Shayla was diagnosed with metastatic colorectal cancer at 33 years old after years of experiencing unexplained digestive issues. Initially, symptoms like stomach sensitivity, exhaustion, and food intolerances were attributed to a sensitive stomach. Over time, she sought medical attention, including multiple gastroenterologist consultations but received inconclusive diagnoses. She was diagnosed with celiac disease, but despite cutting out gluten, she continued to feel unwell.
After more months of fatigue, Shayla noticed blood in her stool, which persisted for several weeks. When her husband insisted she seek medical help, a colonoscopy revealed polyps. While initially told that they weren’t cancerous, a biopsy later confirmed that one was malignant. Further tests revealed lesions in her liver and lungs, prompting additional biopsies. The lesions in her lungs were clear, but the cancer had metastasized to her liver, resulting in a stage 4 colorectal cancer diagnosis.
Her treatment plan included four rounds of chemotherapy, followed by a hepatectomy or liver resection to remove 25% of her liver. After the surgery, Shayla began her chemotherapy again, with plans for more rounds to finish her treatment. Although she initially struggled with side effects, such as hot flashes, nausea, and fatigue, her doctors adjusted her treatment plan to help her manage better. However, cold sensitivity, neuropathy, and physical weakness persisted.
Despite these challenges, Shayla remained focused on her healing and recovery, even as the emotional toll of her diagnosis began to weigh on her mental health. She shared that the isolation during recovery and the struggle with seeing her children react to her illness was particularly difficult.
Shayla advocates for others to take their symptoms seriously, stressing the rising rates of colorectal cancer in younger adults. She encourages others to seek second opinions and advocate for themselves if they’re not satisfied with their medical care. Through her experience, she has seen the importance of a strong support network and the need for proactive health care, urging others to catch cancer early to increase treatment success.
Name: Shayla L.
Age at Diagnosis:
33
Diagnosis:
Colorectal Cancer
Staging:
Stage 4
Symptoms:
Stomach sensitivity
Food intolerances
Exhaustion
Blood in stool
Treatments:
Chemotherapy
Surgery: hepatectomy (liver resection)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Jim began experiencing alarming symptoms one day when his head and neck swelled up suddenly due to backed-up blood flow, causing his face to turn purplish and his neck veins to bulge. After the swelling subsided, he was rushed to the ER at the University of Pennsylvania, where initial tests revealed a severe narrowing in his superior vena cava.
Doctors were baffled by his condition. Over four days of hospitalization, various specialists attempted to diagnose the cause of the obstruction, but no clear answer emerged. Even though lymphoma was mentioned early on, it was dismissed because lymphoma typically doesn’t present in veins. The situation grew more critical as the narrowing worsened, leading to a second hospitalization, but still, no one could identify the cause.
As hope dwindled, a heart and lung transplant surgeon proposed an innovative surgery: removing the entire superior vena cava and replacing it with a graft made from pig intestine. Jim underwent the surgery, which was more complicated than expected due to the extent of the tumor. The pathology report later revealed that the obstruction was caused by diffuse large B-cell lymphoma.
Following the surgery, Jim faced additional challenges as his surgical site began to narrow again due to natural healing and scarring. The doctors debated whether to insert a stent to keep the vein open, but Jim opted to endure the discomfort, trusting that his body would heal over time and develop new collateral veins. After weeks of uncertainty, he started chemotherapy to address the lymphoma.
Name: Jim Z.
Age at Diagnosis:
41
Diagnosis:
Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms:
Sudden and severe head and neck swelling
Purplish facial discoloration
Bulging neck veins
Treatments:
Surgery: resection and reconstruction of the superior vena cava
Chemotherapy
Thank you to Genmab 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.
Suddenly, my head and neck began to swell up… if this was going to continue at the rate it was going, I wasn’t going to be around for much longer.
Introduction
My wife Vanna and I are parents to two terrific boys, Nikitas and Victor. We live in the suburbs of Philadelphia, where I also teach. I’m a high school English teacher and a writer. I also paint and coach Little League.
How the Symptoms Started
I was getting ready to go to a Phillies game when, suddenly, my head and neck began to swell up with backed-up blood flow. It was so alarming. I looked in the mirror and saw my head puffing up like a balloon filling up with water.
I called out to my wife, who came rushing and immediately saw me. My father is a doctor, so I called him. It was pointless to call 911 because if this was going to continue at the rate it was going, I wasn’t going to be around for much longer.
My wife and I stared at myself in the mirror while my father very amazingly and gently told me to breathe. This went on for two or three minutes. You can imagine the swelling and purplish appearance of my face and neck with neck veins bulging
As dramatically as it started, it stopped. My blood flow reached equilibrium and I began to feel normal. I even joked that we were going to go off to the Phillies game after that. My father said no and that I was going to the emergency room.
She pointed to the narrowing and said, ‘We don’t know what this is, but it could be fatal.’
Going to the Emergency Room
When I went to the ER, I appeared normal, but when I described what happened to me, I could tell from their reaction that something serious was going on. In a matter of hours, I had blood draws and X-rays taken. I waited in a room very patiently and watched the entire Phillies game on the TV.
Around midnight, I went to the front desk and asked the attending doctor if she was as surprised as I was that we still hadn’t heard any results. She looked at me with tender eyes and said she would see me in a minute.
She came into my room, sat next to me, held a pretty fuzzy X-ray image up, and pointed to what looked like an hourglass. She pointed to the narrowing and said, “We don’t know what this is, but it could be fatal.” Those were the first words that I heard from a doctor about whatever was going on inside of me.
As shocking as that sounds, it wasn’t entirely surprising because of what had happened to me. The force of the earlier incident of whatever seemed to be obstructing my blood flow was stunning. I understood that it was game on.
A couple of hours later, I was getting an MRI. I had never gotten an MRI before and it’s not something anyone feels comfortable doing. As claustrophobic as I am, it didn’t even occur to me because it was my first time and I didn’t know any better, so I just lay there in that tube. I was in survival mode and if this is what’s necessary to get to the bottom of things, I can do this. I went back to my father’s advice to breathe and tried to stay calm.
The irony is that every department had somebody come to see me to speculate on what might be ailing me—every department except oncology.
What the Doctors Could See From the Scans
There was some blockage or obstruction in my superior vena cava, the main vein that descends to the heart and the last and most crucial vessel that brings blood back to the heart. In retrospect, that would explain why all of a sudden, I had backed up blood in my head and neck. At some point, the blood managed to get through the superior vena cava, so my blood flow returned to normal.
I was admitted to the hospital for four days. The cardiovascular surgeon was appointed as the head of my team. A young attending doctor was trying to round up the best people. At one point, he told me, “You’re the talk of the hospital. Everybody wants to be the guy who figures out what’s going on in your chest, but we don’t know.”
The irony is that every department had somebody come to see me to speculate on what might be ailing me—every department except oncology. Early on, the theory was cancer or lymphoma, but it does not present this way. It’s rarely in the chest and never in veins and this was clearly in a vein. Six months later, my oncologist told me, “We do find lymphoma in veins occasionally, although rarely and only in an autopsy,” so this was not in anybody’s working diagnosis and it was disqualified almost from the get-go.
The one guy who might be able to do something would be the interventional radiologist to do a biopsy, but he was determined to avoid doing that because he would have to put a needle into my superior vena cava. Not only was there some obstruction in there, but it appeared to be in the wall of the vein. He explained how he would have to pierce a needle through the wall of the vein and somehow extract a piece of whatever was in there. He said, “I’m not doing it. It would be catastrophic and I don’t want to kill you.”
We saw a narrowing so severe that it was hard to imagine how any blood was getting through to my heart.
After four days, a cardiac surgeon proposed to open up my chest completely to get to the vein, but we were still left with a catch-22. The interventional radiologist said, “Even if I had your superior vena cava in the palm of my hand and my best needle in my other, I would not dare try to get a piece out of the wall of your vein to do a biopsy.” We were stuck. I wasn’t having dramatic inflamed symptoms but I was still uncomfortable.
On day four, a cardiovascular surgeon came in and said, “It may be some idiopathic thing that we can’t explain. There are medical mysteries. We’re going to send you home without a diagnosis. If you have another flare-up, if you continue to have worsening symptoms, we’ll have you come back in a month and we’ll do more imaging.”
I left and I was not confident because you feel the sensations in your own body. I was hopeful, but my gut said something was happening inside of me.
Symptoms Returned After Leaving the Hospital
Over the next few days, it got worse. It was backing up. Again, with the benefit of hindsight, what was happening was the tumor was growing and the narrowing was becoming more severe. The blood flow to my heart was decreasing by the day.
I packed my bag. My parents happened to be at our townhouse that afternoon. I showed up in the doorway and said we had to go back. We went back to the hospital and I was readmitted.
The cardiovascular surgeon and the interventional radiologist decided that I was going to get a venogram, where they put the dye into the bloodstream to get a more vivid image. We saw a narrowing so severe that it was hard to imagine how any blood was getting through to my heart.
It was supposed to be 15 mm at its maximum and it was narrowed down to about 3 mm — that’s how much blood flow was going to my heart.
Three or four doctors were looking at the gigantic triptych of images that showed my superior vena cava and the narrowing that came nearly closed and then opened again. They shook their heads and said, “We don’t know what this is.” The cardiovascular surgeon came in and somberly said, “I’m sorry. We’ve tried to do everything and there’s nothing left that we can do.” We all knew what that meant.
My father, who’s a doctor and is always inquisitive and never at a loss for hope, was quiet. That gives you some indication of all the conversations, research, and investigations that had gone on for the last 10 days had come to this moment and we accepted it.
I hugged my wife. My parents went over to the window and I went over and hugged them. Very strangely, I was more equipped to handle the news than anybody. I had been living with that first thought on the night I went to the ER and was told this could be fatal. We didn’t know what this was, so I had been preparing for this possibility.
When I hugged my dad, he said, “I’m sorry, son,” and I said, “I’m sorry, dad,” and the next thing that he said was, “Tomorrow, more research.” That was a profoundly hopeful, illogical moment, but it shows you the balance of this man of science who, even after all of that, was still determined that there might be something, but he was also my dad, going through this with me and all of us.
Not Giving Up Hope
A couple of hours passed and there was a new young attending doctor on call that day. I said to her in passing, “I would love to sit with the head of radiology and be able to look at all the images from the first day to the most recent venogram.” A lot of imaging had been done and I was trying to understand the anatomy of the superior vena cava and the brachiocephalic veins that go up into the jugular veins. I learned all this anatomy and I wanted to understand it better.
I was looking at these spectacular 3D images. It was supposed to be 15 mm at its maximum and it was narrowed down to about 3 mm — that’s how much blood flow was going to my heart.
The doctors looked at each other and shook their heads. The interventional radiologist was convinced more than ever that he wasn’t going to stick a needle in there. They both said, “It’s got to come out since we can’t get to it.” But nobody knew what the surgical strategy would be.
‘I’ve got an idea. I propose that I open you up and take out your entire superior vena cava and replace it with a graft.’
Six hours or so later, a man I had never seen before walked in. He’s a heart and lung transplant surgeon at UPenn. He said, “I know you don’t need a heart or lung transplant, but I’ve got an idea. I propose that I open you up and take out your entire superior vena cava and replace it with a graft that I’m going to craft out of this material that I’ve been using to patch hearts and lungs. I’ll make a vein for you and attach it at both ends. I think I can do it.”
My wife and I were alone with him, stunned and giddy, happy and amazed, and slightly skeptical. My wife Vanna ran to the hallway, grabbed my parents, brought them back in, and said, “Repeat what you just said.”
We listened to him describe the surgery that he had planned. He had been using an organic material made out of pig intestine. He’d been using it to patch hearts and lungs, but he thought he could make a cylinder out of it and make a vein that would replace my superior vena cava. He said he would do this. I said, “So there’s still hope?” And he said, “There’s always hope.”
Surgery Day
I went into surgery feeling good and confident. I woke up on the other side and it worked. When the surgeon came to visit, he said, “It ended up being a little more complicated than we were anticipating. It wasn’t just a tube after all.” He described it as black muck that he’d never seen anything like before. It went up into the brachiocephalic vein. He took more of that material and had to make a Y shape, did the surgery, and attached my superior vena cava to the brachiocephalic vein, which is even narrower. A brilliant surgery to say the least.
They sent the whole thing off to pathology to find out what it was all along. Five days later, while I was still in the hospital recovering, a young man from hematology came to see me and said, “You’ve got diffuse large B-cell lymphoma.” Everybody’s mind was blown because it defied all expectations.
We would give the graft a month to heal and then start chemo. Fortunately, I was able to get the chemo through a vein in my arm.
Doctors Couldn’t Believe It Was Cancer
My oncologist, one of the great lymphoma doctors, said he had never seen anything like it. In a month, I started chemotherapy and that’s when I met my oncologist.
That was the first time I ever heard about cancer or lymphoma. But I had a graft in my chest that needed three months to heal. That was the plan.
My surgeon said, “I don’t know what chemotherapy is going to do to Jim’s graft made out of pig intestine and we’re certainly not going to stick a port in his chest into his superior vena cava. Hopefully, the chemo will go well into a vein in his arm.”
On the other hand, my oncologist, said, “We’re not waiting three months for this graft to heal. We called the company that makes the graft and asked how chemotherapy interacts with the material. They had no idea.
The doctors compromised and agreed that we would give the graft a month to heal and then start chemo. Fortunately, I was able to get the chemo through a vein in my arm and we went from there.
Despite everybody’s certainty that lymphoma doesn’t present that way, a lymphoma tumor was growing inside the wall of the vein of my superior vena cava.
The obstruction that was originally in my superior vena cava was a lymphoma tumor. Despite everybody’s certainty that lymphoma doesn’t present that way, a lymphoma tumor was growing inside the wall of the vein of my superior vena cava.
I tolerated some great discomfort but in time, I trusted that the body would do its magic and heal itself, and other tributaries would form as these guys described to me. Presumably, that’s what happened because I’ve had scans since and I still have this dramatic narrowing. Even though you can’t see in any of these images that other collateral veins have formed, everybody thinks that the only scientific explanation is that’s what happened.
I am sure I am one of the very rare cases where the cancer and the chemotherapy were always secondary to the healing of the surgery.
Cancer Responded Well to Chemotherapy
While it was an aggressive cancer lymphoma, it responded well to chemotherapy. These were all very promising signs and that gave me optimism. As long as I could withstand the symptoms, my body tolerated the chemotherapy, and the healing could continue, we’d get to the other side of this and hopefully, the chemo cocktail would do its work.
I maybe had six rounds of chemo every three weeks. I had one reasonably tolerable week and one week of debilitating nausea. But all the while, I was also recovering from surgery.
By the sixth round, I was in remission. There was no lymphoma showing up on the PET scans.
When we got to the fourth round or so, I got tested and it appeared that there was no growth. Eventually, by the sixth round, I was in remission. There was no lymphoma showing up on the PET scans.
At the time, I couldn’t wait to get back to normal. There was only one marking period left in the year. I teach English and writing to seniors and wanted to be in this atmosphere of dynamic conversation, kids, and vitality.
When I came back at the beginning of April, my colleagues were thinking, “Are you crazy? Take the year off at this point and see you in September.” But I couldn’t have been happier to be back. My hair was growing back. I was still bald, but it felt great to be back.
How I Survived
As a patient, I was the unluckiest guy on the planet because nobody could detect what I had. I reached a low point where doctors told me there was nothing else that could be done. Then the surgeon said the magic words: there’s always hope.
I take that with me into everything that I do. Even after all seems lost, you don’t know what you don’t know. You’ve got to stay awake for every moment of your life because if you’re full of anxiety and despair, you might not see an opportunity that could point you down a positive path to good health.
I was fortunate to grow up with a doctor as a father and live in a city with institutions, like the University of Pennsylvania. I had faith in the doctors and the institution, and I don’t take any of that for granted. It’s easy for me to tell others to have faith and hope because I was born with that.
Keep the faith. Stay hopeful. Be your best self-advocate.
What came from my experience as the son of a doctor was confidence in having conversations with my doctors, the expectation that they were listening to me, and that they wanted to hear my story because that’s the kind of doctor my dad was.
My dad was a family doctor and he made sure to make eye contact to hear the patient’s story and to be there emotionally not just clinically. Again, it’s easy for me to say to a patient who might be going through these things who didn’t have the good fortune that I had with all these other lucky things that I had going for me.
Words of Advice
Keep the faith. Stay hopeful. Be your best self-advocate because you never know and the doctors don’t always know either. They need to hear your story.
Special thanks again to Genmab for its support of our independent patient education content. The Patient Story retains full editorial control.
Willow’s Rare Grade 1, Stage 2.5 Pelvic Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Willow was diagnosed with a rare stage 3 pelvic cancer that was a combination of endometrial and cervical cancer. Initially, she had persistent flu-like symptoms, fatigue, a scratchy throat, and chills. Despite requesting cancer tests from her gynecologist, her concerns were dismissed as symptoms of aging. Eventually, more alarming symptoms like post-orgasm pain, heavy bleeding, and severe cramping led her to fabricate symptoms to expedite care because she couldn’t find answers. Multiple tests yielded no results until a naturopathic gynecologist ordered advanced imaging, which revealed a hidden tumor masked by scar tissue from her cesarean section nine years prior.
The diagnosis confirmed she was on the brink of stage 3 pelvic cancer. Willow underwent a radical hysterectomy, followed by six weeks of radiation and chemotherapy. Despite the rigorous treatments, she felt fortunate to have the tumor removed first, which alleviated her symptoms. Recovery, however, was daunting due to the internal nature of the surgery and the emotional toll of transitioning from intensive care to self-reliance. Post-treatment, Willow suffered from angioedema and the abrupt onset of menopause, leading to brain fog, brittle bones, and balance issues, causing several falls and broken bones.
Despite these challenges, Willow adopted hormone replacement therapy (HRT), which significantly improved her quality of life. She emphasized the importance of conventional cancer treatments, advocating against relying solely on holistic methods. During her treatment, Willow reached out to her community and received crucial support.
Her identity transformed post-cancer; she embraced a fearless, purpose-driven life. Willow’s candid discussion about intimacy post-surgery highlighted that recovery and fulfilling sex life are possible with proper care, including pelvic floor therapy. She encouraged others to pursue their passions without waiting for life-threatening circumstances, emphasizing that cancer is not a death sentence but a call to fully engage with life.
Name: Willow B.
Diagnosis:
Pelvic Cancer (Endometrial-Cervical Hybrid)
Staging:
Grade 1, Stage 2.5
Symptoms:
Persistent fever-like chills
Scratchy throat
Fatigue
Post-orgasm pain
Heavy bleeding
Severe cramping
Treatments:
Surgery: radical hysterectomy
Radiation
Chemotherapy
Hormone replacement therapy (HRT)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Heavy periods, abnormal bleeding, large blood clots, severe cramping, severe abdominal pain, pain radiating down the left leg, loss of mobility in the left leg, loss of appetite, fatigue
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
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.
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.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
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.
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.
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.
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.
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.
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.
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.
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.
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 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.
Tiffany: Tony, what about you? Were you familiar with clinical trials before you started this journey?
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
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.
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 promotional partners.
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.
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
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
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 and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
NSCLC Biomarkers Jill Feldman and Dr. Lovly Interview
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.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
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.
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
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
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.
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.
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.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
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.
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.
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.
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.
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.
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