Tag Archive for: Treatment side effects

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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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

How Can Follicular Lymphoma Treatment Side Effects Be Reduced?

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How Can Follicular Lymphoma Treatment Side Effects Be Reduced? from Patient Empowerment Network on Vimeo.

Follicular lymphoma patients may experience treatment side effects, but how can they be minimized? Expert Dr. Sameh Gaballa shares diet and lifestyle advice to help reduce the impact of treatment side effects.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

We have another question about treatment profiles, “What can I do to reduce side effects during active treatment?”

Dr. Sameh Gaballa:

So it depends on what the treatment that you’re getting. If it’s immune therapy, like rituximab (Rituxan) alone, those typically don’t really have a lot of side effects. I mean, sometimes with the first one or two treatments, you might get an allergic reaction, an infusion allergic reaction, which is very common, but subsequently it shouldn’t really cause a lot of side effects.

dIf the patient is getting chemotherapy, well, it depends on which chemotherapy they’re getting. But in general, it’s always good to stay hydrated and to stay physically active. So if the patient goes in with a healthy body, well-hydrated, you eat fresh fruits and vegetables, walking 30 to 60 minutes a day, your body is going to handle the side effects much better than if you’re going in, you’re very weak, and your general health is not adequate.

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Small Cell Lung Cancer Care | Communication As a Key

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Small Cell Lung Cancer Care | Communication As a Key from Patient Empowerment Network on Vimeo.

Dr. Lin is a medical oncologist who helps small cell lung cancer (SCLC) patients as a member of the healthcare team. Dr. Lin explains the urgency of care decisions with extensive stage SCLC and advice to patients and loved ones. “This is where communication between the patient and healthcare team is key to an optimal cancer journey.” She discusses common members of the SCLC healthcare team and advice for staying [ACT]IVATED for the best care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Transcript:

Staying ACTIVATED in cancer care is essential to becoming informed, empowered, and engaged in patient care, but what does that really look like? As a medical oncologist caring for patients facing a small cell lung cancer (SCLC) diagnosis, how can I best coordinate with my patients and families in the shared decision-making process?

Extensive stage small cell lung cancer (ES-SCLC) is an aggressive cancer, so swift decisions may be necessary. This is where communication between the patient and healthcare team is vital to an optimal cancer journey. Your healthcare team may include a medical oncologist like myself, pulmonologist, radiation oncologist, thoracic surgeon, nurse practitioners, a patient navigator, and many more key players on your journey. 

Given the aggressive nature of this cancer, educating yourself as the patient and patient’s loved ones helps empower involvement in the shared decision-making process for small cell lung cancer treatment and care. Asking lots of questions about benefits and risks of treatment, testing, what to expect for treatment, and support services is an important part of the patient empowerment path. 

Stay [ACT]IVATED with these tips:

  • Ask about the stage of your cancer, treatment options, treatment goals, possible side effects, support services, and what to expect during and after treatment.
  • Inquire about how often you’ll see your pulmonologist as part of your care, whether there are any clinical trial options, or who to contact if you experience any type of lung discomfort or breathing issues.
  • Find out what to expect for your treatment, the frequency, duration, side effects, and whether you might need help going to and from the treatment location.

If you’re helping a loved one in their fight against small cell lung cancer, shared decision-making is critical. Stay [ACT]IVATED by being informed, empowered, and engaged in their care. It can make all the difference.

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What Are Common Issues That CAR T-Cell Therapy Care Partners Face?

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What Are Common Issues That CAR T-Cell Therapy Care Partners Face? from Patient Empowerment Network on Vimeo.

CAR T-cell therapy is a long process, but what can care partners expect? Expert Sarah Meissner reviews common issues that care partners face, and Adrienne, a care partner, shares the difficulties that she encountered as well as the lessons she learned that might help ease difficulties for other care partners.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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Transcript:

Katherine:

Sarah, I wanted to ask you, “What are some of the common issues that care partners face?”  

Sarah Meissner:

I think this is a very stressful time here. Your loved one is not feeling well, and there are these potential side effects. And so, that can cause a lot of stress on caregivers that they’re kind of the one in charge. They’re looking for these things. Of course, they want the best for their loved one. So, it can be a very stressful time. 

Frequent appointments. Here in Denver, we have terrible traffic. So, if people live far away from the center, it’s fighting rush hour every morning to get here. That can add a lot of stress as well as if you have other things going on at home, too, other family members who need you, it’s a lot to take on. 

Katherine:

Adrienne, what experiences or issues did you have in taking care of your husband? 

Adrienne:

Well, we do have a child. She was 2 at the time. So, I did have to plan childcare pretty much every day for two weeks, which I am fortunate to have lots of friends and family here in Denver, so I was able to get that covered.  

Katherine:

It’s a lot of responsibility for you. 

It’s a higher level of responsibility, I guess, right, because you’re taking care of your child and now, your husband is very sick. And you want to make sure that everyone’s needs are being met. 

Adrienne:

Right. And driving, like Sarah had said, the driving was an issue, because it was so far for us. There are potholes and with the little bit of change in mood and not feeling well, it was hard for him to be in the car so long and not getting to drive himself. So, I think that was not the best experience. I think if we did it next time, we would try and just be closer to the hospital.  

And for me to take care of everybody else, I did make sure that I would try and work out and not being able to leave the house with him. So I work out in the living room just to get some of my own stress out, or I would have somebody come and watch him if I really wanted to go to a class to work out. And like I said before, we were very lucky to have his parents that live in town and then my mother and my sister. So, that’s something that is important to have a network of people to help you because I don’t know, depending on what you have on your plate. I think it would be almost impossible to do it all by yourself, especially if you have to work or you have children to take care of.  

So, that’s some advice or what I’ve learned from this experience. 

Katherine:

Yeah. Was it hard for you to take time for yourself? Did you feel guilty? I know a lot of people think “Oh, I need to focus all of my attention on my child or my sick spouse.” It can be difficult to say to yourself, “I really need to take half an hour or an hour,” and then, find somebody to help you out with the caregiving.  

Adrienne:

Yes. I did find it difficult. And you just know that there is going to be an end in sight. You think, ”If I can just last through the month so I did sacrifice.” But at the same time, my main concern was that my husband would get through this. So, I did feel a little guilty. And I would get a little bit of time.  

But me, personally, I just wanted to push through that month and especially that first two weeks. And then, I knew that I would be back to doing the things I love. 

Katherine:

Yes. Rather than looking too far forward, I guess it’s trying to get through every day each day. Yeah. I’m going to switch back to ask Sarah a question. Sarah, why is it so important that care partners communicate any issues with their healthcare team?  

Sarah Meissner:

So, those side effects that we talked about, there are drugs that we can use to treat them, but they work best when we can get those drugs in as soon as possible. So, if we’re starting to see signs of cytokine release syndrome, we want to get that tocilizumab (Actemra) infused in the patient within two hours. 

So, it’s really important that we know that these side effects are popping up so that we can treat it appropriately. 

What Are Common Head and Neck Cancer Symptoms and Treatment Side Effects?

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What Are Common Head and Neck Cancer Symptoms and Treatment Side Effects? from Patient Empowerment Network on Vimeo.

What symptoms and side effects can head and neck cancer patients experience? Expert Dr. Ari Rosenberg discusses common symptoms and treatment side effects and explains why it’s important to share your symptoms and side effects with your doctor.

Dr. Ari Rosenberg is a medical oncologist and Assistant Professor of Medicine at the University of Chicago Medicine. Learn more about Dr. Rosenberg.

See More From The Pro-Active Head and Neck Cancer Patient Toolkit

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Understanding the Types of Head and Neck Cancer

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Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Transcript:

Katherine:

What about symptoms and side effects? What should people be worried about? 

Dr. Rosenberg:

Yeah. So, oftentimes when patients come to us with a new diagnosis of head and neck cancer, when looking back, they’ve had, sometimes, symptoms for a while, whether it’s a nagging ulcer on their tongue, or some difficulty with speech, or a new hoarseness, or a lump in the neck that turns out to be a cancerous lymph node.  

And so, even before we get into the diagnosis of head and neck cancer, I do think it’s important for people to know that, in particular, if some of these symptoms – particularly if they’re lasting for a while and not going away with more conservative measures like antibiotics – really need to be evaluated by an ENT and a doctor team to make the diagnosis of head and neck cancer, so it can be treated. 

The side effects of treatment very much depend on the treatment modality that’s used. So, for example, when chemotherapy and radiation, and chemoradiation is utilized, oftentimes, the treatment itself could be associated with a lot of side effects from treatment. Things like a sore throat, things like skin changes, things like fatigue, challenges with nutrition, and a plethora of other things that, depending on some of the specifics, can be associated. Which is one of the reasons why we’re trying to figure out if there are some patients that we can deintensify the radiation, or do more precise radiation, rather than standard, regular dose radiation for everyone. But that’s of course in the context of some of the clinical trials that are being evaluated for improving outcomes for head and neck cancer patients.  

Emerging Treatments for Head and Neck Cancer

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Emerging Treatments for Head and Neck Cancer from Patient Empowerment Network on Vimeo.

Expert Dr. Ari Rosenberg discusses the importance of head and neck cancer clinical trials and shares an update about emerging research in treatment strategies and tumor DNA testing.

Dr. Ari Rosenberg is a medical oncologist and assistant professor of medicine at The University of Chicago Medicine. Learn more about Dr. Rosenberg.

See More From The Pro-Active Head and Neck Cancer Patient Toolkit

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How Is Head and Neck Cancer Treated

How is Head and Neck Cancer Treated?

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What Are the Types of Head and Neck Cancer?

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What Do Patients Need to Know About Head and Neck Cancer Research?

Transcript:

Katherine:

Well, that leads us to my next question, which is where do clinical trials fit in? 

Dr. Rosenberg:

So, clinical trials are really important for head and neck cancer because as much as we have tools to treat the disease, the tools that we have are suboptimal.  

They’re what we have, they’re what we use, and they can be quite successful in many cases, however, we can do better. We need better treatments for head and neck cancer. So, broadly, the clinical trials can actually be across multiple different treatment settings, whether earlier stage disease, or later stage disease. And the goal of the clinical trials are often to develop better treatments. What can that mean? Treatments that work better against the cancer, so help patients live longer with better quality of life. 

Sometimes clinical trials evaluate strategies to reduce the toxicity, or the side effects associated with treatment, so many trials are trying to evaluate strategies to reduce some of those kinds of side effects with the treatment. And then many trials are also trying to use, for example, new biomarkers, or new tests, which can help sometimes predict which is the right treatment for the right patient.  

One patient may need a more aggressive treatment, one may need a less intensive treatment. So, at our center, for example, we have clinical trials that, depending on the particular circumstance for those patients, that are trying to take what we have as the current standard, and build on that, to either improve survival and outcomes for patients, or reduce side effects, or both in order to optimize patient outcomes.  

Many of our clinical trials incorporate new immune therapies. So, immune therapy treatments are strategies that harness the body’s immune system to attack cancer, and we’re trying to identify new ways to do that. Some of our clinical trials are focused on trying to make the radiation, or the chemotherapy and the radiation, a bit more precise, and focused on the specific tumor. And some are focused on identifying what the best treatment would be for one particular person’s tumor, because we know that actually it’s many different diseases.  

And so, we want to really figure out what the optimized treatment is for giving patients that increases survival while reducing treatment-related toxicity. Again, that’s really the overarching goal of what we’re trying to achieve with clinical trials for head and neck cancer.  

Katherine:

Yeah. What about emerging approaches for treating head and neck cancer? Is there research going on that patients should know about?  

Dr. Rosenberg:

Yeah, definitely. So, many new drugs are being developed for head and neck cancer with many different treatment strategies. I would say given the success of immune therapy recently for head and neck cancer, and other cancer types as well, many are trying to build on that, and identify better immune therapies that work better against cancer therapies. Some are targeted therapies, so developing new drugs that maybe target a specific mutation, or a specific change in a particular patient’s tumor that would be appropriate. 

And the other thing that is being developed is strategies that incorporate, for example, blood tests that can sometimes measure tumor DNA in blood in a non-invasive fashion that can reveal all sorts of specific information about that particular patient’s tumor, how they’re responding to therapy, and can hopefully help optimize and personalize therapy. So those are some of the more emerging approaches that are being developed in clinical trials for head and neck cancer. 

Practical Questions About Breast Cancer Treatment Patients Should Ask

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Practical Questions About Breast Cancer Treatment Patients Should Ask from Patient Empowerment Network on Vimeo.

Breast cancer patients and healthcare providers can be partners in care, but what’s important to discuss? Expert Dr. Demetria Smith-Graziani explains information that she presents to patients and shares common questions that patients ask.

Demetria Smith-Graziani, MD, MPH is an Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Learn more about Dr. Smith-Graziani.

[ACT]IVATION TIP

“…ask why a particular treatment is recommended, what the evidence is behind it, ask about the potential side effects and then ask about how the different treatment options compare if you’re given multiple options.”

Download Guide  |   Descargar Guía en Español

See More from [ACT]IVATED Breast Cancer

Related Resources:

Eliminating Disparities in Breast Cancer | Tips for Navigating Inequities
 
How Does Hormone Therapy Impact Breast Cancer Treatment?
 

Transcript:

Lisa Hatfield:

How do you work with your patients to make treatment decisions? With increasing treatment options, what should breast cancer patients consider when deciding on treatments?

Dr. Demetria Smith-Graziani:

So it’s important that patients are really informed about all of their options, so what I tend to do is review the details of diagnosis and staging, and then after we review that  I provide recommendations based on the national guidelines, and then I also provide recommendations for potential clinical trials that are available at our institution that may be a good fit for the patient, and then we discuss the potential risks and benefits of each option as well as how long each treatment will last and how it might affect their daily lives. 

I think that sometimes patients don’t always know what questions to ask, so I tend to suggest questions that I’ve heard in the past from other patients, and I think a lot of what patients want to know in addition to potential side effects are how long is my treatment meaning how long am I going to have to stay in the infusion center if I’m getting an IV medication? Or how many months of treatment do I need to get?

And then how much time do I need to take off of work? Am I going to be able to work while getting my treatment, so it’s those little things which aren’t so little that are important to discuss, so that the patients can get the best overall picture about how each treatment will affect them in the short and the long term, so my activation tip for patients is ask why a particular treatment is recommended, what the evidence is behind it, ask about the potential side effects and then ask about how the different treatment options compare if you’re given multiple options.

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What Questions Should Breast Cancer Patients Ask About Their Treatment Options?

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What Questions Should Breast Cancer Patients Ask About Their Treatment
Options? from Patient Empowerment Network on Vimeo.

What do breast cancer patients need to know about treatment options? Expert Dr. Bhuvaneswari Ramaswamy shares key questions that patients should ask their team about potential treatment approaches.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

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Transcript:

Katherine:

What questions should patients ask about their treatment options?

Dr. Waks:

I think the most important thing is to understand what you have first. So, kind of the doctor will talk to you about what type, histological type of breast cancer you have. They’ll also talk to you about what  biomarkers you have. And they will also talk to you  about the treatment options, which could be   chemotherapy versus target therapies, and what are the outcomes from those using clinical trials. So, I think the questions that you have to ask them is that,  what do you feel like you would is right for your body, right? That’s important. That what you have some of the preconceived notions that we all carry. That bias and preconceived notions is just a normal natural way of learning. And so ask about those fears, ask about those hopes that you have. And if your hope is, “Hey, can I do as well without chemotherapy?” Ask that question. So, and it’s important to understand the side effects and the outcomes of each therapy.

It may also be important for you if you do – you really don’t want to have treatments to understand if   you don’t get treatment, what are your outcome changes? So, those are, I think, the important thing. And then what that does mean to you? What do you want out of your life? Longevity, quality of life? How long will your quality of life be affected? And how does that impact your understanding of what you want out of your life? I think those are important for you to ask and make sure you have a friend or a relative with you so that not everything is going to go in at the first or the second visit, so you have someone else who’s taking notes.

How Is Early Stage Prostate Cancer Treated?

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How Is Early Stage Prostate Cancer Treated? from Patient Empowerment Network on Vimeo.

For early stage prostate cancer, what are the current treatment approaches? Expert Dr. Tanya Dorff explains common treatments and reviews factors that impact a patient’s options.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.

 

Related Resources:

What Does Active Surveillance Mean for Prostate Cancer

 Thriving With Prostate Cancer: What You Should Know About Care and Treatment

 What Questions Should Prostate Cancer Patients Ask About Clinical Trials

Transcript:

Katherine:

When it is time to start treatment, what types of approaches are available for early stage prostate cancer patients? 

Dr. Dorff:

Localized prostate cancer or early stage prostate cancer can be cured with either surgery or radiation, and we actually view these to be equally effective options. Sometimes people have the misconception that if they’re getting radiation to treat their localized prostate cancer, they’re being relegated to a noncurative or a less effective option. It’s actually not the case. We don’t have truly good, randomized, head-to-head studies. 

You can find retrospective studies, people looking back at 2,000 patients treated at this institution or that institution, and you can find a study that pretty much says whatever you want it to. You can find some that say surgery’s better, some that say radiation’s better, but in sum, we sort of view them as being equally effective options. And so, they just have different side effect profiles, and so, we often counsel patients who are considering which local treatment to receive to look at what their current urinary function is, what their goals are for their long-term function, both urinary and sexual, and use that as a guide, as well as their age, their other health conditions, and those kinds of factors. 

Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

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Advice for Managing Lung Cancer Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel explains common symptoms and treatment side effects, and discusses how treatment approaches may vary depending on treatment goals for each patient.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

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Tips for Managing Lung Cancer Anxiety and Worry

 Personalized Medicine: Making Lung Cancer Treatment Decisions

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Transcript:

Katherine:

Symptoms and side effects can sometimes be a burden to patients undergoing treatment. What are the most common issues that patients face? 

Dr. Patel:

So, common symptoms from treatment can include fatigue, lack of appetite, disinterest in the things that made you really excited before. Infrequently now we have severe nausea, because we have such good antinausea medications.  

Sometimes we’ll have problems with blood counts or risks of infection. All of these vary by the treatment that’s rendered. And so, often it may be that you’re on a targeted therapy.  

Some targeted therapies, for example, can cause swelling in your legs. Immunotherapies are generally well-tolerated but can cause significant side effects in a small minority of people that could include inflammation in the gut, for example.  

So, everything is sort of tailored, I would say. Most frequently, I hear about the fatigue, and then the ongoing stressors of living with cancer. So, the financial toxicity certainly. These drugs are expensive. But not only that, often people have changed the way they work. Their family members have changed how they work to support their loved one. So, bringing people to appointments.  

There’s a lot on someone’s plate. And that can contribute to fatigue and even some anxiety.  

Katherine:

Yeah. What strategies are in place to manage symptoms and side effects? 

Dr. Patel:

So, having a patient who’s knowledgeable about potential side effects and a good advocate for themselves is probably the best way to manage therapy. So, ongoing dialogue with your clinical team, with your nurse, with your physician, are absolutely important. But most of us work with teams of healthcare workers. And so, when I think about our clinic, we have financial counselors, we have social workers, we have dieticians and nutritionists, we work with physical therapists. And importantly, we work with a palliative care team that helps us, again, manage some of the toxicities of therapy.  

We think that they provide a longitudinal assessment of patients and remember what’s most important to a patient over time. Whereas often in the moment there’s this, we want to make the tumor shrink. We think about what we can do immediately. It’s often really helpful to have another team that can provide support over the patient’s journey to help us, again, prioritize what they wanted to do the most.  

Katherine:

Mm-hmm. Dr. Patel, why do you think it’s necessary for patients to tell their doctor about any issues they may be having? Even the little ones.  

Dr. Patel:

I think most of us want to be good patients. And so, we minimize things because we think that, okay, we’re using precious time to talk about things that may seem minor. But, again, all of these add up.  

Even minor symptoms, particularly in the era of immunotherapy, can turn out to be big problems. So, as I say now to my patients particularly on immunotherapy, if something seems a little bit off and you can’t put your finger on it, I just need to know so I can at least do the appropriate workup to make sure that we’re not missing anything. Because symptoms of underlying problems can be very misleading.  

Moreover, I think the cumulative burden of cancer. So, again, we talked a little bit about the financial toxicity, the emotional cost, the time involved in treatment, all of that adds up. And you never want to get it to a breaking point. We want to manage it early on, so we can, again, make decisions together and keep wellness and the quality of survival at the forefront.  

The Benefits of Being Pro-Active in Your AML Care

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The Benefits of Being Pro-Active in Your AML Care from Patient Empowerment Network on Vimeo.

Dr. Eytan Stein, an AML expert, discusses the importance of communicating regularly with your healthcare team and shares what makes him hopeful about the future of AML care.

Dr. Eytan Stein is a hematologist oncologist at Memorial Sloan Kettering Cancer Center and serves as Director of the Program for Drug Development in Leukemia in Division of Hematologic Malignancies. Learn more about Dr. Stein, here.

See More from Thrive AML

Related Resources:

Considerations When Choosing an AML Treatment

Tips for Thriving With AML | Setting Treatment Goals

 What Are Current and Emerging AML Treatment Approaches?

Transcript:

Katherine Banwell:

Why is it essential for patients to share any issues they may be having with their healthcare team, specifically, sharing their symptoms and side effects?   

Dr. Eytan Stein:

Well, it’s important because we want to help you. I mean, I think that’s what it comes down to. All of us, whether it’s your doctor or your nurses or your nurse practitioner or physician’s assistant or anyone who is part of the healthcare system, we went into this business to help people. I mean, we knew what we were getting into when we went into this, and we want to help people. And one of the ways you help people is you help with their symptoms. So, if you’re not feeling well, you call up, and you say, “I’m not feeling well,” we can help you with that. You shouldn’t suffer in silence.  

I sometimes have patients who will say to me, “Oh, I was going to call you, but I didn’t want to bother you.” You’re not bothering us. This is what – it’s not like you’re calling and asking for mortgage advice, right? This is what we do. So, it’s very important to call us because the other thing is that you’re going to be more – it’s more likely that you’ll be able to complete your treatment if we manage the side effects that you’re having rather than just ignoring them.  

Katherine Banwell:

What advice do you have for patients to help them feel confident in speaking up and becoming a partner in their own care? 

Dr. Eytan Stein:

My advice is, speak up. You just speak up. It’s very important. It’s your – you know, at the end of the day, this is a disease that you are experiencing. Your doctor is there to partner with you and to guide you, but it’s your body. It’s your disease, and you need to be very vocal in what you’re experiencing and advocate for yourself.  

Katherine Banwell:

If a patient has difficulty voicing their questions or concerns, are there members of the support staff who could help?  

Dr. Eytan Stein:

Most centers have a social worker on staff that can help them out. I highly, highly encourage all of my patients to meet with a therapist or a psychologist that specializes in taking care of patients with cancer. I have become more vocal about this that I see really, it’s probably the best thing a patient can do for themselves, and there’s no downside. If you don’t like it, you don’t have to go back. You can do one appointment and not go back. But that can be extremely helpful, extremely helpful.  

So, it’s important in both ways. You need to alert your doctor that you might be feeling one way, but I think it’s also on the doctor to sort of take visual cues from the patient when they see them to understand what they might need and to make those kind of recommendations.  

Katherine Banwell:

Yeah. As we close out our conversation, Dr. Stein, I wanted to get your take on the future of AML. What makes you hopeful?  

Dr. Eytan Stein:

Oh, so many things make me hopeful. I mean, we understand this disease so much more than we understood it even 10 years ago. There are all sorts of new treatments that are being developed. We’re improving the survival of our patients with the new treatments that have already been approved over the past 10 years. And I really think the golden age of AML treatment is upon us, and I really think that – and some people might think I’m crazy – but I really think that by the time I’m done with this, you know, one day, I’ll get too old, and I’ll decide I need to go retire and spend time with my family. But I think by that time, we’re going to be curing the vast majority of our patients. 

Katherine Banwell:

That’s so positive. It’s great to hear that there’s been so much advancement and that there’s so much hope out there for AML patients.  

I want to thank you so much for taking the time to join us today, Dr. Stein.  

Dr. Eytan Stein:

Okay, thank you. It was really nice to be here.   

How Treatment Side Effects Impact Mental Health and Decision-Making

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Cancer is a long, hard road that no one wants to travel down. When it strikes you, though, being strong is no longer an option, but a necessity. You are probably prepared for the physical impacts of this life changing diagnosis, such as chemotherapy, radiation, and surgery.

What you might not expect, though, are the impacts that your treatment can have on your mental health and decision-making.

Depression and Anxiety

If you are going through chemo, you probably braced yourself for the nausea and fatigue that you knew would accompany your treatment. Once you were in the midst of it, however, you may have found that the mental and emotional impacts of chemo treatments are as great as the physical ones, if not greater.

It’s not difficult to understand why. The treatments themselves are inherently stressful, but what you may find even more distressing is how the treatments disrupt your daily life. These disruptions often occur not only on infusion day, but also on the days leading up to and following treatment.

In other words, you might quickly begin to feel as if your entire life is revolving around your chemotherapy, whether you are preparing for your infusion or recovering from it. You may mourn the loss of your daily routine. Your fatigue may interfere with your ability to work, take care of your home, or simply do the things you enjoy. All this can contribute to feelings of anxiety and depression.

The good news, however, is that there are things you can do to manage your emotions and nurture your mental health, even in this challenging time. This begins, above all, with giving yourself permission to feel what you need to feel, to grieve when you need to grieve, or to be angry when you need to be angry.

At the same time, getting stuck in these dark emotions isn’t good for your physical or mental health. That’s why it’s essential to track how you are feeling and to know when and how to seek help when you need it.

Daily journaling can help you process your emotions, while leaning on your support group can provide the comfort and the perspective you need to move through them.

Expecting the Unexpected

One of the most challenging aspects of the cancer journey from a mental health perspective is how unpredictable it can be. It’s difficult to prepare for a challenge, after all, if you don’t know what’s coming.

For example, vision problems are a common but often unexpected side effect of cancer treatment. Many patients experience dry eyes, eye pain, and blurriness as a result of their treatment. This can further increase emotional distress not only because such visual impacts can compromise your daily functioning but also because vision and mental health, research is increasingly showing, are deeply interconnected. Indeed, the brain’s visual processing centers lie primarily in its deepest structures, many of which are also responsible for emotion and mood.

Treatment and Decision-Making

When you are in the fight of your life, and you are truly feeling all the physical and emotional impacts of that fight, it’s not only your mental health that may be undermined; you may find it difficult to make rational decisions. When you are worried, fatigued, and sick, your brain simply cannot process information as efficiently or well.

You might find yourself, for instance, making rash and unwise decisions, or you may find yourself unable to make any decision at all. This is why it is important to surround yourself both with friends and family and with healthcare providers you trust.

Such a support network can help guide you through choices that you may be unable to make on your own when the treatment side effects have sapped your energy, stolen your focus, and deflated your mood.

Indeed, because your support network is so important when you’re undergoing treatment, you may find yourself needing to make some major decisions even before your treatment journey begins. For example, if you live in an isolated, rural area, you may determine that it is best for your physical and mental health to relocate, at least temporarily, to the city.

Living in the city can ensure that you have consistent and easy access to your entire healthcare team, including mental healthcare providers. Not only can this make treatment easier when you’re feeling especially tired or unwell, but such proximity to your trusted team can enable you to feel more confident and comfortable with your care, mitigating some of the stress you feel and enhancing your ability to make sound decisions.

The Takeaway

The cancer journey is a scary one, but it does not have to lead to despair. The key is learning how the journey, including your treatment, can impact your mental health and your decision-making. Armed with such knowledge, you can take the steps you need to nurture your mental and emotional well-being even as you fight to recover your physical health.

Which Factors Impact DLBCL Treatment Decisions?

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Which Factors Impact DLBCL Treatment Decisions? from Patient Empowerment Network on Vimeo.

When making a decision about diffuse large B-cell lymphoma (DLBCL) treatment, what should you consider? Dr. Justin Kline reviews key patient factors that impact therapy decisions, including comorbidities and treatment side effects.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

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Transcript:

Katherine:      

Other than a newly diagnosed patient’s stage of DLBCL and their age, what other factors would impact a treatment decision?

Dr. Kline:       

Yeah. So, that’s a good question, so you named I think the biggest two, the most important two. Although I have to say that even people in their – oftentimes in their 80s are prescribed full dose therapy. The goal of our treatment, especially in newly diagnosed patients, is to cure the lymphoma, and so we tend to be aggressive. But outside of age, other things we consider are other health problems. Does the person have a healthy heart, healthy kidneys? How many other medical problems does the person have? How fit is the person? How sick is the person or symptomatic is the person from his or her lymphoma? And sometimes we take into consideration all those factors and we say, well, it’s still worth it to try to deliver the most intensive therapy that we can.

Other times we say, you know what? I think the risk of doing such is probably not worth the potential benefit, and so sometimes we’ll recommend dose reductions, reduce the doses of some of the medicines and the R-CHOP cocktail if that’s what we’re going to do, and occasionally, if the person has too many other things going on, we may talk about more palliative treatments, in other words, gentler treatments that may extend a person’s survival while hopefully maintaining a really good quality of life.

Katherine:                 

Yeah. What kind of side effects should patients expect?

Dr. Kline:       

Well, that’s a conversation I’ve had many, many, many times over the years. And specifically to the R-CHOP cocktail, just because that’s the one that’s used most commonly, I tell people that the most common things are symptoms like fatigue, occasionally nausea, sometimes vomiting, although the medications we have to prevent those things are very good these days.

Constipation is not uncommon, hair loss, mouth sores. I think probably the most important thing is to recognize that the chemotherapy will suppress or reduce the immune system, and so we’re always worried about people catching infections when they’re on chemotherapy, because sometimes they can be serious. And then I talk about rare symptoms that are a big deal. Sometimes the chemotherapy can damage organs like the heart. It’s uncommon, but it happens sometimes. And chemotherapy, while we need to give it to cure the lymphoma, can sometimes cause secondary blood cancers like leukemias years down the road. The risk is low, but again, these are I think serious things that people, even if they’re rare, people need to know about them before they start.

Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts.

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Are Clinical Trials Too Risky? A Lung Cancer Expert Reviews the Facts. from Patient Empowerment Network on Vimeo.

Some patients fear that clinical trials may be too experimental and risky. Dr. Martin Edelman outlines the clinical trial process and addresses myths surrounding trials. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Here’s the last one that I have on my list here. Clinical trials are experimental and risky.

Dr. Edelman:

Yeah. Well, so is the rest of life. So, there generally – is there risk? Yes. Essentially, every patient is always a trial because we for the most part don’t – even in the disease states where we have very active treatment – so, let’s say – for example, we were talking about the EGFR mutation. So, we have excellent drugs. We have a drug now, osimertinib – outstanding drug, easy to take, low risk of side effects.

The earlier generations – there was a lot of rash, diarrhea. That’s been pretty much done away with. But on average, patients benefit from this drug for about a year and a half.

So, that’s not great if you’re 40 or 50 years old. You want to do better. So, what are our current studies? Well, we’re looking – we’re re-addressing a question that we thought had been answered, but really it wasn’t – about, well, what’s the value of chemotherapy plus this drug? What about the value of other drugs?

So, we can’t promise anybody anything, but our current treatments are still not good enough. There are certain diseases, let’s say Hodgkin’s disease, where you know you’re gonna cure almost all the patients up front or testicular cancer, etcetera, where – again, but thanks to trials, clinical trials, we now are at that stage. We’re not there yet in lung cancer, and the reality is is every patient should really be on a study. I think it’s – and we have this problem now in that our studies have also become far more complicated to enter people in because there are many more variables one has to look at it. What’s the molecular background of the tumor? How many prior therapies?

The condition of the patient, their organ function, etcetera – and the regulatory burden has become much, much greater. But clinical patients are in clinical trials. Let’s look at the question. Are they risky? Well, everything is risky, but we do a lot to manage that risk. Patients who are in studies are observed more closely. We have to. It’s the law. There’s frequently additional personnel assigned. They’re usually getting standard of care plus a new treatment or a new treatment followed by the standard of care or some variation of that.

They’re observed, like I said, much more carefully than we would otherwise. And so, I think actually patients on trials generally will do better, and we actually have evidence. Multiple individuals have looked at this – everything from first-in-man trials or early dose escalation studies, controlled studies – that show that patients, even those on the control arm, generally do better than similar types of patients who are not treated on studies because we just are more careful.

And the physician who participates in trials is generally someone who has a greater knowledge of the disease.

The Truth About Managing Lung Cancer Treatment Side Effects

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The Truth About Managing Lung Cancer Treatment Side Effects from Patient Empowerment Network on Vimeo.

Are lung cancer treatment side effects avoidable? Dr. Martin Edelman reviews effective management strategies. Want to learn more? Download the Program Resource Guide here.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

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Transcript:

Patricia:

Let’s talk a little bit about some of the concerns that patients have about the side effects. Let’s see: Side effects are unavoidable.

Dr. Edelman:

Well, that’s not true. As I said, what were the side effects? If you go back a couple decades and you ask patients what were they concerned about, many of them were concerned about nausea and vomiting. And that is largely a thing of the past. Many patients will still have some queasiness with treatment, but even our most nausea-producing drugs – we really do have outstanding drugs for the prevention of that. You have to use them. You have to take them.

It’s very important to give them appropriately. There are very excellent guidelines that are out there. Sometimes, patients are still undertreated, no question about that. Not every drug has industry strong backing. There’s one drug – for example, olanzapine, (Zyprexa) was actually developed as an antipsychotic, and I always tell the patients, “No, I don’t think you’re crazy.”

But it’s at a lower dose, and we have excellent, excellent evidence that that drug given for a few evenings after chemotherapy is extraordinarily effective along with the other drugs in preventing nausea and vomiting. So, that’s one thing.

Hair loss is still somewhat inevitable with certain drugs – the taxanes. But many of our regimens don’t cause hair loss.

Or as I tell folks – only you and your hairdresser will know for sure because its hair on the pillow, but the average person won’t pick you out of a crowd. Those are big concerns still. There still are potentially life-threatening effects from chemotherapy, and we spend a lot of time educating people about that. But those are not inevitable, and it’s actually a minority of patients in lung cancer.

One should not confuse – there are different malignancies. Still, the treatments for say leukemia, though even that’s changing, can be extraordinarily toxic or the bone marrow transplant patients. Many, not just lung cancer, but in the other diseases as well – many of the things that people attribute to the drugs are more due to the disease. So, I always say, “The greatest failure and side effects to the drugs are they don’t work well enough because the side effects of the disease can be considerable.” So, that’s the bigger issue. The immunotherapeutic drugs have a rather interesting set of side effects.

They are clearly initially or frequently better tolerated than the older cytotoxics, which still have an extremely valuable place in the treatment and cure of lung cancer. The immunotherapeutics have clearly been quite beneficial, but their side effects can be subtle and far less predictable and can be very severe. Virtually, any organ in the body can be affected by this. We like to say, “If it ends in ‘itis,’ you can get it from immunotherapeutics.”

So, there are lots of side effects, no question. But they can be managed. They can be prevented. They can be treated. Sometimes, we have to abandon a drug. So, people who get severe – what we call immunotherapy-related adverse events – may not be able to continue on their drugs. But even that is not necessarily always the case.

Patricia:

This next one really gets to the heart of the doctor-patient relationship. I shouldn’t share my side effects with my healthcare team because I don’t want them to stop my treatment routine.

Dr. Edelman:

Well, you can’t prevent the side effects if you don’t know about them. And I always would tell patients, I said, “You know, if you’re having a problem, please don’t call me at 4:00 on Friday afternoon. I’m gonna end up sending you to the emergency room, which I may anyway.” But a lot of times, we can solve certain things over the phone. There are a lot of side effects that can be treated and particularly if one is aware early on. So, yeah, you should share the side effects because how’s somebody gonna know how to deal with them?

Now, the problem we run into sometimes is in a population that’s on average 60s and 70s, could be younger. There’re lots of things that can be just part of ordinary life. Everybody gets headaches, back pain, etcetera, etcetera.

We have to treat those sometimes and evaluate them much more aggressively because of the possibility of them being related to disease or drug, but it helps to sort it out. You can’t be too blasé about it because sometimes things need to be looked at very urgently, particularly with immunotherapeutic drugs. Some of the side effects that can be severe can sometimes be very subtle in their onset.