Tag Archive for: symptoms

Dr. Radhika Gogoi: Why Is It Important for You to Empower Patients?

/in , /by

Dr. Radhika Gogoi: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Dr. Radhika Gogoi of Karmanos Cancer Institute underscores the critical role of educating patients about their treatment options, symptoms, and management strategies. She asserts that informed patients can ask more pertinent questions and make well-informed decisions regarding their care.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Christina Baik

 Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

 Dr. Andrew Hantel: Why Is It Important for You to Empower Patients

Dr. Andrew Hantel: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Radhika Gogoi:

So I consider it really a privilege to care for my patients, as do all my colleagues I’m certain. And I think that one of those privileges is the opportunity to empower our patients, and that really comes through education. I really believe strongly that educating our patients about options, about symptoms, about management really allows them a chance to sort of ask better questions of me, of my team, whether that’s the radiation oncologist or medical oncologist, so that they can really formulate the treatment decision that’s best for them.

And I think that empowering them to be comfortable asking those questions and be comfortable questioning my answers, I think allows a better relationship. This is a long-term relationship. I always tell my patients we’re friends for life, and I hope a very caring and nurturing one as well. So it really is through education. I think that patients are empowered to make decisions for themselves that work for them and their families.

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis

/in , , , , , /by

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis from Patient Empowerment Network on Vimeo.

Meet Paloma, a 58-year-old acute myeloid leukemia (AML) survivor. After experiencing breathlessness, sore gums, and other symptoms that were initially misdiagnosed, she trusted her instincts and sought further medical support, leading to her AML diagnosis. Discover Paloma’s journey and the vital importance of being proactive and staying [ACT]IVATED in your cancer care.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

 How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

 Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 

Transcript:

Being ACTIVATED in your cancer care is critical and also a continuous journey.  My name is Paloma, and I’m eager to share my journey as an acute myeloid leukemia patient in the hopes that it will help other patients and families. AML doesn’t discriminate; it can affect anyone, regardless of lifestyle or healthy eating habits.

I was 58 when I was diagnosed with AML, and my diagnosis was pretty shocking to me. I learned that you really need to trust your instincts when it comes to your health. I felt like something was off with my body, but my initial symptoms were only some breathlessness upon exertion and sore gums. But then additional symptoms started including a dry cough, some flu-like symptoms, and lumps under my armpits. I saw my primary care provider, and she prescribed antibiotics and sent me for a chest x-ray that came back without issues. 

When my breathlessness worsened along with profound fatigue, my doctor then sent me to get an ECG and additional blood tests to help determine what might be wrong. While I was waiting for my test results, my co-workers noticed that I looked thinner with my skin also being paler than usual. This was just the beginning of my AML journey. My blood tests came back with abnormal hemoglobin and blast levels, and my doctor arranged for me to be admitted to a well-regarded cancer center. I was fortunate that it was only 20 miles away but realize that not all cancer patients are this fortunate.

After seeing my AML specialist at the cancer center, he wanted to start my chemotherapy right away to fight the cancer. I was fortunate that I didn’t have issues with my intravenous line for receiving my chemotherapy. But I learned that this can be a common issue for AML patients after I joined an online AML support group. I had my first round of chemotherapy, and my daughter was able to visit me during this time. However, my care team kept monitoring my neutrophils and decided that I needed to start a second round of chemotherapy. It was now during the COVID-19 pandemic, and hospital visitors weren’t allowed.

I counted myself as fortunate that I could still continue with receiving chemotherapy. What would have happened if I’d gotten seriously ill during the early pandemic? I shudder to think that things likely would not have been easy. The hospital staff helped to keep my spirits up and also with setting up a tablet for me to do video calls with my family and friends while I was in the hospital.

Though that round of chemotherapy put me into remission for a period of time, I later came up as MRD-positive and received a targeted chemotherapy as a third round of therapy followed by a stem cell transplant. I had some graft-versus-host disease issues but got through them. I feel fortunate that there are some different treatment options for AML and would like to participate in a clinical trial to help advance treatments if I need another option on my journey. I’ve kept in touch with other patients in my AML support group during my journey from diagnosis, treatments, and recovery. I know that I couldn’t have gotten through my physical and mental challenges without them.

Though AML sounded scary at first, the future of treatment looks bright to me with emerging research and treatment options. I hope that sharing my story will make a difference for other AML patients and especially those who may come up against barriers. 

No matter who you are, being proactive is a critical step in your AML journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

Share Your Feedback About [ACT]IVATED AML

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions

/in , , , , , , , , , /by

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions from Patient Empowerment Network on Vimeo.

This animated video defines common myeloma treatment goals, provides an overview of available myeloma therapies, and includes advice for making care decisions and the importance of being your own advocate.

See More from Collaborate Myeloma

Related Resources:

Collaborate | Being an Empowered Myeloma Patient

 Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care

 The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Bianca: 

Hi! I’m Bianca, a nurse specializing in myeloma. In this video, we’ll discuss myeloma therapy and explain how to work with your healthcare team so that you can choose a care plan best suited for YOUR myeloma. 

I’d also like to introduce you to Suzanne. Suzanne is a patient advocate living with myeloma.  

Suzanne: 

Thanks, Bianca. I’m happy to share my own experience and to talk about how I worked with my healthcare team to decide on a care plan. 

When my doctor and I were first considering my options, we started by setting treatment goals. Bianca, can you define treatment goals?  

Bianca: 

Sure! Each patient is unique, so it may vary by person. You should collaborate WITH your healthcare team to determine YOUR treatment goals. Common goals of myeloma treatment may include: 

  • Reducing and managing your symptoms. 
  • Slowing the progression of the disease. 
  • Inducing remission. 
  • And, helping you live longer while maintaining quality of life.

Suzanne: 

Thanks for explaining this. When I discussed treatment goals with my doctor, I pointed out that I still wanted to be able to play pickleball with my friends, and to care for my young grandchildren. We reviewed options that could allow me to stay as active as possible and manage my myeloma at the same time. 

Bianca: 

That’s a great point, Suzanne. It’s also important to remember that your treatment goals can change throughout the course of your myeloma. Discuss them regularly, not just with your care team but also your care partner – that can be a family member or even a close friend. 

Suzanne: 

That’s right. I discussed my care with my husband AND my adult children – it’s important to keep your support team in the loop.  

And it’s also essential to understand the treatment options available to you. Bianca, what are the types of therapy available to treat myeloma? 

Bianca: 

There are a number of different classes of therapy, which include: 

  • Proteasome inhibitors; 
  • Immunomodulatory therapies or IMiDs; 
  • Monoclonal antibodies; 
  • Stem cell transplants; 
  • There are also the new and recently approved therapies such as bispecific antibodies and CAR (Chimeric Antigen Receptor) T-cell therapy; 
  • And, of course, clinical trials.   

Clinical trials can be a good option for patients at any stage of disease, often giving patients early access to a viable and cutting-edge therapy. When considering treatment, you should ask your doctor if there is a clinical trial that may be right for you.  

Suzanne: 

Good point! When I was deciding on a therapy, my doctor and I, along with my husband, discussed the risks and benefits of each approach as well as the potential outcome of each option. My doctor also walked through the clinical trials that were available to me. 

Bianca, given all of the options, how do you decide which therapy is appropriate for a particular patient? 

Bianca: 

That’s a great question. As mentioned in our previous video, results of in-depth testing, which determine if a patient has low-risk or high-risk myeloma, can affect your choices. Other factors that impact treatment decisions may include: 

  • Your age, overall health, and any pre-existing conditions. 
  • Potential side effects of the treatment. 
  • Previous therapies that may have been used to treat your myeloma. 
  • The financial impact of a treatment plan. 
  • And the patient’s lifestyle and preference.  

Suzanne: 

That’s right. And, you shouldn’t hesitate to weigh in on what YOUR preference is. Do your own research so you understand each treatment approach, then work WITH your healthcare team to determine what might be best for you.  

Bianca: 

That’s excellent advice, Suzanne. So, when making treatment decisions, you should: 

  • Work with your healthcare team to understand your treatment goals. 
  • Talk with your doctor about all available treatment options. 
  • And, inquire about any clinical trials that may be right for you. 
  • Then, discuss the pros and cons of each option. 
  • Bring a care partner with you to appointments and take time post-visit to discuss the proposed plan and treatment options. 
  • And, always remember that you have a voice in your care. Speak up and ask questions. You are your own best advocate. 

Suzanne: 

Great advice, Bianca. Don’t forget to visit powerfulpatients.org/myeloma to learn more. Thank you for joining us!  

Empowered by Biomarker Testing: Amber’s Journey with Stage IV NSCLC

/in , , , , , , , /by

Empowered by Biomarker Testing: Amber’s Journey with Stage IV NSCLC from Patient Empowerment Network on Vimeo.

Amber, a 56-year-old living with stage IV non-small cell lung cancer (NSCLC), shares her journey of empowerment through biomarker testing and targeted therapy. From recognizing symptoms and proactive healthcare to managing her condition with the latest treatments, Amber’s story emphasizes the importance of personalized care and staying informed. Her advocacy for biomarker testing and clinical trials aims to inspire others facing similar challenges to take an activated approach in their lung cancer care.

Download Resource Guide  |  Descargar guía de recursos

See More from [ACT]IVATED NSCLC Biomarkers

Related Resources:

Checklist

[ACT]IVATED NSCLC Biomarkers Toolkit Checklist

 How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities?How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?

Transcript:

Embracing an activated approach to non-small cell lung cancer (NSCLC) care is indispensable for every patient. My name is Amber, I am 56 years old and living with non-small cell lung cancer. Recognizing the importance of proactive healthcare and being in good physical condition, I sought medical attention upon experiencing troubling symptoms. 

I was 54 when I started experiencing symptoms of coughing, wheezing, and decreased stamina. I worked as a nurse practitioner and knew lung cancer can happen to anyone with lungs. After getting a CT scan, they discovered a spot on my lung and swollen lymph nodes in my chest. A PET scan and brain scan came next to help determine my diagnosis.

I was shocked to learn I had stage IV lung cancer that spread. My oncologist knew about the latest in biomarker testing and immediately scheduled it, which determined I was EGFR-positive. Even though that sounded frightening, I learned there was targeted therapy that worked well for EGFR-positive patients.  

I’ve been on this EGFR blocker since my diagnosis. My tumor is no longer visible, and my lesions have decreased considerably. I’m monitored regularly and stay active hiking and spending time with my family. I’m so thankful biomarker testing enabled my care team to prescribe targeted therapy. It’s a huge advancement in lung cancer care. And if you’re a former smoker and are unsure when to start lung cancer screening, ask your doctor. Even if you smoked many years ago, you should continue to receive lung scans. 

I hope that sharing my story will help other patients understand the importance of biomarker testing. 

Here are my activation tips:

  1. Ask your care team questions to learn about biomarker testing, treatment options, and what to expect during and after treatment.
  2. Don’t allow stigmas to keep you from getting the best personalized lung cancer care.
  3. Ask if a clinical trial may be a potential treatment option for your type of lung cancer.

Remember, no matter who you are and what kind of health history you have, being proactive is everything. Stay activated by being informed, empowered, and engaged in your lung cancer care.

Share Your Feedback

Create your own user feedback survey

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

/in , , , , , , , /by

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan from Patient Empowerment Network on Vimeo.

How can newly diagnosed myeloma patients be proactive in their care? Dr. Krina Patel shares key advice for patients, including the importance of making notes before office visits and the role that a care partner can play in overall support. 

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Krina Patel.

Related Resources:

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

 Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

 Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care?

Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care? 

Transcript:

Katherine:

For newly diagnosed patients, what key advice would you share with them? And are there specific questions they should be asking their doctor about their care plan? 

Dr. Krina Patel:

Yeah. So, I know it’s hardest for newly diagnosed patients. Most people have not even heard what multiple myeloma is. They’re learning how to spell it correctly and making sure it’s not melanoma. And this is a conversation I have with so many of my new patients that I think it’s really hard your visit, and maybe even your second visit, to ask all the right questions. So, really, coming home and every time you’re on a treatment or you’re talking about a treatment and you have a question, write it down because I know it’s really hard when we’re only there for 15, 30 minutes to talk to you.  

For us, we have MyChart, so my patients will send questions as they think of them through that. And I think that’s really important. Sometimes it’s hard to know what questions to ask when you have no idea what’s about to happen, and that’s okay. But I think as you’re going through therapy, really making sure that you ask about alternative therapies that might be available and why someone is picking one versus the other, making sure you know what supportive medications you really need.

And I will say that, with myeloma, a lot of our treatments are patient-friendly but they do cause side effects and infections, so, we have a lot of supportive medications we use; so, again, anti-shingles, potentially if you could get a blood clot, we have you on some type of blood thinner.  

We have people on against steroids because of all of our initial therapies have steroids. We wanna make sure you don’t get ulcers in your stomach, so we have patients on proton pump inhibitors. There’s a lot of things we do to again decrease that toxicity. So, that’s important.  

And then, I think the next part is when you’re on treatment, whatever symptoms you’re having keep a log of that. Some things are, okay, maybe it’s just a little bit here and there, that you’re feeling fatigued but then you’re better. But there are certain things that cause a lot of side effects that my patients sometimes don’t tell me about. So, the steroids can cause major insomnia for some of my patients where they don’t sleep for three days, and that’s not okay. We can decrease those.

So, there are ways to manipulate the treatments as we’re going through to make sure that not only are you having a great response but that you’re not having major side effects that are actually gonna hurt your health down the road. So, really important to discuss those things that you’re having as you’re going through.  

Katherine:

There’s also the importance of a care partner in your life –  

Dr. Krina Patel:

Yes. 

Katherine:

– right?  

Dr. Krina Patel:

I agree. So, I joke with my patients but it’s real; there’s actually a study that shows that men with three and a half women in their lives do much better in healthcare in general than those who don’t. So, I’m like “Go get more women in your life” – 

Katherine:

I love that.  

Dr. Krina Patel:

– or just caregivers in general.  

Men are great caregivers too, but really having someone there that can listen for you and write down those things because it is overwhelming. And when you’re on treatment there are a lot of times when you just can’t pay attention. You can’t focus. You can’t listen to everything. And so, the more people that are there, they’ll pick up other things.

So, a lot my patients will even have their loved ones on their phone with them, even if they can’t be there in person so that they can record. And a lot of my patients will record things and they’ll ask me; so, definitely as whoever you’re talking to if it’s okay to record. But most of us will say “Yes, it’s completely fine” so that you can listen to it again when you go home.   

Thriving With an MPN | Tips for Managing Worry and Anxiety

/in , , , , , , , /by

Thriving With an MPN | Tips for Managing Worry and Anxiety  from Patient Empowerment Network on Vimeo.

Dr. Joseph Scandura explains the role of shared decision-making when deciding on an MPN treatment, and why it’s so important for patients to take an active role in their care.

Dr. Joseph Scandura is an Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura.

 

Related Programs:

 
Finding an MPN Treatment Approach That Is Right for You

Finding an MPN Treatment Approach That Is Right for You

 How to Access Financial Support for MPN Patients

How to Access Financial Support for MPN Patients

 Advice for Choosing MPN Therapy: What’s Right for You?

Advice for Choosing MPN Therapy: What’s Right for You?

Transcript:

Katherine Banwell:

Can you talk about shared decision-making? Why is it so important for patients to work closely with their healthcare team on choosing a therapy? 

Dr. Scandura:

Because these are therapies that last for a long time. And, hopefully, the patients and the relationship last for a long time. And so, I think that everybody has to be comfortable with the decision about a therapy. And my personal goal is to try to make sure that everybody understands the rationale for a therapy, the potential ups and downs with the therapy, which every drug has, every approach has, and what I’m kind of watching and monitoring. I’m a very – I think that communication relieves a lot of anxiety. I think that the unknown is far scarier than the known, even if it’s not perfect. And so, I think shared decision-making has a role in relieving some of the scariness of unknown.  

If we’re discussing to come to a decision, that means that my job is to give you the knowledge that I have so that you can tell me the knowledge about you and what you’re feeling and what you want back. And that back and forth is what helps me do a better job of taking care of the patient and helps the patient understand what’s going on and relieve some of the stress of the unknown. So, I think it’s a very synergistic approach. I don’t think I could practice medicine in another way.  

Katherine:

Managing the worry associated with a diagnosis or concerns even about progression can lead to a lot of anxiety and fear amongst patients. Why is it important for them to share what they’re feeling with their healthcare team? 

Dr. Scandura:

I would say this. If our goals are to have people – I mean, this is what I say to patients – I want you to think about this disease when you’re here. And, then, when you’re not here, my goal is to have you not thinking about this disease because you’re feeling okay and you’re comfortable and confident in what’s going on.  

So, I want to make it a clinic visit disease. That’s not always possible. But, for many patients, it is. I don’t want somebody to become – to start thinking like a sick person when they’re not. I don’t want the diagnosis to be the disease, right? I want the person if they’re feeling well, to recognize that. Live your life; move on with things. But, at the same time, these kinds of diagnoses are scary.  

Katherine:

Yeah. 

Dr. Scandura:

And so, it is normal with a new diagnosis or a change in the diagnosis to go through a period of time where you have to adjust. And so, that’s normal, and you have to work your way through it. Some people want to work that all out internally, and that’s good to a certain extent as long as they have good supports at home. But I often want to know how they’re doing, how they’re working through that so I can get a gauge of how it’s affecting their life and the duration where this adjustment is going on.  

So, somebody who’s still adjusting to a new diagnosis two years after the diagnosis, and they’re otherwise clinically well, that’s getting into the range where it’s not normal. You might need additional help. You might need counseling. And, in some patients, that might include some medications for a short period of time. The goal is to have the disease affecting you only in so far as it’s affecting you, not the idea of the disease. 

So, that’s a – again, it’s a conversation. There are lots of resources. People, being individuals, deal with things in their own way, and I just try to help understand with them how it’s affecting their life. And, if it seems to be more than I would expect, I’ll tell them that.  

And then we can discuss that. It doesn’t mean we have to do something today, but I will tell them, “I think this is maybe a little bit more. Why are you so worried? I think you’re doing great.” 

Katherine:

Yeah. Yeah. Can a social worker or somebody else on the healthcare team help with these emotional needs that patients have? 

Dr. Scandura:

Absolutely. We have great social workers. I tap into them all the time. We also have a group of psychiatrists who are really interested in kind of psychiatry that’s related to oncology and the diagnoses and how it impacts care. I mean, this is New York City, so everybody has a therapist. But a lot of patients have preexisting connections to healthcare providers or support systems. I think, for some patients, groups are helpful.  

Why Should Prostate Cancer Patients Be Empowered?

/in , , , , , /by

Why Should Prostate Cancer Patients Be Empowered? from Patient Empowerment Network on Vimeo.

Prostate cancer researcher Dr. Andrew Armstrong explains how he empowers his patients and describes the positive benefits of speaking up in your own care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

Related Resources

Prostate Cancer Shared Decision-Making_ How Does It Work

Prostate Cancer Shared Decision-Making: How Does It Work?

An Expert’s Perspective on Emerging Prostate Cancer Research

An Expert’s Perspective on Emerging Prostate Cancer Research

 Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Transcript:

Katherine Banwell:

How do you empower patients? 

Dr. Armstrong:

Well, I empower patients by talking and listening. So, listening probably the most important part. Just getting to know somebody and their family is empowering them. You’re understanding their values, their preferences, understanding what side effects they’ve experienced in the past, what comorbidities or health conditions they’re facing, what their fears are. You know, what spiritual values they might bring, what support systems they might bring.  

Every patient is different, and part of a consultation is getting to know the person in front of you, and that empowers them to be honest. Empowers you to be transparent and get to know them so that you can help them sift through a complex decision. 

Giving information is really important, so I do a lot of talking as well as listening. 

But giving information back to the patient about risks and benefits of treatment A, B, or C or no treatment is critical. And then there is a lot of then listening to that shared decision about what might be right for that patient and navigating it. 

Katherine Banwell:

Why is it important for patients to be empowered? 

Dr. Armstrong:

It’s important for patients to be empowered, because this can often be a life-threatening decision. It’s important because this is ultimately their decision for their body, and making this decision can have major consequences that patients have to live with. Doctors empower patients to make the right decisions so they’re comfortable and don’t have regrets looking back on life and these important decisions. Whether this is picking surgery or radiation, or picking initial surveillance, or enrolling on a trial, or starting hormonal therapy. 

I think each decision sometimes is reversible, but sometimes is a big decision that can’t be taken back, and making sure that that patient feels empowered, that they don’t have regrets later, that they’ve gotten all the information to make an informed decision is really critical. 

Disease Monitoring: Is My AML Treatment Working?

/in , , , , , , , /by

Disease Monitoring: Is My AML Treatment Working? from Patient Empowerment Network on Vimeo.

Dr. Eytan Stein explains how AML treatment effectiveness is monitored and why it’s essential for patients to report any symptoms or side effects to their healthcare team.

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

What Are the Phases of AML Therapy

 What Are Current and Emerging AML Treatment Approaches?

Transcript:

Katherine Banwell:

Once treatment has begun, Dr. Stein, how do you know if it’s working?  

Dr. Eytan Stein:

So, that’s a good question. So, the good thing about acute myeloid leukemia when it comes to understanding what’s going on, you know, it’s a disease of the bone marrow cells. And we do bone marrow biopsies to see how things are doing. But no one likes a bone marrow biopsy. It can be a somewhat uncomfortable procedure.  

Katherine Banwell:

How often would a patient need to have a biopsy? 

Dr. Eytan Stein:

Yeah, so they have bone marrow biopsies at diagnosis, and then they often will have bone marrow biopsies two weeks to a month later.  

And then, if they’re in remission, basically any time you think if you want to check to see if they’re in remission or if you suspect the patient is relapsing. Then, you would do a bone marrow biopsy. But what I was getting at is that but you have blood. And the blood is kind of like the bellwether of what’s going on in the bone marrow.  

So, the analogy I use for my patients is, you know, when you’re driving your car and you have – you know, you don’t open the hood every day to make sure the car is running okay. You know, you’re driving your car, and if your car starts making a funny clinking sound, that’s when you open the hood.  

So, the blood is like the clinking sound. If you see something going wrong in the blood, that’s when you know you’ve got to open the hood and look under the hood. If the car is running just fine and you don’t see anything wrong in the blood, using the analogy, maybe you don’t need to do a bone marrow biopsy. 

Katherine Banwell:

What if a treatment isn’t working? What if it stops working or if the patient relapses? What do you do then? 

Dr. Eytan Stein:

Yeah, so when a patient relapses, which unfortunately happens more than we want it to, it’s important number one to do another bone marrow biopsy and at that point, do that mutational testing again because the mutations that are present at the time of diagnosis are not necessarily going to be present at the time of relapse, and sometimes, a new mutation might occur at the time of relapse.  

And again, what that mutational profile shows can help determine what the next best treatment for the patient is. There might be standard-of-care therapies. More chemotherapy might be recommended.  

When a patient relapses, I usually – excuse me – try to get them on a clinical trial because that’s the point where I think clinical trial drugs really have potentially major benefit for the patients, to help get them back into remission. 

Expert Perspective: Why Myeloma Patients Should Weigh in on Their Care Decisions

/in , , , , , /by

Expert Perspective: Why Myeloma Patients Should Weigh in on Their Care Decisions from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Abdullah Khan shares key advice encouraging patients to participate in care and treatment decisions and discusses the importance of communicating symptoms and side effects to your healthcare team.

Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Khan.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

How Does Disease Staging Affect Myeloma Treatment Choices?

 
 Expert Perspective Advances in Treating Relapsed and Refractory Myeloma

 The Role of a Myeloma Specialist on Your Care Team

Transcript:

Katherine:

Let’s turn to decision-making, Dr. Khan. What is the role of the myeloma patient when making care and treatment decisions?  

Dr. Khan:

As a provider, my role is to inform the patient of the facts and the need for a decision. The purpose of the discussions is to determine the patient’s goals and preferences, because it’s essential the patient’s values of respected. The best outcomes occur when the medical facts align with the patient’s preferences. And this is a multi-disciplinary team approach.  

Katherine:

Why is it so important for patients to share any symptoms and side effects they’re having with their healthcare team?   

Dr. Khan:

I read something recently on an NIH website titled “What Do I Need To Tell the Doctor?” that I think answers this question well. And I’m quoting the article. “Talking about your health means sharing information about how you feel physically, emotionally, and mentally. Knowing how to describe your symptoms and bringing up other concerns will help you become a partner in your healthcare.”  

I think I really like that end, “partner in your healthcare.” The patient’s symptoms and suggest disease or disorder in the body. If there are concerns, this may prompt a clinic visit or the patient may be advised to go to the closest ER or urgent care depending on the urgency of the situation. But in other cases, the healthcare team may help provide reassurance that the symptom can be continued to be monitored more resolution, or it can be evaluated in more detail if it persists or worsens.  

Katherine:

What about side effects? Why is that important for patients to share any side effects they may be having?  

Dr. Khan:

Side effects may be a result of the disease itself. It might be a marker of the side effects from the treatment. Or I’m focused on the multiple myeloma, but there’s every other organ system in the body that also needs help. So, the myeloma might be doing okay. The treatment might be doing okay. But, for example, we might have a lung toxicity from their pre-existing COPD or a heart toxicity from their pre-existing coronary artery disease. So, it’s very important to share all symptoms So, we can see how to properly assess it.   

Katherine:

And better care for the patient.  

Dr. Khan:

Right.  

What Are Common Symptoms of DLBCL?

/in , , , , , /by

What Are Common Symptoms of DLBCL? from Patient Empowerment Network on Vimeo.

What symptoms could diffuse large B-cell lymphoma (DLBCL)patients experience? Dr. Kami Maddocks defines DLBCL and explains the diagnosis, symptoms, sub-types and progression of the disease.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

Is My DLBCL Treatment Working_ What Happens if It Doesn’t Work

 
 A DLBCL Expert Debunks Common Patient Misconceptions

 Understanding DLBCL Treatment Classes

Understanding DLBCL Treatment Classes

Transcript:

Katherine:

Now, let’s learn more about DLBCL. For those who may be newly diagnosed, what is it?  

Dr. Maddocks:

Diffuse large B-cell lymphoma is a type of non-Hodgkin’s lymphoma. So, this is considered a blood cancer. Lymphomas are a cancer of the lymphocyte, which is one of the types of blood cells that form your immune system. So, when you think about your nodes, these are part of the cells that help fight different types of infection. So, diffuse large B-cell lymphoma is one of the types of non-Hodgkin’s lymphomas, it’s aggressive, and it is considered an aggressive form of lymphoma. And it’s when you get a cancer of those lymph cells that often involved the lymph nodes but could also involve bone marrow, blood cells, other sites outside of the lymph nodes.  

Katherine:

Do we know what causes DLBCL?  

Dr. Maddocks:

For the most part, we don’t know what causes diffuse large B-cell lymphoma. So, most of the time, it’s going to arise with patients not having risk factors. We know that age is the most common risk factor with the median diagnosis of a patient in their 60s.  

Although, we also know that diffuse large B-cell lymphoma, why it’s more common to be diagnosed later in life, can occur across all the age spectrum. So, you see this in pediatric adolescents, young adults, and older adults. There are some causes. These represent more than minority of cases but certain viruses, including HIV virus, can be associated with the development of lymphoma. Certain other medical conditions, like rheumatologic conditions and some of the treatments for these, can be associated, and then, some chemical exposures. But in general, most of the time, we’re not going to have an identified cause.  

Katherine:

What are the symptoms?  

Dr. Maddocks:

They can look a little bit different for different patients. So, because this is often a cancer, most of the time there will be lymph node involvement. For some patients, they can actually feel or somebody will see a lymph node that grows. Most of the time, when this occurs, it’s going to be in the neck, under the armpits, or in the groin area.  

Patients can start to have symptoms from other sites, of those lymph nodes growing or disease so that they can get pain or shortness of breath. Or they can have what’s called B symptoms. So, B symptoms are inflammatory like symptoms from the lymphoma, and these include weight loss. So, a rapid change in weight for no reason. Night sweats. So, daily night sweats, we call them drenching night sweats. They wake up the patient, they soak their clothes, sometimes they soak the whole bed. And then, fatigue. So, extreme fatigue, not able to do your daily activities. And then, occasional people will have cyclical fevers.  

Katherine:

Are there different types of DLBCL?  

Dr. Maddocks:

So, in general, diffuse large B-cell lymphoma, there’s one major subtype. You can divide it into different pathological or molecular subtypes.   

So, where the cell develops lymphoma during the cell’s development, there are different chromosome abnormalities. So, there are different categorizations but in general, diffuse large B-cell lymphoma itself is considered – it’s treated, often, the same even with these different subtypes. So, there are different subtypes but in general, they’re all considered a form of diffuse large B-cell lymphoma.   

Katherine:

They’re under this umbrella of DLBCL.  

Dr. Maddocks:

Yeah. Yeah.   

Katherine:

Yeah.

Do patients usually get diagnosed after they experience some symptoms?  

Dr. Maddocks:

So, because this is an aggressive lymphoma, there are a lot of patients that will have symptoms with this, and that’s how they’ll present via either noticing the lymph nodes, having the B symptoms, or having pain, or other abnormalities from the lymphoma progressing.   

Occasionally, whereas indolent lymphoma is more commonly found of incidentally. Occasionally, that’ll be the case with these, but I would say a fair number of patients have some sort of symptom or something that brings them to medical attention.  

Katherine:

How does DLBCL progress?  

Dr. Maddocks:

So, they’re different, as far as there’s more aggressive and less aggressive. So, some patients can develop symptoms, really, over days to weeks. Whereas, some patients are more weeks to months.  

What Is the Patient’s Role in Their DLBCL Care?

/in , , , , , , , /by

What Is the Patient’s Role in Their DLBCL Care? from Patient Empowerment Network on Vimeo.

How can patients engage in their DLBCL care? Expert Dr. Kami Maddocks explains how disease-specific education empowers patients, and stresses the importance of patients playing an active role in decisions.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

See More From The Pro-Active DLBCL Patient Toolkit

Related Programs:

Emerging DLBCL Treatments That Patients Should Know About

 
 A DLBCL Expert Debunks Common Patient Misconceptions

 Understanding DLBCL Treatment Classes

Understanding DLBCL Treatment Classes

Transcript:

Katherine:

Now, let’s learn more about DLBCL. For those who may be newly diagnosed, what is it?  

Dr. Maddocks:

Diffuse large B-cell lymphoma is a type of non-Hodgkin’s lymphoma. So, this is considered a blood cancer. Lymphomas are a cancer of the lymphocyte, which is one of the types of blood cells that form your immune system. So, when you think about your nodes, these are part of the cells that help fight different types of infection. So, diffuse large B-cell lymphoma is one of the types of non-Hodgkin’s lymphomas, it’s aggressive, and it is considered an aggressive form of lymphoma. And it’s when you get a cancer of those lymph cells that often involved the lymph nodes but could also involve bone marrow, blood cells, other sites outside of the lymph nodes.  

Katherine:

Do we know what causes DLBCL?   

Dr. Maddocks:

For the most part, we don’t know what causes diffuse large B-cell lymphoma. So, most of the time, it’s going to arise with patients not having risk factors. We know that age is the most common risk factor with the median diagnosis of a patient in their 60s.  

Although, we also know that diffuse large B-cell lymphoma, why it’s more common to be diagnosed later in life, can occur across all the age spectrum. So, you see this in pediatric adolescents, young adults, and older adults. There are some causes. These represent more than minority of cases but certain viruses, including HIV virus, can be associated with the development of lymphoma. Certain other medical conditions, like rheumatologic conditions and some of the treatments for these, can be associated, and then, some chemical exposures. But in general, most of the time, we’re not going to have an identified cause.  

Katherine:

What are the symptoms?  

Dr. Maddocks:

They can look a little bit different for different patients. So, because this is often a cancer, most of the time there will be lymph node involvement. For some patients, they can actually feel or somebody will see a lymph node that grows. Most of the time, when this occurs, it’s going to be in the neck, under the armpits, or in the groin area.  

Patients can start to have symptoms from other sites, of those lymph nodes growing or disease so that they can get pain or shortness of breath. Or they can have what’s called B symptoms. So, B symptoms are inflammatory like symptoms from the lymphoma, and these include weight loss. So, a rapid change in weight for no reason. Night sweats. So, daily night sweats, we call them drenching night sweats. They wake up the patient, they soak their clothes, sometimes they soak the whole bed. And then, fatigue. So, extreme fatigue, not able to do your daily activities. And then, occasional people will have cyclical fevers.  

Katherine:

Are there different types of DLBCL?  

Dr. Maddocks:

So, in general, diffuse large B-cell lymphoma, there’s one major subtype. You can divide it into different pathological or molecular subtypes.  

So, where the cell develops lymphoma during the cell’s development, there are different chromosome abnormalities. So, there are different categorizations but in general, diffuse large B-cell lymphoma itself is considered – it’s treated, often, the same even with these different subtypes. So, there are different subtypes but in general, they’re all considered a form of diffuse large B-cell lymphoma.  

Katherine:

They’re under this umbrella of DLBCL.  

Dr. Maddocks:

Yeah. Yeah.  

Katherine:

Yeah. Do patients usually get diagnosed after they experience some symptoms?  

Dr. Maddocks:

So, because this is an aggressive lymphoma, there are a lot of patients that will have symptoms with this, and that’s how they’ll present via either noticing the lymph nodes, having the B symptoms, or having pain, or other abnormalities from the lymphoma progressing.  

Occasionally, whereas indolent lymphoma is more commonly found of incidentally. Occasionally, that’ll be the case with these, but I would say a fair number of patients have some sort of symptom or something that brings them to medical attention.  

Katherine:

How does DLBCL progress?  

Dr. Maddocks:

So, they’re different, as far as there’s more aggressive and less aggressive. So, some patients can develop symptoms, really, over days to weeks. Whereas, some patients are more weeks to months.  

How Can Patients Navigate Care and Thrive With an MPN?

/in , , , , , , , /by

How Can Patients Navigate Care and Thrive With an MPN?  from Patient Empowerment Network on Vimeo.

What does it mean to thrive with an MPN? Dr. Jeanne Palmer, an MPN specialist from the Mayo Clinic, shares advice on navigating MPN care and stresses the importance of communicating openly with your healthcare team.

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

Related Programs:

 
Understanding Treatment Options for ET, PV, and Myelofibrosis

Understanding Treatment Options for ET, PV, and Myelofibrosis

 How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions?

 How Treatment Goals Impact MPN Treatment Decisions

How Treatment Goals Impact MPN Treatment Decisions

Transcript:

Katherine Banwell:

What does it mean to you to thrive with an MPN?

Dr. Jeanne Palmer:

I think living with an MPN can be very difficult. I think there is a number of things. First of all, there’s always the worry of what’s going to happen in the future. Many of these MPNs can start as fairly, for lack of a better term, as benign issues and can convert to something much more serious. So, I think living with that sort of timebomb in the back it can be extremely stressful. So, figuring out how to live with the fact that there is some degree of uncertainty.

I think the other thing is making sure to understand your disease. These are very rare disorders and even if you go to a hematologist-oncologist specialist, a lot of times they don’t have all the information because they don’t see a lot of them every year. So, it’s really important to make sure that above and beyond that you understand what’s going on in your body so that when new things happen, new symptoms happen, you’re able to really address them as opposed to sort of living with something that may make you feel poorly that’s not being addressed.

So, again, I think the biggest piece of this is seeing how do you live with uncertainty and how do you make sure you understand your disease well enough that you know what’s going on in your own body. 

Katherine Banwell:

Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. Why do you think it’s important for patients to speak up when it comes to symptoms and side effects?

Dr. Jeanne Palmer:

Well, there is a lot of things. This is a disease, again, that we can direct our therapy many times towards symptoms, and so when we think about how do I direct my therapy, so how do I treat somebody, symptoms are an incredibly important part of it. And there is nothing worse than having a patient come and see me who I see every six months, because they’ve been pretty stable and they’re like, “Oh, for three months I’ve been feeling awful.” And you’re like, well, “Why didn’t you let me know, we could do something about this?”

So, if there is something that doesn’t feel right, it’s very, very important to talk to your healthcare provider. I would much rather be bothered and handle something earlier on than miss something and really have a lot more catch-up to do afterwards.

The other thing is symptoms may indicate a blood clotting event. We know that patients will have a higher risk of blood clotting. These are extremely important to identify early on because if they go unchecked, they can cause more damage. 

Katherine Banwell:

Dr. Palmer, was we close out this conversation I wanted to get your thoughts on where we stand with progress in helping people live longer and truly thrive with MPN. What would you like to leave the audience with?

Dr. Jeanne Palmer:

So, I think that the first thing is make sure you understand your disease. Don’t hesitate to ask for a second opinion. It’s always good to make sure you talk to someone who can really explain so you feel like when you go home you understand what’s going on in your body. Make sure you understand what symptoms to look for, what things to be aware of, because a lot of times people come in and they have no idea that, oh, these symptoms are actually related to their disease.

The other thing to make sure is that you’re very honest with your provider on how you’re feeling. A lot of times people come in and they say, “Oh, how are you feeling?” “I feel fine,” but then they start to ask very specific questions and they’re like, “Oh yeah, I’m really tired, my fatigue is an 8 out of 10,” or something.

So, make sure you’re really honest with your provider. When they ask you how they’re doing, this is not a social visit, this is a visit where they need to know your symptoms, so you don’t need to say I’m fine like you normally would if you were walking down the street.

The next thing is to always make sure to know where there’s clinical trials because we are making enormous great leaps and bounds in this field. It’s a really exciting time for myeloproliferative diseases, and there’s a number of new drugs that are being tested and coming out. So, it’s always important, if the opportunity is available and you can do it, clinical trials are a great way to get treatment.

Plus, you are giving back, because these are things that help us learn whether something works or not. So, you’re not as much a guinea pig, you never get a sugar pill. It’s one of those things will you will always get the treatment you need and then they may add something to it or you may be in the situation where there is no treatment, so they try something.

But clinical trials, I have to emphasize, are a great way to get therapy and really are how we know everything that we know about treatment for these diseases.

Katherine Banwell:

Yeah. It sounds like there’s a lot of progress and hope in the field.

Dr. Jeanne Palmer:

Oh, absolutely. 

What Is Follicular Lymphoma? What Are the Symptoms?

/in , , , , , , , , /by

What Is Follicular Lymphoma? What Are the Symptoms? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar defines follicular lymphoma and provides an overview of common disease symptoms.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients

 What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

 Follicular Lymphoma Research and Treatment Updates

Follicular Lymphoma Research and Treatment Updates

Transcript:

Katherine Banwell:

What is follicular lymphoma? 

Dr. Matasar:

Good question. So, follicular lymphoma, the first thing to say is that it’s a type of lymphoma. And lymphomas are cancers of lymphocytes, of immune cells. So, these illnesses are all cancers that come from and are of the immune system. There’s a tremendous variety of lymphomas, more than 100 different types, and these range from the slowest-growing to the fastest-growing things, and everything in between. But follicular lymphoma is one of the more common of these 100 plus diseases.  

It’s actually the second most common in America, and the most common of what we call the indolent, or naturally slow-growing, B-cell lymphomas. It’s called follicular lymphoma, because the stage of lymphocyte growing up at which we think the cells went wrong was when they normally live inside of these little nests, or follicles, inside of lymph nodes. People get confused. They’re like follicular, is that like hair follicles? It’s not that I have that many left. But no, it’s really about the lymph node follicles. And that’s sort of the stage at which we think that the cells went wrong.  

Katherine Banwell:

What are the symptoms of follicular lymphoma?  

Dr. Matasar:

So, it’s a very variable illness. Sometimes, this is a disease that presents with symptoms. People have swollen lymph nodes, swollen glands that they feel or that their doctors felt, or they have lymph nodes or other growths in the body that are causing pain or discomfort. More typically, however, this will be found accidentally doing testing for other purposes.  

You have a kidney stone, and your doctors do a CAT scan to look at the kidney stone. And they say, “Oh, what are those lymph nodes swollen about? What’s that about? We should probably figure out what’s going on there.” And then, there’s the third group which sort of present with what we all vague or constitutional symptoms, which is stuff like progressive fatigue, or maybe even fevers, or night sweats. But fatigue is a very common symptom that sometimes don’t even realize was there until sort of hindsight when they’re feeling better. And they’re like, “Wow, I didn’t know I could feel this good. I guess I’ve been tired for these last years. And I feel so much better. Thanks, doc.” 

How Are CLL Symptoms Treated?

/in , , , , , , , , , /by

How Are CLL Symptoms Treated? from Patient Empowerment Network on Vimeo.

Dr. Jean Koff reviews common CLL symptoms and explains why patients should discuss any issues they experience with their healthcare teams.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute of Emory University. Learn more about Dr. Koff, here.

See More from Thrive CLL

Related Resources:

What Are the Current CLL Treatment Options?

 What Do You Need to Know About CLL Treatment Side Effects?

What Do You Need to Know About CLL Treatment Side Effects?

 What is YOUR Role in Choosing a CLL Treatment Approach?

Transcript:

Katherine Banwell:

One part of thriving with CLL is managing the symptoms of the disease. What are the common symptoms of CLL? 

Dr. Jean Koff:

So, one thing that I see with nearly all of my CLL patients, regardless of where they are in the CLL journey, and regardless of whether they need active medications to manage their CLL, is some degree of fatigue. And this can range from just mild fatigue that patients notice that they need a little bit of a breather in the middle of the day, to needing more sleep at night, to not being able to exercise as much as they’re used to. And that is by far one of the most common symptoms we see. Again, whether or not their disease needs medication to manage it.  

The classic symptoms of CLL that often let us know that it’s time to start medical management are not just this fatigue. But the classic symptoms are  B symptoms. And we describe those as fevers, night sweats, and unintentional weight loss. Those are very common. And then some patients with CLL will also have what we call palpable lymphadenopathy, which is our term for lymph nodes that are enlarged that you can feel. And the most common places to feel these on the body are on the neck, under the arms, and in the groin.  

Katherine Banwell:

Okay. How are symptoms treated? 

Dr. Jean Koff:

So, if your symptoms progress to the point that your doctor thinks you need medication – they’re becoming disruptive to your life, or they are getting worse and worse over time, then there are a variety of medications that we can use in CLL. And this is actually a very exciting field. Right now, the state of the field is that most patients who are starting on their first treatment for CLL will use some sort of oral medication, and that may be accompanied by an IV – what we call monoclonal antibody, or it may not. But one thing that has really changed even since I very first started practicing, is that we no longer commonly use what I would call conventional chemotherapy to treat CLL – even though this was the standard of care just a few years ago. 

Katherine Banwell:

Wow. So, a lot has changed. 

Dr. Jean Koff:

Yes, definitely. 

How Does Immunotherapy Treat Bladder Cancer?

/in , , , , , , , /by

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

Dr. Fern Anari from Fox Chase Cancer Center explains immunotherapy and how this therapy works to treat bladder cancer. Dr. Anari also discusses the importance of communicating how you’re feeling with your healthcare team.

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.

See More From The Pro-Active Bladder Cancer Patient Toolkit

Related Programs:

How Does Targeted Therapy Treat Bladder Cancer?

How Does Targeted Therapy Treat Bladder Cancer?

 Expert Update: Bladder Cancer Treatment & Research News

Expert Update: Bladder Cancer Treatment & Research News

 Current Treatment Approaches for Bladder Cancer

Current Treatment Approaches for Bladder Cancer

Transcript:

Katherine Banwell:

What is immunotherapy and how does it work to treat bladder cancer?  

Dr. Anari:

So, immunotherapy, the analogy that I often use when I see patients is immunotherapy goes in by IV, and it acts as the drill sergeant. And it trains your own body’s immune system or the soldiers to find and fight the cancer cells. So, that’s really how it really works. The drug itself is training your own body to do the work. 

Most people will have no side effects from this. And they tolerate it really well. However, because the immune system is getting a little bit activated, sometimes those soldiers or your immune cells can go rogue. And they can start attacking normal healthy tissue in the body, almost like an autoimmune disease. 

So, when on these drugs, it’s really important if anything is new or different to let your doctors know, because it’s often easy to troubleshoot over the phone or at a quick office visit if it’s related to immunotherapy or not. So, it’s really important that you keep that in mind whenever a new symptom or anything may pop up.  

Katherine Banwell:

That’s great information – it’s really important to communicate any issues you may be having. So, who is immunotherapy right for? Is it right for every bladder cancer patient?  

Dr. Anari:

So, immunotherapy is used in several different settings for bladder cancer treatment. It’s used in the metastatic bladder cancer treatment world mostly. Often, we use it as either a second-line treatment after chemotherapy or in a maintenance-type approach after someone’s completed their chemotherapy, meaning we plan for about two years of treatment. And patients that can’t get chemotherapy for whatever reason we can use immunotherapy as a first-line treatment.  

And it’s also used in localized bladder cancer meaning cancer that’s contained only to the lining of the bladder in patients who’ve gotten treatments that go inside the bladder called BCG. When their cancer isn’t responding, immunotherapy is also an option there.  

Katherine Banwell:

And what might be some of those side effects that patients should look out for?  

Dr. Anari:

So, what I tell everyone is they can get inflammation or an “itis” of anything. So, some examples of that: If someone has a rash, that’s called dermatitis. That can be mild, or it can be severe. If someone has inflammation of the bowels or colitis, they can have diarrhea that starts all of a sudden.  

Another example is pneumonitis or inflammation of the lungs. People may have cough, trouble breathing, low oxygen levels. It really can affect any organ system that you have. So, that’s why it’s really important if something feels different to let your doctors know.   

It’s also really important if you’re not near your doctor for whatever reason and you end up seeing a local doctor, let’s say, at an emergency room that you let them know that you’ve received immunotherapy because they’ll think about the problems that you’re having a little bit differently.