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Follicular Lymphoma Expert Q&A: Coping with Relapse and Managing Treatment Side Effects

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Follicular lymphoma expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center empowers patients and families with practical guidance on key aspects of managing follicular lymphoma. Dr. Maddocks covers effective strategies for managing treatment side effects, navigating the challenges of relapsed or refractory disease, and defining what survivorship means for both patients and their care partners.

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See More from START HERE Follicular Lymphoma

Related Resources:

How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

 Addressing Vulnerabilities in Follicular Lymphoma

Addressing Vulnerabilities in Follicular Lymphoma

 What Are Common Follicular Lymphoma Treatment Side Effects?

What Are Common Follicular Lymphoma Treatment Side Effects?

Transcript:

Lisa Hatfield:

Welcome to this START HERE Patient Empowerment Network program. This program bridges the expert and patient voice, enabling patients and care partners to feel comfortable asking questions of their healthcare team. I’m Lisa Hatfield, a cancer survivor and also an Empowerment Lead at Patient Empowerment Network. Joining me today is hematologist-oncologist

Dr. Kami Maddocks, Professor of Clinical Internal Medicine in the Division of Hematology at The Ohio State University Wexner Medical Center. Dr. Maddocks specializes in treating patients with B-cell malignancies, including non-Hodgkin’s lymphoma, Hodgkin’s lymphoma, and chronic lymphocytic leukemia. Dr. Maddocks researches new therapies for these hematologic malignancies, largely through evaluating new targeted therapies in clinical trials. Thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Thank you, Lisa. It’s a real pleasure to be here with everyone today and talking about follicular lymphoma, and I just really appreciate you having me.

Lisa Hatfield:

The world is complicated, but understanding your follicular lymphoma diagnosis and treatment options along your journey doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of your follicular lymphoma treatment and survivorship. Joining us are patients and care partners facing a follicular lymphoma diagnosis, some of which are newly diagnosed, in active treatment, watch and wait, and also living for years with their disease.

START HERE is designed to provide easy-to-understand, reliable, and digestible information to help you make informed decisions. I’m thrilled you’ve joined us. Please remember to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. Okay, Dr. Maddocks, let’s start here. What is the latest in follicular lymphoma, and what are the most important highlights for patients and families?

Dr. Kami Maddocks:

When we look at some of the stuff that’s changed in follicular lymphoma, there has actually been some really exciting developments just in the last year in follicular lymphoma. So when you look at patients who have relapsed or refractory follicular lymphoma, we’ve actually seen the approval of three different new therapies just in the last year for relapsed/refractory follicular lymphoma. So one of those therapies, we saw a brand new approval, and that’s a therapy which combines an oral targeted therapy with a monoclonal antibody.

So the combination of the CD20 antibody, obinutuzumab (Gazyva), in combination with the BTK inhibitor zanubrutinib (Brukinsa) was approved in March of 2024 for patients with relapsed/refractory follicular lymphoma. And this was based on a study that compared that to the single agent anti-CD20 antibody. So while we have had CD20 antibodies approved in both original treatment for follicular lymphoma and relapsed disease, it was the first time that we’ve had a BTK inhibitor approved for the treatment of relapsed/refractory follicular lymphoma.

In May of 2024, we saw the approval of actually the third chimeric antigen receptor T cell or CAR T-cell therapy for relapsed/refractory follicular lymphoma. So previously, we’ve had two different CAR Ts that target the same antigen or protein CD19 on the cell. And the third therapy with the same target was approved in May of this year for relapsed/refractory follicular lymphoma. And then in June of 2024, we actually saw the approval of the second bispecific antibody for the treatment of relapsed and refractory follicular lymphoma.

So previously, we had one approved almost two years ago in December, and a second one, epcoritamab-bysp (Epkinly) was approved in June of this year for patients with relapsed/refractory follicular lymphoma. So three different treatments approved in this setting in the last year, which increases the options for patients. It also provides us with thinking about sequencing these agents. And there’s a lot of studies ongoing to decide or to think about what is the best way to sequence therapy, because there’s no right or wrong answer currently in which therapy did you choose and when in patients with relapsed/refractory follicular lymphoma.

And then thinking about managing when we’re choosing these therapies, what are the side effects of these therapies and managing these side effects? Right? Because chemotherapy is often used for patients with initial diagnosis, and there is very specific side effects to chemotherapy and ways to manage those side effects. But when we look at some of these newer therapies, we have to think about the different toxicity profiles that they have and how we manage those toxicities.

So when we’re thinking about the newer therapies, like bispecific antibodies and CAR T-cell therapies, there’s very specific toxicity with those therapies, including cytokine release or CRS. And then something called ICANS, which is immune effector cell-associated neurologic toxicities, which are neuro side effects of these therapies. And so how do we identify and manage those therapies and now even looking at ways to potentially prevent patients from having those specific toxicities.

Lisa Hatfield:

Okay, thank you. So regarding those toxicities, like the ICANS and the CRS, is there a difference in how you treat patients? For example, if a patient might experience those side effects, are they hospitalized for that type of treatment initially, or are all of these new treatments done on an outpatient basis?

Dr. Kami Maddocks:

Yeah, that’s a great question. So the answer can be variable depending on the specific product or the center where the patient’s receiving them, and then even the disease that they’re used in. So let’s just talk about bispecific antibodies to start. So the first bispecific antibody that was approved in follicular lymphoma was mosunetuzumab-axgb (Lunsumio). There’s no required hospitalization to administer that, but there is a recommendation that if patients have signs or symptoms of cytokine release.

So the primary symptom is fever. That’s the number one most common symptom that patients will get and how we define cytokine release. But patients can also have hypoxia or a drop in the oxygen or hypotension and a drop in their blood pressure. So if they have these, it’s generally recommended that they’re admitted for a period of observation to ensure that those toxicities don’t worsen or escalate and that they’re treated if they do.

Which treatment can include ruling out other causes. Some patients may need antibiotics if they have low blood counts and a fever. Some people will need fluids and oxygen. Then sometimes we use steroids like dexamethasone (Decadron) or even cytokine blockers to help manage those side effects, particularly if they’re what we call higher grade or more significant. The second bispecific antibody epcoritamab-bysp. That was previously approved in diffuse large B-cell lymphoma and there was a recommended hospitalization with a step-up dosing for that.

However, in follicular lymphoma, when they studied that, they gave an extra dose. So part of trying to prevent the cytokine release is giving a lower dose and then increasing the dose each week until you reach the maximum dose. So they added an extra kind of intermediate dosing in the follicular dosing and showed that that made a lower risk of…a lower number of patients had cytokine release. And that the majority of them had the lowest grade cytokine release.

So in follicular lymphoma, it’s actually with that increased one dose in there to get to the maximum dose. It’s actually not recommended, or it’s not required that patients are hospitalized for any of the doses. But, of course, if they would, same thing, if they would have side effects, then you would consider that. And then the same thing could be said for the CAR T-cell therapies. Some of them are given inpatient and then patients are monitored for a period of time, and then some are administered as an outpatient. And patients are seen daily for that to check on how they’re doing, monitor for side effects, have labs. And sometimes it just depends on the center administering the therapy, how they have a setup for patients to be monitored.

Lisa Hatfield:

So I have two follow-up questions to that overview. Are these newer approved therapies, are they available at some of the smaller cancer centers, or are they only available right now at the larger cancer centers or academic centers? Then my second question is, are they limited duration therapies or like bispecific antibodies, does that just continue until disease progression?

Dr. Kami Maddocks:

Yeah, those are great questions. So in general, if you look at the combination of the obinutuzumab and zanubrutinib that should be able to be administered anywhere, the therapy for the oral therapy is continued until progression. If you look at the bispecific antibodies, there’s both. There’s a time-limited therapy, and then there’s one continued until progression. I think in general, we’ve seen that initially these have been used at larger treatment centers, but now that they’ve been approved for a while, we have seen a lot of these being used at smaller cancer centers and in the community centers. Sometimes patients may receive their initial dosing at a larger center and then transition to a local center. But I think, like I said, now, especially the one that’s been approved for a while, we’re seeing that it can be started at many places.

Lisa Hatfield:

Thank you so much for that important overview, Dr. Maddocks. All right, it’s that time where we answer questions we’ve received from you. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, however, this program is not a substitute for medical care. Always consult with your own medical team. So before we dive into this Q&A, since this program centers on coping with relapse and managing treatment side effects, how do you approach these first-time conversations with patients and their care partners who are facing relapse and potentially dealing with a new set of side effects due to the changes in their treatment regimen?

Dr. Kami Maddocks:

I think that’s a great question, and I think there are a lot of things to consider. So I think the first thing that we want to think about when we’re talking about patients having relapsed or refractory follicular lymphoma is that just because patients have relapsed or refractory follicular lymphoma doesn’t always mean that they need treatment. So many patients, when they’re initially diagnosed with follicular lymphoma, are going to go through a period of observation or watch and wait where we know that they have follicular lymphoma, but they don’t have symptoms of their disease.

They don’t have a large number of lymph nodes involved, or their lymph nodes are not very large by the scans, and they don’t necessarily need to be treated until they become symptomatic or have certain concerns from their lymphoma that’s causing problems. So the same thing can happen probably more with relapse than necessarily refractory disease, but patients may…you may detect on scans that they have lymph nodes that are growing or that their disease has recurred, but they don’t always necessarily need to receive treatment.

Once you’ve identified that, yes, a patient requires treatment for their relapsed or refractory follicular lymphoma, the next thing to think about is that patient and their disease. So what age is the patient? What were they treated with initially? Because not all patients receive the same initial therapy. So the decision about what they’re going to receive when they relapse is going to be somewhat dependent on what they received for their initial therapy, what side effects they had from that therapy, and how they responded to that therapy.

The next thing is going to be that there is not just one option at relapse so really discussing the different options for those specific patients, and what are the options, what are the side effects of those options, what is the treatment schedule of those options? Because some treatments may have more toxicity, but they’re time-limited, whereas other therapies may be continued to help progression, they may have less toxicity, but over time that’s a toxicity that patients continue to experience on a daily basis.

So really talking to the patient about the options, what does the schedule of that treatment look like? Do they have to come in weekly? Do they have to come in once a month? And then again, the side effects and how that fits into side effects that they had with their initial therapy, how they tolerate that, are any of those side effects still there?  For example, if a patient has neuropathy from their therapy, that might be something that lasts and then considering all those things and making an informed decision with the patient.

Lisa Hatfield:

Okay, thank you. And these questions are in the perfect order, because we have a question from Lauren asking you, what is the difference between relapsed and refractory? 

Dr. Kami Maddocks:

Okay, this is another great question. I’m sure all these questions are great. When we think of relapsed disease, we think of a patient who’s had therapy, got in a response to that therapy, that response has lasted some time, and then their disease recurs. When we think of refractory, we think of that more as patients that have received a therapy, and they haven’t responded. Now, there is no standard definition of refractory. So we all agree that if a patient gets a treatment and their disease does not respond to that treatment, they’re refractory to that treatment.

But there’s no defined time for which if a patient has a treatment and responds to that treatment but has a short relapse, what’s really considered refractory. In general, a lot of studies that look at a therapy say that if you’ve had it, like if you’ve had rituximab (Rituxan) and you’ve relapsed within a six-month time frame, that that’s refractory. But some studies use three months instead of six months.

Lisa Hatfield:

Okay, thank you. Another patient, Jeff, is asking, Dr. Maddocks, I’m currently in an observation stage of non-Hodgkin lymphoma. I get blood work twice a year and scans once a year. I’m hoping it stays slow-growing. How long on average can a person live in observation mode before treatment must occur?

Dr. Kami Maddocks:

So this is another great question. And I’m going to provide kind of an overview that we’ll kind of set up, because there may be more questions like this. But in general follicular lymphoma is not one disease, which I’m sure since this is a program focused on relapsed/refractory follicular lymphoma, a lot of patients have heard this and know this. But it’s what we call it’s very heterogeneous, or it can behave very differently in patients, meaning that some patients will have very indolent disease, and then there’s a small portion of patients whose disease will be more aggressive.

We know that when we diagnose patients with follicular lymphoma there are some patients that are diagnosed and require treatment pretty quickly, whereas there are other patients that go many years, many, many years without requiring treatment. Some of that is because of the disease, and some of that is because of how we find a patient’s follicular lymphoma. Some patients, we don’t find it until they present with symptoms. Some patients find their own lymph nodes, and some patients are diagnosed because they have a baseline scan that for a totally different reason, maybe get into a car accident, have scans to make sure nothing’s broken, you find an enlarged lymph node, you biopsy it, and you find this diagnosis.

All that said, there are some studies that have looked at patients who are on observation or watch and wait and looked at treating patients who have what we call low tumor burden, or not a lot of lymph nodes, or not very large lymph nodes, but have what’s called advanced stage disease. So lymph nodes on both sides of the diaphragm, not large enough to necessarily require more aggressive treatment, they don’t have symptoms. But we’ve treated, we’ve looked at studies treating those patients with observation or watch and wait or single agent rituximab (Rituxan) therapy. And when you look at the patients in those trials, the median time to needing treatment for patients from observation was three years.

However, there were 30 percent of patients, so one out of three patients who were still being observed at 10 years without requiring any therapy. So there are patients, that’s almost a third of patients at 10 years who’ve been observed, not required therapy in that population of patients. And certainly I have been practicing for a while where I’ve seen patients, I do have some patients who’ve gone longer than that without needing therapy.

Lisa Hatfield:

Okay, thank you. And there you go, Jeff, we hope that you’re in that third. 

Okay, thank you for explaining that. Next question, I’m not sure if it’s Jeff Run or Jeffrey is asking about the most common side effects that are associated with bispecific antibodies, and what precautions can be taken to reduce the risk of infection?

Dr. Kami Maddocks:

Yeah, another great question. There are two different bispecific antibodies that are now approved for relapsed/refractory follicular lymphoma. And I will take this time to also say that some of the exciting ongoing work is looking at those agents in clinical trials, in the frontline setting, in combination with other therapies particularly non chemotherapies.In general, I would say similar side effect profile. The most common side effect between them is the cytokine release or the CRS. So that is the most common side effect. Again, this can be defined in different ways. The most common side effects that you see from that define CRS are fever, hypotension or low blood pressure, hypoxia or low oxygen, shortness of breath, chills, tachycardia or higher heart rate. 

We have talked a lot about CRS and what it entails and how it is defined and presents. But management, it depends on what we call grading. So for patients who just, who have a fever, oftentimes, number one, you want to make sure that it is CRS and that there’s not an underlying cause. So ruling out infection or coexisting infection, if a patient is neutropenic or has a low neutrophil count and is at high risk for infection, you may treat them with antibiotics with a fever while you rule out infection.

But oftentimes, if they have a fever, you can manage symptomatically anti-fever medications like acetaminophen (Tylenol). If a patient has worsening CRS and has other symptoms associated with it, such as the hypoxia, low oxygen, or hypotension, low blood pressure, then that’s when we escalate therapy. So one you direct treatment towards that. So if they need fluid, if they need oxygen, but then that’s when you’re thinking about starting medications such as the steroid medication. So we give intravenous dexamethasone, or there are certain cytokine blockers such as tocilizumab (Actemra) that can be given to help treat the side effects of the cytokine release.

Other common side effects or that we’re seeing in more patients in the clinical trials, fatigue, rash, and then infections including upper respiratory infections, and then COVID-19 infection as well. So part of treatment of these side effects is early recognition of the side effects. So patients are monitored closely and that you’re dealing with the side effects to help them from worsening. I think infection prevention is very important with these. So it’s recommended to consider prophylaxis for certain infections. So antiviral medication to prevent viral, such as shingles reactivation, medication to prevent a specific type of pneumonia, PJP pneumonia, and then consideration I think of just making sure that patients are up to date on vaccination. And if patients do have infection while they’re getting treated, potentially delaying treatment or taking a break in order for them to recover from treatment.

Lisa Hatfield:

Okay, thank you. And this person did not give their name but is asking, Dr. Maddocks, I wanted to know how to travel as safely as possible. Is it advisable to get certain vaccines for travel like yellow fever? I plan to travel to Europe via plane and cruise. They say that there’s stage III non-Hodgkin’s follicular lymphoma getting treatment every eight weeks.

Dr. Kami Maddocks:

So this is a great question, and I’m probably going to answer this a little bit more generically, because I think that it can depend a little bit as far as what specific vaccines. But when thinking about travel, I think that it’s a good idea to look at where you’re traveling because both, where you’re traveling time of year you’re traveling and what you’re going to do when you’re somewhere can depend on what vaccines are recommended. I usually advise patients to consider looking at the CDC guidelines for recommendations for what should be received in that area, travel that time of year, what they’re going to be doing.

And then sometimes there are places that will actually have a travel clinic. Once I know what vaccines are recommended, the patient knows what vaccines are recommended, then I usually work with them and pharmacy to decide what vaccines, if they can receive all those vaccines or if there were certain ones that we may not recommend. In general, it can depend on a patient, what treatments they’ve received or if they’re actively receiving treatments. But in general, we like to avoid live virus vaccines in our patients. So I take into all those factors and then would recommend discussing the specifics with your physician.

Lisa Hatfield:

Luca is asking what are the long-term side effects of bispecific antibody treatment, and how will I be monitored for them after treatment ends?

Dr. Kami Maddocks:

So another great question. I think, when we think about the side effects in general, the bispecific antibodies in the CAR T both have those unique toxicity, cytokine release being the most common. And then you also have worry about the neurological toxicity. The difference is that, depending on the specific, bispecific or CAR T that you use, but we usually, typically see these occur in lower grade or not as severe with a bispecific antibody than you can see with a CAR T-cell therapy.

You can still have cytopenias and infection risk with these therapies. Whereas in chemotherapy, we think of that as more generalized toxicities, with the cytopenias, with the risk of infection with the GI toxicities. When we think about long-term side effects, so I think one of the important things to recognize is that bispecific antibodies have not been around that long in the scheme of things, though we can’t say, the risk of 20 years, what do we see or even 10 years.

But when we think about what we have seen, we’ve seen things like the cytokine release, the infections, the cytopenias, but what we haven’t seen is things like the secondary malignancies that we worry about when we think about chemotherapy or even maybe immunomodulatory therapy or secondary cancers that patients can develop. I think for long-term monitoring, right now, at least the biggest thing you want to think about is that these therapies do deplete the lymphocytes, for a prolonged time. And so the risk of viral infections or reactivation of infections, and making sure that’s being considered.

Lisa Hatfield:

Okay, thank you. That’s an important question. So another may possibly be a care partner, Marilyn. How can I best support my loved one during relapse and what should I do if I notice my husband with new or worsening symptoms?

Dr. Kami Maddocks:

So another great question. I think it’s first of all important to ask the physician about what symptoms to watch for. So you know, are there certain worsening new symptoms or worsening symptoms that seem more likely to be related to follicular lymphoma versus something else. I think it’s always important to encourage your loved one if they are experiencing new symptoms to reach out to the physician so that they can be evaluated. Because follicular lymphoma is a disease that many people live with and many people live with it for many years. We know that patients can experience other things.

Not everything is going to be just because of the follicular lymphoma. So it’s important to be evaluated, and recognize what is going on and what is attributed to the follicular lymphoma. I think being supportive, thinking of questions to ask and making sure that those questions are answered. I think thinking about, are there resources available? I think educating yourself is one of the most important things that people can do. So knowledge is power. So just participating in things like this I think can be very helpful, because learning about what’s out there, knowing that there are many options, I think being supportive and having a positive attitude, are all helpful things.

Lisa Hatfield:

Okay, thank you. So we have another big and important question from Aubrey. How can I live a full life with follicular lymphoma while managing the emotional toll of knowing the disease may relapse? And what lifestyle changes or habits should I focus on to maintain my health during remission?

Dr. Kami Maddocks:

Yeah, so this is another great question, and I think there’s probably lots of different ways to answer this or lots of different things to consider. So I think in general, as we’ve talked about follicular lymphoma is something that people live with for a long time. So thinking about just your general health and general disposition. So, we want to think about incorporating exercise, incorporating a healthy lifestyle, thinking about exercise, and being physically active.

Thinking about particularly diet and not saying that there’s any food that you need to avoid or any specific thing, but I think eating healthy is important. I think sleep hygiene is, can be very critical for patients. I think finding, and then just general health, it’s good to have a PCP so that you’re getting good routine health maintenance. We have to think about making sure that we’re managing other medical things like blood pressure, glucose, looking, doing other routine cancer screenings, depending, if somebody’s male or female, but the screening that’s recommended for that.

Now when we’re thinking about managing this does take an emotional toll because a lot of times, when somebody’s initially diagnosed, if they don’t need treatment, the question is always like, well, how long am I, is it going to be before I’m going to need treatment? How am I going to tolerate that treatment? How long is that treatment going to last? And then that resets once a patient’s had treatment. Well, how long will I stay in remission for this treatment? What’s going to be next?

I think things that can help with that are, sometimes I think involving like psychosocial oncology, I think support groups, I think that it’s very beneficial for many patients to talk to people, whether it be through a u look at the median age at diagnosis is in the 60s, and median overall survival is greater than 20 years. So many patients are going to live with this more like a chronic disease. And so learning to kind of knowing basic facts on what it is, what are the treatments that are available, what do those treatments look like, what are the reasons that you need those treatments? And that you are able many times in those periods of not needing treatment to live a very normal lifestyle and do things. I think making sure that, I think it’s important.

One thing that I think can be helpful is you’ll continuously follow up with your physician. So thinking about questions and concerns that you have throughout the period of time, writing them down that gets them out of your mind on paper. And then when you go to see your doctor next, you have that list of questions. Because I think, sometimes we think about things, and then we worry, worry, worry. But putting them down on paper or even sending them through like a secure MyChart email message and then talking them out, because a lot of times if you don’t do that, then when you go to see your physician you think, oh, I don’t really have any questions.

And then you leave and you’re like, oh, I should have asked these 10 different things. So again, I think asking for resources. So there are many different patient friendly resources out there. I think reading material that’s been written or vetted by medical professionals as opposed to just any random material can be very helpful for patients. And then again sometimes seeking out kind of peer support.

Lisa Hatfield:

Okay, great, thank you. Sean is saying that he was diagnosed with follicular lymphoma in 2022 and in an active treatment. What advice do you have for someone transitioning from patient to survivor? I am eager and fearful.

Dr. Kami Maddocks:

Awww. Well, another good question. And I think one thing I want to recognize is that somebody with cancer is defined as a survivor from the time they’re diagnosed moving forward. So you’re already a survivor. But when you, I do think, and I tell patients this, even when we’re talking about starting treatment, I do think that being aware of kind of where patients are at mentally is important.

Because when you go through, when a patient goes through treatment, they’re very focused on next steps and next steps when you’re going through treatment are, when’s my next treatment going to happen? When’s my next scan going to happen? When you get to that point, when you’re done with treatment, you no longer have those small milestones that you’re reaching the next treatment, the next scan. You now are like, oh my gosh, I had this treatment and now, how long is it going to last?

What’s going to happen to me? What else can happen to me? And there can be a lot of fear and anxiety. I would first tell you that’s totally normal. That is a normal feeling to have at this point. So I think one, recognizing that you have them is important. I think considering things like we’ve talked about, is there a survivorship clinic, is there psychosocial oncology? Is there something that might help in talking those things out? I think setting up milestones, what is the next thing? I’m going to have a three-month appointment, I’m going to have labs.

These are the things I need to be thinking about, but if I’m not noticing these also, what things can I do to return to the things I like to do. I think also I would go back to saying, I think this is where just thinking about getting good sleep, getting exercise, eating a healthy, balanced diet, and then socializing and making sure that you’re involving friends and family.

Lisa Hatfield:

Okay. Thank you. And, Sean, you’re already a survivor, Dr. Maddocks said so. So good luck, Sean. All right, Dr. Maddocks, thank you so much for being part of this Patient Empowerment Network START HERE program. It’s these conversations that help patients truly empower themselves along their treatment journey. On behalf of patients like myself and those watching, thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Well, Lisa, thank you so much for having me. It’s been a real pleasure, and I hope everybody has a great day.

Lisa Hatfield:  

Thank you. I’m Lisa Hatfield. Thank you for joining this Patient Empowerment Network program.

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How Do Psychological Factors Impact Diet During Cancer Treatment?

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How can diet be impacted by psychological factors during cancer treatment? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss common psychosocial factors, various impacts to diet and nutrition, and strategies to help mitigate negative impacts to patient health. 

Download Resource Guide

See More from RESTORE

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Transcript:

Lisa Hatfield:

Have you ever wondered how psychological factors could influence your dietary intake during cancer treatment? Understanding this connection is more crucial than you might think. In this segment, we’ll dive into the complex interplay between mental health and nutrition on this Patient Empowerment Network RESTORE program. 

So, Joelys, what psychological factors most commonly affect a cancer patient’s ability to maintain proper nutrition during treatment? 

Joelys Gonzalez:

There are many psychological factors here in hand, but some most important ones will be like anxiety, depression, and stress are the most common ones in cancer patients and can significantly affect their ability to maintain the proper nutrition during and after treatment. For example, anxiety can lead to reduce their appetite or cause a patient to skip a meal altogether, because they’re super anxious about their treatment and sometimes they can actually forget to get their meal of day. Depression might also make it difficult for patients to find motivation into prepping a meal themselves, or even buying a meal.

Sometimes they could, specifically if they live alone, sometimes it’s hard to just think yourself, what can I eat? What should I eat? And that can cause stress. That’s where the stress comes, whether from the diagnosis itself, or it could be financial concern or worries about a family member. That can lead to a patient to have erratic eating patterns. And sometimes they can also, they might overeat as a coping mechanism, while there are others that might lose their appetite completely and not even recognize that they have lost their appetite or if they had a meal of the day. Additionally, this can also cause cognitive changes like chemo brain. We have all heard about chemo brain, we forget, or foggy brain.

This can also affect the meal planning or prepping. This can make it very challenging as many patients can lead to unhealthy eating habits. It’s also worth noting that taste can also change during treatment, which can also be a really huge side effect that many patients go through. As we can know, previously maybe a person, a patient enjoyed certain foods. Now they might not be able to taste that food, and they might find it unappealing. And making the patient’s ability to eat well, super complicated.

And I feel like to help address these issues, I have been working with patients closely to identify these psychological barriers and creating some coping skills or some coping strategies that can make it easier for them to eat or to make some easy to prep meals more enjoyable such as small meal prepping, like, just involving your family or friends overall to make something that you used to, that you used to like, or that you used to enjoy. That can help also a patient kind of overcome that barrier by having also the emotional support that many can gain from counseling or support groups or their family members or their neighbors. It could be anyone. Also, like for example, a puppy. You could have a puppy providing you emotional support.

I am a huge fan of puppies, and just recognizing and addressing these psychological factors is very crucial in helping a patient maintain their nutrition and overall health during and after treatment. And not just patients but also the care partners. Care partners also go through those challenges, especially wanting to make sure that the patient is eating well or that the patient is getting the correct nutrition.

Lisa Hatfield:

Okay. Thank you so much. 

Lisa Hatfield:

So for both you, Nicole and Joelys. We’ll start with Nicole. first. What strategies can be employed to help cancer patients overcome psychological barriers to healthy eating, such as anxiety, depression, or changes in taste and appetite? 

Nicole Normandin Rueda, LMSW:

So piggybacking off of what Joelys just offered, I think that really utilizing your health care team and all the resources available is going to be critical. So we want to make sure there’s nutritional counseling available.

So a lot of times, for example, a lot of times getting enough protein is difficult because, I mean, if you’re not eating a whole bunch of chicken all day, I mean, it’s hard to get enough protein in all three meals. So, things like Ensure or Boost or whatever, whatever it is that your health care team recommends, not only can they recommend it, but usually there are social workers that can help you get, either coupons or discount codes or whatever, because the cost can also add up. So that’s a huge strategy, right? Utilizing your network, your health care team, to really make sure that you’re helping alleviate any of those issues that you may be having is first and foremost.

Next, I would say, if you needed it, there are cognitive behavioral therapy techniques, as well as like behavior change techniques that you can use, and you can go through with a counselor to figure out how you can change your thought process and help set goals, monitor, food journals, all these little things that for some people super helpful, other people, maybe not so much. Other people might just be like, hey, I just need to remember to eat something today. I need to be able to keep my food down in order to take my medicine. So that’s where we’re going to prioritize our efforts, right?

And then also, as far as the taste and texture thing. There are texture things that some people either can no longer handle or have never been able to handle really. And so we want to make sure that we are encouraging or offering suggestions that are helpful. But also, there are things that happen with side effects when it comes to your mouth, your salivary glands, your taste buds, all of that, your throat.

There are side effects that so many different patients with cancer experience that are not really talked about. And so we have to make sure that we are just on top of it. So we’re making sure that if you’re not eating something, if you’re not, if you don’t go near a certain food, what’s the reason there? And then we can offer suggestions if we need to. Another thing that is difficult to do is mindful eating. And what does that mean, right? Promoting like slow eating. So there are chemicals in your brain that whenever you are eating too fast, your body doesn’t understand, like it takes a while to catch up and say, oh wait, I’m full or oh you know what, this is not what I needed right now.

So we want patients to just slow down. Make sure you are listening to your hunger, like, if you don’t really think about it, sometimes you’re like, oh my goodness, it’s gone eight hours, and I haven’t had anything but an apple. That’s not going to be helpful long term.  So we want to make sure we’re having patients understand the consumption process, what it looks like, how often should I be eating, and what are the meals, what should they look like? Are berries enough, or do we need to add like a protein, some walnuts in there to eat the berries with the walnuts?

What is it that I need to do in order to make sure that I am meeting these nutritional recommendations? 

Lisa Hatfield:

Okay, thank you, Nicole 

Lisa Hatfield:

And, Joelys, do you have anything to add to that? Different strategies that can be employed by cancer patients to help overcome those barriers to eating healthy? 

Joelys Gonzalez:

Honestly, I want to piggyback on what Nicole said. She mentioned most of the strategies that I can possibly think of at the moment, but making sure you work closely with your healthcare team. It’s very important. That could be either the dietitian or your mental health professional making sure that you are having a unique personal plan for you. That’s very important, not just for the nutritional needs of a patient but also for the psychological needs.

For example, like I mentioned before, anxiety and depression, if you’re feeling anxiety and depression, psychological support might be like counseling or therapy can be super beneficial, because they can help you manage those emotions and find motivation and for eating again. Also, for example, you mentioned the changes of taste, you can also continue to try small spices or different spices or different texture until you’re able to get to that comfortable space that you’re looking for. And not just trying to give up at the first hand, I know it can be tough.

t is tough to be focusing on whether your mental health or your nutrition, but also being able to focus on having to celebrate that little small step. It’s very important to continue motivating yourself. And also, I encourage having small meals. Don’t think about it as a full meal perspective when you’re looking at your nutrition, because starting small is better than starting big and being disappointed and having that disappointment or overwhelming feeling.

Lisa Hatfield:

You heard it here directly from our experts. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield.

Nutritional Essentials: Supporting Behavior Change During Cancer Treatment

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How can diet and lifestyle changes impact cancer care and recovery? Oncology dietitian Dr. Cynthia Thomson from the University of Arizona discusses diet and exercise, comorbidities, self-regulation methods, and oncology dietitian support. 

Download Resource Guide

See More from RESTORE

Related Resources:

What Is an Oncology Dietitian vs. a Nutritionist?

What Is an Oncology Dietitian vs. a Nutritionist?

 Does Diet Adjustment Impact Cancer Care?

Does Diet Adjustment Impact Cancer Care?

 Age-Informed Nutrition and Intervention Strategies for Cancer Patients Across All Ages

Age-Informed Nutrition and Intervention Strategies for Cancer Patients Across All Ages

Transcript:

Lisa Hatfield:

How do patients optimize nutrition during cancer treatment? What are some actionable steps towards supporting behavior change during this critical time? I’m connecting with a respected expert to learn more on this Patient Empowerment Network RESTORE program. 

Dr. Thomson, how can changes in daily habits like diet and exercise really impact cancer care and recovery, and why is this something that patients and care partners should pay attention to? 

Dr. Cynthia Thomson:

Well, importantly, we move every day and we eat every day. And we can make decisions about what we eat and how we move that really can optimize not just our response to cancer treatment, but also our longer-term health, right? And keep that cancer at bay as well as reduce comorbidities, things like diabetes or hypertension that might sneak up on us as we age. And so it really is important to make healthy decisions about what we’re eating and how active we are as cancer patients, but also in general, everyone needs to think about these things.

Lisa Hatfield:

Okay, thank you. And Dr. Thomson, in your study, self-regulation was strongly associated with meeting nutritional and physical activity recommendations. What strategies could be employed to enhance self-regulation in cancer survivors, particularly through mobile app interventions? 

Dr. Cynthia Thomson:

Yeah, so, self-regulation is always a bit of a challenge for each of us, but it’s so important, right? And it starts really with mindfulness and really thinking about the connection between what we eat, how active we are, and how it affects our health. And believe it or not, a lot of people really haven’t given a lot of thought to that. And it’s amazing to me because as I work with patients, what I realize is when they make that connection, when they realize how much better they feel, it makes them kind of self-motivated to continue to self-regulate.

Now there are a lot of different ways you can self-regulate, and one is self-monitoring. And I think that’s probably the most common. Many of us have our watches, right? We have our little devices on our wrist that we use to monitor our activity and perhaps our sleep and maybe even some health outcomes. But in addition, you can do things like think about how you walk through the grocery store. You start in the produce section, right? Instead of going to the cookie aisle. You can think about where you park your car and are you allowing yourself to park further away so that you can walk. So setting some of those self-regulatory behaviors can really help.

You can, in terms of eating, write down what you eat. There are literally hundreds of apps where you can download information about what’s in the food you eat and guide yourself to make better choices. Most people will get tired of writing down what they eat. And so usually if people want to do kind of the written or the app approach, I’ll recommend that they pick a few days of a week or maybe the first week of the month and not burden themselves with doing this day in and day out because over time it begins to lose its excitement. The feedback that you’re getting is not quite as enticing and you begin to feel burdened and you may even change your habits for a lower quality diet simply because you’ve kind of had it with the app.

Lisa Hatfield:

Okay, thank you. Now for patients who are trying to monitor what their intake is and what their diet looks like and maybe they do have access to an app but maybe they don’t, do most cancer centers have a dietitian that a cancer patient can work with on nutritional information surrounding their cancer diagnosis? 

Dr. Cynthia Thomson:

Well, Lisa, I wish they did. But the data that we have suggests there is one dietitian for about every 1,208 patients, which is just dismal. So I do think it’s really important when you’re in care to ask for that referral and try to get in with an oncology dietitian. There are dietitians who practice outside of oncology that certainly can be helpful, but they’re not going to have the insights that you’re going to get from an oncology dietitian. You may have to go to a larger kind of academic or what we call comprehensive cancer center in order to locate a dietitian with this expertise. But I think it’s important to speak up and maybe we’ll get more dietitians on staff if patients advocate for this important information and support during their care.

Lisa Hatfield:

Okay, thank you. Dr. Thomson, how do you think self-efficacy and self-regulation can be effectively promoted in cancer survivorship programs, especially among populations with lower initial adherence to health behaviors? 

Dr. Cynthia Thomson:

Well, I think there’s a number of different ways that we can help people to self-regulate. I think the important thing is to meet people where they are. I think a lot of times as professionals, we’re really quick on giving advice that comes from our own context and our own set of values and beliefs. And most times when we’re asking people to do things that align with our values and beliefs, it doesn’t always work.

And so many times they say it’s really about listening. It’s about hearing the patient and really having patients share what is it that, why are you coming to see a dietitian or why are you interested in nutrition? What motivated you to come here today? What are you expecting to get out of these counseling sessions? And really focusing on having people understand where the gains are for them. I would say that many times it’s important to think about knowledge, right? Because a lot of times people will not have the foundational knowledge to make the right choices.

And certainly we need to support knowledge, but it really is much bigger than that. We have to support self-efficacy. We have to help them build belief in themselves that they can adapt a whole new dietary plan if that’s what is necessary. And so I think it’s really important for us to reward good behavior, support them in any way with information or advisement when they ask for it. And then also to really make sure that we repeat, repeat, repeat. Because I think a lot of times, especially patients in cancer therapy are dealing with a lot. And if you’re trying to work on changing your diet on top of everything else, sometimes it goes in and out and you have to kind of be there to repeat the messaging and support all along the way.

Lisa Hatfield:

Okay, thank you. You heard it here directly from the expert. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield.

Age-Informed Nutrition and Intervention Strategies for Cancer Patients Across All Ages

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What are nutrition and intervention strategies for age-inclusive cancer survivorship? Oncology dietitian Dr. Cynthia Thomson from the University of Arizona discusses cancer research studies on diet and exercise behaviors, strategies to make studies more age-inclusive, and ways to increase self-determination in cancer survivorship.

Download Resource Guide

See More from RESTORE

Related Resources:

What Is an Oncology Dietitian vs. a Nutritionist?

What Is an Oncology Dietitian vs. a Nutritionist?

 Does Diet Adjustment Impact Cancer Care?

Does Diet Adjustment Impact Cancer Care?

 Nutritional Essentials: Supporting Behavior Change During Cancer Treatment

Nutritional Essentials: Supporting Behavior Change During Cancer Treatment

Transcript:

Lisa Hatfield:

Navigating cancer treatment is challenging at any age. How can age-specific strategies support better outcomes for cancer patients? I’m getting insightful answers from a leading expert in this edition of the Patient Empowerment Network RESTORE program. 

Dr. Thomson, your study suggests that age at diagnosis was not a significant effect modifier. What implications does this have for designing interventions that address diet and physical activity behaviors across different age groups? 

Dr. Cynthia Thomson:

Yes, I think it’s really important when we think about designing studies that we think about what is best for the individual patient, right? And, unfortunately, when we’re designing trials and we’re trying to evaluate diet and physical activity, we have to keep what’s called treatment fidelity. We have to kind of give everyone the same package, right? Because we want to know if this package works.

On the other hand, we know that patients do best when we individualize that care. And so it’s kind of a dance that we do as researchers to make sure patients get what they need, but also are relatively adherent to a plan that we’re testing with hypotheses. And so I would say that in some of my research, age has not been an effect modifier. In others, it has. And it really comes down to two things, I think. One is in individual studies, the age range may be very narrow, right? A lot of times when we go to do exercise and diet studies, we focus on, oh, we don’t want anyone who has heart disease, or we don’t want anyone who might fall, or we don’t want anyone who’s, we’re going to drive up their blood pressure.

And so in order to keep things safe, we may develop an age range for enrollment in our trial that kind of excludes people at either end. And so that lack of significance as an effect modifier may just reflect that it was a pretty narrow age range. The other thing is I always tell people when I hang up my flyer and say, come join my diet and physical activity study, cancer survivor, we need you. It attracts the people who are already walking, the people who go, well, I’m a vegetarian, I’d be great for this study. And so one of the things that we really need to do in research is to be more inclusive and to get those different age groups into different studies. And we are starting to do that. I think there are more and more studies that are reaching higher and higher age groups, younger age groups, trying to be more inclusive.

Lisa Hatfield:

Okay, thank you. And then considering that health behaviors and beliefs among adolescent and young adults and adults or older cancer survivors were found to be similar, how should this influence the way that we approach the development of age-inclusive survivorship care plans? 

Dr. Cynthia Thomson:

Yeah, so care plans I think are imperative to really help people kind of have that self-determination about where they’re going during and after their cancer journey. And I think it’s important to think about age. I think it’s also important to think about race, ethnicity, resources that individuals have. We need to think about the individual overall and adapt our care plans to meet individual goals and individual needs. Even things like language, preferable language, many times are not addressed during cancer care or survivorship. And so we really have to get back to that and make sure that we’re meeting all of those needs across the spectrum of cancer survivors that we treat.

Lisa Hatfield:

Okay, thank you. And I just want to clarify a little bit the word or the term survivorship care plan. What exactly is that and what would that include for people who are wondering, hmm, I don’t have, I’m a cancer patient, but I don’t have a survivorship care plan. What might you tell them about that? 

Dr. Cynthia Thomson:

Usually it’s the nurses that really take charge of helping patients develop their survivorship care plan. And really, this is a written plan that goes within your medical record that really details, what your current health status is, what your goals are as a cancer survivor. It may even detail different resources, different providers you need to meet with, the frequency that you need to follow up on your survivorship care. And so diet and physical activity should be part of that survivorship care plan, but those plans are much broader. They’re really addressing all of the healthcare needs that a cancer patient will need to tap into both immediately and long-term.

Lisa Hatfield: Okay, thank you for explaining that. You heard it here directly from Dr. Cynthia Thompson. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

Does Diet Adjustment Impact Cancer Care?

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How is cancer care impacted by diet adjustments? Oncology dietitian Dr. Cynthia Thomson from the University of Arizona discusses potential impacts of strategies for symptom management, immune response, nutrient deficiencies, inflammation, and diet patterns. 

Download Resource Guide

See More from RESTORE

Related Resources:

What Is an Oncology Dietitian vs. a Nutritionist?

What Is an Oncology Dietitian vs. a Nutritionist?

 Age-Informed Nutrition and Intervention Strategies for Cancer Patients Across All Ages

Age-Informed Nutrition and Intervention Strategies for Cancer Patients Across All Ages

 Nutritional Essentials: Supporting Behavior Change During Cancer Treatment

Nutritional Essentials: Supporting Behavior Change During Cancer Treatment

Transcript:

Lisa Hatfield:

How can adjusting your diet support you through your cancer journey? I’m excited to connect with a top expert to help us find the answers on this Patient Empowerment Network RESTORE program.  

Dr. Thomson, what are the key components of nutrition that patients should be thinking during their cancer treatment? 

Dr. Cynthia Thomson:

I think to start with, people need to think about what kind of symptoms they might be having during treatment and how can nutrition help them manage symptoms because I think symptom management is probably the most central nutritional issue in terms of making sure people can get through their cancer treatment in a timely manner that aligns with the prescription and optimizes their outcome after treatment. So I think managing those symptoms is one of the key components.

The second is to really do an assessment of what you’re eating and the quality of that diet. Are there nutrient deficiencies that need to be addressed and really honing in on specific nutrients or eating patterns that need to be evaluated and addressed. And then I think the third is really to move towards that long-term cancer survivorship eating plan. Where we’re really promoting a diet that’s more plant-based, a diet that is going to help reduce comorbidities, a diet that’s going to help you have the highest level of vigor and vitality after treatment. And so it’s kind of a continuum from symptom management, address those deficiencies and inadequacies in the diet, and then let’s go after optimization to reduce any risk of cancer recurrence as well as keep us healthy overall.

Lisa Hatfield:

Okay, thank you. And, Dr. Thomson, can you speak to the connection, if there is one, between the immune system and blood type and its impact on diet for cancer patients? And is this a consideration during care for you and your colleagues while supporting patients through their cancer journey? 

Dr. Cynthia Thomson:

Yeah, so I do think there are a number of different, what we call fad diets, like the blood type diet, that are intriguing. Could our blood type actually dictate what diet we should be on and what diet is optimal for our health? I would say that there’s just a total lack of evidence for the blood type specifically. And so will research evolve in the future? I don’t know. I think right now we need a lot more preliminary evidence that this matters, and this is an important factor before we would move forward.

In terms of the immune system, I think this is where diet is critical, as well as physical activity. There is a lot of evidence that when we get active and when we eat certain foods, we can modulate how our immune system responds. And in fact, our immune system is the checkpoint, to make sure cancer does not develop in our bodies or that when it does develop, we can counter it.

I think it’s really important to think about what we eat and our physical activity to enhance our immune system. And I’ll give you, One of the more common examples is adequacy of vitamin C and making sure that we have adequate vitamin C for our immune system to respond. We also know that people who are deficient in vitamin D can have lower immune response. It can happen with other nutrients as well, but on the other side, we have things like inflammation, which is a hallmark of cancer. And so If we can select dietary components that are anti-inflammatory that reduce the inflammatory response within our bodies, then that also can help to modulate our cancer risk. So I think this connection between lifestyle behaviors and the immune system is critical. It is the primary mechanism by which these health behaviors protect us and keep us healthy.

Lisa Hatfield:

Okay, thank you. I do have a follow-up question. As a cancer patient myself, and I know you’re a cancer survivor also, so we hear a lot about different diets, the blood type diet we just talked about, and then things like the keto diet, eat more protein, eat less protein, eat plant-based, importance of the health of the gut microbiome. Is there any evidence that any one type of diet works better than another when it comes to not just cancer prevention, but maintaining where we’re at with our cancer, whether it’s curing it or maintaining, stabilizing the cancer when it’s not curable? Do you have any comments on that? 

Dr. Cynthia Thomson:

Yeah, I mean, I think, first of all, there is a lack of randomized controlled trials, what we consider the gold standard, right? So, in terms of, can I say to you, we have 18 studies that say, the Mediterranean diet is the way to go. We don’t have that. What we do have is a lot of what we call epidemiological data.

So when we look at the diets of individuals who are either prior to their diagnosis of cancer, during their treatment, or after their treatment, we have increasing evidence that people who eat certain diet patterns, like a Mediterranean diet, like an anti-inflammatory diet, or score high on what we call the healthy eating index, where the quality of the diet is very plant-based, lower in fat, lower in processed foods, particularly processed meats. When those patterns are followed, we see better outcomes in terms of survival, but we also see that we can modulate certain inflammatory responses, oxidative stress, et cetera, that lead to cancer. So the mechanisms are there as well.

Lisa Hatfield:

Is there any evidence that there are cancer superfoods that might help stop the cancer or prevent cancer? I hear about blueberries being a superfood. Can you name any superfoods, or is there evidence to support that? 

Dr. Cynthia Thomson:

Well, I think we all have our own superfoods, right? Broccoli, because it’s a cruciferous vegetable, or garlic and onion, which are known to enhance immune response against viral infections, or, on and on and on omega-3 fatty acids. And it could go on and on. So I always hate to say that any one food is going to prevent cancer. That is so unlikely. If there is one, it must be hidden somewhere. I just can’t imagine and so it really and increasingly we know this.

It’s a diet pattern, right? Like if you are, Lisa, putting blueberries on your cereal every morning, but that cereal is Cap’n Crunch or some other sugared cereal versus something that’s higher in fiber, like steel-cut oats or, you know. So I feel like we cannot look at foods in isolation because while one food may have a beneficial effect, we can easily counter that by making other choices that are not so healthy. And so we can eat this anti-inflammatory food and then counter it with a pro-inflammatory food. So it’s really the pattern of eating that we need to think about.

Lisa Hatfield:

Okay, thank you. You heard it here directly from the expert. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

What Is an Oncology Dietitian vs. a Nutritionist?

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Oncology dietitian Dr. Cynthia Thomson from the University of Arizona discusses the differences in education levels, training, and continuing education for dietitians versus nutritionists and the meaning of registered dietitians and registered dietitian nutritionists.

Download Resource Guide

See More from RESTORE

Related Resources:

Does Diet Adjustment Impact Cancer Care?

Does Diet Adjustment Impact Cancer Care?

 
 Age-Informed Nutrition and Intervention Strategies for Cancer Patients Across All Ages

Age-Informed Nutrition and Intervention Strategies for Cancer Patients Across All Ages

 Nutritional Essentials: Supporting Behavior Change During Cancer Treatment

Nutritional Essentials: Supporting Behavior Change During Cancer Treatment

Transcript:

Lisa Hatfield:

Dr. Thomson, can you explain the difference between a dietitian and a nutritionist, and why it’s important for patients to seek out the appropriate person, maybe in their cancer center and oncology dietitian when receiving care for cancer? 

Dr. Cynthia Thomson:

Yeah. Definitely. So a registered dietitian, or what we call an RD, similar to a registered nurse, RN, right, they have had a four-year undergraduate degree that is extremely heavy in the sciences, chemistry, biochemistry, physiology. They understand how nutrients are metabolized and how the body processes nutrients to optimize health. In addition, after all of that four-year degree, which is pretty much equivalent to a pre-med degree, they will then go through an internship where they’re supervised by professionals in the field and spend quite a bit of time in the clinics with patients, learning the day-to-day application of all that knowledge that they’ve learned. It’s a five-year commitment for most individuals.

And then they have to pass a registration exam. And then on top of that, they have to stay up-to-date in terms of continuing education, right? They can’t just walk away and then for the next 30 years practice nutrition without being up-to-date. And so it’s a pretty intensive process and a lifelong learning process. In contrast, the nutritionist could be anybody. Lisa, you could decide today, you’re a nutritionist. Technically, in many states, you could hang up a shingle and say, come see me, I’m a nutritionist. And so it gets a little confusing, because people assume that people who say they’re a nutritionist know nutrition.

And, unfortunately, over the years, it has been very difficult to convince people or even educate them on what a registered dietitian is. So about a decade ago, the Academy of Nutrition and Dietetics, which is the professional organization that registered dietitians belong to, decided maybe we should opt to call ourselves registered dietitian nutritionists RDN, because then people would start to put it together that there are different kinds of nutritionists. And so many dietitians have moved to the title of RDN, others who’ve been in the field longer may have chosen to stick with the RD only. And so really look for an RDA or an RD when you’re looking for professional help, because you know you have a highly qualified individual.

When I became an oncology dietitian, my whole day was about taking care of cancer patients. I wasn’t seeing one cancer patient and five heart patients and two pediatric patients. I was seeing oncology patients, inpatient, outpatient, all different cancers at all levels of care. And so I really understood the disease process and how it affected the nutritional status of my patients. And so it’s just a matter of an oncology dietitian is really going to have that certification above and beyond the RDN that says, I know my stuff, and I’ll share it with you. And they also have to go through an exam, a special exam to be an oncology dietitian, and they have to repeat that exam every five years, so very intense. You get what you pay for, and the dietitians who put them through, themselves through all that training do so because they know that’s what’s best to meet the needs of their patients.

Lisa Hatfield:

You’ve heard it straight from Dr. Cynthia Thomson. Thanks for joining us on this RESTORE program. I’m your host, Lisa Hatfield. 

Overall Health and CAR T-Cell Therapy | Tips for Preparation and Recovery

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How can you best prepare to undergo CAR T-cell therapy to aid in optimal recovery? This animated explainer video provides key advice for learning about CAR T-cell therapy, consulting with your care team members, and tips for recuperating after the process. 

See More From Thrive CAR T-Cell Therapy

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Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

 Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

 CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

Transcript:

CAR T-cell therapy offers a groundbreaking approach for people living with myeloma, and taking steps to optimize your health can play a crucial role in your treatment journey. From preparing your body and mind before therapy to focusing on recovery afterward, there are actionable ways to support your overall well-being and, potentially, enhance outcomes. 

Here are some key steps to boosting your overall health when preparing to undergo CAR T-cell therapy: 

Start by learning about CAR T-cell therapy.

Take the time to understand how the treatment works and what to expect. Your care team can guide you through the process, from the collection of T cells to potential side effects and what to expect following therapy. Educational resources like those found on the Patient Empowerment Network website can also empower you with knowledge and confidence.  

Next, consider cost.

Confirm insurance coverage and make sure you understand the financial impact of CAR T-cell therapy. You can also meet with a financial counselor or a navigator at your medical center to see if there are any resources to assist with paying for therapy. 

Then, consult with your CAR T-cell therapy team.

When undergoing pre-treatment evaluation, be sure to get all of your questions answered and to understand what support will be available to you during the CAR T-cell therapy process.  

You should also build a support system.

Having a family member or friend who can accompany you to appointments and assist with your recovery is vital, and often required by the CAR T-cell therapy center. A care partner can be an advocate for you and help to ensure you feel supported throughout the process. 

It’s also important to plan ahead.

Coordinate with your employer for the time you’ll need to take off from work. And, if necessary, arrange for child or pet care so that you won’t have to worry about these logistics following treatment.  

And, last but not least, meet with other care team members:  

Consider a consultation with a nutritionist for advice on a diet that supports your body through the CAR T process, as well as safe handling tips for meals following treatment.  

A social worker can help you manage the emotional, logistical, and financial aspects of CAR T-cell therapy.   

And, meeting with a pharmacist may also be useful, as they can provide specific information about medications you will take before, during, and after treatment.  

After CAR T-cell therapy, maintaining your health is essential to boost recovery and to reduce potential side effects or complications. Here are some useful tips to aid in recovery: 

Focus on Nutrition.

Your body will need extra support as it heals. A balanced diet rich in vitamins and minerals can help boost your immune system.  

Stay Active.

Light exercise, such as walking or yoga, can help improve your strength and mental well-being. Consult with your doctor before starting any exercise routine.  

Monitor Your Mental Health.

Emotional health is just as important as physical health during recovery. Reach out for support if you’re feeling overwhelmed or anxious.  

Stay on Top of Follow-Up Appointments.

After therapy, your healthcare team will monitor your progress. Attend all follow-up appointments and keep track of your symptoms. If you notice anything unusual, contact your doctor immediately.  

CAR T-cell therapy is a powerful treatment and taking steps to prepare and care for yourself can make a significant difference in your recovery.

For more information and additional resources, visit powerfulpatients.org.

Maintaining a Health Diet During Cancer Treatment with Know AML

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Editor’s Note: This was originally published by Know AML on April 20, 2022 here.

 
 

 

For the AML World Awareness Day, Know AML was pleased to speak with Katie Walker, King’s College Hospital NHS Foundation Trust, London, UK. They asked, “Why is it important to maintain a healthy diet during treatment?”

Walker begins by explaining the content of a balanced diet in the context of different food groups. She discusses meat and dairy alternatives, as well as specific recommendations within food groups such as opting for wholemeal carbohydrates to increase fiber. Finally, she touches on supplements, weight maintenance, and reduction of appetite.

Disclaimer: This video is for informational or educational purposes only, and does not substitute professional medical advice or consultations with healthcare professionals.

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

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What Impact Does Advanced Prostate Cancer Have on Lifestyle? from Patient Empowerment Network on Vimeo.

What should advanced prostate cancer patients expect for treatment impact? Expert Dr. Yaw Nyame with the University of Washington explains common treatment side effects, advice for easing physical side effects, and ways for patients and care partners to find support.

See More from [ACT]IVATED Prostate Cancer

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Prostate Cancer Clinical Trials _ Is Mistrust a Barrier

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

 Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

 Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

There is often a tendency to associate advanced prostate cancer with a risk to relationship intimacy. And can you speak to sexual dysfunction and other lifestyle concerns when it comes to prostate cancer and that diagnosis?

Dr. Yaw Nyame:

So, prostate cancer, it’s important to remember that the prostate itself is a sex organ for men, right? Its primary purpose is to produce seminal fluid, the fluid that comes out with ejaculation. And it’s closely linked to a whole lot of structures in your pelvis that support, you know, erectile function and sexual function. All of our treatments have the very real potential to impact sexuality and sexual function. And, I think part of what’s important to do is you go into these and to your conversation with your doctors is to understand how your sexual function, your urinary function, and sometimes your bowel function are going to be impacted by these treatments.

And to get some real clarity about what life will look like for you post-treatment and the setting of advanced cancer, there’s also the added potential of impact to sexual function from the hormone suppression. When we take away your testosterone, oftentimes we take away things like libido or your sexual desire, and we can impact erectile function as well.

You know, things that can help overcome some of the side effects of that hormone suppression are definitely diet and exercise, being active, keeping your muscle mass up, having good dietary habits seem to help. We have a lot of mixed reviews and the literature about the benefit, but I, yeah, I’m a strong believer that the healthier you can be as you undergo these treatments, the better you’re going to do overall. My activation tip when it comes to these new diagnoses is to really invest in advocacy organizations that exist in your community so that you can be connected to other men who are undergoing treatment to have candid conversations about life as a prostate cancer survivor. Organizations like ZERO – the End of Prostate Cancer. There are local groups the NASPCC, there are just chapters and groups of men all across the country that gather to talk about their journey.

And I think that that can be a really wonderful network to better understand what treatment realities may look like for you, but also to support the emotional and physical toll that treatment may take on you. And I think that, that being part of those networks actually will also arm you and empower you to have really good conversations with your doctors to understand what resources are available to support you in your survivorship.

What a lot of men and individuals of prostate cancer aren’t told is that there are some solutions for some of these problems may not be like it was before, but there are many treatments that can exist and do exist that can help preserve certain portions of this quality of life, these quality of life components. And if you don’t know about them, you can’t ask about them. And if you’re not willing to confront them, you may not ask about them and suffer unnecessarily.

My activation tip for care partners related to this question would be, have the tough conversation. Talk about having the tough conversation, schedule a time to try and do it. Don’t do the tough conversation when the football game is on, on Sunday evening. Don’t have it on Wednesday night when the baseball playoffs are going on, but have that conversation so that the care partner can help advocate for the patient about those things that the patient may feel uncomfortable talking about. But if we don’t talk about it, we can’t work on it. And if we don’t work on it, we can’t fix it. So it is important to have the tough conversation.

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips.

[ACT]IVATED Prostate Cancer Post-Program Survey

Expert Advice | Strategies for Managing MPN-Related Fatigue

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Expert Advice | Strategies for Managing MPN-Related Fatigue from Patient Empowerment Network on Vimeo.

Fatigue related to myeloproliferative neoplasms (MPNs) can be overwhelming and may have an impact on other parts of your life. So, what can be done about it? MPN specialist Dr. Naveen Pemmaraju shares advice for understanding and managing this common symptom, including lifestyle choices that may be beneficial. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju. 

 

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Understanding and Managing Common MPN Symptoms and Side Effects

Transcript:

Katherine Banwell:

Well, it’s obvious that there’s some symptom overlap along with this.  And so I’m wondering what the strategies are for managing these. Let’s start with fatigue first.  

Dr. Pemmaraju:

Let’s do that.  

Katherine Banwell:

How do you manage that?  

Dr. Pemmaraju:

This is one of the tougher parts of what we do. I’m glad you’re pinning me down to say it, because really this is the majority of what we need to be talking about in the clinic. I’m going to just be honest, you know, with all the scientific breakthroughs and everything, some of these are limited. The fatigue, this is some of the strategies I use and some of the experts in the field. I think one is managing the underlying disease. So, as you mentioned, if you have high-risk, intermediate to high-risk myelofibrosis, one of the great findings of our field is the JAK inhibitor class generally helps to improve symptom burden.  

So, that is the splenomegaly, the fatigue, the pruritus. Maybe not so much the itching, but some of these other things. So, I think treating the underlying disease, that’s okay. Number two is many clinics, onc centers around the country are starting to open up a supportive care or fatigue center clinic. So, I am referring several of my patients there, we’re talking about diet, nutrition, exercise. We used to never talk about these things. Ruben Mesa has found that doing yoga and meditation can genuinely actually help the pathobiology to reduce the cytokine storm and improve the fatigue and quality of life. 

Dr. Angela Fleischman, our colleague at UC Irvine, has done work suggesting that possibly an antioxidant diet such as the Mediterranean diet can help the overall general fatigue, well-being, wellness. And then of course I mentioned earlier, but I’ll mention here too, sometimes fatigue is outside of the MPN. Have you had your TSH or thyroid checked? What about your vitamin D levels? How are you doing on these PCP general checks? Things that may be contributing to the life and the happiness.

And finally, let me make a plug for mental health. I don’t know how much we were emphasizing before the COVID pandemic, but after, the last three or four years have been tough. Healthcare providers, caregivers, patients themselves, mental health checkup, that can also be contributing to fatigue, not getting out of bed, in addition to the organic medical problems. So, let me advocate a multifactorial approach, scientifically summed up as treating what you can with the underlying MPN, fine, treating the side effects and symptoms of the MPN, as you said. 

And then, other, which can be a huge bucket, particularly as we get older, to not forget about that. Again, checking the thyroid level. And then when you’re on these different treatments, you can personalize it. Interferon, obviously, has its own separate set of side effects and then of course the other agents. So, I think that may be the best way to approach it. Maybe a three-bucket approach. The MPN itself, and then the treatment itself, and then the other, something like that.  

Katherine Banwell:

And as you’ve mentioned, it’s all going to be personalized and individualized.  

Dr. Pemmaraju:

Hugely.   

Katherine Banwell:

Right, because what’s going to work for one person is not necessarily going to work for another.  

Dr. Pemmaraju:

Hear, hear, well said to that. You know, you think you make a great diagnosis in the clinic, someone’s having fatigue, they’re on therapy for your MPN. You check the TSH, it’s wildly abnormal. Okay, you refer them to endocrine. Six months later, the thyroid level is completely normal now on thyroid medicine. And yet, the fatigue, brain fog, everything is still not clear.  

The MPN is under good control. What gives? That’s the difficult part of these diseases. So, I really love what you said about the personalization and to keep looking and keep trying. 

Benefits of Minerals

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Benefits of Minerals from Patient Empowerment Network on Vimeo.

Minerals are very important elements required in small amounts in the diet that are used in the body to promote various functions and to help form body structures. Watch now.

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Transcript:

Similar to vitamins, minerals are micronutrients that are essential to human health and can be obtained in our diet from different types of food.  

Minerals are inorganic elements from the Earth. Plants extract minerals from the soil they grow in and we humans obtain minerals directly from eating those plants, as well as indirectly from eating animal foods. We also get minerals from the water we drink.

Minerals are classified as either major minerals or trace minerals, depending on the amount needed in the body. Major minerals include sodium, potassium, chloride, calcium, phosphorus, magnesium, and sulfur. Calcium, phosphorus, and magnesium help in the building and maintenance of healthy bones. Sulfur contributes to the health of skin, tendons, and ligaments. Sodium, potassium and chloride are important electrolytes that help maintain fluid balance. Sodium and potassium are also important for nervous system function. Trace minerals include iron, copper, zinc, selenium, iodine, chromium, fluoride, manganese, and molybdenum. Iron is required for red blood cell function and therefore oxygen delivery. Copper is important for iron absorption and the production of red blood cells. Zinc is required for healing damaged tissue and supporting a healthy immune system. Selenium and iodine are essential for thyroid function. Selenium is also a powerful antioxidant. Fluoride is protective against tooth decay.

While deficiencies are possible with minerals, consuming a varied diet significantly improves an individual’s ability to meet their nutrient needs to maintain health and wellbeing. 

Thanks for joining this Patient Empowerment Network program. Please remember to ask your healthcare team what may be right for you.

How Does Targeted Therapy Treat Bladder Cancer?

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How Does Targeted Therapy Treat Bladder Cancer?  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari, a bladder cancer specialist from Fox Chase Cancer Center, explains how targeted therapy works and which type of patient this therapy is most appropriate for. 

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

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Transcript:

Katherine Banwell:

What is targeted therapy, and how does it work to treat bladder cancer?  

Dr. Anari:

So, targeted therapy is really a newer, more tailored approach to treating certain types of bladder cancer. Targeted treatments because they’re targeted have most of their effect on the cancer cells. Although, obviously, there’s other potential side effects. But the way it works to treat bladder cancer really depends on the different types. There are several different targeted treatments out there.   

Often, targeted treatments are approved for people after they’ve gotten chemotherapy and/or immunotherapy for their bladder cancer treatments. There are several different ones out there. Erdafitinib is one of them. It’s a pill. It’s approved for patients who have an FGFR alteration.  

Well, what is that? It’s something that your doctor finds by getting the DNA or genetic makeup of your cancer cells. So, those pills are available to people with that certain alteration that’s found on special testing. 

With these pills, potential side effects – we talked about how the effects are mostly on the cancer cells. But there are other side effects that we have to keep in mind. This drug in particular can have different eye disorders. So, we work closely with ophthalmologists.  

And then we check blood work because people can have high phosphate levels in the blood. Phosphate levels can be controlled often with diet, sometimes with medications, and sometimes with just adjusting the dose of the pill itself.  

Katherine Banwell:

You mentioned the FGFR genetic alteration. Should bladder cancer patients undergo molecular testing?  

Dr. Anari:

So, the most common place where we do that is when people have metastatic bladder cancer. It’s a good idea to test the biopsy sample or bladder cancer sample that’s already been removed.  

That way we get this information. While it doesn’t always change the up-front treatment for bladder cancer, it is really important to know really what tools in our toolbox we have for the treatment of bladder cancer.  

MPN Terms Defined: What is Leukocytosis? What is Anemia?

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MPN Terms Defined: What is Leukocytosis? What is Anemia? from Patient Empowerment Network on Vimeo.

Physician assistant, Lindsey Lyle, provides definitions for leukocytosis and MPN-related anemia, both commonly used terms when discussing myeloproliferative neoplasms (MPNs).

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

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Transcript:

Lindsey:

There are a few terms that often come up. No. 1 is “leukocytosis.” This often is a term that’s thrown around, especially in relation to myelofibrosis and also polycythemia vera, and this term means an elevated white blood cell count. That is a common thing that, as medical providers, we may just throw around in the room and not necessarily think about the fact that we should explain that a little bit better.

Additionally, “anemia” is a term very often used when talking about myelofibrosis, and that just means a decrease in red blood cells.

Often, people associate anemia with iron deficiency because this is probably the most common form of anemia, but as it relates to MPNs – and specifically, myelofibrosis – it is generally a problem with production that does not have anything to do with iron, but is actually more so just related to the disease and how the red blood cells are impaired because of the fibrosis of the bone marrow.

Can Diet and Exercise Reduce MPN Symptoms?

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Can Diet and Exercise Reduce MPN Symptoms? from Patient Empowerment Network on Vimeo. 

What can YOU do to make a positive impact on your overall MPN care? Researchers Dr. Jennifer Huberty and Ryan Eckert review the latest research on how movement and diet can benefit people living with myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

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Can Diet and Exercise Reduce MPN Symptoms?

Transcript:

Ryan:

So, as far as the benefits of exercise for MPN patients, there’s many, and so, I guess starting with cancers as a whole, there’s a lot more research that’s been done in recent decades that looks at the effects of various forms of exercise and physical activity on other cancers. They just tend – researchers tend to do a lot more of that work in breast cancer, lung cancer, colon cancer, et cetera.

And so, the research in exercise for MPN patients is actually really new, and nobody outside of Dr. Huberty in conjunction with Dr. Mesa and a few other researchers have done any research related to exercise specifically in MPN patients. Our yoga studies that we’ve done have been the first venture down that route for MPN patients. But, what we do know in general is that exercise has obviously systemic effects across the whole body.

So, you’re gonna get health benefits just in general from exercise, but as far as for MPN patients specifically, some of the things that we’ve seen with our yoga studies, which is obviously a form of physical activity, is that we’ve seen sleep improve in MPN patients, so we’ve seen a reduction in sleep disturbances or disruptions in their sleep, a quicker time to fall asleep, and then, less waking up throughout the night – so, just better sleep in general.

We’ve seen some reductions in fatigue that have been reported by MPN patients who have gone through our yoga studies, and then, we’ve also seen a few other reductions in some other symptoms, such as anxiety and reduced depressive symptoms, a little bit of reduced pain is another one we’ve seen. So, just in general, we’ve seen some of those effects on MPN patients through some of our yoga studies.

Dr. Huberty:

So, in terms of adding to what Ryan just said, I would just say that exercise – maybe yoga or walking – is good for your body. It’s good for your health. It’s a recommendation that we get 150 minutes of moderate-intensity activity every week. The more that MPN patients can be achieving that goal towards 150 minutes – yoga counting at that – the better off they’re gonna be, and it doesn’t have to be going for a run.

It can simply be going for a walk around the block. It can be standing at your desk when you’re working instead of sitting all the time. That’s not necessarily activity per se, but it is moving your body and less sedentary. So, I think just focusing on the more that patients can move their body every day, the better off they’re gonna be.

Dr. Huberty:                

So, yeah, the role of diet in MPN patients – so, this is the beauty about the quality of life study group, because we have all these wonderful investigators that are part of the team, and we do have Dr. Robyn Scherber, who’s at Mays with Dr. Ruben Mesa. She’s doing some work with keto diet right now, so it’s very new, so I don’t know if you’re familiar with the keto diet, but it’s very high-fat and very low-carbohydrate, extremely low levels of carbohydrates. I wouldn’t tell any patient to go start doing those things unless they’ve talked to their physician for sure, but we do know that based on how you eat does certain things to your body.

So, MPNs have high inflammatory markers, and so, we wanna decrease inflammation; we probably wanna eat foods that are going to be anti-inflammatory. So, berries, let’s say, is a good example of fruits that are anti-inflammatory, almonds are anti-inflammatory, and I’m not a dietitian by any means, it’s just that things that I know to be true for my own diet because everybody should be thinking about having an anti-inflammatory diet.

Processed foods are not healthy. They are higher-inflammatory. Breakfast foods, eating out, and the foods that you get when you eat out a lot are going to be more inflammatory than not. So, just those small things – lots of vegetables. Vegetables are very good. Lots of greens. But, there is research going on – again, just like exercise and yoga, it’s in its infancy because MPN has been an under-studied population for years, and we’re trying to power through and make that difference.

Am I Meditating Correctly? Getting the Most Out of Mindfulness

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Am I Meditating Correctly? Getting the Most Out of Mindfulness from Patient Empowerment Network on Vimeo. 

Dr. Jennifer Huberty explains how mindfulness, such as meditation and yoga, can have an impact on your overall health and well-being.

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

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Transcript:

Dr. Huberty:    

If someone is wondering if they’re meditating correctly or not, or if two minutes of meditation is enough, if you turn to the science and the literature in terms of how much meditation you need, nobody knows. For every study that says five minutes, there’s a study that says 20 minutes, there’s a study that says an hour. I think it’s really important that the individual gets in touch with “what works for me.”

I think the most important thing is that if you’re sitting for meditation and you choose to sit for meditation, just simply listening to your breath – when you realize you’re off, thinking about what I’m making for dinner tonight or what’s gonna happen over the Thanksgiving holidays with my family, then you just say, “Oh, thinking,” and then you come back to, “Okay, where’s my breath? I’m breathing in, I’m breathing out. I’m breathing in, I’m breathing out.” So, it’s just being able to do that and not say, “Oh my God, I’m not doing this right, this isn’t working for me.” There is none of that. It’s supposed to be nonjudgment in the present moment.

“Oh, the present moment – I’m thinking. Now, in the present moment, I’m gonna go back to my breath.” So, it’s really understanding that, and I think it’s also important for people to understand that you don’t have to be seated in meditation. You can be standing in meditation, you can be laying in meditation, you can be kneeling in meditation. I think with MPN patients, not all sitting positions recommended in meditation might be comfortable. If you need a pillow under your tail, put a pillow under your tail. There’s no rulebook to say how you need to sit in meditation. I think that’s important.

And, there’s also other ways to be mindful. Coloring can be mindful. Walking and exploring the leaves and the landscape can be mindful. So, I think in our studies, yes, we’re encouraging meditation, using an app, but that’s to give people structure, education, and a background about what is meditation, but then, there is room for expansion to other things.

It’s pretty much the same thing with yoga. You’re quieting your mind; you’re focusing on your breath. There’s no rulebook that says you have to move a certain pace. You’re supposed to move with your breath, so if your breath is slow, your pace is slow. The other thing is that there is no right way to do a pose.

So, again, patients wanna know, “Am I doing this pose right?” Well, I can tell you that if you feel good in the pose, nothing is hurting you, your shoulder doesn’t feel like it’s doing something it shouldn’t, your head doesn’t feel like it’s in the wrong direction, and you’re watching the video and looking at what the instructor’s doing, you’re probably doing the pose just fine.

I think we get stuck on “Is this correct or not?” What we wanna be careful of is safety. You don’t wanna be standing on your head and wondering if you’re doing it correctly. You wanna have a basis, and that’s what we do in our programming, is it’s very basic, very foundational poses that you can learn the practice of meditating in the poses.