Author: Katrina Villareal

December 26, 2024

Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies

Demystifying Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies

Hosted by The Patient Story

Take part in an engaging and informative webinar featuring Dr. Peter Martin, a leading lymphoma expert, to discuss the latest advancements in follicular lymphoma treatment. We will discuss precision medicine and emerging therapies, while addressing how to manage side effects and improve quality of life. This session is designed to empower patients with practical knowledge and support as they navigate their diagnosis.

Dr. Peter Martin, a leading lymphoma expert at Weill Cornell Medicine, Laurie Adami, a follicular lymphoma patient and advocate, and Tiffany Drummond, cancer advocate and clinical researcher, discuss the latest advancements in follicular lymphoma treatment. This conversation talks about precision medicine and emerging therapies, addressing how to manage side effects and improve quality of life, and is designed to empower patients with practical knowledge and support as they navigate their diagnosis.

Understand current and emerging options, including targeted therapies and bispecific antibodies, and how they address treatment challenges. Gain actionable strategies to manage side effects and improve quality of life. Explore how precision medicine tailors treatment plans to individual needs, including chemo-free options. Get answers to common and critical questions about follicular lymphoma. Be part of a conversation that brings the patient experience front and center to inspire hope and informed decision-making.

The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.

Thank you to The Leukemia & Lymphoma Society for their partnership. The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.

Thank you to Genmab and AbbVie for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Table of Contents

Introduction
What is Follicular Lymphoma?
How is Follicular Lymphoma Diagnosed?
Symptoms of Follicular Lymphoma
Traditional Treatments for Follicular Lymphoma
Bispecific Antibodies for Treatment of Relapsed/Refractory Follicular Lymphoma
Experience with CAR T-cell Therapy
FDA-Approved Bispecific Antibodies for Follicular Lymphoma
Why are Bispecific Antibodies Administered in the Clinic or Hospital?
Side Effects of Bispecific Antibodies
Personal Experience with Side Effects
Precision Medicine as an Approach to Follicular Lymphoma
Long-Term Implications of Chemo-Free Treatments for Follicular Lymphoma
Clinical Research and Follicular Lymphoma
Fertility Preservation and Follicular Lymphoma
Bridging the Gap Between Academic Research Centers and Community Hospitals
Key Takeaways from ASH
Conclusion

Introduction

Tiffany Drummond, Patient Advocate

Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a care partner began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding resources, support, and shared experiences, and now I am committed to helping others avoid similar difficulties, no matter the condition.

At The Patient Story, we create programs to help you figure out what comes next. Think of us as your go-to guide for navigating not only the cancer journey but your overall health journey. From diagnosis to treatment, we have you covered with real-life patient stories and educational programs with subject matter experts and inspirational patient advocates and guests. I genuinely am your personal cheerleader, here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.

We want to thank our sponsors, Genmab and AbbVie, for their support, which helps us to host more of these programs for free to our audience. The Patient Story retains full editorial control over all content as always. We also thank all of our promotional partners for their support. It is because of you our programming reaches the audience who needs it. I hope you’ll find this program helpful, but please keep in mind that the information provided is not a substitute for medical advice.

I had access to great cancer centers. I went to four different big cancer centers and that’s where I was able to join clinical trials.
Laurie Adami

Laurie Adami, Follicular Lymphoma Patient Advocate

Tiffany: I have the pleasure of interviewing Dr. Peter Martin and it so happens that we have much more in common than you might think. I will also be speaking with a follicular lymphoma patient, Laurie Adami. It’s so important to get a patient’s perspective and I’m sure her experience will resonate with you and your loved ones. Let’s learn about Laurie’s journey before deep diving into the latest treatment options.

Laurie Adami: I was diagnosed in 2006. My son was in kindergarten. There was one treatment I did right away. We thought I was in remission, so I merrily went back to work, which entailed traveling internationally. Three months later, my cancer was back on the first follow-up scan. That prompted 12 years of treatment. From 2006 to 2018, I was in continuous treatment and underwent seven different lines of therapy, including three clinical trials.

The first six treatments didn’t work, but thankfully, the seventh line of treatment did. I live in Los Angeles, so I had access to great cancer centers. I went to four different big cancer centers and that’s where I was able to join clinical trials.

Demystifying Follicular Lymphoma - Latest Advances in Precision Medicine and Emerging Therapies

Dr. Peter Martin, Hematologist-Oncologist

Tiffany: Dr. Peter Martin serves as the professor of medicine and chief of the lymphoma program at Weill Cornell Medicine. He is a hematologist-oncologist who specializes in caring for patients with lymphoma at NewYork-Presbyterian Hospital. His research focus, which is very dear to my heart, is on clinical investigation of new and promising therapies. Dr. Martin, how are you doing today?

Dr. Peter Martin: It’s great to see you again, Tiffany. I don’t know if everybody else knows this, but we worked together long ago.

Tiffany: You could say how long ago. It was about 15 years ago. I used to call him Peter, that’s how far we’ve come. I’m glad to see that we both have stayed the course, which is fighting cancer and finding a cure. I know that you made great strides, so thank you for being here.

[Follicular lymphoma] typically grows slowly over months, years, or decades, and that’s why we call it indolent, which means lazy.
Dr. Peter Martin

What is Follicular Lymphoma?

Tiffany: I’m a patient advocate for many types of cancer, but for those who aren’t as familiar, can you break down follicular lymphoma? We know that it’s considered an indolent lymphoma. Can you walk us through that characteristic? What makes follicular lymphoma distinct from more common types of non-Hodgkin lymphoma, such as DLBCL or diffuse large B-cell lymphoma?

Dr. Martin: Follicular lymphoma is pretty common from the lymphoma perspective but not common from a cancer perspective. In the United States, about 20,000 people every year will be diagnosed with follicular lymphoma. Depending on your perspective, there are up to 130 different kinds of lymphoma, which is hard to keep track of. Each subtype is a little bit different biologically in how they’re defined and how they behave clinically.

Follicular lymphoma is based on the way it looks under the microscope. They look like little follicles in the lymph node. It typically grows slowly over months, years, or decades, and that’s why we call it indolent, which means lazy. I like the word lazy because it’s a lymphoma that can’t be bothered to cause problems.

Once diagnosed, we’ll often talk about the goal of treatment, which is to help somebody live a life that’s as close to the life they would live without lymphoma. It hangs around for a long time and we keep managing it and kicking the can down the road.

How is Follicular Lymphoma Diagnosed?

Tiffany: If someone is living with follicular lymphoma for years or even decades, how is it diagnosed? Do they come in for some other type of symptom that usually makes them get referred to a specialist? How does that work for a patient who doesn’t even know that they have it?

Dr. Martin: It can vary a little bit. Ultimately, to diagnose follicular lymphoma, you have to look at it under the microscope. The word lymphoma means tumors of the lymph nodes, so most of the time when we meet somebody with follicular lymphoma, they’ll have an enlarged lymph node. Typically, it’s a painless, enlarged lymph node in the neck, armpit, or groin.

It might be picked up accidentally while getting tested for other reasons, which is pretty common because follicular lymphoma is often asymptomatic. Although it’s called lymphoma, sometimes it’s not in a lymph node. It might be present in the bone marrow or some other organ, like the gastrointestinal tract or the skin. Ultimately, though, somebody has to look at it under the microscope and that’s how we make the diagnosis.

All of my doctors dismissed me. I would specifically tell them, ‘I’m very worried I have lymphoma,’ and they would say, ‘Your bloodwork is all normal, so you don’t have cancer.’
Laurie Adami

Symptoms of Follicular Lymphoma

Tiffany: Laurie, did you experience any symptoms before your diagnosis or was it something you noticed but didn’t read into it enough to get it checked right away?

Laurie: When my son was three years old, I started to get frequent sinus infections and couldn’t get rid of them. I also developed a dry eye. I was a long-time contact lens wearer and suddenly, I couldn’t wear my right contact lens. I was very tired. I had a lymph node on my neck that was concerning me and I felt something in my abdomen.

All of my doctors dismissed me. I would specifically tell them, “I’m very worried I have lymphoma,” and they would say, “Your bloodwork is all normal, so you don’t have cancer.” I told my husband that they wouldn’t listen to me and he didn’t believe me, so I took him to my appointments and he couldn’t believe how I was dismissed. He was mortified. This went on for three years.

I wanted to believe these doctors. I wanted to believe that allergies were causing these sinus infections. I was also at the age where I could be starting to get perimenopausal symptoms, so my symptoms were attributed to my hormones. It was aggravating.

I kept feeling worse and worse. The exhaustion was incredible. One of the doctors I saw said, “Laurie, you’re president of a software company. You’re traveling internationally. You’re traveling a week a month. You’re running a household. You have a young boy. I’m exhausted just listening to what you do.”

Finally, someone I knew referred me to a diagnostician who took me seriously. I went in to see him and explained everything. I said, “People think this node is from allergies.” He said, “Did you get tested for allergies?” I said, “Yeah, and there was nothing.” He said, “Okay, that doesn’t make sense then.”

I explained the possibility of a hernia and he said, “It could be, but Laurie, we don’t guess. We have CT machines and I’m going to send you to a hernia specialist. We’re going to do imaging.” That week, they imaged me and it was scary because I was supposed to go in for a simple imaging. They expected to find a hernia and I wasn’t supposed to have contrast. Suddenly, this lady brought in the bottles of contrast because they had to get a better image. My heart began to sink as I was sitting there.

Two days later, on Good Friday of 2006, the doctor’s office called and said I needed to come in. My mother and brother were in town for the Easter weekend, but they didn’t tell me to bring anyone, so I went by myself and they told me I had either lymphoma or a mesenchymal tumor. The imaging also detected lesions on my lungs, so he said, “You may also have lung cancer.” That’s when I found out that I had some type of cancer.

I knew a little bit about lymphoma because when I had this node and I put in my symptoms online, lymphoma kept coming up. But 90% of lymphoma patients are diagnosed at stage 4 because most patients don’t have symptoms. I did, but I didn’t have anybody listening to me, so they dismissed my concerns.

As it turned out, it was good that they didn’t listen to me because the only treatment that existed at the time was a monoclonal antibody, multi-chemo, prednisone treatment. If I had it earlier, it wouldn’t have worked and I would have had nothing else.

I had autologous stem cell transplant as an option, but it was not a good option, especially if you relapse after the first line of chemo and monoclonal antibody treatment. In a way, it ended up being a blessing because, by the time they were pushing me to do the transplant, I managed to find a trial of a histone deacetylase (HDAC) inhibitor, which is what I did as my second line of therapy.

Dr. Martin: Oftentimes, somebody will say, “I’ve had this lump for five years and finally my friend told me that I should have it looked at.” That’s a testament to how it behaves. It hangs around for a long time, so people often get accustomed to it being there before they decide to bring it to somebody’s attention.

Traditional Treatments for Follicular Lymphoma

Tiffany: Before we get into the novel approaches, can you walk me through the traditional treatments for follicular lymphoma? What factors determine a more or less aggressive approach in your practice?

Dr. Martin: The job of a hematologist-oncologist is to learn as much as we can about the lymphoma and that’s changing all the time as we get more sophisticated. We recognize that this lymphoma isn’t happening in a petri dish in a lab somewhere; it’s happening in a real live person, so we have to learn as much as we can about that person. That includes not only their medical issues but also all of the things that are important to them. What are their values? What is their support network like? There are 8 billion of us on the planet and we’re all different, so there’s even more heterogeneity among people than there is amongst the 130 different lymphomas.

We bring all of that information together and come up with a plan that makes the most sense for that person. Treatments are constantly evolving and we have new treatments available today that we didn’t have in the past. In general, the goal of treatment is to try to give somebody the life that’s the closest to the life that they would have if they didn’t have lymphoma.

We have to learn as much as we can about that person. That includes not only their medical issues but also all of the things that are important to them.
Dr. Peter Martin

Approaches can vary. In some cases, you say, “Look, this is not causing you any problems. It’s not going to cause problems hopefully for a long time — on average, multiple years — and so we watch it and it sits there.” That can be a little bit counterintuitive. In the Western world, you want to catch and deal with cancers early. That’s certainly the case for breast cancer, lung cancer, or colon cancer, so the initial discussion around follicular lymphoma can be a little bit awkward sometimes. You say, “Oh, great. No problem. Let’s do nothing about it.” But it’s a proven strategy to help people live a good quality of life without dealing with any of the side effects of treatment.

On the other end of the extreme, we might propose using more aggressive therapies, including chemotherapy if we need to shrink something quickly and help them feel better. There are options in the middle where we use immunotherapies that may shrink the tumor, may help somebody to feel better, and may prolong the time between that and other kinds of therapies by months or years. There are vast options and more new treatments are being approved.

Bispecific Antibodies for Treatment of Relapsed/Refractory Follicular Lymphoma

Tiffany: Let’s talk about some of the data that came out of the 66th American Society of Hematology (ASH) annual meeting. Bispecific antibodies are changing the way that we look at and treat cancer, especially when it comes to immunotherapy. What benefit may they contribute to our relapsed/refractory follicular lymphoma patients?

Dr. Martin: Bispecific antibodies are a type of monoclonal antibodies. Antibodies are proteins that our immune system makes to fight against bacteria. A few decades ago, clever people figured out how to make antibodies that would fight not against infections but against cancer. That moved quickly from the lab to people and, for the past 25 years, has revolutionized the way many cancers are managed. It started with lymphoma. We’ve been leading the way for a long time.

Bispecific antibodies are a natural evolution of trying to come up with ways to make this kind of immunotherapy work better. They’re very cleverly engineered. They bind to tumor cells the same way an antibody would bind to a virus or bacteria, but in addition, they also bind to other parts of our immune system called T cells and they activate them. When those T cells are activated, they secrete chemicals called granzymes and perforins that poke holes in cancer cells and cause them to die. This is a clever way of using our immune system to kill cancer cells and it does it remarkably effectively.

The vast majority of people will have not only responses to this treatment, meaning the tumor shrinks, but in many, if not most, cases, the tumor will disappear on a CT scan. It might be completely gone — we’ll find out as the years go by — but it disappears on a CT scan in a lot of people.

Bispecific antibodies are attractive in that it’s a non-chemotherapy approach and it’s a proven form of immunotherapy. It’s an evolution of the kinds of immunotherapies that we’ve been using in the past and it’s more effective.

The other thing that’s nice about it is that it’s off the shelf, so you order it from a pharmacy. It doesn’t have to be engineered specifically for each patient the way something called chimeric antigen receptor T cells or CAR T-cells have to be.

I did a monthly infusion of a third line monoclonal antibody… but as soon as I stopped, it came back, so it was a race against time.
Laurie Adami

Experience with CAR T-cell Therapy

Tiffany: Laurie, I believe you’re familiar with CAR T-cell therapy. How was that experience and where are you currently in your cancer journey? Are you also familiar with bispecific antibodies? I would love to get your perspective on this immunotherapy versus CAR T-cell therapy.

Laurie: I heard about CAR T-cell therapy six years before I could get it. I heard about it in 2012 when I attended an LLS event where they showed Emily Whitehead’s film. I went to my college that week and asked about it because I didn’t know about CAR T-cell therapy. He said, “They’re not trying it for follicular lymphoma. They’re doing it for more aggressive tumors. We have to wait. You’re on a PI3 kinase inhibitor. We’re going to ride this horse.” That took me through 2016 when the cancer finally outsmarted that pill.

A new monoclonal antibody had been approved. It was a nine-month course, so I did a monthly infusion of a third-line monoclonal antibody, obinutuzumab. It immediately started shrinking my tumors again, but as soon as I stopped, it came back, so it was a race against time.

In 2018, my tumors were huge. While I was out hiking in April, my oncologist called and said, “We finally got the trial for follicular lymphoma. It’s going to open at UCLA. We’re going to have five patients enrolled in the first cohort and you will be patient number one.”

When you’re in a clinical trial, you have to review the paperwork to sign. It discloses all the side effects of patients in the phase 1 study. This was a phase 2 study, so it wasn’t completely bleeding edge. Then they have to do biopsies and imaging. They had to make sure I didn’t have anything in my brain. They weren’t allowing patients with central nervous system involvement to get CAR T-cell therapy because they didn’t know how it would work and what it would do. Now they know, so they do it for people with involvement in the central nervous system.

It was amazing because, within days, the tumors were shrinking.
Laurie Adami

I had a sinus infection again because my cancer was coming back. My oncologist said, “You can’t get CAR T-cell therapy with an active infection,” so I went to my ear, nose, and throat specialist. I explained, “I need to get this treatment, but I can’t do it with an active infection.” He called his scheduler and said, “Clear the schedule tomorrow. I have an urgent patient.” They operated on me the following day and it ended up being a major surgery with general anesthesia because there were so many blockages everywhere. He cleaned me out and got rid of the sinus infection so I was good to go.

About a month before you get your cells back, they do apheresis. They harvest your T cells. It’s a very easy process that takes half a day outpatient. The courier ships your bag to the CAR T company, which happens to be down the highway in LA. I remember the courier came to pick it up in the apheresis center and I said, “Do not let my cells fall out on the freeway. Please make sure the van door is tightly sealed.” He said, “Don’t worry. We’ll get it there, Laurie. No problem.”

CAR T-cell therapy is about an 18-day process. They shaved off a couple of days and shortened it even more, so the patient didn’t have to wait that long. They take your cells, put the target on them, and grow them in the lab. They harvested about a million cells from me and after they became CAR T cells, there were a billion cells that would get infused.

Before you get your CAR T cells, you go through lymphodepleting chemotherapy, which is chemo light compared to the 18 cycles that I had. It makes room in your bloodstream for you to get your CAR T cells back and gives them room to expand. After three days of lymphodepleting, you get the cells back on day zero, your CAR T birthday. It was amazing because, within days, the tumors were shrinking.

FDA-Approved Bispecific Antibodies for Follicular Lymphoma

Tiffany: Are bispecific antibodies available to patients outside of a clinical trial? Is there anything we can use now straight from a pharmacy without having to go to our investigational one?

Dr. Martin: Two bispecific antibodies are approved for follicular lymphoma: mosunetuzumab and epcoritamab. There probably will be a third one very soon called odronextamab. They’re all pretty similar in terms of how they work and the proteins they target on the surface of the B cells.

There are more coming that we will continue to see in lymphoma and across all cancers. They’re all administered in the clinic or the hospital, so these are not pills that you take at home the way a lot of cancer therapy has transitioned. They’re administered either through an intravenous injection or a subcutaneous injection.

Why are Bispecific Antibodies Administered in the Clinic or Hospital?

Tiffany: Is there a reason for that? Is it because we want to watch for any side effects immediately or is it because of the toxicity and potency of the drug itself?

Dr. Martin: A little bit of both. These are big proteins. They have to be administered by needle because they have to bypass the gastrointestinal tract.

There are some side effects. The side effects that somebody might experience during the infusion are minimal. That said, somewhere in the range of hours to even a couple of days after the treatment, there can be cytokine release syndrome, which happens in up to a third of patients getting these antibodies.

Cytokine release syndrome sounds complicated, but… it’s very manageable.
Dr. Peter Martin

Cytokine release syndrome sounds complicated, but it’s what I described. T cells secrete these chemicals, the same chemicals you experience when you have an infection, including fever, feeling rundown, muscle aches, and what you feel when you have the flu. But in some cases, it can be a little bit more severe. Not very common, but it can happen. We’re often able to manage it with acetaminophen. Sometimes we have to use steroids, like dexamethasone, and rarely do we even have to use other medications.

Because of that, there’s very careful preparation at the facility level, the physician and nursing level, and the patient and caregiver level. It’s all about preparation, helping people to know what to recognize and what to do if something like that happens. It’s very manageable, but it’s a little bit more complicated than taking a pill.

Side Effects of Bispecific Antibodies

Tiffany: Patients are concerned about side effects in general and we know when it comes to cancer, a lot of these drugs are toxic, even though we’ve drastically reduced that over time. In your experience, how do bispecific antibodies differ from traditional chemotherapy and CAR T-cell therapy in terms of side effects? Are they more severe, less severe, or not as long? And does the impact on quality of life determine which avenue they want to take for their treatment?

Dr. Martin: It’s not such a straightforward question to answer because everybody’s different and everybody’s situation is different. Where better-tolerated treatments might be appropriate for one person, more aggressive treatments with more side effects might be appropriate for another person. In most cases, we have options among all of these and oftentimes, there are no wrong or right answers. We try to pick one, but in some cases, we’re driven to say this is the right answer. It’s the job of the whole team — the patient, the caregiver, the physician — to try to pick the right treatment.

Where better-tolerated treatments might be appropriate for one person, more aggressive treatments with more side effects might be appropriate for another.
Dr. Peter Martin

Bispecific antibodies are straightforward in that they can be administered in an outpatient setting or at least partly in an outpatient setting. They don’t cause a lot of the side effects of traditional chemotherapy, like hair loss and nausea, which aren’t major issues with a lot of chemotherapy that we use, but we’re understandably scared of them. Hair loss is a particularly interesting one in that it’s a signal to the rest of the world about something you’re undergoing privately. It tells them publicly that something’s going on, so I understand why that’s not attractive.

Personal Experience with Side Effects

Tiffany: It’s important to get a patient’s perspective regarding side effects. Laurie, can you give us an overview of your experience with side effects? Were there any that you found particularly taxing on you or that affected your quality of life? Were you able to manage your symptoms relatively well?

Laurie: It was a mixed bag. With the first chemo, I lost my hair and got mouth sores. With the second treatment, which was a targeted therapy, I was very, very fatigued. I also lost my hair. They told me that it wasn’t from the trial drug, but when I dug into it, I saw a very small percentage of patients lost their hair.

White counts typically would get depleted, which made me prone to getting infection… so I was a real early adapter of mask-wearing.
Laurie Adami

My fourth treatment was radioimmunotherapy and I had very, very low counts for a long time. My platelets dropped. I never had to get an infusion of platelets, but I had to go in every day to get it checked. I had to be very careful not to fall because I had no clotting ability with low platelets.

White counts typically would get depleted, which made me prone to infections, so I had to be careful. When I went back to work after my first chemo treatment in 2006 and had to start traveling again, I asked my oncologist, “Is it okay if I travel to New York, Boston, London, etc.?” She said, “Yes, but you have to wear a mask,” so I was a real early adapter of mask-wearing.

Precision Medicine as an Approach to Follicular Lymphoma

Tiffany: Something that was also talked about at ASH (American Society of Hematology annual meeting) in general is the idea of precision medicine and how it’s a relatively new approach to cancer treatment. Is precision medicine being used as an approach to follicular lymphoma? What are your thoughts on precision medicine?

Dr. Martin: It depends how much of a fan of science fiction you are. To some degree, we’ve always practiced precision medicine. What do I know about this lymphoma? What do I know about this person? What do I know about all of the different treatment options? How do I put it all together?

Over time, treatments are becoming more specific in some ways, so you can apply them under certain circumstances. Our ability to understand more about cancer changes with new technologies. We’ve always been trying to personalize medicine in the sense of sequencing the entire genome of a cancer cell and saying this is the right treatment for you according to lab testing, but we’re not there yet for follicular lymphoma.

Over time, treatments are becoming more specific in some ways, so you can apply them under certain circumstances.
Dr. Peter Martin

There’s one treatment, a pill called tazemetostat, which has modest activity but is generally well-tolerated. It’s an inhibitor of an enzyme called EZH2, which is mutated in about 20% of people with follicular lymphoma. It’s approved for the treatment of people with mutated EZH2 enzyme, but it’s also approved for people with wild-type unmutated EZH2 if they don’t have other treatment options. Realistically, it works reasonably well in both groups, so it’s a precision medicine approach, but you don’t necessarily have to have the mutation to use it. That’s the closest we have right now, but this is coming. It will continue to change and there are other examples where we’ll see more of that.

Long-Term Implications of Chemo-Free Treatments for Follicular Lymphoma

Tiffany: I know you can’t read the future, but what do you think the long-term implications may be for follicular lymphoma, specifically for chemo-free treatments? What I hear a lot is that I’m living with cancer, not that I have cancer. What do you see with that in terms of chemo-free treatments?

Dr. Martin: People with lymphoma want treatments that work and are well-tolerated. Whether you call them chemotherapy, immunotherapy, or something else, if it works and is well-tolerated, that’s already great. They also want options that conform to where they are in life.

Different treatments that work in different ways have the advantage of potentially allowing us to mitigate some of the short-term and long-term issues that can come up.
Dr. Peter Martin

Every year, we have more and more options available to us. We always try to pick the right treatment for that moment, thinking about the here and now. We also try to think about how what we do today impacts what the patient’s life is going to be like 10 to 20 years from now.

More than chemotherapy, these new treatments potentially have a lesser impact on the body in the longer-term setting. With multiple lines of chemotherapy back to back, people will get through them for decades without major issues but over time, it catches up. Different treatments that work differently have the advantage of potentially allowing us to mitigate some of the short-term and long-term issues that can come up. Having more options is always better.

Clinical Research and Follicular Lymphoma

Tiffany: Both of our backgrounds are heavy in research. I like to talk about clinical research anytime I do a program to get the point out there because oftentimes, people think that a clinical trial is one of their last resorts, they’re not at least getting a standard treatment, or they’re not getting treated at all for their cancer. I know that at Weill Cornell Medicine, you have a robust research program. What does your research program look like and how receptive are your patients to joining clinical trials?

Dr. Martin: I appreciate your disclosure that we both come from a research background, so people should take that into account knowing that we have those biases. The number one barrier to entrance into clinical trials is not patient refusal. It’s because they don’t know that there’s an opportunity. The real burden is having physicians let patients know that this is something that they could do, not patients saying that it’s something they don’t want to do. It’s us. We’re probably the bigger part of the problem.

There are different reasons why somebody might want to participate or not want to participate in clinical trials. They offer new opportunities to access new treatments that might be more effective or better tolerated. In some cases, that might be when other treatments have been exhausted, but in a lot of cases, it might be when a new opportunity has already been well-studied in another setting and you’re looking to apply it in a new setting. There are also some downsides to research, a little bit more of a hassle often.

Tiffany: I’m a proponent of decentralization. Patients can get labs locally without having to track things like that. I’m a little biased when it comes to clinical research, but I do think it has so many benefits, so I’m always promoting it.

Dr. Martin: It can’t be understated that historically, there have been a lot of questionable research practices that were not always in the interest of participants. The medical community on the whole has tried to grapple with this. We’ve got multiple committees, like hospital and patient advisory committees, which try to minimize that and make research as ethical as possible.

There are going to be some people who are distrustful, which is their prerogative. I’m never the person who’s going to twist somebody’s arm to participate in a study that they’re not comfortable with, but I’m also not going to shy away from proposing a study because I’m afraid that somebody is not going to go for it. That’s not respectful to their autonomy either. You propose every option that exists and talk about the pros and cons then people will decide what’s right for them.

Tiffany: Absolutely. I always say too that we don’t give patients enough credit. We always talk about patient education. They need to know that clinical trials are out there and they’ll be more than willing to make that informed decision themselves.

Fertility preservation is also a highly charged issue, but it’s like research: if you don’t talk about it, people don’t have the opportunity to consider it.
Dr. Peter Martin

Fertility Preservation and Follicular Lymphoma

Tiffany: Something that is less talked about in general when it comes to cancer is fertility preservation. An abstract I saw at ASH talked about fertility. For younger patients with follicular lymphoma, does that discussion come up? From what I saw from the abstract, a lot of patients don’t bring it up. They don’t want to discuss it. What has your experience been in terms of having a fertility discussion with your follicular lymphoma patients?

Dr. Martin: Fertility preservation is also a highly charged issue, but it’s like research: if you don’t talk about it, people don’t have the opportunity to consider it. It’s important from the physician’s perspective to ask people about where they are and what they’re thinking about, but it’s also something that patients should advocate for themselves if it’s something they’re thinking about.

In general, follicular lymphoma happens as we get older, but a significant number of people get follicular lymphomas while they are younger and some of those may be considering having children in the future. We’ll get away from the reasons why somebody might choose to have or not have children in the setting of cancer; that’s a whole other complicated discussion.

It needs to be discussed early so that we can think about all of the treatment implications now and longer term, and how we sequence things.
Dr. Peter Martin

Many big hospitals, including Weill Cornell Medicine and NewYork-Presbyterian, have fertility teams that help people consider all of their possible options and how to preserve fertility. Fortunately, even the chemotherapy regimens that we typically use in follicular lymphoma don’t have a major impact on fertility and a lot of the newer treatments have no impact on fertility. The caveat is that you don’t necessarily want to be treating the lymphoma when somebody’s pregnant, although that becomes necessary in many cases and, depending on the treatments used, it often turns out to not be a problem either. It needs to be discussed early so that we can think about all of the treatment implications now and longer term, and how we sequence things.

Tiffany: Thank you for saying that. That’s a conversation you want to have whether you are considering children or not. If you’re younger and considering children, advocate for yourself. If your physician doesn’t bring it up, don’t be afraid to bring it up.

Bridging the Gap Between Academic Research Centers and Community Hospitals

Tiffany: In my experience talking to patients, they don’t get their diagnosis until after they see their primary care physician or go to the emergency room for something different. Because you’re from a large research center, you have multidisciplinary teams, which many people don’t have. They could be going to their community clinic. Patients may not know to go to an academic research center because they haven’t been referred to a specialist. Do you work with any community clinicians or community hospitals? What are your thoughts on working with community doctors to bridge the gap?

Dr. Martin: Even in New York where we have multiple academic medical centers, the majority of people with cancer are managed outside of those academic medical centers, so that’s a reality that we have to acknowledge. I also work in Brooklyn a couple of days a month. People must have access to medical care in their community.

We have to bring better medical care to the communities that people live in rather than vice versa.
Dr. Peter Martin

It took me a few years to come to this conclusion, which is embarrassingly slow, but it’s probably not fair to expect people and their caregivers to travel a couple of hours to see somebody when they have access to medical care in their community. We have to bring better medical care to the communities that people live in rather than vice versa. There are a lot of excellent oncologists practicing in communities and that’s where the majority of people can and probably should receive their care.

One caveat I’ll say is that all of cancer is becoming increasingly complicated, so I don’t think that people should feel uncomfortable seeking a second opinion. I have friends who work in community medicine throughout the whole tristate area in New York and I work with them and help them to manage their patients. Telemedicine has made that easier as well.

This is where patient advocacy comes in. You have to advocate for yourself and speak up about it. If your physician is uncomfortable with that, that might be a sign that they’re thinking about more than your best interests. You’ll find that almost all academic oncologists will encourage second opinions. I certainly do that and help arrange them when I can.

It comes down to a balance. What do you get out of it, what do you have to give to get that benefit, and is it worth it?
Dr. Peter Martin

Key Takeaways from ASH

Tiffany: The ASH annual meeting is a big conference. Was there anything for you that stood out?

Dr. Martin: Bispecific antibodies are going to be a major part of treatment for follicular lymphoma. Exactly how they fit in, which line of therapy, and which combinations get used is interesting to think about. They’re not going anywhere for a while, so that’s pretty cool.

Another interesting study that came out was a late-breaking abstract looking at tafasitamab combined with lenalidomide and rituximab. This was a randomized controlled trial that showed that the addition of tafasitamab to lenalidomide and rituximab improved time to progression. Effectively, it doubled it compared to lenalidomide and rituximab, which is probably one of the more common second or third-line treatments for follicular lymphoma, so that’s a pretty significant benefit.

In some ways, it’s a no-brainer to say that’s something we should do. On the other hand, tafasitamab is a little bit of a hassle. People have to come into the clinic frequently for it, so it’ll be interesting to see where this plays out everywhere. I don’t necessarily know how I’m going to use that information. Again, it comes down to a balance. What do you get out of it, what do you have to give to get that benefit, and is it worth it? But it’s a strikingly positive trial.

Tiffany: I’m going to be following that trial as well.

Conclusion

Tiffany: Thank you so much for this engaging and insightful conversation. I always learn something on the other end of these educational programs.

Dr. Martin, thank you for taking the time to speak with us at The Patient Story. It was so good to catch up with an old colleague and know that we both have remained dedicated to improving cancer care and finding a cure. I’m optimistic about the future as long as we have physicians and researchers around like Dr. Martin.

Laurie, thank you for sharing your story. Lived experiences are very personal and I’m forever grateful to patients who are open and transparent because I believe that it helps the next person and the next patient.

It’s so important to be empowered so that you and your caregivers can make informed decisions about your care. That includes being educated about the latest treatment options for your cancer.

Thanks again to our sponsors, Genmab and AbbVie, for their support of our independent patient program and to our promotional partners. Until next time and on behalf of The Patient Story, thank you.

Demystifying Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies

Hosted by The Patient Story

Thank you to The Leukemia & Lymphoma Society for their partnership. The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.

Special thanks again to Genmab and AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.

Follicular Lymphoma Patient Stories

Hayley H., Follicular Lymphoma, Stage 3B

Symptoms: Intermittent feeling of pressure above clavicle, appearance of lumps on the neck, mild wheeze when breathing and seated in a certain position
Treatments: Surgery, chemotherapy

Courtney L., Follicular Lymphoma, Stage 3B

Symptoms: Intermittent back pain, sinus issues, hearing loss, swollen lymph node in neck, difficulty breathing
Treatment: Chemotherapy

John S., Follicular Lymphoma, Stage 4

Symptom: Swollen lymph nodes

Treatments: Clinical trial, chemotherapy

Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4

Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen

Treatments: Chemotherapy, targeted therapy, radioimmunotherapy

David K., Follicular Lymphoma, Stage 4 Symptoms: Sharp abdominal pains, frequently sick, less stamina Treatments: Chemotherapy, immunotherapy, radiation, clinical trial, autologous stem cell transplant

Tags ASH 2024, Bispecifics, CAR T-cell, Fertility Preservation, follicular lymphoma, follicular lymphoma event, non-hodgkin lymphoma event, side effects

Lung Cancer Patient Events

The Patient Exchange: Improving Diversity in Clinical Trials

Post author By Katrina Villareal
Post date December 19, 2024
No Comments on The Patient Exchange: Improving Diversity in Clinical Trials

December 19, 2024

The Patient Exchange: Improving Clinical Trial Diversity

Edited by: Katrina Villareal

The Patient Exchange: Improving Diversity in Clinical Trials

Hosted by The Patient Story

Take part in a transformative conversation with five Black patients as they share their personal journeys navigating clinical trials. This program tackles cultural and social barriers head-on, offering insights on starting discussions with your doctor, understanding enrollment, and overcoming mistrust and misinformation. Learn why cancer clinical trials are not so much about placebos but about “getting tomorrow’s medicine today,” and gain the knowledge to make informed decisions for your health.

Watch the Replay!

Take part in a transformative conversation with six Black patients as they share their journeys navigating clinical trials. This program tackles cultural and social barriers head-on, offering insights on starting discussions with your doctor, understanding enrollment, and overcoming mistrust and misinformation. Learn why cancer clinical trials are not so much about placebos but about “getting tomorrow’s medicine today” and gain the knowledge to make informed decisions for your health.

Know how to bring up clinical trials with your doctor. Understand the screening and enrollment process. Listen to real patients discuss their clinical trial experiences. Help dispel the myth of placebos in cancer clinical trials. Overcome mistrust, lack of info, and other traditional cultural barriers.

Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
Clinical Trials Knowledge
Clinical Trial Screening Process
Receiving Treatment on a Clinical Trial
Placebo-Controlled Clinical Trials
Measuring Expectations on a Clinical Trial
Side Effects on Clinical Trials
Bridging the Clinical Trials Gap
Conclusion

This great conversation is a true discussion where we can talk about barriers in the African American and Black community and the hesitation that some of us often feel when we want to go on a clinical trial.
Tiffany Drummond

Introduction

Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a care partner began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding reliable information to support her care, so I am committed to helping others avoid similar difficulties.

At The Patient Story, we create programs to help you figure out what comes next. Think of us as your go-to guide for navigating not only the cancer journey but your overall health journey. From diagnosis to treatment, we have you covered with real-life patient stories and educational programs with subject matter experts and inspirational patient advocates and guests. I truly am your personal cheerleader here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.

Before we get to our speakers, we want to thank our sponsor Johnson & Johnson for its support, which helps us host more of these programs for free to our audience. The Patient Story retains full editorial control over all content as always. We also thank all of our promotional partners for their support, allowing our programs to reach the audience who needs them. I hope you’ll find this program helpful, but please keep in mind that the information provided is not a substitute for medical advice.

You may be wondering: what exactly is diversity in clinical research and why is this so important? Diversity in and of itself is vast in terms of what it means in specific settings. We’re going to focus on the experiences of Black patients. For instance, when we look at cancer and chronic conditions that increase the risk of developing cancer, Black people, who make up 14% of the US population, have a higher incidence and mortality rate.

Research is going to be paramount in understanding and eliminating this disparity, yet only 5 to 7% of Black patients are clinical trial participants. The panel you’re about to meet is representative of those who go on clinical trials. The conversation is going to be one that I hope resonates with everyone within and outside the Black and African-American community to help move research and development forward and be made accessible to all.

This great conversation is a true discussion where we can talk about barriers in the African American and Black community and the hesitation that some of us often feel when we want to go on a clinical trial. This conversation is going to resonate with us, especially in the Black and African American community because we don’t often talk about it, except when we’re thinking about the mistrust and other things that we’re going to get into throughout this conversation.

I had a bad taste in my mouth about clinical trials because my dad joined them and they didn’t work for him.
Gwen

I have with me current and former clinical trial participants, incredible panelists, and patient advocates. I also have with me Tony Williams, who is with The Patient Story as our head of diversity and inclusion and also a diffuse large B-cell lymphoma survivor. We also have Gwendolyn, a cervical cancer survivor, and Shyreece, a non-small cell lung cancer survivor. Because not all clinical trials are cancer-based, I have LaTisha, Latasha, and Cayla who were on clinical trials or at least screened for clinical trials for uterine fibroids, a chronic condition.

Clinical Trials Knowledge

Tiffany: If you’re familiar with The Patient Story, often we talk about the medical aspect of the patient story and experience, but what I want to talk about is getting to the point of clinical trials.

Cayla, how did you first learn about clinical trials? Was it through a healthcare provider or were you already well-versed in this space? What was that experience like for you?

Cayla: My mom was diagnosed with uterine fibroids and she learned from her gynecologist about a clinical trial that was going on. I didn’t even know I had fibroids. I was diagnosed at the trial and followed up with my healthcare provider, so it opened my eyes to my diagnosis.

The Patient Exchange - Improving Diversity in Clinical Trials

Tiffany: Tony, what about you? Were you familiar with clinical trials before you started this journey?

Tony Williams: I’ve always been familiar with clinical trials, stemming back to the Tuskegee experiment and Henrietta Lacks.

When I was diagnosed in 2021 with stage 4 DLBCL, my front-line treatment was R-CHOP, which wasn’t as successful as we needed it to be so I relapsed. At the time, CAR T-cell therapy was being developed, but it wasn’t available for my type of cancer, so I waited about 4 or 5 months before CAR T-cell therapy became available for me. Participating in that clinical trial was a giving back and a next stage for me. My first and second line of treatments failed and that’s how I fell into it.

Tiffany: Shyreece, what about you? Were you always familiar with clinical trials or was this something that happened when you started your cancer journey?

Shyreece: I was ignorant about what cancer was and what clinical trials were. It wasn’t my world when I was first diagnosed in 2014, but I’m happy to be living now for over 10 years with active cancer.

I first heard about the clinical trial through a team of doctors when I was initially diagnosed. One oncologist said you need resources to have clinical trials in your local clinic. She didn’t have access to it. I needed to accept my diagnosis and the intravenous chemo that was given to me. I stayed one month with her and then decided to get a second opinion from the University of Michigan, where I had more options.

I moved to California and in 2022 at Stanford University, I had no idea that the mutations from the targeted therapy would no longer respond to any treatment, so they started popping up and growing. My doctor, whom I greatly respect and trust, said for two years that he looked out for a trial for me. They worked to get it to their hospital so that I could try it. I’m currently on it and I’m doing well. The tumors are disappearing. I’m excited to look at possibly another 10 years of living with a deadly cancer.

Tiffany: That is a perfect story to share because you went from not knowing what a clinical trial was to knowing medical terms and things that you didn’t know before, and that is inspirational at best. Gwen, did you know what a clinical trial was? How did this come into your purview?

Gwen: My father was diagnosed with lung cancer. I had a bad taste in my mouth about clinical trials because my dad joined them and they didn’t work for him.

Going into any treatment, you’re always going to have apprehension, but it’s the next step and you’ve come this far. Participating in a trial was a no-brainer for me.
Tony Williams

Clinical Trial Screening Process

Tiffany: Tony, can you share your experience about the screening process itself? Was it stressful for you? Did you feel supported?

Tony: My first two lines of treatments failed. Because I was at UNC Chapel Hill Medical Center, they offer a lot of different types of screenings and trials, so I was part of a university program that they were working on. UNC is a teaching hospital and because my oncologist was heading that up, it was easy for me to be screened. I didn’t have to go through anything. It was a matter of deciding if I wanted to participate. It was that easy.

You always have that anxiety because you never know. Whatever you’re participating in, you want to see the desired result at the end, which is to be made whole and healed. Going into any treatment, you’re always going to have apprehension, but it’s the next step and you’ve come this far. Participating in a trial was a no-brainer for me.

Tiffany: That brings up a point about where to go to access clinical trials. Oftentimes, it is going to be a large academic research center, but not everybody has access to that. There are local sites as well. We have to get that knowledge to the community about where these sites exist. Going to a larger research center like UNC, you will get comprehensive care.

LaTisha, when you were going through the screening process, did you have any hesitancy? More importantly, were there any barriers for you, like with transportation? Did you have to travel far? What was the experience like for you?

LaTisha: I’m in the hospitality industry, so it was hard to sync my schedule. I had to wait a little longer than anticipated to go to my first appointment to get the initial information on everything I needed to do, so that was pretty hard. It was around 15 miles away and I don’t drive, so those were barriers for me when I first started the screening process.

Tiffany: Thank you for being transparent. Those are barriers that exist and can prevent you from going on a clinical trial. Maybe you are eligible, but you can’t get there. With trials, you tend to have to go more often than you would for your standard care because it’s more comprehensive and they’re doing a lot of data collection. I know the medical community, especially the research community, is looking into how they can build in these added costs that affect participants’ ability to join the trial.

Receiving Treatment on a Clinical Trial

Tiffany: This conversation is specific to the Black and African American community participating in clinical trials, so hesitations and mistrust come into the intervention itself. For participants who received an investigational drug, starting with Shyreece, what can you tell me about the information you received when you were told about the clinical trial and what your treatment was going to be? Did you feel like you were a test subject or guinea pig when they were giving you the information?

Shyreece: ALKOVE-1 is a clinical trial studying NVL-655 for patients with advanced ALK-positive non-small cell lung cancer, which I’ve had for over 10 years. For someone to come and tell me after fighting that long that they’ve got something for me is incredible.

My doctor said, “I’ve been watching your cancer. I’ve been watching you and getting to know you, so I think that this is good for you.” The doctor-patient trust was already there because I trusted him along the journey through other things that he was doing. He said, “We’re going to counteract your cancer this way. We’re going to try this, slow it down, but the resistant mutations are always going to pop up, but I got something for you. We’re going to wait.”

He was trying to get his clinic ready to receive all of the resources needed to accommodate me in that trial as much as they could. I asked about transportation and all those barriers because I would have to go every week. It was an investigational drug, but I’m a power horse, so if there’s hope attached to it, then I’m going to try it. I’m not influenced by culture. I’m influenced by my trust in God and my doctor.

I can’t speak for everybody. If you don’t have that connection and trust with your doctor, I say find another one. I had no problem with going into the NVL-655 clinical trial because it was fully explained to me. I knew what the risks were. They sent the information to me by email and I had a month before I signed the consent form. I was very well informed and I knew that he was waiting on that trial for me. When the study coordinator gave me her cell phone number, I knew I was going to be in good hands.

It was an investigational drug, but I’m a power horse, so if there’s hope attached to it, then I’m going to try it.
Shyreece

Placebo-Controlled Clinical Trials

Tiffany: Here’s the question that’s going to need some unpacking, especially in the Black and African American community. When it comes to treatment, we don’t understand placebo, especially when it comes to cancer and chronic conditions. Before I get into that, to clarify, what are your thoughts on placebo-controlled clinical trials?

Gwen: After someone tells you that you have 15 months to live, you’re at the point where you accept whatever you can do to stay alive and to see your grandchildren grow up. You’re going to do whatever you have to do. I knew I had some more living to do. She said, “You have to trust the team. You have to trust God first and then you have to trust the medical team,” and I trusted MD Anderson.

I met my doctor at a retreat by a cervical cancer organization called Cervivor. She was a doctor at MD Anderson and I was going to another hospital at the time. I used to be a case manager, but I was having so many issues as a case manager that I needed a case manager.

At the retreat, I was crying to her. I said, “They don’t care about Black women. They don’t care about the women in my community.” She looked at me and said, “I care. Call me when you get back.” She has been true to her word. I reached out to her and said, “I need to know some things about clinical trials.” Her team reached out to me. It’s all about trust.

Tiffany: What often happens is when you go on a clinical trial, you get more comprehensive care. They want to know if the study drug or new combination is working for you. Maybe it doesn’t, but it may work for the next person. These experiences are what this program is about because when it comes to clinical trials, we don’t often get to see that experience. We only get to read about it or hear about the bad things that happen. Cayla, do you have any thoughts on placebo-controlled clinical trials?

Please note that the use of placebos in cancer clinical trials is very uncommon. In nearly every case, cancer clinical trials compare a new treatment or combination of therapies to the existing standard of care, rather than a placebo.
The Patient Story

Cayla: Automatically, you go in and say, “I’m going to try this and I’m going to be healed.” That’s the positive aspect, but not everyone is getting the medication. You don’t understand that a placebo has to be in effect. Try to do as much research as you can and reach out to the staff or someone you have a rapport with on the team. They can’t tell you if you’re getting a placebo because you might drop out. You should go in there knowing that you might receive the placebo and the next person next to you might receive the medication. Who knows? The person may receive the treatment and yet not have it work for them.

The Patient Exchange: Improving Diversity in Clinical Trials

Hosted by The Patient Story

Watch the Replay!

For anyone on a clinical trial, you will never not get anything. That is unethical. If you go on a clinical trial, you are at least going to get the standard of care for your condition.
Tiffany Drummond

It’s all about research and trying to understand as much as you can. There’s a lot of information out there and it discourages everyone from trying to be a part of the trials. People use verbiage that a lot of the people in the community don’t understand. Instead of explaining in-depth, the staff members look at us wondering why we don’t know. I’m a little 50-50 with the placebo. I’m proud of the trial, but I understand why the placebo is needed.

Tiffany: I’m glad you said that. This is what I always drive home. For anyone on a clinical trial, you will never not get anything. That is unethical. If you go on a clinical trial, you are at least going to get the standard of care for your condition. You’re never not going to get that.

What may happen is they give you the standard treatment in addition to whatever investigational drug they’re researching or a placebo. Oftentimes in our community, we think that they’re not giving us anything. This is the last resort, so we’re getting a placebo. This isn’t true.

You can ask. If you’re going into an office and they’re offering you a clinical trial, ask, “What’s the minimum I’m going to get? Am I going to get treated for my condition?” No matter what it is, whether it’s a headache or diabetes. “What is my alternative?” They should tell you in the consenting process what your alternatives are and the options that you’re going to be getting on the trial.

I didn’t want to have surgery. I wanted the bleeding to slow down or stop. That was what I was going to the trial for.
LaTisha

Measuring Expectations on a Clinical Trial

Tiffany: LaTisha, when you went on the clinical trial, what were your expectations? What were your thoughts on what you wanted to happen? Were you realistic about whether or not it will work?

LaTisha: I wanted to be more informed. I knew I had had fibroids for a long time. I was trying to figure out what my other options were. I didn’t want to do the surgery at all, so this would have been an option to not have surgery. However, they didn’t have the resources to see where my fibroids were, so she wasn’t able to see exactly where they were. I didn’t know they could be in multiple places. I didn’t want to have surgery. I wanted the bleeding to slow down or stop. That was what I was going to the trial for. I did not want to have the surgery at all.

Tiffany: Did you enroll or were you considered a screening failure?

LaTisha: I was enrolled. I had to do samples. They kept trying to do the ultrasound. They would tell me to come at different times of the month, but she could only do the vaginal ultrasound. She couldn’t send me for an MRI or anything that wasn’t part of the screening process. I probably went for about three months. When they couldn’t get the imaging that they needed to get, then that’s when I had to stop.

Tiffany: What about you, Latasha? Are you still on a clinical trial or are you done? Would you consider going on another one?

Latasha: I’m at the beginning of a clinical trial. When I started my endometriosis journey a couple of years ago, my fibroids were small. Then it got to a point where they started to bother me so much and I was hurting, so I had them removed.

I didn’t want to have surgery either, but when they say they need to remove something that’s not supposed to be there, I’m all for it. It gives me a better chance to regroup and allows the researchers to see how fast the tissue is growing or how much the lining of the uterus is accumulating each month. They’re able to start tracking what they couldn’t see before the fibroids started growing or the uterus started thickening. It’s hard to go by what everybody else says because they have some good points about the placebo.

Side Effects on Clinical Trials

Tiffany: Oftentimes, we’re afraid of the unknown and when I say we, I’m talking about the Black and African American community and with valid reasons. Tony, when you were on a clinical trial, did you experience any adverse effects? How did the side effects differ than when you were on standard therapy?

Tony: Anytime you’re diagnosed with cancer or any other disease, there’s a level of faith that you have to have and that will be activated during your journey. You’re going to believe in God, but you’re also going to believe in the medicine that God can work through.

Undergoing CAR T-cell therapy was terrible. I had a very aggressive chemotherapy regimen, but CAR T-cell therapy was worse because it was coming off a clinical trial and I was getting that as a second-line defense. The procedure that I had to go through was a lot of trauma to the body, with the extracting of my blood, taking it to a lab to get it re-engineered, and giving it back to me. I have received the worst chemotherapy that they have and that didn’t solve this, but I kept my faith knowing that at the end, I’m going to see this through.

One thing I never asked during my journey and until now was why. Why not me?
Tony Williams

When I did CAR T-cell therapy, that previous six-month period when I got chemo, they gave me that in three days. I felt like I was seeing death. Darkness came over me because it was so aggressive. My body was in shock. I recall the first day that happened, I was out of sorts. The second day, I passed the chapel and said, “I can’t do this,” but I knew I could and I did.

It was very hard, but one thing I never asked during my journey and until now was why. Why not me? Why can’t I be the one to help somebody get through this? I made it through the chemo on CAR T-cell therapy, but it was unknown. I was afraid, even though I didn’t admit it.

You have to exist in a reality that’s not there for you but where you’re going to exist because if you exist in the right now, you will not get through it. You have to exist in a realm that’s beyond where you are. It was very challenging and tough. Not knowing if it was going to work was even more excruciating because you knew what you had already been through.

I never felt like a guinea pig. I felt like it was necessary. The way that drugs come to the market now is not like it was back in the time of Tuskegee or Henrietta Lacks. They have to do what they can to bring the drug to the market. When you join a clinical trial, like Tiffany said, you are getting the best of what they have because they want that to succeed. You are a frontline participant of the best of what they have.

It was traumatizing. It was excruciating and painful. Parts of me wanted to doubt, but when you’ve come this far, what do you have to lose? God has already proven that He’s with you. When they give you a ticking clock and say you have one to three years left and you passed that, what do you have to lose except to continue to believe? That was my mentality.

Tiffany: As a caregiver to someone who did not go on a clinical trial but knew about clinical trials, I understand that some of these drugs are toxic, whether they come to the market or not. Gwendolyn, when you go through that on a clinical trial, does it make you doubt? Am I doing the right thing or is it like Tony said, like you know it’s going to be hard, but you’re going to push through? What was your experience?

If you want to send somebody to talk about clinical trials, send me. I’m alive today first because of God, but second because of the clinical trials.
Gwen

Gwen: So much of what Tony said is so true. Radiation and chemo kicked my butt. I had every side effect on the list. I knew I was a fighter, but I was leaning against the ropes and I wasn’t standing anymore. I want to live.

I tried everything. When you’re fighting stage 4, all of your family and friends have the remedy. Everybody called me saying, “Eat right. Don’t eat meat. Juice. Do nothing but herbs.” I was everybody’s guinea pig. In the Black community, everybody has a remedy, so I said let’s go. If you’re stage 4, you’re already getting a beating, so let’s try something new.

The crazy part about it is when I tried clinical trials, they put me on steroids too because mine was in my bones, so I gained weight and got stronger. I tell people all the time that I’m a walking billboard now. I’m alive because of a clinical trial. If you want to send somebody to talk about clinical trials, send me. I’m alive today first because of God, but second because of the clinical trials. I was dying from radiation and chemo. I had three strokes and two heart attacks. I’m on team clinical trial. You can’t tell me anything different.

Tiffany: Experiencing side effects when you go on these trials isn’t talked about a lot, not realizing that you can have these same side effects with drugs that are on the market as well. Shyreece, I want to hear your experience as well. When you were going through your treatment on the clinical trial, did you ever reach a point when you thought about whether this was the right thing to do or you should think about going off? What was that like for you?

Shyreece: Muscle myalgia was big for me in the initial stage of my diagnosis. It was so bad that I had cramping and abdominal pain. I even got C. diff at one stage of my journey. It was so bad that on Christmas day, I had to go into the hospital for two weeks to be treated.

I love mustard greens. Thanksgiving was coming up and I cooked some ahead. I ate a couple of bowls and it tore me up. I had to lay down, cramped. Sometimes you have to change some of the natural things that you’ve been doing every year. The side effects can come out of the blue. You don’t even know when they’re going to hit you. I nurtured myself until I felt better. That’s how I roll when it comes to side effects.

I’m at a place where I stay surrendered. If I’m going to do the trials and treatments, I have to stay surrendered and resilient. I’ve always believed in God. I’ve always believed in Jesus. But when I got diagnosed with cancer, I thought, “What did I do wrong? Oh, I need to forgive somebody.”

When I went to Stanford, they issued an NCCN Distress Thermometer, a survey that assesses your well-being from week to week by the time you come into your clinical appointment to see where your psychological state of mind is at. Fighting cancer is as much mental as it is physical. How did a cough turn into stage 4 lung cancer? When I cough now and clear my throat, I say, “Wait a minute.” I’ll cough and then tell myself, “Self, don’t you over cough. Self, cough just enough. Self, get you some water.” I have to talk to myself like that. It may sound crazy, but it works for me.

I also tell myself that I was created. I had to read the Word for myself. I love everybody in my faith community, but I had to get deeper into finding a purpose as to why I’m still here. I’m not going anywhere until I have done everything that my Creator has prepared for me to do.

With that being said, I take that power and mental state of mind, get to know my team, and pray. What should I be doing? Who should I be doing it with and where? I’m at Stanford. The people who I’m working with are those particular people. I am present. I am all in. If and when I do decide whatever treatment I’m going to do, I don’t attach any cultural baggage to it because I know it comes from a place of fear and I can’t live in fear. I have to trust today. I have to trust God today and the people of today. If I don’t trust who I’m around, it’s not going to work anyway.

Tiffany: Cayla, LaTisha, and Latasha, for your clinical trials, what did they tell you was your intervention?

Cayla: They had to confirm that I had fibroids to be on the trial. They asked a set of questions to see if I qualify. I got to a certain point and they told me there was nothing they could do. They needed more resources.

An MRI confirms how big the fibroids are and their location. Fibroids can enlarge the uterus and it can be on the uterus, behind the uterus, and in different locations, so they weren’t too sure. They knew I had them, the size, and how many, but they didn’t know where they were. They told me to count how many sanitary napkins I was going through. I kept a log of how often I had to change and how often I had to take anything for pain management. They wanted to make sure before they gave an intervention.

You had to see them more. They had to collect samples. My intervention was to make sure I controlled it. With any disease, diet is important. Are you exercising? Are you a smoker? Do you drink alcohol? These have an effect. I would say they contributed to the intervention as well. I didn’t take medication to assist me. I did the non-pharmacological method.

Tiffany: What this shows is that when we say intervention, people automatically think it’s a drug and that’s not true. They could be collecting data. Oftentimes, what we don’t understand collectively as a community is that the data that we’re looking at is not representative of the people who it affects the most. With conditions that disproportionately affect Black and African Americans in high incidence and mortality, we’re never going to find an answer about why it’s happening if we don’t get data from the people it’s happening to.

Go to where we are. Use layman’s terms, simple language in a nice brochure, and put them in common places
Shyreece

Bridging the Clinical Trials Gap

Tiffany: You all have been passionate in your answers and that spreads more message than someone reading something that they don’t understand. These are shared experiences. What can we do to bridge the gap to make clinical trials less fearful?

Shyreece: We’re the ones who can best spread the message. Go to where we are. Use layman’s terms, simple language in a nice brochure, and put them in common places, like supermarkets, churches, and predominantly underserved schools, where the demographic is mostly Black. Leave some literature with visual representation so they can be easily read. Include information about the screening. Don’t be afraid to speak a little faith language to get on the inside and let them know that you care.

Tiffany: I believe that our life experience is our expertise and sharing that is going to make the difference. I talk about clinical research to anyone. If they’re listening, I want to promote it. These are things that we want to understand because we’re always asking why. Why us? Why are we always getting this? No one can ever give us an answer. The only way we’re going to get that is to look at data.

I believe that we as African American people have a lack of awareness overall about our health.
Tony Williams

Tony: What I have found over my travels with The Patient Story and being the head of diversity is to stress overall health awareness. When you go to the places that Shyreece mentions — our churches and civic centers, where we gather — cancer is not the one single modality. There is always something attached to it, like high blood pressure, high cholesterol, or diabetes.

I believe that we as African American people have a lack of awareness overall about our health. Cancer manifests itself, but something else is manifesting. If we can get to the root that, we take care of ourselves overall and you will not see the manifestation of a lot of these things.

Everything is tied to what you put into your body. Limit exposure to garbage. Overall awareness and pushing that initiative is the first place to start. Cancer is one of many. We all have that in common, but that’s not the only thing. We’re being taken out by heart attacks and other health issues too. Cancer didn’t have a chance to pop up because the heart attack got you first.

Tiffany: Usually, you’re seeing your primary care for everything and that’s the person who’s going to give you the workup that’s going to say something’s not right. How can we be more self-aware and advocate for ourselves to say, “Doc, what else is out there?” We know there will be barriers, like transportation, childcare, and having to leave work, which is a deal breaker for many people because they don’t have the means to do that.

I had to put myself out there and start a fundraiser… If I’m doing this and willing to do this, how can I encourage someone who may not have the skill set?
Shyreece

Shyreece: When I realized that, I had to put myself out there and start a fundraiser. It’s so humbling and so vulnerable, but I wanted to do it and I had to go first. I couldn’t wait for the reimbursement from the sponsor, so I had to put a plan together and execute the plan.

There’s so much preparation involved. If I’m doing this and willing to do this, how can I encourage someone who may not have the skill set? Let’s talk about that and be very transparent. Everybody may not have the skill set and the resources. How do you encourage them? Where can we have a list of resources? Where are these places to get support? How do you handle rejection? I powered through it. Everybody doesn’t have that support system. How do we encourage those things first?

I tell my story because this is my community and where I grew up. Start where you are.
Gwen

Gwen: Cervivor trains us. Even though I have cervical cancer, that doesn’t mean that I’m trained to speak to the community. Before I can do that, I have to know the facts and when I’m speaking, I have to give them the truth. I can’t talk off the top of my head.

Before I even knew I had cancer, I started a cancer organization in memory of my father. I go around the low-income Black and Hispanic communities. I go with MD Anderson now because now we have a relationship. I tell them to leave their white coats at home and be in jeans and tennis shoes. We want them to have a comfortable conversation where they’ll open up to you.

When I go out there, I bring in resources because I can’t go in there and tell you to get screening and not have help for you. I can’t leave you out there by yourself. We have to have more of that going on. We have to get out there.

I tell my story because this is my community and where I grew up. Start where you are. Cervivor told me that my story matters. They gave me confidence, so I’m out there now telling my story and we can have that conversation. I partner with schools, business owners, and churches. We need to go to the important places in the community.

Shyreece: Amen. I wrote my book for that reason. I started in my church. Start where you are.

Conclusion

Tiffany: I want to thank every single one of you. You all have made an impact in this conversation. I’ve learned about things that I did not know, so thank you so much for being willing to share with me and The Patient Story. Your experiences are going to resonate with a lot of people.

If you’re in medical school, you’re seeing the same stats that we’re seeing. You’re reading it, but we’re living it. You can understand better and get a bigger picture about why it’s so important that we participate in these clinical trials that can literally save lives.

What an electric and energizing conversation for sure. It doesn’t take much for me to talk about clinical research. Sharing the room with Tony, Gwendolyn, Shyreece, LaTisha, Cayla, and Latasha was icing on the cake. It is important to be empowered so that you and your caregivers can make informed decisions about your care.

Thanks again to our sponsor, Johnson & Johnson, for its support of our independent patient program and to our promotional partners.

The Patient Exchange: Improving Diversity in Clinical Trials

Hosted by The Patient Story

Watch the Replay!

Special thanks again to Johnson & Johnson for supporting our independent patient education content. The Patient Story retains full editorial control.

Lung Cancer Patient Stories

Chris Draft

Background: Chris' wife Keasha passed away from stage 4 lung cancer one month after they married. He's been a passionate lung cancer advocate ever since.
Focus: Leading with love, making connections to grow lung cancer community, NFL liaison

Rhonda & Jeff Meckstroth

Background: Jeff was diagnosed with stage 4 lung cancer and given months to live, but his wife, Rhonda, fought for a specialist that led to biomarker testing and better treatment options
Focus: Education of biomarker testing for driver mutations, patient and caregiver self-advocacy

Terri C., Non-Small Cell Lung Cancer, KRAS+, Stage 3A

Symptoms: Respiratory problems
Treatment: Chemotherapy (cisplatin & pemetrexed), surgery (lobectomy), microwave ablation, SBRT radiation

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)

Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B

Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Tags all cancer event, clinical trials event, patient events

Colon Colorectal Patient Stories Treatments

Lindy’s Stage 4 Colon Cancer Story

Post author By Katrina Villareal
Post date December 17, 2024
No Comments on Lindy’s Stage 4 Colon Cancer Story

February 4, 2025

Lindy’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Lindy was diagnosed with stage 4 colon cancer when she was two months postpartum at age 34. During her pregnancy, Lindy experienced severe abdominal pain, changes in bowel movements, blood in her stool, and significant discomfort, all of which she initially attributed to pregnancy. Unbeknownst to her, these symptoms were indicative of colon cancer, which was eventually discovered during a routine full-body MRI for a previous benign brain tumor and spinal tumor.

Doctors identified malignant cancer had spread to her colon, lymph nodes, liver, and lungs. The shock of her diagnosis came at a time when Lindy was navigating the challenges of new motherhood. She took an active role in researching her diagnosis, and while the news was overwhelming, it helped her process the information before meeting with her oncologist.

Lindy’s treatment began swiftly with chemotherapy in January following her December diagnosis. Although surgery was not considered an immediate option due to the cancer’s spread, chemotherapy has been her primary treatment. She transitioned to maintenance chemotherapy, as her body responded well to the treatment with minimal side effects. While she still experiences some numbness from neuropathy, she considers herself fortunate for not facing more severe symptoms.

Throughout her experience, Lindy has been grateful for her medical team, who never dismissed her concerns despite her young age. While colon cancer is typically seen in older individuals, Lindy’s case is part of a growing trend of younger people being diagnosed with the disease. This has prompted her to encourage friends and family to undergo early screening.

Lindy is realistic about her prognosis, understanding that while her cancer is not curable, it is treatable, and she remains hopeful for potential advancements in treatment. She has made practical preparations for the future while focusing on enjoying life with her son and husband. Lindy’s strong support system has helped her navigate both motherhood and cancer.

Lindy emphasizes not spiraling into despair. Instead, she encourages others to seek out a supportive care team, possibly including palliative care to manage pain symptoms, and to focus on living in the moment. Lindy’s outlook remains positive, bolstered by the progress she’s made and the hope for future treatment developments. Despite the challenges, she is determined to live as fully as possible, enjoying time with her loved ones.

Name: Lindy A.
Age at Diagnosis:
- 34
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Symptoms:
- Blood in stool
- Changes in bowel movements
- Pencil-thin stool
- Severe abdominal pain
- Loss of appetite
- Rapid weight loss
- Anemia
- Fatigue
Treatments:
- Chemotherapy

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Lindy!

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Understanding Biomarkers in Lung Cancer

Post author By Katrina Villareal
Post date December 15, 2024
No Comments on Understanding Biomarkers in Lung Cancer

NSCLC Biomarkers Jill Feldman and Dr. Lovly Interview

December 15, 2024

Understanding Biomarkers in Lung Cancer

Discussion: Jill Feldman & Dr. Christine Lovly

Edited by: Katrina Villareal

Jill Feldman lost her mom, dad, aunt, and two grandparents to lung cancer, so she researched the disease and advances in treatment and became an advocate to help save lives from the #1 cancer killer in the country. And then her life completely changed again with her own diagnosis.

Her mission now is to get that research to every cancer patient out there, including topics like the importance of lung cancer biomarkers.

The long-time lung cancer patient and advocate sits down with Dr. Christine Lovly, one of the top lung cancer specialists in the U.S., to ask the questions she believes will help change lives.

Thank you to Lilly for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
What are Biomarkers?
The Importance of Biomarkers in Lung Cancer
Testing for Biomarkers
Not Everyone Has a Biomarker
How Does Biomarker Testing Get Brought Up with Your Team?
Advice on Talking to Your Doctor
Having a Biomarker Without An Approved Therapy
The Hope in Lung Cancer
Conclusion

What we try to do as doctors is figure out what happened to make a normal cell in your body become a tumor cell.
Dr. Christine Lovly

Introduction

Jill Feldman: I’m a lung cancer patient and advocate. I was diagnosed with lung cancer in 2009. I’ve had quite a journey with different treatments, but thanks to research, I’m sitting here today.

We are joined by Dr. Christine Lovly, a physician-scientist at Vanderbilt-Ingram Cancer Center. Her clinical practice and research focus primarily on the care of patients with lung cancer.

Dr. Christine Lovly: I’m so grateful for the opportunity to connect and have this conversation.

Jill Feldman: Dr. Lovly, when you started, lung cancer wasn’t where it is now. Hope wasn’t associated with and wouldn’t have been used in the same sentence as lung cancer, so that’s what makes it even more remarkable.

Dr. Christine Lovly: We have unbelievable advancements in lung cancer. It’s incredible how fast the field is moving right now and that’s good because the need is high. This is the number one cause of cancer-related deaths in the US. Anyone is at risk for lung cancer.

What are Biomarkers?

Jill Feldman: We both have had a front-row seat to the evolution of biomarkers, which has led to this revolution of advancements in research and treatment, allowing patients to live longer and better.

Biomarkers can be found in tissue, blood, and other bodily fluids, and they’re used to diagnose a disease to determine how aggressive a disease is. Sometimes they can predict how the cancer will respond to treatment, but when we talk about lung cancer, what is biomarker testing? What are biomarkers and why are they important?

When we say biomarker, we’re saying, how did the DNA, the RNA, and the proteins change?
Dr. Christine Lovly

Dr. Christine Lovly: Nobody wants to be in a cancer clinic, no matter how lovely the people you meet, like your doctors and nurses. Nobody wants to be there. We all recognize that and have huge empathy for that. When you’re in a cancer clinic, you immediately start to learn that there’s a whole new vocabulary associated with the world of cancer and one of those words is biomarker. Let’s relate it to something that makes sense in common everyday life before we get into the science.

When you build a house, you need a blueprint, which is a map of how the house is going to be built. A blueprint is how architects design the house and how they figure out all the different components, like the roof, walls, rooms, plumbing, etc.

The cells in your body, including tumor cells, are very similar to that. There is a map of how those cells are made and how they act in your body. Those maps are the DNA, RNA, and protein. You need to have a blueprint to build a house. You need to have DNA, RNA, and protein to build a tumor cell.

Biomarkers look at those elements: the DNA, the RNA, and the protein. They are the architecture of the tumor cell. What we try to do as doctors is figure out what happened to make a normal cell in your body become a tumor cell. Cancer is our bodies gone wrong. It’s not something foreign. It’s our body where the blueprints have changed. When we say biomarker, we’re saying, how did the DNA, the RNA, and the proteins change? And can we detect those changes to help us pick a better therapy for our patients?

Jill Feldman: It’s hard for people to grasp that. I like that you use an analogy that everybody can relate to and emphasize the difference between inherited or germline biomarkers that are present in our DNA and all of the cells in our bodies and what’s called acquired or somatic mutations, which are biomarkers found only in cancer. They cannot be passed down to your children that we know of now. We are looking at some inherited biomarkers. We’re doing research in that area for lung cancer. We are not there yet, so the biomarkers we are talking about are the DNA, the RNA, and the protein of the cancer cell.

Dr. Christine Lovly: Exactly right. In the overwhelming majority of cases, the biomarkers that we’re looking at are something that’s changed during your lifetime and not something you’re born with. Something changed to make a normal cell become a tumor cell. The biomarkers we measure are not something that you’re born with and not something that you pass on to your children and grandchildren, but something that’s changed for a variety of reasons, some of which we don’t understand honestly, that’s caused a normal cell to become a tumor cell.

The Importance of Biomarkers in Lung Cancer

Jill Feldman: How do you test for biomarkers and why are they important in lung cancer specifically?

Dr. Christine Lovly: We’re not doing all these tests because it’s an area of academic interest. We test for biomarkers in tumors because it helps us pick the right therapies. For example, if you have biomarker A, then you get drug A, or if you have biomarker A, you don’t get drug B.

It’s important when we talk about precision medicine or personalized medicine. Lung cancer biomarkers are at the heart of driving personalization of care. We’re talking specifically about cancer, but other areas of medicine have biomarkers to help select therapy as well, so this is not exclusive to cancer.

In the context of cancer and lung cancer specifically, we’re looking for biomarkers because they help us pick the right therapy for our patients to deliver personalization of care and that’s important. There are decades of experience teaching us that we can become more refined in how we treat lung cancer when we look for these biomarkers. The goal is to put more treatment options available on the table for our patients because none of us want to say that there are no options for treatment.

Biomarkers are at the heart of driving personalization of care.
Dr. Christine Lovly

We want to be able to deliver treatments in the most precise way based on the characteristics of the tumor. That’s the goal, but there are other circumstances where biomarkers play a role. Sometimes we use them to help with prognosis, which is not the same thing as picking a therapy. But for the context of this discussion, we’re going to say we’re looking at biomarkers because we’re trying to pick a therapy for our lung cancer treatment algorithms.

Testing for Biomarkers

Dr. Christine Lovly: There are different ways to test for biomarkers and this area is evolving as well.

Let’s start with the tumor biopsy. When patients get a diagnosis of lung cancer, we have to do that biopsy by looking at whatever the abnormality is, like a mass in the lung. They take a piece of it and look at it under the microscope.

The traditional way is to look for biomarkers in the tumor specimen. You grind up the tumor and extract the building blocks: the DNA, RNA, and protein. There are ways to measure each one of those building blocks.

More recently, there’s been an explosion of technology where we can sometimes find circulating pieces of tumor in the blood. The majority of the time, we’re talking about pieces of circulating tumor DNA in the blood. This is a very rapidly emerging and evolving field. The technology is changing monthly to refine technologies for what we call circulating tumor DNA or ctDNA.

It does not replace having a tumor biopsy. A tumor biopsy is still necessary. It can help us to find the biomarkers, but not every patient has circulating tumor DNA. If we find it, it can help us make treatment decisions, but it is not exclusive. Tumor testing and blood testing to find ctDNA in the blood are complementary and not exclusionary of each other.

Not Everyone Has a Biomarker

Jill Feldman: I want to touch on a very sensitive topic in the community, which is the science behind lung cancer biomarkers and targeted therapies, matching the right treatment with the right person. It is exciting and I understand why it’s exciting, but a large number of people don’t have biomarkers or there isn’t information found, but that doesn’t mean that there isn’t necessarily a biomarker or there isn’t a great treatment option. Can you expand on that a little bit?

Dr. Christine Lovly: This is an important point. We don’t want to set the expectation that every single patient with lung cancer will have a biomarker. In the bounds of this conversation, it’s hard to get into all the details needed to understand these biomarkers. There are conferences where people spend days talking about all the different biomarkers—the DNA biomarkers, the RNA biomarkers, and the protein biomarkers—and we would need to talk about each one of those separately.

Let’s take the scenario of DNA biomarkers. Right now, there are about 10 DNA biomarkers in lung cancer that have matched therapies that are FDA-approved. Ten approved therapies are a lot for cancer, but not every lung cancer patient is going to have one of those. That doesn’t mean anything good or bad. It simply means that maybe there isn’t a DNA-matched therapy for that lung cancer patient, but there are other tools we can use, like chemotherapy and immunotherapy.

Everyone with lung cancer should have a tissue sample to do staining for PD-L1, which is a marker we use for immunotherapy. There are different levels of biomarker testing.

Right now, there are about 10 DNA biomarkers in lung cancer that have matched therapies that are FDA-approved.
Dr. Christine Lovly

Jill Feldman: That is important. When I was first diagnosed in 2009, they had recently started testing for two mutations. What was interesting about that was I was originally stage 1 and I was going to do chemotherapy after surgery as adjuvant therapy because I was young, had a family history, and my kids were little. Even though it was minimally beneficial, I needed to do everything in my power.

Everyone recommended that I do biomarker testing. All of a sudden, chemotherapy might not be the right option. It might be this targeted therapy. Taking targeted therapy as adjuvant therapy was one of the best decisions because the cancer kept coming back. Maybe it slowed down the growth of the cancer or prevented it from metastasizing. The information or the lack of information is needed to guide it, so it’s incredible.

Dr. Christine Lovly: You mentioned no information and to clarify, no information in the context that Jill is using means you had biomarker testing, but none of the biomarkers were detected. No information means you had the test, but none of the biomarkers were found. That is very different than not having the test at all. It’s incredibly important to have testing done.

How Does Biomarker Testing Get Brought Up with Your Team?

Jill Feldman: How does the conversation about biomarker testing get started?

Dr. Christine Lovly: There are multiple different ways to do the testing. Different companies can do the testing and there are different ways that different health systems do the testing. The endpoint for every patient should be the same, which is getting tested. How do you get to that end? It’s going to vary based on where you’re getting your care.

Who orders the actual biomarker testing is different from place to place…The most important take-home message is the endpoint should be the same.
Dr. Christine Lovly

It’s very common for patients with lung cancer to have a team of doctors. I’m a medical oncologist, so I’m the doctor who gives chemotherapy, immunotherapy, and targeted therapies. You may also be seeing a thoracic surgeon, a doctor who cuts out lung cancer. You may be seeing a radiation oncologist, a doctor who gives radiation to help treat lung cancer. You may be seeing a pulmonologist, a doctor who is specialized in doing procedures like bronchoscopies where they put a tube down your throat to help get a biopsy of the tumor.

There are doctors who you don’t even meet, like pathologists who look at the cancer under the microscope and radiologists who read your CT scans and MRIs. There’s a huge team of people who are thinking about every single patient’s case and bringing it together to come up with the best plan for every individual.

Who orders the actual biomarker testing is different from place to place, so I can’t say how everyone does it, but I can say how we do it at my center. Sometimes I’m the one ordering it. Sometimes it gets what we call a reflex, where the biopsy will be done and the pathologist will reflex the order, which means they’ll put the order in before I even see the patient.

The most important take-home message is the endpoint should be the same. The patients should get biomarker testing. This is a discussion that ultimately is going to be one that your oncologist has with you because we’re the ones prescribing the biomarker-directed therapies.

If you have your list of questions in advance, people leave feeling more empowered afterward, like you’ve checked all the boxes and addressed all the questions you wanted to address.
Dr. Christine Lovly

Advice on Talking to Your Doctor

Jill Feldman: People always ask me: when should I start talking about it? How do I start talking about it? I always say that the most important question to ask is: was biomarker testing done? If it’s before taking a biopsy or before surgery, make sure biomarker testing will be done. If people are hesitant or don’t even know where to begin, what would be your advice on how and when to bring it up with their doctor?

Dr. Christine Lovly: It’s fair to ask: is my tumor going to get tested for biomarkers? Whoever you’re meeting with, chances are that the doctor is talking to the other doctors on the team as well. If they can’t answer it, then they will refer you to another doctor on the team.

My bigger advice would be to write down your questions. What happens so commonly is when you go to a doctor’s visit, the time feels very short, and it can feel very overwhelming. If you have your list of questions in advance, people leave feeling more empowered afterward, like you’ve checked all the boxes and addressed all the questions you wanted to address. There’s a huge comfort in saying you entered with all your questions and you left with all of your questions being answered to the best of the ability of the doctor or care team.

Jill Feldman: Communication is key.

Mutations in DNA act the same way. One little change in one little letter of the DNA changes the way the DNA reads.
Dr. Christine Lovly

Having a Biomarker Without An Approved Therapy

Jill Feldman: Because of the rapid advancement, you have biomarker testing. If you have a biomarker with an approved therapy, then there are steps that doctors are supposed to follow and you’re put on that particular therapy.

What happens if there are biomarkers found, but there isn’t an approved targeted therapy for it? Those can be called different things on the reports and it’s always a source of anxiety. What does that mean? If you could talk about clinical trials in this context, that would be great.

Dr. Christine Lovly: Jill mentioned a word that’s an important word that we haven’t gotten into, but it’s a cousin of the word biomarkers and that word is mutation. Biomarker testing looks for mutations. What is a mutation? A mutation is simply the word that we use for the change that happens in the DNA.

If I say DNA, which is the blueprint of our cells, the DNA reads like a sentence. If I tell you a sentence, “The big dog ran,” you would understand that sentence. It makes sense to us all. If I change one letter in one word, like if I change d-o-g to d-i-g, it becomes, “The big dig ran.” The sentence doesn’t make sense anymore. That little change changes the word dog to dig and changes the sentence.

Mutations in DNA act the same way. One little change in one little letter of the DNA changes the way the DNA reads. That’s what we’re looking for when we look for mutations in DNA. It’s as simple as that. It’s changing the way the DNA reads and the sentence doesn’t make sense anymore. It’s not what it was intended to be. That’s what a mutation is.

I’ve lived with lung cancer for 15 years and I’m alive because of these advancements. I have benefited from them.
Jill Feldman

The Hope in Lung Cancer

Jill Feldman: My family history illustrates hope, progress, and everything that we’ve talked about with lung cancer. When my parents were diagnosed, they had three treatment options: chemotherapy, radiation, and surgery. The benefits were often minimal and the treatments were worse than the cancer itself.

I’ve lived with lung cancer for 15 years and I’m alive because of these advancements. I have benefited from them. I have benefited from targeted therapies and I’m grateful for that, but we still have a long way to go. What’s your take on the future? What do you see as being most promising and hopeful for people?

Having novel treatments, especially treatments that can activate your body’s immune system to keep the cancer at bay, will be incredibly important.
Dr. Christine Lovly

Dr. Christine Lovly: If you think about any aspect of our lives, how things are now versus five years ago, 10 years ago, and 20 years ago, things are vastly different. When I was a kid, there was no Internet and now we’re completely dependent on it. The possibilities are amazing. There is a world in our lifetimes where cancer will be a chronic, treatable condition similar to other diseases, like diabetes, hypertension, and HIV. I don’t think that’s out of the realm of possibility. How do we get there? There won’t be one solution. It’ll be many and it won’t be medicines alone.

Lifestyle factors are hugely important. We don’t talk about it enough. I’m certainly not an expert in diet or exercise, but this is incredibly important. Primary prevention and screening are incredibly important. How do we screen for lung cancer or any cancer? Are we going to be able to prevent every single cancer?

Having novel treatments, especially treatments that can activate your body’s immune system to keep the cancer at bay, will be incredibly important. We already see this. I see this in my clinic every day. Patients have dramatic responses to therapies that activate their immune system to fight cancer. It’s remarkable.

There is unbelievable hope in the future for this dreadful word we call cancer, for lung cancer and other cancers. There’s still a long way to go and a lot of work to be done, but we have so much optimism that we will get there.

Jill Feldman: I’m grateful for the hope you provide.

It takes one candle to light a dark room. Light one candle and see how many are lit from that candle.
Jill Feldman

Conclusion

Jill Feldman: Thank you for joining us, Dr. Lovly. It was so wonderful to have this conversation with you. Thank you for the hope that you provide to patients and families.

Dr. Christine Lovly: Thank you so much. There’s nobody better to host this than you. You inspire people around the world and are so beloved by the lung cancer community and the cancer community in general, so thank you so much for all of the inspiration you give us.

Jill Feldman: Thank you. My mom used to say that it takes one candle to light a dark room. Light one candle and see how many are lit from that candle. That’s why I keep going.

It’s not easy, but it’s okay to not be okay. There are days when I don’t want to get out of bed. There are days when I feel like I can conquer the world. With where I am now in my advocacy, I didn’t get here overnight. It’s been years. I’m not always okay and that’s okay, as long as we keep moving forward. That’s my why, but at the end of the day, my real why is my family.

Special thanks again to Lilly for supporting our independent patient education content. The Patient Story retains full editorial control.

Lung Cancer Patient Stories

Terri C., Non-Small Cell Lung Cancer, KRAS+, Stage 3A

Symptoms: Respiratory problems
Treatment: Chemotherapy (cisplatin & pemetrexed), surgery (lobectomy), microwave ablation, SBRT radiation

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B

Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Tags lung event, lung events

Essential Thrombocythemia MPN myelofibrosis Patient Stories Stem cell transplant Treatments

Andrea’s Myelofibrosis & Essential Thrombocythemia Story

Post author By Katrina Villareal
Post date December 8, 2024
No Comments on Andrea’s Myelofibrosis & Essential Thrombocythemia Story

December 8, 2024

Andrea’s Myelofibrosis & Essential Thrombocythemia Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

When Andrea was 50 years old, she heard the words no one ever imagines they’ll hear: “You have cancer.” It wouldn’t be the first time, either. Ten years later, Andrea learned her rare cancer, essential thrombocythemia, turned into a different one, myelofibrosis. Andrea made the difficult decision to have a stem cell transplant, which would later save her life.

Andrea and Denise share their journey through Andrea’s diagnosis of essential thrombocythemia, its progression to myelofibrosis, and the life-altering decision to undergo a stem cell transplant. Andrea offers insights into living with a rare blood disorder, participating in clinical trials, and embracing life post-transplant. Denise provides a heartfelt perspective as a care partner, highlighting the emotional and logistical challenges of supporting a loved one through treatment.

Together, their story underscores the importance of advocacy, resilience, and unwavering support in the face of adversity.

Name: Andrea S.
Age at Diagnosis:
- 50
Diagnosis:
- Essential thrombocythemia (ET), later progressing to myelofibrosis (MF)
Symptoms:
- Fatigue
- Anemia
Treatments:
- Targeted therapy: JAK inhibitor
- Blood transfusions
- Allogeneic stem cell transplant

Thank you to Karyopharm Therapeutics for supporting our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Table of Contents

Introduction
How My Essential Thrombocythemia Was Found
My Essential Thrombocythemia Morphed Into Myelofibrosis
Going to a Rare Blood Cancer Specialist
Being in a Clinical Trial
Bringing Up a New Clinical Trial to Her Doctor
Starting to Discuss a Stem Cell Transplant
Getting Ready for the Stem Cell Transplant
Overcoming the Fear
Life After the Stem Cell Transplant
Talking with My Doctors
More Hope for MPN Patients
How I’ve Changed

I felt young, vibrant, and energetic, and I had no symptoms, so I thought I’d get over this and it would be fine.
Andrea

Introduction

Andrea: My passion has always been sports in some way. I played rugby in Chicago. I have been riding a bike for as long as I can remember, which was made very difficult by my disease. I had to make some modifications. When it comes to this disease, modifications are the way of life.

How My Essential Thrombocythemia Was Found

Andrea: I didn’t have any symptoms. I was feeling great. Luckily, I had insurance, so I would go for a health checkup once a year to make sure everything was well. My doctor said, “Your platelets are a little high. I’ve been looking at the trend and I don’t like what I’m seeing. Why don’t I send you to a hematologist-oncologist?”

My platelet count was not as high. Normally, they don’t treat until your platelet count is 100,000 or more. I was at about 600. When I went to the hematologist-oncologist, he said, “They say not to treat this low, but I’ve had some bad experiences, so I would like to treat you.” I agreed. I felt young, vibrant, and energetic, and I had no symptoms, so I thought I’d get over this and it would be fine. I had no issues for 10 years.

I started feeling fatigued, but I blamed it on everything else, like not sleeping enough or not eating right.
Andrea

My Essential Thrombocythemia Morphed Into Myelofibrosis

Andrea: It was very slow and insidious. I started feeling fatigued, but I blamed it on everything else, like not sleeping enough or not eating right. I have a group that rides on Sundays, and we bike about 55 miles around the DFW airport. I was so fatigued that I had a hard time keeping up with the group. I said to my partner, who was riding with me, “Man, they are picking up the pace.” She said, “No, Andrea, I think it’s you.”

I went to my local doctor and told him that I didn’t know what was going on. He saw that my hemoglobin was going down. We tried different things and they didn’t work. He said, “You have to have a bone marrow biopsy. I can do it, but I think you should go to a center of excellence, like MD Anderson.”

Going to a Rare Blood Cancer Specialist

Andrea: It was scary. You walk in, and there are all sorts of people. This is going to sound strange, but while walking through the halls, I thought, “Hey, look at me. I’m healthy. Look at these poor people.” I was thinking that I was so lucky. I’m not in a wheelchair, nor do I look like I’m going to keel over. I’m walking to my appointment, so things can’t be that bad.

Dr. Verstovsek gave me plenty of time, talked me through what I could have, and told me the tests I was going to be required to take so they could give me a proper diagnosis, and then we’d see what would happen from there.

I had a bone marrow biopsy, which can be very daunting and scary, but I have a high threshold of pain. I’m the type who doesn’t need anesthetic when I go to the dentist, so I thought the bone marrow biopsy wasn’t a big deal. It was a little difficult in the beginning because you’re very tense and scared, but it’s easy.

When I got my diagnosis, he told me that there were several different things we could do. We can watch it, but at that point, the only thing they could offer was a clinical trial.

The fatigue was difficult, and I was working to push through it. It’s interesting how your body adapts.
Andrea

Being in a Clinical Trial

Andrea: I wanted to get better. It was a selfish motive, and it was also a pay-it-forward motive. I thought this disease was so rare that even doctors didn’t know about it. If I can contribute to the overall landscape, I’m happy to, as long as it doesn’t kill me or make me worse.

I was on two trials. The first one didn’t work at all. The second one worked for a while, but then it was so toxic to my system that we had to stop. I was having connective tissue issues, and it was causing all sorts of problems.

I was on another trial that didn’t make much difference. It didn’t make me sick, but it didn’t cure the anemia, which was my main problem. The fatigue was difficult, and I was working to push through it. It’s interesting how your body adapts. I was still going out and riding my bike, which wasn’t at the level I was before, but I wasn’t going to let it stop me.

Bringing Up a New Clinical Trial to Her Doctor

Andrea: I stopped the drug. I got acute back pain and shingles. They put me on another drug, and that didn’t work either. I met with a local transplant doctor around 2011, but we determined that I wasn’t quite ready for a transplant at that point.

It worked for me for six years. I wasn’t great, but I was better than I was. I felt much more confident and alive. You have a 5- to 6-year window, until death ensues, to be perfectly honest about it, and so I made sure that I was seeing people and living life as well as I could.

After six years, my blood count started to drop. I became transfusion-dependent. I was having transfusions first every two months, then every month, and then every three weeks. That’s when Dr. Verstovsek said, “I think it’s time we looked at a transplant.”

If you’re looking at transplant centers, being close to home is not that important. What’s important is the experience of the center, the support staff of the center, and your comfort level.
Andrea

Starting to Discuss a Stem Cell Transplant

Andrea: I went to see the local transplant doctor. We talked, and then I thought, “Maybe I should get closer to home.” I went to two local hospitals that claimed to be transplant centers. They do general transplants, but when I talked to them, one center told me they were very focused on the number of successes. They weren’t sure that I would be a good candidate and that I could ruin their numbers. I couldn’t walk fast enough out of there.

I went to another hospital, and they were very good, but I thought I needed someone who specialized in my disease. I’m not having an organ transplant. This is completely different.

I also learned that what’s important is not only the transplant doctor but the support staff. They’re the ones who are with you all the time. If you’re looking at transplant centers, being close to home is not that important. What’s important is the experience of the center, the support staff of the center, and your comfort level.

Denise: We knew that there was no cure for myelofibrosis. Since there were no options, we had no choice. It was either do the transplant or don’t and continue suffering. Her quality of life was suffering from anemia.

When we made the decision, she did a lot of research. She had a lot of conversations with other transplant patients. What was it like? How was the transplant itself? What was the care like? What’s important? There wasn’t a lot of information out there at the time. Through that, that’s when we said we have to do it.

I was taking my life into my own hands, and that’s what the scariest part was because if it didn’t work, I had nobody to blame except myself.
Andrea

Getting Ready for the Stem Cell Transplant

Andrea: Once I decided on MD Anderson, I felt great. You have to go to the hospital about a month ahead of your transplant date to get chemotherapy. The night that I was supposed to have chemotherapy, I texted my local doctor and Dr. Verstovsek and asked, “Should I do this?” Up to the last second, I was so scared. He said, “There’s nothing left. This is what you need to do.”

While it wasn’t easy, it was the best thing I ever did. I had to change a lot of things, but here I am.

Overcoming the Fear

Andrea: I didn’t know if it would work. Fortunately, my sister was my donor, and she was a 10/10 match. Prior to the transplant, I had my will set up and got all my affairs in order because I didn’t know if I’d live or not.

The scary part about it was that I was making the decision. I wasn’t in an accident. I wasn’t forced to do this. I was taking my life into my own hands, and that’s what the scariest part was because if it didn’t work, I had nobody to blame except myself.

Luckily, I had support when I came home. I don’t know what I would have done without my sister and Denise.
Andrea

Life After the Stem Cell Transplant

Andrea: I spent four months in the hospital. Luckily, I had support when I came home. I don’t know what I would have done without my sister and Denise. Denise handled all the medication. There’s no way I could have done it.

Slowly but surely, I got better, day by day, week by week. It was very scary. Am I always going to be like this? Am I always going to have a lack of energy? Is it my age, that’s why I can’t remember this? Is it my disease? You’re scared to death that you’re going to not make it, but if you hold on, you see it gets better.

At around six months, I went back to work. I knew I wasn’t performing at the level that I thought I should be. They never said anything, but I said it was time to go.

Talking with My Doctors

Andrea: The doctors came in once a week with 5 or 10 people. I didn’t have a lot of communication with the nursing staff, but they were incredible. They were there when they were supposed to be there. They were always available. Denise and my sister were both there. Denise kept a spreadsheet of all the medications. The staff could not have been more knowledgeable.

I got mouth sores in my throat. The only thing I could taste was Oreo cookies. It was very hard to walk. They had all these incentives. MD Anderson and the nurses did so much to encourage people because the last thing you want to do is eat or walk.

When my blood count started to increase, they could see that the stem cells from my sister were beginning to work. They had a party and cheered. It was very positive. I never felt like the nurse told me something just to answer me. If they didn’t know, they didn’t know, and they would come back with the answer.

If you let the disease get to you, it will. But if you fight it with everything going on, it is not a death sentence.
Andrea

More Hope for MPN Patients

Andrea: The area of MPNs is growing exponentially. When I had the disease, there were no treatments available. Now, there are FDA-approved treatments. It’s come an enormously long way. Don’t give up hope. Keep a good attitude.

Do your research. Don’t be a victim of the disease. Look at the disease as it is and fight for it. Fight for your life, whatever you have to do. Talk to friends. Talk to doctors and get different opinions. Don’t immediately accept what somebody says. Make sure you feel comfortable with whatever that is.

Denise: From my perspective, it was a big deal. She’s here. It was the right decision, and I’m so grateful. We’re all going to die someday, but now, you get to enjoy life fuller and enjoy the little things. We did it.

How I’ve Changed

Andrea: My identity shifted. I was much more guarded and careful. I didn’t let my emotions show nor speak about how I was feeling necessarily. I felt embarrassed about it.

I don’t feel that way anymore. It changed my life. It’s not a death sentence. It’s very hard when you start reading and doing your research. It’s changing every day.

Don’t give up. Don’t sit and say you’re going to die. I can’t emphasize that enough. Your attitude is who you are and who you’re going to be. If you let the disease get to you, it will. But if you fight it with everything going on, it is not a death sentence. You will make it.

Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Andrea!

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Together in Treatment: Strengthening Your Myeloma Care Team

Post author By Katrina Villareal
Post date December 3, 2024
No Comments on Together in Treatment: Strengthening Your Myeloma Care Team

December 3, 2024

Together in Treatment: Strengthening Your Myeloma Care Team

Edited by: Katrina Villareal

Together in Treatment: Strengthening Your Myeloma Care Team

Hosted by The Patient Story Team

The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Join myeloma patient advocate Michelle and her doctor and myeloma expert, Dr. Caitlin Costello, as they discuss what makes their patient-doctor teamwork truly effective.

The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Myeloma patient advocate Michelle and her doctor and myeloma expert Dr. Caitlin Costello discuss what makes their patient-doctor teamwork truly effective.

Learn how to build trust and open communication with your healthcare team. Understand the role of shared decision-making in multiple myeloma care. Hear first-hand experiences of navigating a chronic cancer with your doctor by your side. Discover practical tips for advocating for yourself or a loved one in the treatment process. Explore how teamwork fosters a supportive environment for long-term care.

We would like to thank The Leukemia & Lymphoma Society for its partnership.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Thank you to Sanofi for supporting our patient education program. The Patient Story retains full editorial control over all content

Table of Contents

Introduction
Initial Multiple Myeloma Symptoms and Diagnosis
Explaining Multiple Myeloma to Patients
Common Questions After a Multiple Myeloma Diagnosis
Getting Involved in the Decision-Making Process
Factors to Consider in Shared Decision-Making
Multiple Myeloma Treatment Journey
Coordinating Care with Multiple Healthcare Providers
Managing Patient Care From Afar
Importance of Quality of Life in Driving Treatment Decisions
Data That Looks at Quality of Life for Multiple Myeloma Patients
Approaching the Clinical Trial Conversation
Key Takeaways
Conclusion

Building Bonds Episode 1 - Patient-Doctor Partnerships for Better Waldenstrom Care

Introduction

Tiffany Drummond: I’m an advocate who has worked in cancer research for 20 years, but more importantly, I became a care partner advocate when my mom was diagnosed with endometrial cancer in 2014. Her journey led me to find out as much as I could to help with her care. Information wasn’t easy to find, so I’m honored to join The Patient Story in putting on programs to help people navigate life after diagnosis.

This program is hosted by The Patient Story, where we aim to help people navigate life before, at, and after diagnosis through empowering patient stories and educational discussions where we focus on how patients, caregivers, and their partners can best communicate with their doctors as they go from diagnosis through treatment with myeloma.

We want to thank The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists, to help you communicate with members of your healthcare team and provide information about treatment options.

We want to thank our sponsor, Sanofi, for its support, which helps us host these programs for free. The Patient Story retains full editorial control over all content. I hope you find this information helpful, but please keep in mind that this program is not a substitute for medical advice.

We have two special guests from whom we can learn more about the patient-physician partnership. We have Dr. Caitlin Costello, an associate professor of medicine at UC San Diego Health and a hematologist-oncologist specializing in blood cancers, including myeloma, lymphoma, and leukemia. We also have our patient advocate, Michelle, who is a multiple myeloma fighter and a survivor.

Together in Treatment - Strengthening Your Myeloma Care Team

Initial Multiple Myeloma Symptoms and Diagnosis

Tiffany: Let’s start back to your initial diagnosis. What was that experience like for you?

Michelle: I was diagnosed in 2016 at the age of 35. I had a five-year-old and a one-year-old at the time. The year leading up to my diagnosis, I had on-and-off back pain, which they said was because my muscles weren’t strong after having a baby. I was starting to lose weight, which they attributed to breastfeeding. I ended up having other symptoms that led me to go to the doctor more.

But then I ended up having severe stomach pain, which at times made me want to drive myself to the ER. I also ended up having itchy scabs all over my body. I went to the dermatologist and my general physician. They both started digging, and my general physician started ordering lab work, which eventually led to the diagnosis of multiple myeloma.

Tiffany: You knew in your gut that something wasn’t right. What did it take for you to advocate for yourself? And when you were referred to a specialist or a hematologist-oncologist, what was your initial experience like?

Michelle: My husband travels for work. was at home with my one-year-old and five-year-old when I was having stomach pains. I didn’t know what to do. I almost drove myself to the ER one day. I took a breath, pulled over, and the pain stopped. I called my doctor and told him he needed to see me the following day. I had already seen the dermatologist about the scabs all over my body. She looked into things and I didn’t know if any of my symptoms were related.

The doctor called and said, “You need to come in right now.” My husband was home, so we picked up our one-year-old and drove to the doctor’s office. My husband stayed with our one-year-old so I could listen to what the doctor was saying.

When we got home, we started making calls…. They all led us to Dr. Caitlin Costello… She fit me in right away, and we never looked back.
Michelle

He said, “You have multiple myeloma.” I asked, “Is that cancer?” He said yes, explained what it was, and sent me to a hematologist-oncologist in their group, who was not at UCSD then. They got me in that day, and the hematologist-oncologist did a bone marrow biopsy.

When we got home, we started making calls. I called my boys’ pediatrician, who I loved and whose opinion I valued, and we reached out to several other people. They all led us to Dr. Caitlin Costello, so we gave her a call. She fit me in right away, and we never looked back.

Explaining Multiple Myeloma to Patients

Tiffany: Doctors all explain myeloma differently, so Dr. Costello, how do you explain myeloma to your patients?

Dr. Caitlin Costello: For many people, when they hear of and think of cancer, they think of a lump, like breast cancer, or there are symptoms associated with a tumor. But when you’re talking about blood cancers, no tumor can be picked up on routine screening tests, of which there aren’t any for myeloma.

With more “typical cancers,” we’re so used to having public health initiatives for screenings like mammograms and colonoscopies. Multiple myeloma, however, while it’s the third most common blood cancer, doesn’t come anywhere near number-wise in terms of how many patients are affected in the United States each year. For that reason, for better or for worse, I don’t think we have good epidemiologic advances to say that everyone should have a blood test screening looking for this.

There’s ongoing interest in screening wide groups of populations. In Iceland, they’re screening the entire country for all patients over the age of 40 to see if they can figure out how many patients have what looks like the beginnings of multiple myeloma. And if they’re not myeloma at that point, they want to understand if it makes sense to screen patients.

Patients are going to live with this for the rest of their lives, so there’s no greater importance than understanding and knowledge.
Dr. Caitlin Costello

For the most part, that means that most patients are diagnosed with multiple myeloma when they develop a symptom of some sort. Many people have not heard of myeloma. When a doctor says to a patient that they have multiple myeloma, they ask, “What does that mean?”

When I describe multiple myeloma to a patient, I say, “What we have identified is a form of a blood cancer called multiple myeloma based on your blood tests and your bone marrow tests.” A lot of my consultations with patients are to explain that diagnosis because.

We have a wonderful problem with myeloma. This has turned into a chronic illness. Patients are going to live with this for the rest of their lives, so there’s no greater importance than understanding and knowledge so that patients know what it is that we’re talking about, know how to follow their blood tests, understand the successes of therapy or perhaps early signs of failures of therapy, and advocate for themselves.

There’s so much to say of the educated patient, which doesn’t mean Doctor Google. There are very good patient advocacy groups and platforms like The Patient Story, where patients can get great information to help them understand their disease and their journey with it.

When I explain myeloma, I explain that it’s a form of blood cancer that comes from a plasma cell, which is part of your immune system. The plasma cell is designed to produce the weapons needed to protect our body. The bone marrow is like the armed forces. We have an army, a navy, an air force, and all these different branches with different weapons designed to protect you. One branch went rogue when one plasma cell went rogue and started producing extra bad guy weapons that don’t work well and cannot protect the body and cause damage.

Bones are the most common way that myeloma can affect a person’s body, and therefore, that’s one of the most common ways that patients are eventually diagnosed because they come seeking help for pain. As Michelle experienced, back pain is one of the most common ones. We think the bones in the middle of our body are more often affected than elsewhere. The classic story is someone had back pain, their doctor did X-rays, but they didn’t see anything, or they were referred to physical therapy, but the pain got worse.

Everyone’s allowed to hurt, but pain that doesn’t go away, came on for no good reason, and is persistent needs to be evaluated. Michelle did all the right things because she had what we can say are typical symptoms with pain, some atypical symptoms with the skin and the belly discomfort, but she asked all the right questions to get her to the right people who could help her.

Common Questions After a Multiple Myeloma Diagnosis

Tiffany: I love that you talk about patient education. I believe that part of patient education is learning all the medical terms you probably weren’t familiar with before. How receptive are your patients in terms of wanting to learn all that? What are the top three common questions you get after someone is diagnosed with myeloma?

Dr. Costello: The top three questions are: How did I get this? What can I do to make it go away? Is it genetic?

Everyone wants to feel empowered that they can make some lifestyle change, for example, to make things better or help rationalize this to some degree to say X caused Y. It would be fair if there was some culprit, but it’s unfair because there is no culprit. We think this is a random thing that happened for no good reason, by no fault of anybody’s. Nature changed the makeup of your bone marrow and the part of your immune system.

Getting Involved in the Decision-Making Process

Tiffany: Michelle, when you first met with Dr. Costello and as she was explaining your treatment options, how involved were you in the decision-making process? What did that experience look like?

Michelle: Dr. Costello presented me with what the standard of care was for multiple myeloma at the time. I was very receptive. I sought a second opinion and reached out to another multiple myeloma specialist in the vicinity. She confirmed the same thing, so we went with what everyone was recommending.

Factors to Consider in Shared Decision-Making

Tiffany: Dr. Costello, when you approach your patients about their treatment options, what are your thoughts? How do you approach shared decision-making with your patients? What factors do you consider to help them come to that process with you?

Dr. Costello: Every person is different. People process information differently. People hear information differently. Some people want to know more, and some people don’t want to know more.

An important part of any conversation is to level set and say, “What do you want to get out of this conversation? What is it that you want to know?” More often than not, the patient has something in mind, and the family members have something different in mind. It’s important to gauge the group to determine what it is that they’re hoping to get out of the appointment so that I’m not overstepping boundaries.

Once we are able to establish how much will be shared, my job is to give the information. What is the standard of care? What is the typical approach? Once we’ve laid the groundwork, then we can determine treatment recommendations based on the patient and the details of their health, caregiver support, and the biology of their disease. Very specific details can make treatment recommendations slightly nuanced for any individual person.

My job is to help them be as informed as possible so that they can make the best decision for themselves.
Dr. Caitlin Costello

I love that Michelle got a second opinion. I have no ego. When you are diagnosed with something life-changing, you need to feel very confident in what your next approach is going to be. The more people think about you, the better. Like many myeloma specialists, this is what we do day in and day out, but it’s nice to have a fresh set of eyes so nothing’s missed. Yesterday’s information may have been different from a month ago’s research.

The approach is standard, but the shared decision-making is where things may be slightly different. I can make all of my recommendations and say, “This is what’s standard. These are the slight modifications I would make for you.” Sometimes, the patients will take that information and say, “I’ll get back to you.” Some people will say, “Let’s do this. Whatever you say, doc.” Some people will say, “No.”

I’m not in their body. I’m not making decisions for them. My job is to help them be as informed as possible so that they can make the best decision for themselves. I may not agree with their decision, but that’s not my job. My job is to help them arrive at the best decision that’s for them.

Tiffany: You said everything that I wanted to hear personally, especially when it comes to seeking a second opinion. For a lot of patients, especially if they like their physician in the first meeting, they feel like they’re turning their back on their physician. Thank you so much for encouraging patients to seek a second opinion.

Multiple Myeloma Treatment Journey

Tiffany: Michelle, where are you in your treatment journey?

Michelle: I did four months of the initial treatment regimen and went into an autologous stem cell transplant. Unfortunately, it wasn’t successful and the myeloma returned within the 100-day mark. We regrouped, went back on one treatment for the summer, regrouped again, and did a more aggressive approach.

The MRD testing at the beginning of 2024 showed that the myeloma was slightly coming back. It was affecting my quality of life and I was ready for something different, so we regrouped again. The doctors agreed that I could take the summer off. We did a repeat bone marrow biopsy, so I would have some initial data to compare against when I start my new treatment plan.

Tiffany: Did the pandemic affect your treatment at all?

Michelle: It gave me a lot of anxiety, but I had to be persistent. Even when everything closed down initially, we were on the phone asking, “Am I coming in?” She said yes, so I went in. I went in every other week all through the pandemic.

Coordinating Care with Multiple Healthcare Providers

Tiffany: When it comes to cancer, you have more than one healthcare provider. Your healthcare team is very vast. Is that specific to UC San Diego or do you have local providers that you also go to? You’re always receiving a lot of information, so how do you coordinate that among yourself and your medical team?

Michelle: I don’t live in San Diego anymore, so I have a local hematologist-oncologist in Sacramento where I now live. This is my disease and my choice. I’ve always sought second opinions, especially when making big decisions about changing treatment plans and what to do next.

Thankfully, the multiple myeloma world is small, so they all know each other. I’ve always been able to discuss with each physician. Even if I don’t agree with a treatment plan, I can seek a different opinion. They have been very kind and take into account my quality of life and what I would like.

Getting the information is best. I seek opinions, weigh out what I want to do and how the treatment is going to affect my life, especially with raising two active boys, what I can handle as far as raising them and having a great quality of life, and then make my decision of how I want to proceed based on their recommendations.

Managing Patient Care From Afar

Tiffany: Dr. Costello, for someone like Michelle who doesn’t live in your area, how do you approach seeing patients from afar? Is that something that you do? I had a conversation recently about how large academic centers are more specialized and how you share information with local providers who may not have the same knowledge that you would have. How does that work for you?

Dr. Costello: I don’t feel like Michelle gives herself enough credit. From everything that she said, while raising two young children amid a pandemic, I told her to jump, and she said, “How high?” She has such a commitment to her health and her family.

She got her care at UCSD where we have myeloma-dedicated physicians, but most myeloma patients are taken care of in the community. They see an oncologist, who is possibly a general oncologist who’s seeing them right after they see someone with breast cancer and right before they see someone with lung cancer. Often, they’re good with myeloma, but it’s hard to be a jack of all trades also, and that’s where the importance of a myeloma specialist comes in. I don’t know how they do what they do, seeing so many different cancers. I have difficulty keeping track of one, let alone all of them.

The importance of the connection between the community oncologist and the academic myeloma specialists can’t be underlined enough because we have different tools at our disposal.
Dr. Caitiln Costello

Myeloma is a team sport. Your team includes the patient, myeloma specialist, general oncologist, nurse navigator, nurse, and social worker. There’s a whole team of people who are trying to come together to hold hands with our patients to get them through this whole process.

I can’t speak for other places, but a lot of that can be a little insurance-driven, especially in California. Some insurers will require you to stay with your community oncologist and if that’s the case, the patients get referred for their stem cell transplant, CAR T-cell therapy, or whatever treatment we have to offer at the academic center that perhaps the local oncologist cannot offer. That allows us to maintain that relationship with our patients as well. I have a list of phone numbers of all my local community oncologists down here because we are constantly talking about our patients behind the scenes.

The importance of the connection between the community oncologist and the academic myeloma specialists can’t be underlined enough because we have different tools at our disposal. Myeloma is complicated. There are so many drugs, which is a wonderful problem, but that means that it can be complicated to understand which drug to use and in what order. The connection between the oncologist in the community and the myeloma specialist is absolutely paramount to navigate this whole thing.

I want to be well and healthy to see my boys’ future, and I want to do that with a great quality of life.
Michelle

Importance of Quality of Life in Driving Treatment Decisions

Tiffany: I used to be a caregiver, so I understand the importance of quality of life. Michelle, you were able to take some time off treatment. How important was your quality of life in driving treatment decisions?

Michelle: I want to be around for my children. That’s my top priority and however I’m going to get there, I will get there. I will cross that finish line no matter what it takes. I want to be well and healthy to see my boys’ future, and I want to do that with a great quality of life.

I started not feeling well after treatments. I was dragging myself and making myself nauseous before even getting to treatment. It was psychosomatic. I realized this wasn’t good and I needed to switch things.

I’m very fortunate where I have a lot of flexibility in my time, so I’m able to make doctor’s appointments and do my treatments during the day when my boys are at school. I try to lead my life in a way that doesn’t affect my children. I’m not in the infusion center when they’re home and going to bed, and I’m very blessed to have that opportunity.

Data That Looks at Quality of Life for Multiple Myeloma Patients

Tiffany: Dr. Costello, is there increasing data that looks at quality of life when it comes to myeloma and treatment options?

Dr. Costello: I don’t even know how to emphasize quality of life enough. People ask, “Is it quantity of life? Is it quality of life? Is it both?” I ask that to some degree to find out about their goals. People’s goals are different. It’s realistic though to say that some of our treatments are not that great. They’re inconvenient and take up a lot of time even though they work. We need to have a conversation to find out their deal breakers. Some patients don’t want to be in an infusion center and only want to take a pill, even if it means it’s not as effective because that’s what’s meaningful to them.

As far as research goes, fortunately, a lot of different studies are looking at new drugs or new drug combinations, including what we call patient-related outcomes. People may hate it because there’s a lot of surveys that happen in the midst of clinical trials asking them, “How’s today? How’s your body image? How do you feel like this? Are you content with this treatment? How do you perceive the side effects of treatment? How much time has this taken out of your day to do this?”

There is more interest in expanding on what we’ve always relied on to evaluate the safety and efficacy of drugs, to incorporate how these drugs can change people’s lives positively and negatively, and to help guide doctors in making treatment decisions and help patients understand if that’s a deal breaker.

Approaching the Clinical Trial Conversation

Tiffany: You brought up clinical trials, which is one of my favorite topics. Oftentimes, I’ll hear patients say they don’t want to go on a clinical trial because they think that’s the last resort. Dr. Costello, how do you approach the clinical trial conversation with your patients?

Dr. Costello: I first dispel the myth that placebos still exist. Some people still have it embedded in their mind. I always say that it isn’t ethical. We don’t do that anymore. Clinical trials are designed to give you what we consider the best available treatment right now and/or compare it to something that we think is as good or potentially better. I tell patients they’re potentially getting the best of both worlds no matter what they get assigned to at clinical trials.

Part of clinical trials is to help patients understand that there are various phases. Some are randomized where we don’t get to say in what treatment the patient will get. They get assigned to one or the other, but both are great options. There’s an earlier phase trial, which evaluates the safety or efficacy of these treatments and every patient will get the exact same treatment.

There are great benefits that can be reaped by participating in trials, which include getting access to cutting-edge therapies.
Dr. Caitlin Costello

There’s a thought that participating in a clinical trial is purely altruism and to some degree, yes. You are helping the future of myeloma therapies, but you’re getting the benefit yourself from it. Clinical trials are not always designed to be testing the next best thing when a patient has no other options. It’s improving all the steps of treatment that currently exist because we can always do better.

When the conversation about clinical trials comes up, a lot of it is dispelling myths and helping people recognize that it’s not just for others. There are great benefits that can be reaped by participating in trials, which include getting access to cutting-edge therapies that I otherwise cannot write a prescription for.

Seek other opinions and make the best informed decision for yourself.
Michelle

Key Takeaways

Tiffany: Michelle, what would you tell a patient who is newly diagnosed? Honestly, it seems like you did everything right, so I want to commend you.

Michelle: You are your best advocate. Do your research. Seek other opinions and make the best informed decision for yourself.

Tiffany: Dr. Costello, how do you help a provider to be an active participant and proponent of informed decision-making and shared decision-making, especially junior providers who are coming into the fold? What advice would you give providers to be the kind of person who has relationships with their patients like you and Michelle have?

Dr. Costello: Thank goodness that the paternalistic approach to medicine is a thing of the past. While there may still be a bit of it out there, there has been such an important message about customer service with medicine. You have to understand that this is a give-and-take relationship to some degree. The patient deserves to hear all the information and it’s the physician’s role to give all that information.

There’s been such an important emphasis on compassion and communication. If the physician can put themselves in the shoes of a 35-year-old newly diagnosed mom walking into a cancer center, we can all step out of our bodies and our egos to understand that there is more that can be improved in terms of developing that relationship and the importance of communication. We need to understand that we have much to offer, but our patients have so much to offer us as well.

Conclusion

Tiffany: Thank you, Michelle and Dr. Costello, for such an engaging and empowering conversation. I learned a lot about both of you personally and professionally. What you’ve had to say is going to resonate with our audience.

Dr. Costello is truly a testament to what makes a great physician partner. Witnessing her and Michelle interact was refreshing since we know the patient-physician conversation isn’t always light-hearted when it comes to cancer care. It is important to be empowered so that you and your caregivers can make informed decisions about your care.

Thanks again to our sponsor, Sanofi, for its support of our independent patient program and to our partner The Leukemia & Lymphoma Society. Check out the links on their website, including their information resource center, which provides free one-on-one support.

Special thanks to The Leukemia & Lymphoma Society for its partnership.

Special thanks again to Sanofi for supporting our independent patient education content. The Patient Story retains full editorial control.

Multiple Myeloma Patient Stories

Clay D., Relapsed/Refractory Multiple Myeloma

Symptoms: Persistent kidney issues, nausea

Treatments: Chemotherapy (CyBorD, KRd, VDPace), radiation, stem cell transplant (autologous & allogeneic), targeted therapy (daratumumab), immunotherapy (elotuzumab)
...

Melissa V., Multiple Myeloma, Stage 3

Symptoms: Frequent infections

Treatments: IVF treatment & chemotherapy (RVD) for 7 rounds
...

Elise D., Refractory Multiple Myeloma

Symptoms: Lower back pain, fractured sacrum

Treatments: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...

Marti P., Multiple Myeloma, Stage 3

Symptoms: Dizziness, confusion, fatigue, vomiting, hives

Treatments: Chemotherapy (bortezomib & velcade), daratumumab/Darzalex, lenalidomide, revlimid, & stem cell transplant
...

Ray H., Multiple Myeloma, Stage 3

Symptoms: Hemorrhoids, low red blood cell count

Treatments: Immunotherapy, chemotherapy, stem cell transplant
...

Tags myeloma event, quality of life, treatment tips, Treatments

Bispecific Antibodies Chemotherapy EGFR Lung Cancer Patient Stories Radiation Therapy Stereotactic body radiotherapy (SBRT) Surgery Treatments

Filipe’s Stage 4 Lung Cancer with EGFR exon 19 Deletion Story

Post author By Katrina Villareal
Post date November 25, 2024
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November 25, 2024

Filipe’s Stage 4 Lung Cancer with EGFR exon 19 Deletion Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Filipe was diagnosed with stage 4 lung cancer at 36. He reflects on the challenges and critical decisions that shaped his treatment path. Being a nonsmoker, he was shocked by his diagnosis following a severe headache that prompted a brain MRI, revealing multiple metastases in the brain and a primary tumor in the lung. Despite disbelief and seeking second opinions, doctors confirmed the advanced stage of his condition.

The treatment began with brain surgery to address a 4 cm metastasis. Biomarker testing revealed an EGFR mutation, enabling targeted therapy that initially worked well. However, disease progression after nine months necessitated further interventions, including chemoablation for kidney metastases and SBRT for lung activity. Eventually, a new line of treatment with a bispecific antibody offered hope when options dwindled.

Managing side effects became a significant focus, especially as the current treatment led to severe skin issues and nail problems. Adjusting the treatment schedule provided some relief. Emphasizing the importance of second opinions and advocating for personalized care, Filipe highlights the need for patients to be informed and assertive. Despite setbacks and fears of running out of options, he remains hopeful, crediting research and innovation in lung cancer treatments for extending his life.

Name: Filipe P.
Age at Diagnosis:
- 36
Diagnosis:
- Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- EGFR exon 19 Deletion
Symptom:
- Headache
Treatments:
- Surgery: to remove brain metastasis
- cryoablation: to remove kidney metastasis
- Targeted therapy
- SBRT
- Bispecific antibody

Thank you to Johnson & Johnson for supporting our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Table of Contents

Introduction
How I Found Out I Had Lung Cancer
Preparing for Brain Surgery
Learning About Biomarkers
Targeted Therapy Worked for Nine Months
Finding Another Line of Treatment
Side Effects of the Current Line of Treatment
Communicating with My Doctors About the Side Effects
The Fear of Running Out of Treatment Options
My Biggest Advice for Lung Cancer Patients

Introduction

I was diagnosed with stage 4 lung cancer at the age of 36. I’m married and I have a daughter. I have electronic hobbies.

Before my diagnosis, life was well. I was an IT systems administrator for an insurance company. My daughter was five years old when I was diagnosed.

The MRI revealed seven brain metastases and a 4 cm metastasis on the back of my head.

How I Found Out I Had Lung Cancer

I used to say I’m healthy all the time. I don’t have behaviors that justify my diagnosis, so it was a shock.

I was very lucky because my diagnostics took one day. When I had a headache, I went to the doctor and the first thing the doctor asked me to do was a brain MRI. When I was in the MRI machine, the technician asked me to wait because he wanted to call the doctor. I asked him why because the result takes at least one week. He said the doctor needed to see it.

The MRI revealed seven brain metastases and a 4 cm metastasis on the back of my head. For the doctors, it was very easy to diagnose because there was evidence. I had brain surgery two weeks after my MRI. They told me that the primary cancer would probably be lung because lung cancer usually metastasizes to the brain very quickly. They did a CT scan and biopsied the primary site and confirmed that I had stage 4 lung cancer.

At the appointment with the doctor, my wife was with me. When he said that it was cancer, I didn’t want to believe it because I never smoked in my life. I was healthy. I usually don’t go to the doctor, so it was very awkward for me. I started thinking about second opinions, but the doctor said there was no doubt about it. It was a shock.

Preparing for Brain Surgery

I went to the hospital. They double-checked everything with a CT scan and confirmed that it was lung cancer.

The first CT scan showed lesions on my liver. Fortunately, it was benign, but they found cancer in my bones, my left lung, and my head. They told me that I needed brain surgery right away because the 4 cm metastasis on my brain wouldn’t go away with other therapies. The brain is the last place a patient wants to have surgery.

The doctor said it was a very easy surgery. When they removed the bone, they were able to immediately take it out.

I started at a private hospital where I was diagnosed. They wanted me to undergo radiotherapy for my brain. I asked for a second opinion at a cancer center and they said the brain metastasis would not respond to radiotherapy and that I needed to have brain surgery. Because I’m a nonsmoker patient, I will probably have a mutation and if I’m eligible to undergo targeted therapy, usually the metastases respond very well to this kind of therapy.

I started to be treated at the cancer center. I had brain surgery to remove the biggest metastasis. After it was confirmed that I had the EGFR mutation, I started with a targeted therapy that’s very common for EGFR patients.

Second opinions are very important. There is a small margin of error in this disease. If you don’t choose the treatment well, you may not be able to choose another treatment. Listening to the doctors is very important. Get a second opinion or even a third opinion.

There were no other options for me at the time. I was very lucky because the metastasis was on the surface, so the doctors didn’t need to navigate into my brain to remove it. It only took 50 minutes. The doctor said it was a very easy surgery. When they removed the bone, they were able to immediately take it out. They didn’t need to do a whole lot.

Brain surgery is tough to think about, but it needs to be done. I wrote a letter saying goodbye to my family for them to open in case I die. Fortunately, everything went well and 24 hours later, I was standing up and walking.

Learning About Biomarkers

At the time, I didn’t understand why biomarkers were so important. Knowing your biomarker will define what kind of treatment you can have. It’s an expensive exam, but it’s very much needed because the biomarker will allow you to choose the best treatment for your cancer. The biomarker could save your life.

Targeted Therapy Worked for Nine Months

The average progression-free survival of the targeted therapy that I underwent is 18 months. I had a very short run. It only worked for nine months. The first few months were very good because it cleared four brain metastases. It also cleared my bone and reduced the cancer in my primary site.

After three months, I started to have early progression. A metastasis appeared in my kidney. We did a needle biopsy and a biomarker test to confirm if it was the same cancer because it’s very unusual for lung cancer to metastasize on the kidney. When it was confirmed that it was the same cancer, we did cryoablation on the kidney. We froze the metastasis with argon to kill the cancer cells. I also had SBRT on my lung because my lung started to have activity on the primary site based on a PET scan.

After nine months, in August 2023, I had severe progression. At the time, I had no other options on the market.

Knowing your biomarker will define what kind of treatment you can have.

Finding Another Line of Treatment

I was very lucky because my current treatment, which is a bispecific antibody, is only used for EGFR exon 20 and I am exon 19. I was very lucky because I had no options left. Amivantamab appeared and I had a great response to it.

I was very lucky because the drug came out. It’s frightening to think about running out of options and only relying on drugs that aren’t effective for your disease.

It’s similar to the sensation of when you receive the diagnosis thinking that you’re going to die, but this time, I have more information. I know exactly what my options are and even though they’re very few, I’m more aware of what’s happening. In the beginning, everything is new and you start to collect more information. But when I had the progression, I knew exactly what was going to happen.

Side Effects of the Current Line of Treatment

With targeted therapy, you can take one pill a day at home and have a normal life. With amivantamab and chemotherapy, you need to stay at the cancer center for six hours every three weeks. It’s not targeted, so it attacks the cancer cells but also the healthy cells, so you need to deal with the side effects.

It’s not as comfortable as targeted therapy. You need to reorganize your life according to the infusion days. If the toxicity is too high, I can postpone for one week, so sometimes I do four-week intervals instead of three. The major side effect is the skin and that’s why I have these pimples all over my body. I also have a lot of nail problems.

The side effects started to manifest weeks after taking the drug. It started with pimples and because I’m on blood thinners as well, everything was full of blood. After two or three months, I reached the peak of my side effects, and the side effects started to smoothen. Right now, only the nails are my major problem.

I used to have various scalp problems, pimples, and blood, but after almost 11 months, it’s only the nails and scalp. I control it with topical corticoids. I used to put a lot of cream, but it wasn’t enough. I need to take corticoids when I have treatments; otherwise, the skin becomes very red and has sunburn-like pain.

The rash is very tough because, for example, when I take a bath, I cannot use a towel and rub my skin. After all, it hurts a lot. I need to dry it very carefully with a towel. I stopped wearing white because you will see blood sometimes. The pain is also associated with that. Sometimes I’m unable to do normal things when I experience the peak of my side effects. For example, I cannot wear sneakers because it’s closed and I have nail problems on my feet, so I wear flip-flops all the time. The main problem is it doesn’t heal. Whatever you do, it doesn’t heal 100%. It can get better, but it never heals.

The toxicity starts to accumulate. In the beginning, it’s only one or two nails. Nowadays, it’s all of them. I only have one finger without problems. The rash is tough, but at some point, it starts to be manageable because you know your body, so you know what to do and know to avoid some troubles.

I’m a stage 4 lung cancer patient with brain metastasis. Forget the skin.

Communicating with My Doctors About the Side Effects

Doctors need to be careful with how to deal with their patients. They usually say that if they cannot control the side effects, treatment may be stopped and the patient starts to hide their side effects because they’re afraid of stopping treatment.

My dermatologist told me that in the beginning. If my skin becomes very bad, we need to stop treatment. I asked her, “What is the threshold?” I’m a stage 4 lung cancer patient with brain metastasis. Forget the skin. I started to understand when things go very bad with the rash and why we may need to stop treatment.

Treatment can be flexible. Instead of every three weeks, you can do it every four weeks, like I do now. One week can make a lot of difference for patients. A patient needs to know that everything is flexible.

I’m very happy with my current doctor, who’s my third doctor. You need to advocate for yourself. With all due respect, doctors need to understand that they are working for us and not the other way around. The patient has the power. He can stop treatment. He can postpone treatment. It’s our life, so we have a say and we need to be heard. Otherwise, we can change the doctors or change the medical team. Everything can change.

The Fear of Running Out of Treatment Options

Running out of options is scary. Research is very important. Without research, people would run out of treatments. Treatment can save lives. I’m an example of that. I believe that if it wasn’t for the drug I’m currently on, I wouldn’t be here, so it’s very important to have options.

Cancer is a monster, but there is hope.

My Biggest Advice for Lung Cancer Patients

There has been more development in lung cancer in the last five years than in the last 50, so there are a lot of things happening. Don’t look at the statistics. The data online is outdated. There is a lot of hope. Cancer is a monster, but there is hope.

Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Filipe!

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Rachel’s Stage 3B Ovarian Cancer Story

Post author By Katrina Villareal
Post date November 24, 2024
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Rachel’s Stage 3B Ovarian Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Rachel was diagnosed with stage 3B ovarian cancer when it was discovered after a year of trying to conceive. She was having annual gynecological check-ups and normal blood work, so she dismissed her symptoms as common female issues. It wasn’t until she underwent fertility testing that a mass on her left ovary was discovered, confirmed by a high level of CA-125. Surgery was quickly scheduled, during which the tumor and her left ovary were removed, and she was diagnosed with stage 3B ovarian cancer.

Before starting treatment, Rachel underwent two rounds of IVF to preserve her fertility, producing five embryos. She began chemotherapy, underwent a second surgery to remove her remaining ovary and undergo HIPEC, and finished her treatment with another three rounds of chemo.

Throughout, Rachel relied on her strong support system, including her husband. They moved back to Pittsburgh to be near family during her treatment. Mentally, she found strength in the temporary nature of her ordeal, journaling, daily devotionals, and staying physically active when possible. A friend’s advice to shift her mindset from “I have to” to “I get to” was a crucial part of her coping mechanism.

Despite the initial relief of finishing treatment, Rachel faced the disappointment of learning that, despite her tumor not being genetic, it resembled BRCA-positive cancer, requiring her to be on a PARP inhibitor for two years. This affected her plans for immediate motherhood, with the possibility of using a surrogate for their first child while she heals.

Rachel’s experience transformed her perspective on life. She values her connections with others more deeply and approaches life with greater intention and appreciation. While she acknowledges the challenges and fears of cancer returning, she emphasizes that this difficult experience has made her stronger, more fulfilled, and more grateful for the life she has.

Name: Rachel D.
Diagnosis:
- Ovarian Cancer
Staging:
- Stage 3B
Symptoms:
- Infertility
- Night sweats
- Severe periods
- Bloating
Treatments:
- Surgeries: oophorectomy (initially to remove the tumor & left ovary then the right ovary after IVF)
- Chemotherapy: CarboTaxol (carboplatin and paclitaxel) & HIPEC
- PARP inhibitor: Zejula (niraparib)

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Rachel!

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Rylie’s Stage 4 Hodgkin Lymphoma Story

Post author By Katrina Villareal
Post date November 21, 2024
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Rylie’s Stage 4 Hodgkin Lymphoma Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Rylie began experiencing symptoms in the months leading up to her diagnosis with Hodgkin lymphoma. Initially, she dismissed her symptoms, which included severe back pain and night sweats, attributing them to a waist trainer she had been using. Despite increasing discomfort, she continued with her daily activities, including travel, only to find the pain becoming paralyzing.

After multiple visits to the ER, where doctors suggested her pain was due to a pulled muscle or kidney infection, Rylie still found no relief. It wasn’t until she consulted a general practitioner, who immediately recognized the severity of her condition and sent her for further tests, that she was diagnosed with stage 3 Hodgkin lymphoma. The diagnosis came after months of misdiagnoses and escalating symptoms, including difficulty breathing after consuming alcohol, intense night sweats, low energy, and excruciating back pain.

Upon diagnosis, Rylie faced the emotional turmoil of confronting cancer while also considering future fertility. Since she had not yet had children, her oncologist advised undergoing fertility treatment before starting chemotherapy. After completing the process, she began her chemotherapy treatment, which consisted of 12 rounds of ABVD over six months.

The treatment, though grueling, provided some initial relief from her symptoms, especially after the first round when she was finally able to breathe easier. However, she also experienced common side effects such as nausea, hair loss, and neuropathy in her hands. After four rounds of chemotherapy, follow-up scans showed that the treatment was effective, allowing her to continue the same regimen.

Five years after her diagnosis, Rylie reached the significant milestone of being officially cancer-free. Reflecting on her experience, she stresses the importance of vulnerability and honesty, particularly in asking for support from loved ones. She believes that opening up and being raw about one’s feelings can strengthen relationships and help others better understand the emotional toll of serious illness. Through this difficult time, Rylie has learned to embrace vulnerability and encourages others to do the same, noting that it can lead to deeper empathy and connection with those around you.

Name: Rylie G.
Diagnosis:
- Hodgkin’s Lymphoma
Staging:
- Stage 4
Symptoms:
- Severe back pain
- Night sweats
- Difficulty breathing after alcohol consumption
- Low energy
- Intense itching
Treatments:
- Chemotherapy: ABVD (doxorubicin hydrochloride, bleomycin sulfate, vinblastine sulfate, and dacarbazine)

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Thank you for sharing your story, Riley!

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Eve’s Gleason 9 Prostate Cancer Story

Post author By Katrina Villareal
Post date November 21, 2024
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Eve’s Gleason 9 Prostate Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Eve shares her story of facing prostate cancer while embracing her gender identity. Diagnosed at age 57, she recounted how her health scare intertwined with her self-realization and how confronting cancer pushed her to live authentically.

Her cancer diagnosis was unexpected, identified during a routine physical when a PSA test began to rise from 4 to 12 by the following year. A biopsy revealed an aggressive Gleason score of 5+4.

She underwent a robot-assisted laparoscopic prostatectomy (RALP) in early 2018. The surgery affected her physically, removing erectile function and leaving her feeling disconnected from her former male identity, pushing her deeper into her non-binary reality.

Despite surgery, the cancer persisted. Radiation therapy followed, involving 18 rounds over several months. Her PSA initially decreased but started climbing again. Realizing that testosterone fueled the cancer, she decided to remove her testicles, undergoing a bilateral orchiectomy. Although it slightly reduced her PSA, it wasn’t a definitive solution. A significant turnaround came with an oncologist who devised a plan that stabilized her PSA to undetectable levels for four years.

Embracing life, she acknowledged cancer’s role in catalyzing her authenticity and resilience. Facing a traditionally masculine disease as a transgender woman highlighted the need for inclusive medical practices. She advocated for gender-sensitive language in healthcare and called for the inclusion of trans women in prostate cancer research.

Name: Eve G.
Age at Diagnosis:
- 57
Diagnosis:
- Prostate Cancer
Gleason Score:
- 9 (5+4)
Symptom:
- None; elevated PSA levels detected during annual physicals
Treatments:
- Surgeries: Robot-assisted laparoscopic prostatectomy (RALP) & bilateral orchiectomy
- Radiation
- Hormone therapy

Thank you to Johnson & Johnson for supporting our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
Getting the Cancer Diagnosis
Treatment Options
Cancer Remains
Removing Both Testicles
Reaction to Being Diagnosed with a Masculine Cancer
The Importance of Including Transgender Women in Prostate Cancer Research
Words of Advice

My prostate cancer and my gender transition were intimately related.

Introduction

I’m a transgender woman, I’m married, and I’m fighting prostate cancer. I was diagnosed in 2017 at 57 years old. I faced my mortality, so the best I could do was to live my life happily. I bought a 42-foot sailboat and moved to Texas.

I’ve been telling a lie about my authentic self for almost 60 years. I recognized my authentic self, which was freeing. I don’t have any secrets anymore. I don’t have anything to hide from anymore. I faced my demons.

My prostate cancer and my gender transition were intimately related. I might not have transitioned if I didn’t think I had to. I might have gone on enjoying my male privileges. I enjoy some female privileges now but not as many. I’m a member of a discriminated-against minority.

Getting the Cancer Diagnosis

In 2016, I went for my annual physical with my primary care provider. They did a PSA test. It was the second or third that I’d done, but it had gone up to a 4. They didn’t think it was of great concern.

The following year, I went for another test and it was a 12. It started going up to 18 and they said, “We think it’s cancer.” I had a biopsy and they said it was a Gleason 5+4 or a 9. The maximum you can have for a Gleason score is 10 (5+5), so there were a lot of cancerous cells in my biopsy.

They took the nerves on one side of my prostate gland, the nerves that control a male’s erection, and I lost my erection. It left me feeling less than male.

Treatment Options

They told me that my choices were radiation or surgery. I told them to remove the gland. When they did, they took the nerves on one side of my prostate gland, the nerves that control a male’s erection, and I lost my erection. It left me feeling less than male. I was always non-binary and my wife always knew that since our first date.

When they said, “You can’t have your testosterone anymore,” I started having hot flashes. I went through something similar to menopause. I coined it androgenopause.

It was a rough few years. I decided that I was going to transition. If I only have a few years left and I don’t feel male anymore, I better live it authentically.

I went to the Veterans Affairs office and told them about my plan. They had a program through the Michael E. DeBakey Department of Veterans Affairs Medical Center and what the VA does for their transgender veterans.

Cancer Remains

My cancer was aggressive. I underwent surgery in January 2018 called a robot-assisted laparoscopic prostatectomy (RALP). The pathology report indicated that the margins were positive and there were some cancerous cells in my bladder neck. My PSA didn’t go all the way down. They expected it to go to 0 after they removed the gland.

They recommended adjuvant radiation, so I saw the radiologist. They gave me a little tattoo right where they would hit their beam. I did 18 rounds of radiation over a few months. The surgery and radiation took their toll on me.

I was already non-binary and I had begun my transition hormonally, so if I don’t need my testicles, they’re not my friends anymore.

Removing Both Testicles

The cancer still didn’t go away. My PSA went down to 0.15, but it started climbing back up. Before we knew it, it was 4.5. I said, “Testosterone is not my friend.” I was already non-binary and I had begun my transition hormonally, so if I don’t need my testicles, they’re not my friends anymore. I did a bilateral orchiectomy. I had a difficult time with that surgery. My body did its job and I started feeling better, but it still didn’t bring down my PSA. It took it down a little bit more, but it was still rising.

Urology referred me to oncology. The first oncologist I saw talked to me after I had sent her an email before my consult. I told her I’m a trans woman, I’ll be presenting feminine, and these are my pronouns. I hadn’t changed my name yet because I had to wait a while before I could do that, so she still saw my former name in my chart.

She wasn’t sure how to deal with a trans woman with a traditionally male disease, so she referred me to an oncologist at Rice University. He saved my life. My PSA went down to 0 and I’ve been on treatment for four years. I’m surprised that I survived this long, as aggressive as my cancer was. I thought I had maybe two years. I made some changes. I’m happy and I’m trying to keep a good attitude. My cancer hasn’t killed me yet and as far as I know, my PSA is still close to zero or undetectable.

My prostate cancer influenced me to live more authentically… With my diagnosis, I got lemons and made lemonade.

Reaction to Being Diagnosed with a Masculine Cancer

I rationalized it as a bunch of cancerous cells in my body that don’t define who I am and that I didn’t have much control over. Things happen. I didn’t have control over having cancer.

I knew that I was non-binary, but I had to come out to the world when I transitioned. I don’t blend in and I don’t care if I don’t. I’m going to be me. Everybody’s got a little ugly in them and everybody’s got a little pretty in them. Nobody’s perfect. I decided to be my authentic self.

My prostate cancer influenced me to live more authentically, to live more honestly, to be braver, to have greater confidence, to be a richer person, to be a more beautiful person I hope, and that’s been a gift. With my diagnosis, I got lemons and made lemonade.

Trans women exist. They also have prostate glands, even after gender reassignment surgery.

The Importance of Including Transgender Women in Prostate Cancer Research

What I would like to help happen is for them to find new treatments that address prostate cancer without androgen deprivation therapy. I’d also like for the whole profession to quit talking about men with prostate cancer. I don’t consider myself male. Why don’t we talk about people with prostate cancer, patients with prostate cancer, or individuals with prostate cancer? Why all the mispronouns?

I’d like to change society so that they realize that pronouns are important. I correct people when I get misgendered. I used to get irritated; now, only if it’s done cruelly. If it’s accidental, I correct them and float right down the road.

With the community at large, the reason I do interviews is so that we can talk about patients with prostate cancer and recognize that trans women exist. They also have prostate glands, even after gender reassignment surgery. They don’t remove the prostate. I’d like to educate more people, more trans women specifically, to get their PSA checked and to monitor it.

I’d like to encourage the medical community to be aware that trans women have prostates too. Ask people what their preferred pronouns are. Put it on the forms that patients fill out. Practice using them.

I’d like to educate more people, more trans women specifically, to get their PSA checked and to monitor it.

Words of Advice

Secrets are toxic. Closets are places where you keep your clothes and not where you live. They’re dark and cramped. Authenticity is knowing who you are, being who you are, and being comfortable with who you are. It’s a gift that you give yourself.

Celebrate yourself and love yourself. I still have some masculine traits. I still have my masculine memories. I learned to love myself as this magnificent blend of masculinity and femininity. Whether it’s magnificent or not, it is to me. I like that I’ve been able to do that with myself. If you don’t love yourself, nobody’s going to love you. Go have fun, explore it all, and enjoy what you like.

Special thanks again to Johnson & Johnson for supporting our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Eve!

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Follicular Lymphoma: Latest Advances in Precision Medicine and Emerging Therapies

Introduction

Tiffany Drummond, Patient Advocate

Laurie Adami, Follicular Lymphoma Patient Advocate

Dr. Peter Martin, Hematologist-Oncologist

What is Follicular Lymphoma?

How is Follicular Lymphoma Diagnosed?

Symptoms of Follicular Lymphoma

Traditional Treatments for Follicular Lymphoma

Bispecific Antibodies for Treatment of Relapsed/Refractory Follicular Lymphoma

Experience with CAR T-cell Therapy

FDA-Approved Bispecific Antibodies for Follicular Lymphoma

Why are Bispecific Antibodies Administered in the Clinic or Hospital?

Side Effects of Bispecific Antibodies

Personal Experience with Side Effects

Precision Medicine as an Approach to Follicular Lymphoma

Long-Term Implications of Chemo-Free Treatments for Follicular Lymphoma

Clinical Research and Follicular Lymphoma

Fertility Preservation and Follicular Lymphoma

Bridging the Gap Between Academic Research Centers and Community Hospitals

Key Takeaways from ASH

Conclusion

Follicular Lymphoma Patient Stories

The Patient Exchange: Improving Clinical Trial Diversity

Introduction

Clinical Trials Knowledge

Clinical Trial Screening Process

Receiving Treatment on a Clinical Trial

Placebo-Controlled Clinical Trials

Measuring Expectations on a Clinical Trial

Side Effects on Clinical Trials

Bridging the Clinical Trials Gap

Conclusion

Lung Cancer Patient Stories

Lindy’s Stage 4 Colon Cancer Story

Inspired by Lindy's story?

More Colon Cancer Stories

Understanding Biomarkers in Lung Cancer

Discussion: Jill Feldman & Dr. Christine Lovly

Introduction

What are Biomarkers?

The Importance of Biomarkers in Lung Cancer

Testing for Biomarkers

Not Everyone Has a Biomarker

How Does Biomarker Testing Get Brought Up with Your Team?

Advice on Talking to Your Doctor

Having a Biomarker Without An Approved Therapy

The Hope in Lung Cancer

Conclusion

Lung Cancer Patient Stories

Andrea’s Myelofibrosis & Essential Thrombocythemia Story

Introduction

How My Essential Thrombocythemia Was Found

My Essential Thrombocythemia Morphed Into Myelofibrosis

Going to a Rare Blood Cancer Specialist

Being in a Clinical Trial

Bringing Up a New Clinical Trial to Her Doctor

Starting to Discuss a Stem Cell Transplant

Getting Ready for the Stem Cell Transplant

Overcoming the Fear

Life After the Stem Cell Transplant

Talking with My Doctors

More Hope for MPN Patients

How I’ve Changed

Inspired by Andrea's story?

More Myelofibrosis Stories

Together in Treatment: Strengthening Your Myeloma Care Team

Introduction

Initial Multiple Myeloma Symptoms and Diagnosis

Explaining Multiple Myeloma to Patients

Common Questions After a Multiple Myeloma Diagnosis

Getting Involved in the Decision-Making Process

Factors to Consider in Shared Decision-Making

Multiple Myeloma Treatment Journey

Coordinating Care with Multiple Healthcare Providers

Managing Patient Care From Afar

Importance of Quality of Life in Driving Treatment Decisions

Data That Looks at Quality of Life for Multiple Myeloma Patients

Approaching the Clinical Trial Conversation

Key Takeaways