, Jenny. It's Steve in Florida. Thank you for having this show. I wish it could be five hours.
Jenny: Thank you.
Caller: Doctors, I've been involved in medical education administratively and osteopathic education for 30 years and allopathic education for the last four years. We have a research project underway right now for neuropathy that is in vitro and in vivo. So we're going to be looking for people who may want to participate. So I'll ask Jenny if she could possibly share her contact information. I am a support group leader. Our questions that we get generally are neuropathy, sleep, pain, and bone remodeling. So I also have an idea they've spoken with a PharmD naturopath on bone remodeling. But on pain, any thoughts on medical marijuana and CBD oil?
Jenny: Okay, thanks, Steve.
Dr. Gowin: Dr. Okolo, you want me to answer, or you want to take a stab at that one?
Dr. Okola: I do think the data on medical marijuana and CBD oil is still emerging. I do know that patients utilize it and have found benefits. There is a lot of, misinformation about dosage and purity and different standards like that. But I do think that, in general, I have had experience with patients who utilize CBD oil and find it to be very efficacious for their pain. So it is something that I think should be discussed, but is also something that I have found to be beneficial. So I think if that works for the type of pain that you're having, it can be utilized. I think the most important thing is to try to identify the type of pain though. I think with CBD oil, we do find that it is most effective in things like muscular pain, whereas a lot of our myeloma medications tend to cause things like neuropathy. I think outside of things like conventional medicines with opiates or things like gabapentin, acupuncture is also something that I recommend in this patient population for symptoms of pain secondary to neuropathy.
Dr. Gowin: I'll piggyback upon that. I've had quite a lot of experience with some topical CBD/THC products from my patients that are utilizing medicinal marijuana with good effect. So I do think that both CBD ointments and CBD/THC formulations can be particularly helpful.
Jenny: Great. Okay, thanks for the answers. Our next question, go ahead with your question.
Caller: Hi. My name is Ana. How are you guys?
Dr. Gowin: We're doing good, Ana. Thank you.
Caller: Jenny, I just want to say thank you. I got diagnosed with MM just six months ago. Your page has been my lifesaver. So thank you for that.
Jenny: Oh, great.
Caller: I have a question about exercise. So before I got diagnosed, I was doing strength training. I'm six months in. I just had my bone marrow, and it had great results. My numbers came down to less than 1% of myeloma for my initial RVD treatment. So now I am going to do two more treatments, two more months. Is it okay if I do strength training exercise, or should I just stay away from that and just do walking and stuff like that?
Jenny: Great question.
Dr. Gowin: Ana, congratulations on your response and you're doing phenomenal with your therapy. That's great news. I think it's a really good question. I think this is a personalized approach. You know what? As a practitioner, what I want to know as your myeloma doctors is, where are your burdens of your obvious disease, if you have any? Are there any weight-bearing areas of concern? Are there intertrochanteric masses? You know what I mean? So if there's any place that I would be concerned of a pathologic fracture, I would encourage more gentle approaches. If that is not you or anybody else in the audience that doesn't have a significant burden or a concern there, then I would totally encourage strength training. Actually, they looked at both strength and aerobic and that those that did both in lymphoma actually tolerated their chemotherapy at a higher dose, at a higher frequency. It actually maintained their dose intensity by performing both aerobic and strength training, but it does have to be a personalized approach and be faced. So I definitely would talk to your myeloma doctor before ever doing major strength training or any high-impact sport.
Jenny: Right. I've heard that a lot. I know a lot of people who continue to do strength training, do with their myeloma. Just you have to be really careful of your bone situation, like you're saying.
Okay, we have several more questions. So I know we're going over, but I hope that's okay. If it's not, you let me know and we'll close things up. But we have a caller at 645-2700. Go ahead with your question.
Caller: Hi. My name is Nancy. When it comes to strengthening bone, if you're already on Zometa like every six months and you're taking vitamin D supplement to give you a level around 50, are there other things that you should be doing for bone other than a good diet, things like vitamin K2, people talk about, or boron or any of those things proven are beneficial?
Jenny: Great question. Thanks, Nancy.
Dr. Okola: I think, in general, when it comes to bone strengthening modalities, we have to utilize the same beliefs and what we've seen work in general medicine outside of the myeloma patient population, like Dr. Gowin mentioned previously, it's really important for us to know the status of your disease and obviously utilization of things like denosumab and zoledronic acid are essential, but also we strengthen our bones based on physical exercise and, as the previous caller mentioned, strength training, these impactful exercises actually help our bones grow stronger. That in and of itself is a good place to start.
I don't know the data on things like boron. I don't know if, Dr. Gowin, you want to discuss on that. But, in general, I think if you're able to and clear it for doing exercise by your myeloma doctor, I would focus on strengthening exercises to help with bone strength in addition to the conventional things that you're already doing.
Jenny: Okay, great. Thank you.
Dr. Gowin: I agree. Exercise is totally key. In regards to the vitamin K, there's not a lot of downsides with the exception of if you're on a therapeutic anticoagulants. Vitamin K and particularly with Coumadin can really interfere with your INR measurements. I know a lot of our patients out there are on some sort of anticoagulant and a lot are still utilizing warfarin or Coumadin. So that would be a concern against the vitamin K supplementation. But there is data for that improving bone health. Boron, magnesium, all of these different things really work together with vitamin D, calcium to build that cellular matrix within the bone. So it is all important.
Also, you need to keep into account kidney disease with magnesium and boron. So I think it's best to work with an integrative provider to look at your integrative case, naturopaths that are licensed, oncology certified naturopaths. They're called FABNO. They're a great resource. Or finding an integrative oncologist to help you navigate that.
Jenny: Great. Okay, wonderful answer. Thank you, go ahead with your question.
Caller: Yeah, hi. I have two quick questions. First, there are some doctors that believe in high dose vitamin C treatment for cancer. However, my oncologist was very reluctant, thinking that it might interfere with the treatment regimen. The second question is on diet. Besides the Mediterranean diet, how harmful is refined sugar, dessert, sweet? Are there any anecdotal stay away from it? Are there any data or scientific data that show that sweets have deleterious effect?
Jenny: Great question and very common question, right? You probably hear that question all the time.
Dr. Okola: Dr. Gowin, do you want to take the high dose vitamin C and I can speak on the sugar?
Dr. Gowin: So for high dose vitamin C, so we have no data in myeloma. It is interesting. They're looking at pairing vitamin C with arsenic and bortezomib. There actually was a recent trial that was done in comparison to the bortezomib-dex alone, and it seemed to have some benefits. That was a lower dose. Some are much less than a gram. When you're talking about high dose vitamin C, that really varies quite a bit according to the integrative practitioner that's prescribing it. Then it can range anywhere from 10 grams intravenously all the way to 100 grams. There are risks with infusion, the risks of changes in your what's called the osmotic balance and so what's the salts and burden and what is your sodium level? It can cause kidney stones. Really, it can change and cause hemolysis.
But in general, for other cancer types, I would say not in myeloma, it has been shown to be generally safe at lower doses and impactful for quality of life. The impacts on outcomes is still not determined clearly. It is a pretty profound antioxidant at high dose levels. Theoretically, it could go and repair some of the damage that's done from some of the chemotherapies. There is some data, the interaction with bortezomib. Then theoretically with high dose melphalan, that's the alkylating agent which really relies upon DNA damage, and so high dose vitamin C around that probably isn't a good idea.
So in general, I never make a recommendation for it because I don't know enough about it. Anecdotally, I have seen patients do it anyway. There have not yet been poor outcomes. They seem to be tolerating their therapy quite well. So long story short, we need more evidence, I think, to make that blanket recommendation. But if you do choose to do it, that I would do it spaced apart chemotherapy, so when you're in between treatments if possible and at lower doses.
Jenny: Great. And on the sugar topic?
Dr. Okola: I think sugar gets a bad rap, especially in cancer. I don't think it's a simple question of just if I avoid sugar, am I going to positively impact my outcome? I think we have to understand, what is sugar? Sugar comes in a lot of different forms. The simplest of which is glucose and all of our cells, including cancer cells, use glucose. That is our primary fuel source for our cells. Glucose comes from things like fruits and vegetables and carbohydrates, especially the refined carbohydrates, things like breads and pastas. That's basically all our food, and it's kind of impossible to just avoid sugar and think that avoiding it helps negate the growth of cancer cells.
I think, in general, all of this goes back to maintaining a healthy diet, primarily plant based. The anti-inflammatory diet is of benefit, in general. It is of benefit for those with cancer, of those without cancer. This is because we are giving our bodies all of the nutrients that we need while avoiding these refined or limiting these refined sugars, these carbohydrates because, in general, they will cause other syndromes, things like higher inflammatory states and diabetes and dyslipidemia. I don't think you would be doing yourself any specific service by cutting off sugar. I prefer to think of it more as doing yourself a service of optimizing your diet and focusing on the nutrients that have been shown to have positive effects in patients with cancer, if that makes sense.
Jenny: No, I think that's a great way of thinking about it because you're thinking about what you need to eat and what you don't need. Am I getting enough vegetables? Am I getting enough fruit? Then once you eat all that, then you're pretty full.
Dr. Gowin: Yeah, that's true. I like what you said, it does promote inflammation. So I think that needs to be kept in mind. So what I do tell my patients is the 90/10 rule. So 90% of the time, eat what you know is good for you, and then 10% be human and indulge and that's okay. I do think it should be discussed, this Warburg effect in cancer, that our cancer cells do not have the ability to change the way they metabolize and get energy, and they are dependent only on glucose. If you've heard about ketogenic diets in cancer, the idea is that depending on this Warburg effect, where if you only have ketones floating in your bloodstream for food, cancer cells are starved. There's nothing really out there for ketogenic diet in myeloma yet. I think that's coming. But there's ongoing, I mean, in almost every disease, ketogenic diet trial is going on because it's just such a provocative question.
Jenny: I think that's been the challenge, right? Finding enough data that you can make, evidence-based just treatment decisions or recommendations even about what you should do. So that's why I think the study that you're running is a great start for that. We'd be happy to help you in any way come to these answers because patients really want to know. This is something that patients can do.
So Dr. Gowin and Dr. Okolo, we've kept you way over time, but I just so appreciate everything you've shared with us today. The work you're doing is really wonderful and super exciting for patients. So thank you so much for joining us. Really appreciate it.
Dr. Okola: Thank you. This is really fun.
Dr. Gowin: Oh, thank you so much for having us and partnering on our study. We just appreciate everything you do for research and for patients. You provide a wonderful resource. So thank you.
Jenny: Well, thank you. Thank you to all our listeners. Thank you for caring enough about your own care to know how you can optimize it. We really appreciate you listening to Myeloma Crowd Radio. We encourage you to tune in next time to learn more about the latest in myeloma research and what it means for you.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.