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Quality of Life and Side Effect Management

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Published on August 27, 2021

How Side Effect Management Can Improve Quality of Life

In this segment hosted by multiple myeloma patient advocate Yelak Biru, Krisstina Gowin, DO, Assistant Professor of Medicine at the University of Arizona, highlights looking for the root cause of side effects, and taking practical but research-backed lifestyle steps to combat symptoms like fatigue. Rafael Fonseca, MD, PhD, Site Director of Hematological Malignancies at Mayo Clinic Arizona, also discusses how patient quality of life is an important factor in making treatment choices.

Support for this series has been provided by Karyopharm Therapeutics. Patient Power maintains complete editorial control and is solely responsible for program content.

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Transcript | Quality of Life and Side Effect Management

Yelak Biru: Alright. Welcome back from the break, everyone. As we start our second half, I would like to thank our sponsor for this program. Again, Karyopharm. Thank you. Now let's go to our next poll, which is my favorite topic, which is quality of life and prime side effect management. Are your primary side effects, fatigue, pain, loss of appetite, weight loss, diarrhea, neuropathy? All of them sound bad, but I think what we'll ask our doctors is how they manage this for their patients. No offense against to the doctors, but I am really good friends with the nurses, because they're really good at helping manage side effects for their myeloma patients. So, if we can bring the answer up, 75% is fatigue and a little bit of pain and neuropathy. I guess this is telling, right? Dr. Gowin, how do you start the conversation with patients about the side effect they're experiencing? It can be really hard to be honest about GI issues, for example, when having the conversation with a patient.

What Are Your Strategies for Effective Side Effect Management?

Dr. Gowin: Yeah, I think it's, I think the first key is to open that conversation and that door, and that's certainly my job to ask those questions. But I would also say for the audience and the listeners to be that squeaky wheel to really tell your provider, the nursing staff, as you mentioned, Yelak, you really have to be verbal about what you're experiencing. So, we have the opportunity together, to really work on that together. And I think the key is develop a really good relationship with your treatment team.

And so that team is, again, your doctor, your nurses, your pharmacist, your nurse practitioners, all of those pieces of the puzzle. And so, when those symptoms do arise, to really let them know via portals [that] are now readily available. And so, jotting a quick note down in the portal, "Hey, I'm having really, just debilitating fatigue," or especially neuropathy. My gosh, it breaks my heart. When a patient comes into me and says, "Over the last four weeks, I have so much pain in my fingers," and that does happen rarely, usually it's a slow curve, but every now and then it can just really go off. And so, I really would encourage the audience to be that squeaky wheel and to be communicating what whatever the symptom really is.

Yelak Biru: Are there ways to treat the side effects, for example, fatigue?

Dr. Gowin: Yeah, this is a really good question. And I think the approach is really multi-disciplinary because fatigue has so many roots of its potential origin, and certainly we can blame myeloma. We can blame the chemotherapeutic regimen. We can blame the anemia, renal dysfunction, it really… It's depression, potential thyroid disorder. So, I think the key is again to leave no stone unturned and to really evaluate and try to get to the root causes and the underpinnings of what's really driving the fatigue. Number one. And then number two, I have a whole host of lifestyle strategies that I try to torture my patients with. And so, I teach some dietary approaches, Mediterranean diet, frequent, small meals, plenty of protein, lots of omega-3 fatty acids, trying to get movement. I think movement is, and actually the most evidence-based approach to cancer related fatigue is really exercise.

And it's this double-edged sword because you don't, you're so exhausted. You don't want to get moving, but you need to get moving because you're so exhausted. And so, I think you have to get over that first hump, but then once you start moving, and really it has to be intuitive moving, what works for you and what resonates with your lifestyle but get moving. And then, if all else fails, there are certainly pharmacologic modalities that we can entertain some methylphenidate for some patients that are, have just horrific fatigue. It can use nothing else that's often used in palliative care settings, and I have utilized that. I love acupuncture. Acupuncture is one of my favorite modalities to support patients and there's some responders and non-responders, and so usually I recommend a trial of acupuncture, but those are kind of the low-hanging fruit, at least of where I start fatigue and that conversation.

Yelak Biru: We have a section for what you just talked. So, hold thoughts a little bit longer there. Dr. Fonseca, you are one of the most patient-centric doctors I know. How does quality of life factor into the conversation about side effects and treatment choices you have with your patients?

How Does Quality of Life Factor into Treatment Decisions? 

Dr. Fonseca: Thank you for the comment. Yeah, I like to, honestly, it's just an honor to be in front of the patients that trust us with their care. And I usually say we spend the bulk of our time as a myeloma doctor just discussing the pros and cons of the various approaches and the various medications. And I think quality of life needs to be at the forefront of everything we do. So, having a very clear and explicit discussion of what might be the toxicities and the again, the pros and cons, it's critically, critically important so that, the person and with the advice of their loved ones can make the right decision with our counsel as well, too, as far as where to go with treatment. I tell patients that one of the good news in myeloma is that almost always, there's an almost there, but almost always quality and quantity of life go together. And that is because if you have an effective treatment that you can give and you can do so in a safe way that you don't induce more toxicity than you want to see, of course. You can both lengthen the duration of disease control, but also help with a lot of the symptoms.

I mean, one of the best examples is myeloma bone pain. When we treat someone who has bone pain, you can usually make that go away within a month, at least for the acute phase. There's some pain that is more chronic, that sometimes happens with some of the long-lasting fractures and things like that. But there's things we can help people on the very short term with feeling better, but trying to balance that out is critically important, especially because now we're seeing the survival statistics that are getting better and better. And we're seeing patients who are exceeding 10, 15, 20 years now, and that's more and more common in our practices. So, if you have that life expectancy, we want to do so without, for instance, having enduring peripheral neuropathy, that's just not a good outcome. So, we have to pay so much attention to quality of life.

Yelak Biru: So related to that there was a question that came from the audience. How do you make treatment and maintenance decision for elderly over 80 patients? How is excessive toxicity determined?

Dr. Fonseca: Yeah, just to follow up on that. So, for most people when they finish treatment, and this seems to be now, regardless of whether you're a transplant candidate or not, most patients are recommended to be on some form of a maintenance treatment. For patients who are not transplant candidates, it seems like the majority of them don't have high-risk features. And if that's the case then standard maintenance with something like Revlimid (lenalidomide) or low dose Revlimid is appropriate. Two key things, there are. One is I would try to avoid is dexamethasone (Decadron) at that point. Dexamethasone is one of the hardest things of the myeloma treatment, as we all know, and family members of myeloma patients know as well too, it can be pretty complicated. So, we try to do without that, and we try to do it without prednisone inhibitors.

And I just recently was doing an analysis of high risk in the elderly. And I think I'm going to be more prone to the use of daratumumab (Darzalex) over PIs with the Velcades (bortezomib) and the Ninlaros (ixazomib) for high risk in the elderly, because there is no question as we go on in life, the same treatment that you give someone who is 65 is not the same treatment that you give to someone who's 85. You know, our bodies are not as strong. And our ability to withstand treatment is clearly less.