Skip to Navigation Skip to Search Skip to Content
Search All Centers

Expert Advice on Managing Side Effects of Cancer Treatment

Read Transcript

Published on July 10, 2020

Expert Advice on Managing Side Effects of Cancer Treatment

What is palliative care? Often confused with hospice care, palliative care is the improvement of a person's well-being while undergoing treatment for a serious health condition. It involves using proven medical techniques to manage pain and side effects of cancer and cancer treatment, such as fatigue, nausea, and pain. It can be used by anyone in any stage of cancer. From mitigating side effects to improving the overall quality of life, it has become an integral part of cancer care.

In this segment from our recent Answers Now Program, Dr. Ishwaria Subbiah, from the University of Texas MD Anderson Cancer Center, and patient advocate Stacey Tinianov, discuss the benefits of palliative care and explains how to incorporate it into your treatment plan. Tune in as they answer questions regarding low libido, steroids and communicating with your healthcare team.

Featuring

Transcript | Expert Advice on Managing Side Effects of Cancer Treatment

Andrew Schorr:
Hello and welcome to this Answers Now program. I'm Andrew Schorr in Southern California. And this is an important program for all of us who are living with cancer, being treated for cancer. Where can we get the help we need? And during this COVID-19, coronavirus pandemic, who can help and how do they help? Well, I'm joined by two wonderful experts really, to take your questions and give you tips and give you guidance today. So in the pink blouse there is Stacey Tinianov, who joins us from Santa Clara, California to the North, Northern California. I'm in the South. And Stacey we'll go over her story in just a minute. Also, joining us is a specialist in helping people manage the side effects of their cancer, the side effects of their treatment. She's at MD Anderson Cancer Center in Houston, Dr. Ishwaria Subbiah. So and welcome back to Patient Power, Dr. Subbiah.

Dr. Subbiah:
Wonderful. Thanks for having me.

Andrew Schorr:
Welcome, Stacey. So let's, first of all, acknowledge that you're in Houston, Texas. And so you are very much in our thoughts because we know the hospitals are jammed with COVID patients, you worry about capacity. So for instance, if one of your patients needs to be hospitalized dealing with some issue of their cancer and side effects, will you have a bed for them, right? This is a very real issue, right?

Dr. Subbiah:
Sure. The level of disruption that COVID has brought to our way of life is an understatement, right? And the challenge for us... Our resolve remains even stronger now. In fact, it's stronger now than it was ever before, which is to make sure that we take care of the people who are going through cancer. Because when you're thinking about it, it's someone who has a diagnosis of cancer who are on this cancer treatment journey. On any given day, that's enough on someone's plate. And on top of that, you throw a pandemic that's affecting every aspect of our well-being. And so I can only imagine the stress that a person with cancer and their family are going through right now. So we're here and I'm here, our team is here, our palliative care team is here. We are taking care of everyone. Everyone who's reached out to us and everyone that we're able to reach as well.

Andrew Schorr:
Now, we're going to talk about how someone like you, an expert physician can help us even remotely like we're connected now.

Dr. Subbiah:
Yeah.

Andrew Schorr:
Stacey, so you are a seven-year breast cancer thriver. I know you cycle and you do all these things. But you had your breasts removed, you were on some ongoing therapy, but more recently you with associates formed a group called Palliative Care for All. So normally with a specialist like Dr. Subbiah, somebody might say, "Palliative care, that's the doctor who's involved when you're in a hospice when you're like at the end of life." But that's not really what palliative care is, is it Stacey? And what do you want people to know?

Stacey Tinianov:
Basically exactly what you just said. I mean, palliative care is such a wonderful resource. Unfortunately, it's not readily available to everybody. And part of that is resource, part of that is what facilities have available for their patients, but a huge part of the lack of availability of palliative care is there are people who don't want to have that conversation. They don't want to talk about palliative care because they're under the impression that palliative care is basically the opposite of curative care and it's end of life care, when in reality, palliative care is simply about supporting the whole individual from a quality of life perspective. And I know that we gathered here today to talk about palliative care with respect to side effects, but cancer and the... I can't swear on the program, can I?

The crap show that comes along with cancer... Palliative care can be incredibly helpful. And when we think about it, it's not just an anti-emetic, it's not just an anti-nausea, it's not just helping you get through treatment. It's everything, it's the psychosocial aspects, it's the spiritual aspect. How do we care for you and see you as a whole person as opposed to a set of symptoms or a set of side effects? And so, yes, you mentioned the group and I'm happy to talk about that as well.

Andrew Schorr:
We'll get to that. So, Dr. Subbiah, somebody mentioned to me yesterday, I hadn't thought about it. That some people are cancer patients who are reluctant to bring up side effects or things that are affecting them, that they're worried about while they go through cancer care because they want with their oncologist to fight the cancer and they're worried about it, they bring something up, the doctor will stop treatment and the cancer will win. I'm sure you've heard that before. What do you say to that?

Dr. Subbiah:
That's heartbreaking to hear on so many levels and it's absolutely true, right? It's absolutely true. It happens out there where so many of the people I take care of, they're used to taking care of themselves their whole life. They're either not complainers or they have a high threshold because they've been taking care of their families, they're taking care of their business or whatever it may be. And so going through this cancer treatment experience means that you take therapies that have side effects. And those side effects aren't always in our individual controls, right? It's happening to your body from a drug or a radiation or a surgery. And so, the way your body's reacting is completely natural, completely natural for a body that's received these medications. And so, what can be very difficult is realizing that the side effects they're not you willingly having the side effects, this is a natural reaction that your body is having.

And so the first challenge will always be to truly acknowledge that, "Okay, this is what I'm feeling. These are the things that are different from a month ago and okay, so now what are we going to do about it?" And step one is always to get a sense of how much is it impacting your quality of life and to have that open conversation with your oncologist. And the concern that you bring up about feeling safe enough to share what you're experiencing as a patient is a very real one. And your oncologist, I mean, your medical care team, your multidisciplinary team is truly there for you. So on their end, they really do want to know because there may be ways to help with it. That fear that you sharing a side effect may lead to treatment being stopped, have that conversation with them because that may very well not be the case, that's the thing.

I would hate for you to go through a symptom in silence, to suffer in silence, for a fear that may not really be founded. And so this is where it's so incredibly helpful to have that trusting relationship with your cancer treatment team. And this is where it actually comes in very handy to have a multidisciplinary team involved. In my supportive care clinic, I don't make decisions about your cancer treatment with you. I mean, I help you with any decisions you may have, but there's something very special about having a separate team that works in partnership with your medical oncology team. And so we want you as a patient to have as many safe environments as possible to talk about what you're going through.

Andrew Schorr:
So Stacey let's get practical for patients. So Dr. Subbiah is at one of the largest cancer centers in the world, MD Anderson. And so they've set up these different groups and at Memorial Sloan Kettering or where you are maybe Stanford or UCSF, they may have that but it's not everywhere. So first of all, how do you find out are there people like that who can help, that become part of your care? And if you're at a smaller clinic, who do you ask? So give us some practical advice there for patients.

Stacey Tinianov:
Yeah. I definitely want to talk about that. I also want to talk about one more barrier because Andrew, you mentioned rightly so that people are afraid that if they say I'm having these issues changed and they may go on a different path and they don't want that to happen. There's another huge challenge for patients to bring up issues and side effects. And that's the feeling that they might be considered ungrateful and especially when you're talking about side effects that... Sexual side effects, people have a hard time talking about sex and sexual dysfunction in the first place. And now to go to your oncologist and say, "Well, my libido is really low." I think people talk themselves out of that conversation and say, "Well, hell at least I'm alive. I shouldn't complain about things like that." So that's just another barrier I think that individuals need some help in overcoming. As far as finding the resources and you're right, 80% of the individuals treated for cancer in this country are treated at community oncology campuses.

And so they are lacking in the connected resource pool that we often see at large academic medical centers. That doesn't mean that there isn't a palliative care specialist within your facility, and so I always suggest that the first place to go is to your oncologist and say, "These are the types of things that I'm needing help with." I'm incredibly biased around the community and how the community can help. So you can always reach out to... We've talked about a Facebook group already, there's Twitter, there's your local support group if you're happening to go in person. And then there's community resource center, cancer support network, depending on your cancer, larger advocacy groups to go to them and say, "This is what I need help with. I don't have these resources available at my facility. Where can I go?"

Andrew Schorr:
Okay. So Dr. Subbiah, let's talk about the things that there should be help for, okay? So Stephanie mentioned sexual issues. Okay, I think of fatigue as a huge one, nausea, pain, sleeplessness, anxiety and depression, I'm probably missing some, but this is all on the list, right?

Dr. Subbiah:
Absolutely. And many of us probably have three out of those just by virtue of going through life and then definitely add COVID in the mix. And so, what you're describing are a very common constellation of symptoms. And I say that because it's very hard to disembody one symptom from another, right? They're all so interrelated and they are all in one person. So when we see somebody in our supportive care clinic, the reason for referral may say pain or a reason for referral may say, nausea. One word, two words, we still talk about the whole person. We talk about multiple domains that make up their well-being. Why do we do that? Number one, we want to know them as a person, of course, but two is there's compelling data to show that the symptom that somebody expresses is exactly that. It's a symptom expression, right?

It doesn't always reflect what's happening underneath. For example, if somebody says I'm in pain, you automatically assume, "Oh, it must be from that metastasis that's in the bone." Well, it may not be 100% from that bone met. It maybe 60% from the bone med, but 40% from distress because they're worried about losing their job and their health insurance. Or maybe their child is acting up or whatever else it may be. So we know that other form, other symptoms can manifest as pain. And that's why we get to know that person, is we want to know exactly what are the components that aren't right and how best we can approach them.

And I say that because before this pain example, no amount of opioid escalation is going to bring down the distress that comes with the fear of losing your job because you're going through cancer treatment. And that becomes really important because that component of the pain may still be there. And if you just keep going up on the doses of pain medications without addressing the psychological component of that, then you're not really doing that person a service. And that's why it's so important to have a multidisciplinary team that delivers palliative care so that the whole person is taken care of. And that impacts sleep, that impacts energy level, they're all tied.

Andrew Schorr:
Right. So that's a fear people have that if they come see you or another palliative care specialist, you're going to get out your prescription pad and then maybe high dose pain medicine. "Oh my God, I'm going to be a drug addict." Right? People have all these fears, so they don't want to go there. What you're talking about really getting to the root of what's going on and what's the right approach, which brings up a question. Here's from our audience. So in some states, there are specialists who are called naturopaths. So people wonder if somebody is a licensed naturopath, could they be helpful? What's the specialty that comes into play? Stacey, I don't know if you have any guidance on that here in California. We do have licensed naturopaths.

Stacey Tinianov:
Yeah. And we do have licensed naturopaths and people have different thoughts about whether they should go there for cancer treatment. I will say that an all or none approach is something that I think people should stay away from. Finding a naturopath that will work in conjunction with your oncologist I think is a fabulous idea. The thing that I would definitely caution against is don't go seek care in one place and not tell all of the other people that you're receiving care from exactly what's happening. If a naturopath were to for instance, suggest herbs or supplements, they might be fabulous for you and they might relieve all of your pain or whatnot. They also might be contraindicated in the treatment that you're receiving. And so it's really, really important to have that continuity and that communication with your care.

Andrew Schorr:
Transparency. So here's a question that came up, Dr. Subbiah, and I think it's about everybody talking, the patients sharing if they've gone to another provider. Just what's on the table to help me with this issue. So a multiple myeloma patient in our audience wrote in and said that they developed a skin rash over their whole body after they were on a multiple myeloma treatment. So first of all, they want to beat the multiple myeloma. So now, do they go to a dermatologist? Is there an oncologic dermatologist? Does someone like you helping with palliative and supportive care coordinate that to get the doctors to talk to one another? How does that work when you're having a reaction such as that?

Dr. Subbiah:
Sure. So anytime you have a symptom and anytime especially if it's something new, the first person who has to know about it is your oncologist. And so it becomes very important because we have to identify and by we, I mean, your whole medical team has to identify really what is leading up to that? It could be a side effect to the medication like you said, but it could also be an infection, it could be any number of other things. And so at the start of any symptom, that's why it's so important to have that communication with your oncologist because they captain the ship of your cancer journey if you will. And so for the example that you brought up with a rash, then the next step becomes understanding what was the cause of the rash, what's the circumstances of the rash. And in those cases where it may be specific to a drug, it may be that your oncologist has enough experience with this that they can offer a management strategy for it.

Whether it's topical creams or whether it's a medication aimed at calming down the rash or if it's a change to your cancer treatment, whether it's you dropping the dose a little bit while still maintaining the efficacy or taking a week break or so. These are just some of the examples of what could be done. And the second part of it is your oncologist will also work with you on whether a sub-specialty dermatology consultation make sense. I mean, dermatologists, they're the experts in all things related to skin. And so if there's something unique about what you're going through or something different, it makes perfect sense to get the dermatologists on board to give their expert insight on it. Anyone who's had a diagnosis of a serious illness knows that they may have never seen a doctor before in their life, but boy, the moment they get their diagnosis, they have an army of people who are on their care team. And sometimes that may be frustrating, but the reality is each person brings such a depth of expertise in their field into your care. And so it really becomes about engaging the experts just to make sure that all the T's are crossed and the I's are dotted. And so-

Andrew Schorr:
Can the palliative care doctor help coordinate? Because first of all, somebody also might have diabetes or heart problems or whatever. And so when is it the cancer care that's pressing certain buttons? And when is it something else? "Oh my God, all I know is I have this pain." Or, maybe they have rheumatoid arthritis as well or whatever. Who sorts that out?

Dr. Subbiah:
So if you're getting active treatment for the cancer, there are many people that we take care of who come with a history of comorbidities. Whether it's diabetes or high blood pressure or rheumatoid arthritis, just like you said. And so anytime someone's experiencing something new and they're going through active cancer treatment, the instinct is to reach out to the primary oncologist to get a sense of what's happening. And the answer may very well be that, "Okay, it doesn't sound like it's related to your cancer treatment. Let's get your primary care doctor on board." In some circumstances, people have the primary care doctor as part of the same health system which share medical records or may share even the office buildings. And so they're able to reach out to them. What the patient reaches out on their own and the oncologist may help facilitate that. And at other times it's a separate clinic where they've seen that primary care for usually years before they were diagnosed with cancer. And so they just make a phone call to them and reach out to them to do the workup of a new symptom. And you're absolutely right. It really does take a village to get through life frankly.

Andrew Schorr:
That brings me to a question, Stephanie, It does say — Stephanie. I keep changing your name, Stacey. I like the name Stephanie but it's not your name. Sorry, Stacey, you mentioned libido. You maybe have experienced this, or you know that some people who have steroids as part of their treatment, that can affect libido. You can also be sleepless or you can crash.

Stacey Tinianov:
Or moody.

Andrew Schorr:
Right. So you know that. Dr. Subbiah, what about that? About steroids, people see it really giving them a lot of ups and downs or not in their life.

Dr. Subbiah:
It's steroids in the context of cancer treatment. I think most people see it at some point in the course of their cancer treatment. And you just need to talk to one person who's gotten it as a pre-medication and they can tell you all the wonders that it does. And I of course say that semi-sarcastically. They're good parts about it, it's this energy that you haven't had before maybe, but then the steroid that you get from the outside, whether it's an IV or a pill you take, I mean, it mimics what's naturally in your body but at very high doses. And so, anytime you're disrupting your internal equilibrium, they're going to be symptoms because of that. And so that's why in the context of cancer care, it's used sparingly and only in the necessary situations. Whether it's a pre-medication usually. In the context of immunotherapy, for example, we really go out of our way to avoid it because there's mixed data on whether suppressing the immune system, however temporarily with steroids, how does that impact the effect of an immunotherapy that's there to boost up the immune system?
In the context of supportive care, we do have data to show that a low dose of steroids can help with energy levels. And so this is in very controlled settings and in a select group of people. But, that's why when we see somebody and we take a close look at their whole symptoms, we may make a decision together with the patient that, "Okay, maybe we should try dexamethasone (Decadron) for a couple of weeks to see if that improves the energy level for example.

Andrew Schorr:
Mm-hmm, wow. Stacey, so the idea is that people can draw on a specialist like this as these questions come up or talk to their oncologist, it could be a nurse or nurse practitioner at a local clinic who has this role. What you're telling people to do is speak up, right?

Stacey Tinianov:
Yes.

Andrew Schorr:
Right?

Stacey Tinianov:
Yes.

Andrew Schorr:
That's the overriding message is, speak up that you don't have to suffer and that you deserve to deal with these issues and get clarity on it and see how you can live better even while you're going through active care, right?

Stacey Tinianov:
Exactly. Dr. Subbiah mentioned in the pre-conversation that cancer is hard enough. It is hard enough all by itself and regardless of your type of cancer or your stage, there are things that you're going to have to go through that are uncomfortable, that are painful, that are frightening. So don't try to carry more than you need to carry. At the very least, just communicate what's going on, the impact that it has to your life. One of the things that I think is really important to remember is, not everybody reacts the same to treatment, not psycho socially, not emotionally, certainly not physically. And so if you know somebody who's been through a treatment and you thought, "Wow, they didn't ever complain about this. Then I guess this..." They have a different body, they have different physiology, they have a different lifestyle circumstance. Maybe they don't have two small kids running around that they're also supposed to be mothering. So, absolutely. Speak up and find the people that can help you. Everybody just wants to be seen, heard and held. And there are people that are ready to hear and hold you through this.

Andrew Schorr:
In this context of the pandemic, okay? There you are on video. Can some of these people, whether it's you as an MD or a nurse practitioner at the local clinic, can we at least reach out to them and feel, "Well, we don't have to go necessarily the big hospital or the clinic. I'm a little concerned about my safety. I'm worried." But this can be helpful even interacting this way and I imagine you're doing it.

Dr. Subbiah:
Yes. So in our supportive care clinic, over 90% of the patient encounters that we have are virtual these days. And so that's great because I get to take care of someone in their home. And I mean, I've gotten so many tours of backyards, introductions to pets, which I absolutely loved because that's part of understanding the whole person. This rapid adoption of telemedicine really came because of legislation, that's the thing, between the executive orders and the public health emergency that's surrounding COVID-19, that's the reason why we were able to do what we're able to do is because we finally have the permission to do that. So it actually doesn't come down to any individual decisions that I make or you make, once we've been given this freedom to do this. I mean, we've been doing it since the moment that we were given the okay.

And it's really changed the way that we deliver care. And I really believe that the accessibility that it has brought to services like palliative care have made a difference for individual patients. And eventually further out, when we take a look back we'll show the data that it has made a difference for our population as a whole. So my thoughts to the people listening really would be is to please be advocates for yourself and outwardly for the journey that you're going through. And you have role models in the community like Stacey and Stephanie maybe, but there are so many active patient advocates who talk about their cancer treatment journey. And there's so many elements of it that really require the patient voice, because I will be screaming on top of the mountain, but if you had 10 patients next to me, their voice will carry a lot further.

Andrew Schorr:
Just one last thing, somebody is going to be mad at me because they said, "Well, we didn't answer the question about steroids and libido." So they wonder, is there anything else to do what... These issues of libido, how do you get at that and say, is it the steroids? Is it something else?

Dr. Subbiah:
Sure. The cause of low libido is... There are actually multiple possible causes. And it's actually the same approach to any other symptom because you can't start treating any symptom until you actually fully understand what's the cause behind it. And so the science behind a low libido is one that actually merits exploration from a thorough history to a physical exam to lab tests. And so at the conclusion of all of that, I'll have the information that I need to come up with a plan together, because I can look at you and say, "Mrs. Smith, from the history you gave me and the lab test for hormonal levels, et cetera, these are probably the reasons that are contributing to this, to you having a low libido right now. And so this is how we can approach it." So that symptom of low libido that you may bring up, probably may not come up in a usual conversation, or it may come up as an afterthought is frankly just as important as any other symptom that you're going through and actually merits the same medical attention that I would give for cancer pain, or nausea or shortness of breath or whatever it may be. So don't sell yourself short because it is a medical symptom and it needs a thorough medical approach.

Andrew Schorr:
Thanks for being with us today. I’m Andrew Schorr, remember, knowledge can be the best medicine of all.

Recommended Programs: