Brian’s Limited-Stage Small Cell Lung Cancer Story
Brian was diagnosed with limited-stage small cell lung cancer in December 2024 at the age of 40. His diagnosis was unexpected and came about after an unusual fall at work, where he broke his hand and injured his shoulder. As he recovered, he experienced persistent pain in his shoulder and armpit. Concerned, he requested an X-ray, revealing a lung mass. Initially, doctors attributed the mass to a contusion or even bronchitis. Only after extensive testing and a painful needle biopsy was he diagnosed with small cell lung cancer.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Receiving the diagnosis was a devastating shock. Though Brian had feared the possibility of lung cancer, having previously experienced chronic heartburn and sought medical attention for it, nothing had indicated cancer until the imaging revealed the tumor. The news was difficult to process, and he initially struggled to find hope. Over time, he came to terms with his situation and began looking ahead to treatment.
Brian’s treatment plan consists of chemotherapy and radiation therapy. His chemotherapy regimen involves three consecutive days of treatment followed by 21 days off, and he undergoes radiation therapy twice a day for five days a week. Although he has experienced fatigue and flu-like symptoms, he has so far been fortunate to avoid the more severe side effects typically associated with chemotherapy.
His diagnosis has had a profound impact on his life. Previously, he worked a physically demanding job, but his illness has forced him to step away from that work and adjust to a new daily routine. He more time at home, focusing on rest and recovery. Mentally, the diagnosis has been his greatest challenge. A self-described introvert, he has struggled with thoughts about his legacy and the limited time he may have left. He emphasizes the importance of taking life one day at a time and avoiding overwhelming information online, which can be discouraging. Instead, he focuses on maintaining hope, as it is the only thing that keeps him moving forward.
Although Brian has received support from friends and family, he has found it difficult to locate a lung cancer support group that suits his needs. He acknowledges the value of community and continues searching for a support network. He discovered The Patient Story while researching ways to share his experience and hopes to connect with others who understand his situation.
Brian’s advice to others facing a similar diagnosis is to take things day by day and hold onto hope. He believes that fighting, regardless of the outcome, is something to be proud of. He remains hopeful about his treatment and is determined to face his illness with resilience and courage.
Name: Brian M.
Age at Diagnosis:
40
Diagnosis:
Small Cell Lung Cancer (SCLC)
Symptoms:
Persistent heartburn (suspected GERD)
Shoulder/armpit pain
Treatments:
Chemotherapy
Radiation therapy
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.
Why Second Opinions Matter: Denelle’s Stage 3B Rectal Cancer Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Denelle was diagnosed with stage 3B rectal cancer in April 2024, after experiencing persistent symptoms for several months. In the fall of 2023, she noticed irregular bowel movements, frequent bleeding, and the sensation of incomplete evacuation. Initially dismissing these symptoms as hemorrhoids, she eventually sought medical advice in January 2024. Her general practitioner found nothing unusual, but concurrently referred her to a gastroenterologist, leading to a colonoscopy in April that consequently confirmed cancer.
The initial staging process was complex and took about a month. Early assessments suggested stage 1 or 2 cancer, but CT scans later revealed lesions on her liver, raising concerns about stage 4 cancer. However, further testing determined that the lesions were benign, confirming her diagnosis as stage 3B rectal cancer. Given the initial recommendations for surgery, Denelle afterwards sought a second opinion at Mayo Clinic. Doctors subsequently suggested a total neoadjuvant therapy, consisting of chemotherapy and radiation before considering surgery.
Denelle underwent a month-long chemoradiation treatment, taking chemotherapy pills alongside radiation therapy. As a result, follow-up scans showed significant tumor shrinkage, allowing her to proceed with systemic chemotherapy. She completed eight rounds of chemotherapy at home, midway through which scans indicated a complete response. Despite this positive development, she finished all prescribed chemotherapy treatments and then transitioned to active surveillance.
The mental and emotional toll of stage 3B rectal cancer was significant for Denelle. The initial shock of the diagnosis was overwhelming, especially as she grappled with how to share the news with her family. Throughout treatment, she experienced anxiety, particularly around scan results, and subsequently found therapy helpful in processing her emotions. Support from her community, COLONTOWN, and her family played a crucial role in helping her navigate this difficult period.
Denelle emphasizes the importance of seeking second opinions, advocating for oneself in medical decisions, and trusting one’s instincts. She subsequently learned that cancer treatment is not a one-size-fits-all approach and that finding the right medical team aligned with her goals was crucial. Consequently, she advises others to push for answers if something feels off and to build a strong support system.
Now in the surveillance phase, Denelle will be undergoing regular scans every three months for the next two years. She correspondingly acknowledges the ongoing fear of recurrence but is focused on being present in her life. Stage 3B rectal cancer changed her perspective, making her more intentional with her time and relationships. Furthermore, while she still processes the emotional impact, she is committed to moving forward with a renewed sense of purpose and gratitude.
Name: Denelle C.
Age at Diagnosis: 34
Diagnosis:
Rectal Cancer
Staging:
Stage 3B
Symptoms:
Irregular bowel movements
Frequent rectal bleeding
Sensation of incomplete evacuation
Treatment:
Chemoradiation (oral chemotherapy and radiation therapy)
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.
Sandy was diagnosed with stage 4 non-Hodgkin lymphoma in 2024. Her initial symptoms included persistent coughing, weakness, and shortness of breath. After weeks of worsening symptoms and ineffective treatments, an MRI revealed a large mass in her chest, which eventually led to the collapse of her left lung due to a massive tumor. A biopsy confirmed the diagnosis of lymphoma, a cancer that Sandy later described as a blessing in disguise due to its responsiveness to chemotherapy.
Treatment began immediately, consisting of six intense rounds of chemotherapy, each lasting five days in the hospital followed by two weeks of recovery at home. The process was physically and emotionally grueling, marked by extreme fatigue, weight loss, and hair loss. Despite these challenges, Sandy focused on mental resilience, which she believes was critical to her survival. She emphasized the importance of maintaining movement, even during the most debilitating moments.
To cope mentally with stage 4 non-Hodgkin lymphoma, Sandy turned to spirituality, meditation, and writing. She frequented a meditation garden where she found solace. Writing became a therapeutic outlet, leading to the creation of her book, Cancer Ramblings. Writing helped her process her experience and turn her pain into purpose.
Sandy celebrated her remission as a profound moment of liberation and gratitude, describing it as a second chance at life. She plans to monitor her health closely while maintaining a conscious lifestyle. She views sharing her story as a way to inspire others, providing hope and comfort to those facing similar challenges. Her key advice is to visualize a positive outcome and hold onto it as a guiding light through the darkest moments. Sandy’s enduring image was of herself running on the beach—a vision she ultimately realized.
Name: Sandy D.
Age at Diagnosis:
45
Diagnosis:
Non-Hodgkin lymphoma
Staging:
Stage 4
Symptoms:
Persistent coughing
Weakness
Shortness of breath
Treatment:
Chemotherapy (six rounds)
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: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough
Amrit was diagnosed with appendix cancer, or appendiceal adenocarcinoma (ApAC), in 2022 after enduring a series of vague and confusing symptoms. Initially attributing her severe migraines, abdominal bloating, skin changes, and irregular menstrual cycles to perimenopause, she delayed seeking medical attention. However, persistent bloating prompted her to visit her general practitioner, who conducted further tests. A scan revealed a mass on her ovary, leading to a referral to the fast-track cancer pathway. Further imaging uncovered a ruptured appendix and mucin accumulation throughout her peritoneal cavity.
Amrit underwent a grueling 9.5-hour surgery involving extensive procedures: the removal of her appendix, spleen, gallbladder, omentum, ovaries, and visible mucin deposits. This was followed by heated intraperitoneal chemotherapy (HIPEC) to address any residua cancer cells. Post-surgery, she learned her condition was malignant, requiring additional chemotherapy. Amrit described the physical toll of treatment, including neuropathy, extreme fatigue, and other side effects.
Throughout her appendix cancer experience, Amrit confronted significant mental health challenges, including post-traumatic stress disorder (PTSD). She found coping mechanisms in running, advocating for women’s health, and compartmentalizing for her children’s sake. She emphasized the importance of women advocating for themselves, recognizing symptoms, and prioritizing their health over societal and familial pressures.
Amrit now monitors her condition under a 10-year surveillance program. While her latest scans show no active disease, the possibility of recurrence remains. She continues to process her trauma, engage in physical activities like marathons, and share her story to inspire others to take control of their health.
Name: Amrit R.
Age at Diagnosis:
46
Diagnosis:
Appendiceal Adenocarcinoma (ApAC)
Symptoms:
Persistent migraines
Severe bloating
Rapid weight loss elsewhere but abdominal enlargement
Irregular menstrual cycles with heavy bleeding
Facial rash and skin changes
Treatments:
Surgeries: cytoreductive surgery with heated intraperitoneal chemotherapy (HIPEC); removal of the appendix, spleen, gallbladder, ovaries, and omentum
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.
Jessica was diagnosed with stage 2 Hodgkin lymphoma at 26. Before her diagnosis, she led an active and healthy lifestyle, enjoying time at the gym and with her fiancé. Her first symptom was a recurring red lump on her leg, which she initially dismissed. After the lump persisted and caused pain, she visited her general practitioner, who first changed her contraceptive pill. When the lump returned, her GP ordered a chest X-ray, revealing a mass in her chest.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Further testing, including biopsies and bronchoscopy, failed to confirm lymphoma until February 2024, when a video-assisted thoracic surgery provided a definitive diagnosis of stage 2 Hodgkin lymphoma. Jessica had no classic symptoms of lymphoma, such as night sweats or significant weight loss, and was shocked to learn she had a 19 cm tumor in her chest and surrounding areas.
Her treatment plan involved fertility preservation, followed by four rounds of intense chemotherapy. The physical and emotional toll was significant, including nausea, hair loss, and isolation due to her young age in the treatment unit. Despite these challenges, Jessica found support through social media, sharing her experiences to demystify cancer treatment and connect with others.
Now in remission, Jessica reflects on how the experience reshaped her perspective, emphasizing gratitude, resilience, and the importance of seeking medical advice for unexplained symptoms. She continues to advocate for awareness and hopes her story inspires others to face cancer with courage.
Name: Jessica H.
Age at Diagnosis:
26
Diagnosis:
Hodgkin lymphoma
Staging:
Stage 2
Symptom:
Recurring red lump on the leg (painful, swollen, hot to touch)
Treatment:
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.
In 2020, at the age of 33, Calvin was diagnosed with stage 1 lung cancer after enduring four years of misdiagnosed symptoms, including frequent illness and breathing difficulties. His initial symptoms began in 2016, with a severe bout of illness in Germany leading to a pneumonia diagnosis. Subsequent cycles of sickness and treatments yielded no lasting improvement, and he was misdiagnosed with adult asthma. Despite consulting various specialists, it wasn’t until 2020 that further tests, including X-rays and pulmonology consultations, revealed a potential cancer diagnosis.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
A biopsy confirmed a mass in his left lung, necessitating immediate surgery. In September 2020, his left lung was removed entirely via pneumonectomy. Recovery was arduous, requiring relearning basic functions such as walking and urination. The emotional toll on his family, particularly his wife who assumed caregiving responsibilities, was profound. Determined to recover for his two-year-old daughter, he sought trauma therapy to navigate the psychological challenges.
Living with one lung transformed his life. He now prioritizes low-altitude, climate-controlled environments to manage breathing and accommodate his family’s activities. He has since welcomed a second child and adjusted to his new reality with resilience. His advice underscores the importance of self-advocacy in medical care, urging others to trust their instincts, persist through diagnostic hurdles, and seek second opinions when necessary.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content
I was diagnosed with stage 1 lung cancer in 2020 at the age of 33.
Initial Symptoms
In 2016, I was traveling quite a bit for work. After a long flight to Germany, I wasn’t feeling too well and ended up bedridden for four days in a hotel room. When I arrived home, I immediately went to the doctor with the medication they gave me in Germany. My doctor in Denver looked at it and said, “It looks like you had pneumonia. Let’s treat you for that and run some tests.” After the tests, she said, “You have adult asthma. You had asthma as a kid, now you have adult asthma.”
In 2017, I kept traveling. I continuously went through a three-month cycle. I would get sick for a week or so in the first month. In the second month, we would change medications. In the third month, I’d feel okay. I kept traveling for work until COVID hit.
We went up to somewhere above Vail where the elevation was around 7,000 feet and I couldn’t breathe.
In April 2020, we were at an allergy and asthma center getting my daughter tested because she’s allergic to peanuts. I asked her doctor, “Can I get a meeting with you? I supposedly have had adult asthma for the last few years, but it’s not getting better. We’re not doing anything because of COVID and I’m still getting sick.” She ordered an allergy test, some asthma tests, and X-rays, and then told me to go to a pulmonologist.
After the pulmonologist ran some tests, she said, “You have one of three things. You have a fatal lung disease and you’ve got 6 to 12 months to live, you have cauliflower lung, which is what a lot of people get from vaping, or you have lung cancer. It’s the most probable option, so we have to do some tests.” This was around April and May 2020, so it wasn’t the easiest time to get in and out of medical centers. It took a while, but I was able to do all these different tests.
We went camping because that’s what we did during COVID. Since I lived in Denver, we went up to somewhere above Vail where the elevation was around 7,000 feet and I couldn’t breathe. I thought, “How is this possible? I’m not sick. I don’t have COVID.” We were testing all the time since we had a two-year-old then. We came back down and they said they needed to do a biopsy of my lung.
Diagnosis
They scheduled the biopsy for an hour and five minutes. As soon as they put the camera in, they saw a mass sitting over my left lung, so they stopped and pulled the camera out of my throat. The next thing they said was, “You have to come back in tomorrow. We have to remove this mass. We’ve done this a bunch, so we know what it is. We can’t tell you officially, but based on the color and the type, it looks exactly like cancer. We’ll have to take it out tomorrow. We weren’t prepared for this mass. We thought we were going to do a biopsy.”
The next day, they removed the mass and said they would get back to me within 7 to 10 days. The next Friday was the Friday before Labor Day weekend. My wife and I were sitting at home, twiddling our thumbs. It was the eighth day and we hadn’t gotten the test results back. We’re hammering our pulmonologist and everyone else to give us answers. At 5:07 p.m., the chief of surgeons called and said, “Hey, I’m sorry that it’s so late. We have the results. You have stage 1 cancer, but it’s the best outcome and it’s the easiest thing for us to treat.”
‘In 13 days, your life will never be the same. You need to grab your family, go wherever you want… you’re never going to be able to breathe this way again.’
Discussing the Treatment Plan
When we walk into his clinic, he has everything decked out. He said, “Here’s the deal. In 13 days, you’re going to have surgery. We’re taking out your entire left lung. Here’s what we’re going to do,” and he mapped it all out. We asked, “Do we have a second opinion on this?” He said, “Look, I’m on the board of Colorado with your oncologist and pulmonologist. We’re the team. This is what you’re going to do. I got you booked in because I’m the chief of surgeons here and I own the books. This is your appointment time. I’ll see you in 13 days on Thursday.”
Then he asked, “Where do you work?” I told him where I work and he asked, “They’re not going to shut down without you, are they?” I told them that they’d be fine. He said, “Here’s what you’re going to do. You’re going to walk out of this office. You’re going to call your boss and say, ‘I’ll see you in six months,’ or whatever time you can do because in 13 days, your life will never be the same. You need to grab your family, go wherever you want, see the leaves change, and go to altitude because you’re never going to be able to breathe this way again.” The mass was moved so I could breathe.
I was at the point that a lot of people go through, which is, “Wait, I feel amazing. You removed the mass. Can I wait for science? Can I wait for something to come in and fix this?” I asked him that and he said, “If you do, you’ll end up with stage 3 or 4 cancer and you will die. Don’t be an idiot.”
My wife went into full caregiver mode. It’s missed how much caregivers give, how much they put in, and what they’re going through.
Reaction to the Diagnosis
At the time, our daughter was two. My immediate thought was: what are the next steps? Lung cancer is thought of as fatal. In the lung cancer community, we talk a lot about the stigma that comes with it. I’ve never smoked. Then my thoughts went to, “What did I do wrong? What did I do to cause this? How do I stop it?” You can’t. At that point, it’s done. Finally, it came down to, “Is my wife going to be stuck raising our daughter by herself?”
There’s a seven-month part of my life that is completely blacked out, especially after surgery and the meds I was on. I don’t remember a lot of it, but I was in a lot of shock. One of the first things I did was to reach out and find a trauma therapist to get ahead of it because I knew it was going to be bad. My wife went into full caregiver mode. It’s missed how much caregivers give, how much they put in, and what they’re going through.
I’ve never only lived with one lung. I don’t know what the reality of that is.
Pneumonectomy
They took out my entire lung. I’m knocked out and my wife had to go through all of these emotions, which is way worse than anything in the moment. It was rough for her. They put me in the ICU for a day and a half and then I was in a regular room for five days.
I didn’t know what to expect as a young 30-year-old athlete who played sports his entire life. You get through injuries and it hurts, but you know you’ll get through it. I’ve never had major surgery. I’ve never only lived with one lung. I don’t know what the reality of that is.
Recovering from Surgery
I had to relearn how to walk, to urinate, and to do everything. Nothing was working. It was difficult having to relearn those, but not being able to see anyone else, particularly my daughter, was more difficult. My mom sat in the parking lot because she couldn’t come in since they only allowed one person.
If I had known four years prior when I first was getting sick, if they had immediately diagnosed and figured it out, I don’t know if I would have cared as much because I didn’t have my daughter then. Recovering from surgery was all about needing to get back to as best as I could be because I’m her dad. I’m the one that she plays with. I needed to be able to still do these things.
If you believe something is wrong, if you listen to your body and something is different, go through every process to figure it out.
Living with One Lung
Vacations are different. Getting to sea level is always amazing. We plan our trips based on where I can operate well. For example, I can’t go to Mexico anymore because I can’t breathe. I need to sit in an air-conditioned room because that’s where I can breathe.
I have a one-and-a-half-year-old son now. I can sit and throw a ball with him and play horse, but it comes with a lot of breaks. We make sure that what we do is essentially climate-controlled. It’s different and you have to work through it.
Words of Advice
If you believe something is wrong, if you listen to your body and something is different, go through every process to figure it out. Don’t be arrogant or cocky about where you believe you are and don’t blindly trust every medical professional you find. Some rules and things get in the way of how you can get the testing you need. Don’t go through the course because that’s what they tell you to do. Get hungry. Find the information. Advocate for yourself.
From Hospice to Hope: Eugenia’s Fight Against Stage 4 Lung Cancer
Eugenia was diagnosed with poorly differentiated stage 4 non-small cell lung cancer at the age of 46. Her symptoms began around Christmas 2018 with a lingering illness, followed by chest tightness and coughing up blood. She initially dismissed her symptoms, but after experiencing significant bleeding, she sought medical attention in February 2019. Despite her concerns, her doctor initially attributed her symptoms to anxiety. However, blood tests indicated abnormalities, prompting further scans that revealed a 5 cm mass at the apex of her right lung and another tumor compressing her bronchi.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Initially skeptical of the non-curative treatment options presented to her, Eugenia sought alternative medical opinions. When her condition worsened, she finally met an oncologist who admitted her for further evaluation. A biopsy was performed but was later deemed ineffective due to an error in sampling. By this time, her tumor had expanded, obstructing 95% of her trachea, leading to severe respiratory distress.
Doctors started her on chemotherapy in June 2019, administering small doses due to concerns that the tumor might break apart and cause fatal complications. Despite the treatments, her condition continued to deteriorate, culminating in respiratory failure by mid-July. She was transferred to a higher-level care center where she underwent brachytherapy, external radiation, repeated cryotherapy, and CyberKnife treatment. These interventions successfully removed the tumor after nine days of intensive procedures.
During her recovery, another setback emerged: a bowel obstruction that required emergency surgery. The obstruction turned out to be cancerous, escalating her condition to stage 4 non-small cell lung cancer. Following this diagnosis, her treatment plan was abruptly halted, and she was placed in hospice care. Despite this, she remained determined to fight for her life.
Eugenia learned about an immunotherapy drug and insisted on trying it, despite her oncologist’s reluctance due to her frail condition. With limited time left, she convinced her doctor to administer the treatment, starting the immunotherapy on August 29, 2019. Over time, this treatment proved to be the key factor in her survival. Five years later, Eugenia remains alive, defying the terminal prognosis she was given. She challenges the notion of “incurable” cancer and shares her experience to inspire others to advocate for their care.
Surgeries: tracheostomy & emergency bowel obstruction surgery
Immunotherapy
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.
Adenoid Cystic Carcinoma: The Rare Cancer That Almost Went Undiagnosed
Alyssa was diagnosed with adenoid cystic carcinoma in September 2024. Her diagnosis followed months of unrelenting jaw pain that was repeatedly dismissed as a TMJ disorder or stress. Alyssa’s first symptoms emerged during her third pregnancy, but the pain persisted postpartum. Being a dental hygienist, she knew her symptoms did not align with a TMJ disorder. Despite her advocacy, she encountered multiple misdiagnoses and ineffective treatments until she insisted on specific imaging, which revealed a tumor in her parotid gland.
Alyssa underwent a biopsy, which was inconclusive, prompting her to proceed with surgery. The operation lasted over four hours as the surgeon carefully removed the 3 cm tumor entangled with her facial nerve, preserving nerve function. Post-surgery, Alyssa faced radiation therapy, undergoing 20 sessions at Huntsman Cancer Institute. The treatment, though effective, caused side effects like dry mouth, taste changes, sore throat, and significant skin irritation.
Her experiences with adenoid cystic carcinoma were mentally taxing, intensified by anxiety stemming from prior health challenges, including a near-fatal postpartum infection and a life-saving hysterectomy. Alyssa leaned on therapy, visualization techniques, and her faith to navigate the isolation of radiation and the emotional toll of her journey.
She emphasizes trusting one’s instincts and knowing one’s body while advocating for persistence in seeking answers. Despite challenges, Alyssa remains resilient, finding strength in her family, faith, and the hope of inspiring others to persevere.
Name: Alyssa N.
Age at Diagnosis:
31
Diagnosis:
Adenoid Cystic Carcinoma
Symptoms:
Persistent jaw pain
Lightning-like facial pain during the first bite of meals
Treatments:
Surgery: tumor removal
Radiation
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: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
Thriving with Multiple Myeloma: Bispecific Treatment Options
Multiple myeloma patient advocate Kenny Capps speaks with multiple myeloma expert Dr. Carl Ola Landgren of the University of Miami Sylvester Comprehensive Cancer Center as he shares actionable insights on the latest treatments, effective side effect management, and innovative therapies. Gain the knowledge you need to thrive with multiple myeloma and take charge of your journey.
Your Guide to Thriving with Multiple Myeloma: Expert Tips and Insights
Hosted by The Patient Story Team
Join us for an empowering session where a leading expert shares actionable insights on the latest treatments, effective side effect management, and innovative therapies such as bispecifics and CAR-T cells. Gain the knowledge you need to thrive with multiple myeloma and take charge of your journey. Why Attend?
Stay Updated: Learn about the newest treatments like CAR-T cell therapy and bispecific antibodies. Manage Side Effects: Discover effective strategies for managing treatment side effects to improve your quality of life. Thrive Daily: Get expert tips for living well and staying active while managing multiple myeloma. Personalized Insights: Understand how to tailor your treatment journey with the latest medical advancements and expert advice.
Learn about treatments like CAR T-cell therapy and bispecific antibodies. Discover effective strategies for managing treatment side effects to improve your quality of life. Get expert tips for living well and staying active while managing multiple myeloma. Understand how to tailor your treatment journey with the latest medical advancements and expert advice.
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.
Tiffany Drummond: I’m a patient advocate with over 20 years of experience in cancer research. My journey as a caregiver began when my mother was diagnosed with endometrial cancer in 2014. I quickly realized the challenges of finding resources, support, and shared experiences, and I’m 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’ve got you covered with real-life patient stories and educational programming with subject matter experts. I’m here to help you and your loved ones best communicate with your healthcare team as you go from diagnosis through treatment and survivorship.
We want to thank our sponsor, Johnson & Johnson, for its support, which helps us host more of these programs for free to our audience. The Patient Story retains full editorial control over all content as always. We also thank all of our promotional partners for their support. Because of you, our programming reaches the audience who needs it. I hope you all find this program helpful, but please keep in mind that the information provided is not a substitute for medical advice.
We have two amazing guests that I want to introduce as we talk about the latest treatment options for multiple myeloma. Dr. Carl Ola Landgren is a hematologist and oncologist, professor of medicine, and division chief of myeloma in the Department of Medicine. He is the director of the Sylvester Myeloma Institute at the Sylvester Comprehensive Cancer Center and co-leader of the Translational and Clinical Oncology Program at the University of Miami. We are so happy to have you, Dr. Landgren. Thank you so much for taking the time to be with us. Our moderator will be Kenny Capps, a multiple myeloma survivor and thriver.
Kenny Capps: Thanks, Tiffany, I’m honored to be your moderator. I’m the executive director of Cancer Active, a nonprofit organization dedicated to empowering those affected by cancer to live active and fulfilling lives. I’ve been on my journey with multiple myeloma since 2014. I understand many of the challenges that patients must navigate.
I was diagnosed relatively young at the age of 42 and have lots of bone involvement, spinal compression, fractures, and lesions. I’ve undergone infusions and a bone marrow transplant. I’ve lost count of how many bone marrow biopsies I’ve had. In 2023, I relapsed, changed therapies, and added radiation treatment to the list of things I’ve never done before.
I did all this while raising three kids, training 30 to 70 miles a week, running 1,200 miles across the state of North Carolina, and experiencing all the celebrations and heartbreaks that come with life, regardless of whether you’re treating cancer or not. I’ve had many experiences and a lot of education as an athlete, a coach, an attorney, and a father, and 10 years ago, I combined all of those experiences to become a patient advocate and a Cancer Active leader.
We’re fortunate to have one of the leading voices in multiple myeloma research and treatment with us. Dr. Landgren is not only a pioneer in advancing care for this disease but also deeply committed to translating cutting-edge science into real, human-centered solutions for patients like you and me. His work has helped reshape how we understand and treat multiple myeloma, giving us more options and more hope than ever before.
This conversation is all about you. We’ll explore the latest in multiple myeloma treatment and emerging research, and, most importantly, answer your questions in a way that makes this topic understandable and actionable. It’s my privilege to introduce our distinguished guest, Dr. Carl Ola Lindgren.
Dr. Carl Ola Landgren: Thank you very much for having me. It’s a great pleasure and a great honor.
What Does Relapsed/Refractory Mean in Multiple Myeloma?
Kenny: Our audience is pretty savvy, but for those unfamiliar with the term relapsed or refractory in the multiple myeloma setting, could you break down what that means?
Dr. Landgren: Relapsed and refractory refers to the multiple myeloma disease becoming active again. Someone who is newly diagnosed would typically receive combination therapy with or without transplant and with continued therapy, which we also call maintenance therapy. Over time, unfortunately, the majority of patients will have the disease become active again and this is because we do not have an established cure for the disease.
In 2025 and onwards, many patients can live for 10 to 20-plus years and there will be patients who will not have their lifespans shortened, which is what the field is going for. For the most part, the disease will be managed as a chronic disease as we try to develop definitive cures.
If there is reappearance of rising levels of proteins in the blood, if other clinical suspicions are going on that would trigger additional radiological assessments, like PETs, PET/CTs, or MRIs, or if we do bone marrow biopsies and see that there is more disease, then that would be consistent with the disease becoming active again.
When we do clinical trials, we have rule books for what is what. We have a rule book for what’s called a partial response, what’s a complete response, what MRD negativity is, and we also have rules for what progressive disease is and how to capture that. If you don’t have a common language, we cannot compare the results across different trials, so that’s very important. We worked on that as a community for over 20 years.
In the setting of those rules, a relapsed/refractory disease refers to a situation when a patient has rising levels of markers by these definitions we have, either while being on a given therapy or if it happens within 60 days after stopping therapy, then that would also count as a relapsed/refractory state.
We looked at drugs that had a good benefit, were not too toxic for the patient, had no other contraindications, and tried to see how we can partner them with other drugs than we did the previous time we gave them.
Dr. Landgren
Kenny: About refractory, does that mean that they are unable to continue along that line of treatment?
Dr. Landgren: The word refractory carries probably more focus on things that are not true, which is that you cannot go back and use that treatment. In reality, what it means is that right now, it is not the optimal therapy to use going forward. You can revisit and use that drug in the future, maybe in combination with other drugs at a later time point as what we very frequently do. We recycle the drugs.
An example could be you use a proteasome inhibitor, an IMiD (immunomodulatory drugs), and a steroid with a CD38-targeted antibody as a combination therapy and you give that for a certain number of cycles. You may collect stem cells, give more cycles, do a transplant or not, and go to a maintenance therapy. You may have an IMiD at a lower dose with the CD38-targeted antibody and eventually, you may step down to a single drug IMiD.
Many years later, there’s a reappearance of protein in the blood. Could you go back and use a proteasome inhibitor? Yes, you can. Could you go back and use the CD38-targeted antibody? Yes, you can. Is it the best thing to use that same IMiD at the same dose level? Probably not because the disease was able to grow through that. What about increasing the dose? Probably not the best option right now, so maybe switch to another IMiD or some other drug. Then you can overcome this reappearance or relapse and get many more years with the same benefit. You get rid of the disease and keep the disease from becoming active.
If the disease comes back again, could you not ask the same question? Could you go back to those same drugs, including the first IMiD? I would think yes. You could think about using the same drugs over and over again, but there are so many new drugs coming to the field. Many times, we are going to new mechanisms of action as the next step forward.
At some point, when we have used all the different mechanisms of action, we will go back, recycle, and use them in different combinations. We looked at drugs that had a good benefit, were not too toxic for the patient, had no other contraindications, and tried to see how we can partner them with other drugs than we did the previous time we gave them.
Kenny: When you’re saying that, what I think about is lenalidomide, bortezomib, and dexamethasone, and then a maintenance therapy after a bone marrow transplant, but a patient might stop responding to 5 or 10 mg of lenalidomide at some point in the future. You’re saying that they could switch over, so maybe pomalidomide at some point as a substitute, but that doesn’t discount the possibility that lenalidomide might be a solution for them in the future.
Dr. Landgren: That’s exactly right. If you look at how these drugs were developed, they were developed for certain indications. You mentioned pomalidomide as the next move and that’s the example I gave between the lines. I didn’t mention the drugs, but you filled in the blanks and the drugs you gave were probably the drugs that, for the most part, would fit with the example I gave.
We do not have an established cure, so if you look at the population databases that are currently available, unfortunately, the majority of patients will have the disease become active again at some point.
Dr. Landgren
Pomalidomide was developed in 2006 and was given to a patient that lenalidomide failed and that’s how the FDA approval was granted. It’s a logical thing to do. What hasn’t been done in a trial is to go back and revisit lenalidomide at a later time point. Why is that? Once the drugs are approved, they are commercially available and we can prescribe them.
It addresses an important topic of the so-called real-world evidence and that’s where people like me come into play. I have been a doctor for 29 years. I’ve treated probably thousands of patients and used all the FDA-approved drugs. I’ve worked on very many clinical trials, phase 1 and phase 2 studies, and also some of the phase 3 trials. I have a lot of experience with these drugs.
When people like me use the drugs every day in our clinics, we learn how to use them in a recycled manner for patients who have the disease coming back. Sometimes we document and many times, we talk about it. When I’m at meetings, many colleagues who may see fewer patients could come up and get the advice. We try to share our experiences with each other and that’s how we help each other as a community.
What Percentage of Multiple Myeloma Patients Experience Relapse or Become Refractory to Initial Therapy?
Kenny: Given the evolving landscape of myeloma treatment, what are the current estimates for the percentage of patients who experience relapse or become refractory to initial therapy? How do factors, such as patient age, disease stage, and genetic risk profile, influence these rates?
Dr. Landgren: We do not have an established cure, so if you look at the population databases that are currently available, unfortunately, the majority of patients will have the disease become active again at some point. There’s a small group of patients whose disease doesn’t come back and that’s an important piece to point out that the disease is curable.
The problem is that the disease is very different from patient to patient. We call it genomically heterogeneous, which means it’s not the same disease in every patient. When we profile the disease, we can see that if we perform whole genome sequencing, the average patient has a few thousand mutations and you can also see alterations in the immune system. With a disease that is so different from patient to patient, it’s not surprising that when you give the same therapy to everyone, the outcome would be different and that’s why we say there are different prognoses.
As the treatment gets better and better, more and more patients could benefit from the therapies, so there will be fewer patients who will have the disease return sooner.
Dr. Landgren
People have talked about high risk or standard risk in this very setting. The concept of high-risk disease is a moving target. If you have a weaker treatment and you treat 1,000 patients, more patients will not benefit from that treatment because the disease biology could be stronger than the therapy over time and it will come back sooner.
As the treatment gets better and better, more and more patients could benefit from the therapies, so there will be fewer patients who will have the disease return sooner. For that reason, the so-called high-risk group is shrinking and it’s always in the light of how you treat. Ultimately, with the best available therapy, there is no high-risk disease and we could envision a scenario of a cure.
The rate of relapse is in the light of how we treat, but we still don’t have a definitive cure, so statistically, the majority of patients will have their disease coming back. What’s different at this time compared to 10 or 20 years ago is the duration of the benefit of therapy is drastically different.
The disease will probably come back for the majority of patients, so we are trying to develop curative strategies that are definitively curative.
Dr. Landgren
When I was in fellowship 25 years ago, the time from diagnosis to a patient passing away from the disease could be only one or two years. I have many patients who are 20 years out and doing great, and many of those patients will not die due to myeloma. We will all die at some point, but many people will probably die with myeloma not from myeloma, which is a huge change.
Kenny: Yeah, and that’s a phrase I hear more and more, which is good to hear.
Dr. Landgren: If we can keep the disease away and people can have a good quality of life and no shortening of lifespan, that’s a huge deliverable. For many patients, we’re already at that point, but there may have to be changes in treatment. The disease will probably come back for the majority of patients, so we are trying to develop curative strategies that are definitively curative.
Does Traditional Chemotherapy Still Play a Role in the Relapsed/Refractory Setting?
Kenny: You mentioned quality of life and that’s impacted by the progression of the disease, side effects from treatment, or the psychosocial challenges that patients have to deal with day-to-day that negatively impact how they feel and what their life is. As you mentioned, the treatments over the past decades have changed dramatically. In the context of relapsed/refractory multiple myeloma, does traditional chemotherapy still have a role to play in the world of IMiDs, CD38 treatment, bone marrow transplants, and CAR T-cell therapy?
Dr. Landgren: We don’t want to stop using drugs that we know work until we have a definitive cure. You want to keep all the different options. We want to have all the doors open. But the order and the priority of the different therapies will probably continue to change.
When I was in fellowship, the therapies were very, very inferior. The overall survival was one to two years. The remission rates were in the single digits. These days, if I treat, I would achieve remission rates of 90 to 95-plus percent. I have MRD negativity rates in my newly diagnosed patients of over 70%.
Will that mean that chemotherapies will go away? I don’t think so. Not until we have a cure. Potentially, the role for these therapies will shift that they will be options if patients have later line relapses.
Dr. Landgren
For the majority of my patients, I don’t use any chemotherapy. For many years, we have also explored harvesting the stem cells and holding them, so you could also not go for a transplant. Transplant is chemotherapy. In the United States, it’s called transplant, but in Europe, it’s called high-dose chemotherapy and it is chemotherapy because it’s melphalan chemotherapy. The stem cells are not part of the treatment. They’re a way to recover from the chemotherapy.
There will be a shift away from chemotherapy as we see more and more immunotherapies coming. The CD38-targeted antibodies are coming at full speed, but there are also new antibodies with new targets coming. In 2024, the FDA approved CAR T-cell therapy for the first relapse.
Will that mean that chemotherapies will go away? I don’t think so. Not until we have a cure. Potentially, the role for these therapies will shift that they will be options if patients have later line relapses. If you have immunotherapies upfront and if there is recurrence, there are more immunotherapies. If there is a recurrence again, there are more immunotherapies. Eventually, maybe the chemotherapies will be part of it.
There will be patients who will be outliers from this principle. Chemotherapy drugs are the most tumor-sensitive drugs. Some patients to whom we give immunotherapies don’t do as well. Those patients are a minority, but there are patients like that, so it’s good to have options.
Bispecific Antibodies vs. CAR T-cell Therapy
Kenny: Could you discuss further the differences between bispecific antibodies and CAR T-cell therapy?
Dr. Landgren: A bispecific antibody is exactly what the name tells you: it’s bi, so it’s two, and it’s specific, so it’s specific in the sense that it goes for myeloma and it’s linked towards immune cells, T cells. The way these antibodies are engineered is they have two heads. One head binds to a protein on the surface of the myeloma cells and the other head binds to a surface marker on the T cell. On the T cell, the marker is CD3. For the myeloma cells, there are currently two approved antibodies that have two different targets: BCMA (B-cell maturation agent) and GPRC5D.
A bispecific antibody is exactly what the name tells you… One head binds to a protein on the surface of the myeloma cells and the other head binds to a surface marker on the T cell.
Dr. Landgren
There are three bispecific antibodies approved for multiple myeloma. All of these antibodies bind to CD3. They bring the T cells to the antibody, so they hold on to the T cell, and when they grab the myeloma cell with the other marker, the myeloma cell is now neighbors with a T cell and the T cell will then do its job of killing the myeloma cell. That’s how bispecific antibodies work.
CAR T cells is an acronym for chimeric antigen receptor T cells. T cells circulate in the blood and you can take them out from the blood of a person. They are not stem cells. They’re not the type of cells you would collect for a transplant. These are circulating immune T cells. You can take them out and send them to an approved facility. They will do a transduction of these T cells, which means they are being exposed to a genomic vector that will change the DNA in these cells. They will insert certain information that contains instructions for these T cells to do things that they normally wouldn’t do, which is to develop an antenna on their surface and that is what the receptor is. They are the same T cells plus the instruction that says to make this receptor on their surface. Other than that, they do the same job they normally would do. You feed them with glucose and nutrients and keep them warm.
In a way, bispecific antibodies and CAR T cells do the same thing. They take advantage of T cells.
Dr. Landgren
In the current development setting, about four to six weeks later, you give the CAR T cells to the patient. When they reenter the body, they will be let in because the body will recognize them as their own T cells. When they come in, they are now programmed with receptor-like antennae on the surface to bind to something that fits, which is the BCMA protein. When they bind to it, same as the bispecific antibodies, now a T cell is neighbor to a myeloma cell and when it sees the myeloma cell, it will kill it.
In a way, bispecific antibodies and CAR T cells do the same thing. They take advantage of T cells. In one setting, you keep the T cells in the body and give a matchmaker, which is the antibody. In the other example, you take out the T cells, modify them, and give them back.
There are other ways of doing it. You can have donors give blood where you can make something called allogeneic CAR T cells, which is a mass-produced CAR T cell that comes from a pool of donors, and you give that to multiple patients. The idea here is that you can give them immediately because there is no need to harvest them, manufacture them, and give them back. You have donor-derived T cells. Unfortunately, there are none yet approved for myeloma.
There are also other technologies where you can insert mRNA-made T cells and bispecific antibodies. Similar to how the COVID vaccines were developed, you can use mRNA infusions to synthesize these types of products within the body. That has not yet happened in humans, but there are a lot of animal models. We’ll see how these mRNA-based technologies will speed up the development of immunotherapies. This is going to be very, very exciting.
The jury is still out on the right sequence, whether you should do CAR T-cell therapy first and then at a later time point, bispecific antibodies or vice versa.
Dr. Landgren
Are There Specific Patients Populations More Likely to Benefit from Bispecific Antibody Therapy?
Kenny: Are there specific patient populations that are most likely to benefit from bispecific antibody therapy?
Dr. Landgren: Currently, there is no head-to-head randomized study that has compared patients given a bispecific antibody and patients given CAR T-cell therapy. All the studies have compared CAR T-cell therapy with older combination therapies or bispecific antibodies compared with older combination therapies.
What we do know is if a patient has an activation of the disease or there is a relapse, the majority of patients have a slower evolution of the disease. The disease usually shows up as increasing protein markers in a blood test and it can go on for many weeks or even months before you start making decisions to change the therapy, so you have some time to make treatment decisions.
But for some patients, the disease becomes active in a short timeframe, so you cannot wait to collect the T cells, send them for manufacturing, keep the disease under control with bridge therapy, and then give back the CAR T cells. In their case, a bispecific antibody is the better option.
If you have patients where the disease is moving more slowly, you have two options. You could argue which is better and I would say different experts would have different opinions. In my experience, different patients will have different opinions.
The jury is still out on the right sequence, whether you should do CAR T-cell therapy first and then at a later time point, bispecific antibodies or vice versa. There are so many details when it comes to this and we don’t have the data to fully answer.
If you started with a bispecific antibody, could you do CAR T-cell therapy in the future?
Dr. Landgren
If you treat someone with CAR T-cell therapy, on average, it would last for many years. But if a patient, God forbid, has a shorter benefit, let’s say 6 or 12 months, going right to a bispecific antibody with the same target usually doesn’t work because the time in between is too tight. But if you go to another therapy with another target with another mechanism of action, could you revisit that same target using a bispecific? I would say the answer is yes for the most part. It comes back to recycling drugs or targets.
If you started with a bispecific antibody, could you do CAR T-cell therapy in the future? Yes, with the same target, but if you do them back to back, that may not be optimal. If the cells build up some form of resistance to the same mechanism of action, you want to distract the cells by doing something else to bring down the disease. If you get good mileage out of that and need to switch again, that could be the time to go back to the same target.
Common Side Effects: Bispecific Antibodies and CAR T-cell Therapy
Kenny: For patients treated with bispecific antibodies, could you discuss the most common side effects and how they are managed?
Dr. Landgren: Compared to bone marrow transplants, CAR T-cell therapy is way less toxic, so the patient experience is much easier. I’ve seen patients who were transplanted years ago and got CAR T-cell therapy and they said this was not even comparable. My oldest patient who turned 87 years old underwent CAR T-cell therapy when he was 86. We would not transplant an 86-year-old, but you could give CAR T cells. I have also treated patients in that age category with bispecific antibodies. I have many patients who have done that and they do extremely well. On average, both CAR T-cell therapy and bispecific antibodies are very, very well-tolerated overall, but everything has some form of side effect. If there is no side effect, usually there is no effect, unfortunately.
On average, both CAR T-cell therapy and bispecific antibodies are very, very well-tolerated overall, but everything has some form of side effect.
Dr. Landgren
When you give a CAR T cell product, you would expect to see cytokine release syndrome (CRS), which means the immune system gets triggered by this immunotherapy and releases substances that the immune system uses to communicate with different immune cells and other surrounding cells. These are the cytokines and chemokines. When they get released, it leads to an immune reaction. It’s a ramped-up version of a person getting sick from an infection or inflammation. Patients get a fever, they don’t feel well, and they could have organs responding to it, like blood pressure going down and things like that.
There are two approved CAR T cell products. When you give cilta-cel, CRS usually takes about a week to kick in. Presumably, that’s the time it takes for the CAR T cell product to amplify, expand, and become fully active. But if you look at the alternative protocol ide-cel, usually the same phenomenon with CRS happens sooner, around the next day. The time windows are different for these different products for reasons we don’t completely understand.
The duration of CRS is usually one to a few days. If the patient has a fever, we can treat it with acetaminophen or we can also give steroids. If it’s a little bit stronger, we would give IL-6 (interleukin-6) receptor inhibitors. There’s a drug called tocilizumab that we use quite frequently and usually, that takes the edge off it. We may have to give IV fluids if the blood pressure goes down a little bit.
Unfortunately, some patients get a little bit sicker and we may have to give them additional drugs. But for the most part, CRS is very manageable and the majority of patients don’t have severe side effects. When this has leveled off, the patient would leave the hospital if the patient was admitted.
Many institutions, including ours in Miami, can administer CAR T-cell therapy outpatient. We have the patient come in, give the CAR T cells, and have the patient stay in close proximity to our institution. If the patient were to develop CRS, we would treat it along the lines of what I said. We may have to admit the patient after a week for one, two, or three nights, and then we can discharge them.
For a few weeks, we would do labs once a week to make sure blood counts are stable and then we would do them once a month and eventually, every three months. We would keep the patient on prophylactic medications with antivirals and antibiotics. We usually give IVIG infusion, which means that we supplement immunoglobulin G levels to keep the patient free from infections. Over time, all these things will be taken off. The average patient could be off therapy for many years and do blood tests every three months.
For the most part, CRS is very manageable and the majority of patients don’t have severe side effects.
Dr. Landgren
For bispecific antibodies, you see the same CRS phenomenon. If you look at the registrational trials that led to the approval of these drugs, the rates are quite high with over 70 or up to 80 percent of patients developing CRS. Most of them are less intense. They are also along the lines of what I said, like fever and drops in blood pressure.
Nevertheless, the FDA has put in the USPI (United States Prescribing Information) saying that the first few doses should be done inpatient to monitor and see if the patient develops CRS, which the majority of patients do if you follow the standard trajectory of the standard recommendations.
Our group at the University of Miami has used premedication with a single dose of IL-6 receptor inhibitors. We give one dose one hour before the very first dose of a bispecific antibody. We presented this at ASH 2024 in San Diego, showing that you can decrease that rate of CRS to 10% and they virtually are always the lowest grade.
This is a huge step forward and sets the stage for thinking about doing this outpatient. If you can premedicate and avoid 9 in 10 patients from having any side effects or if the patient has CRS symptoms and you could guide them on the phone to come in for monitoring or do some intervention overnight, that’s a huge improvement. Premedications should be part of the next step and we are working on that with other groups. I hope in 2025 that these therapies could also be given outpatient.
It’s very important for physicians who treat patients with bispecific antibodies to keep an eye on immunoglobulin G levels and use proper antibiotic and antiviral medications, so patients don’t run into opportunistic infections
Dr. Landgren
An important side effect profile for bispecific antibodies is infection. I have seen this firsthand because I’ve been involved with drug development for a very long time. When I worked in Miami, I was the chief of the Memorial Sloan Kettering myeloma program for many years, so we were involved a lot in these early developments. We don’t want to develop great drugs that hold the myeloma away and allow patients to have a good quality of life but have other problems arising, such as infections.
It’s very important for physicians who treat patients with bispecific antibodies to keep an eye on immunoglobulin G levels and use proper antibiotic and antiviral medications, so patients don’t run into opportunistic infections, which could be very dangerous. This is very important to emphasize. We can premedicate the immediate side effects, but the doctors need to stay on top of it. Patients also need to know that if they develop an infection, they should always alert their doctor.
Clinical Research and Development
Kenny: When it comes to discussing clinical trials and patient support, what do you see as the most promising areas of investigation in terms of bispecific antibody development?
Dr. Landgren: We will see more and more trials with bispecific antibodies that will be used in combinations. At ASH 2024, we saw combinations of two bispecific antibodies: BCMA-CD3 and GPRC5D-CD3. This is the REDIRECT trial, which has been discussed at prior meetings. There were more patients this time and you see very high rates of response. You also see BCMA-CD3 partnered with lenalidomide or carfilzomib, a proteasome inhibitor, in the MagnetisMM-20 study. There are many other studies as well.
What I’m talking about are combinations of bispecific antibodies and other drugs. Eventually, that’s probably what these drugs will fit in with the best. What we will learn, hopefully very fast, is which are the better options to partner them with, the optimal dosing schedules, and the optimal duration of therapy. Can you step down the dose? Can you give it less often? Can you even stop some of these therapies over time?
I don’t have the evidence to prove this, so don’t take this 100% for sure, but based on my looking at data, I project that patients who have been treated with bispecific antibodies, if they have been successfully treated for an extended period or for whatever defined window of time, they may be able to go off therapy.
The missing piece that we are trying to develop is a blood-based MRD test. If you could give treatment and prove that there is no detectable disease, if you could reliably check every three months and make sure there is no disease, many patients could potentially be off therapy for extended periods. It’s an important piece that’s currently missing and we are working on that together with other groups to move that forward.
What Should Patients Consider When Deciding on Bispecific Clinical Trial Participation?
Kenny: For patients who might be considering a clinical trial involving bispecific antibodies, what factors should they consider when making the decision?
Dr. Landgren: The field is moving forward so fast. At this time, bispecific antibodies are only FDA-approved for patients who have failed four or more prior lines. We see from all these trials that they seem to work very well for patients who had their first, second, or third relapse, but that’s only available in trials at the current time.
Getting a second opinion is very well-invested time.
Dr. Landgren
I mentioned combinations with IMiDs and proteasome inhibitors, but there are other drugs as well. I mentioned two bispecific antibodies, but you also have naked antibodies like daratumumab being combined with bispecific antibodies.
If someone is looking for a trial in the space of one to three prior lines, you have to determine what’s available, where you live, what’s feasible to do, what are the different options, what are the dosing schedules, and what are the safety profiles. The side effects always should be looked at in combination with efficacy. It’s a balance between the two. Look at what’s available and make wise decisions. If you’re not sure, go for a second opinion. Getting a second opinion is very well-invested time.
What Makes a Cancer Center Comprehensive?
Kenny: Could you tell us more about the oncology social work service at the Sylvester Comprehensive Cancer Center? What makes it truly comprehensive?
Dr. Landgren: We have a very strong team for multiple myeloma. We have doctors, nurse practitioners, nurses, pharmacists, social workers, patient coordinators, navigators, and researchers. We have a very, very comprehensive program.
Many times, patients ask about the cost and implications of the drugs due to insurance. People are changing from one insurance to another or someone is switching to Medicare and wants to know how that works. We have people dedicated to our program. If I get asked this, which I very frequently do, I will always involve my social worker and finance people to help guide the patient. As a doctor, I don’t have access to all this information, but I have a very strong team that will always help me.
If they come to us for help, we want to make sure that we can give every patient the same high level of knowledge, experience, and care that they deserve.
Dr. Landgren
Overcoming Barriers to Patient Engagement
Kenny: One of the challenges is getting some patients to the clinic because I have a feeling that some of them feel like it’s overwhelming. It’s beyond them either because of the cost or the amount of effort on their part to understand. There’s a base layer of knowledge and there’s a language that they have to learn to speak. Sometimes I have a feeling that the patients feel like they don’t belong in this world. How do you navigate that with a patient? Sometimes you have limited time yourself to engage with them. You can’t solve all the problems, like psychosocial issues, mental wellness issues, diet and nutrition issues, and so forth. All of those things are not where you are, but they’re still your patient.
Dr. Landgren: I serve as the chief of the program, so I’ve thought about these things a lot and how we can scale this up and give the ultimate quality for every patient. How can we treat every patient and provide VIP medical care and support?
The way I try to build our program is to build multidiscipline cells of professionals. Every doctor works with a nurse practitioner, a nurse, and a patient coordinator. That’s the backbone of the little group that we have. We have been growing quite fast with an increase in patients of over 20% every year. If the patient volume goes up, when the group gets too busy, then we hire another doctor, nurse, nurse practitioner, and patient coordinator.
At this point, we have close to 10 of those cells. The right size for our program is somewhere between 15 and 20, but right now, 10 is a good number. We will probably hire another one or two and keep on going as our needs grow because there are a lot of patients who need our help. We don’t wish anyone to have myeloma, but if they come to us for help, we want to make sure that we can give every patient the same high level of knowledge, experience, and care that they deserve, and we are very committed to doing that.
Our program is very active when it comes to different patient organizations… I work with anyone who reaches out to us and I always dedicate my time and attention.
Dr. Landgren
On top of that, we have pharmacists, dietitians, finance, and social workers who support all these groups. The model we have is to build a very small group of experts that hold everything together, where everyone knows the patient and the patient knows them. You don’t call a 1-800 number; you call directly or send a message and we will respond usually within an hour if you send a message through our portal. We will be very, very responsive.
We also organize patient seminars. We have programs where patients can volunteer if they want to be part of that. They can talk to other patients. Some patients like that, some patients don’t, but we have that as an option. Our program is very active when it comes to different patient organizations. I’m very inclusive as a person. I welcome all the different organizations and I’ve done so for a long, long time.
Finding More Information About the Latest Relapsed/Refractory Treatment Options
Kenny: What advice would you give to patients and caregivers who are seeking more information about the latest treatment options for relapsed/refractory myeloma?
Dr. Landgren: If you have a doctor who you trust and things are going well, work with that doctor and follow that doctor’s recommendations. If you want to have a second opinion, it’s very easy these days to get one. You can travel or if you’re within the States, for the most part, telemedicine visits are available and it’s very important to be able to continue that.
After COVID, I know that there have been some discussions about whether telemedicine should remain or not. All the patient organizations should band together and make sure politicians will never be able to change that because that is going to create barriers for patient access.
If you live in a big city, you have access. If you live in a smaller town, you don’t have access if you have to travel long distances, if you are older, or if you’re frail. Telemedicine breaks down all these barriers. In my opinion, the number one priority for all patient organizations is to make sure that no politician will ever change that because that’s going to cause a lot of patient suffering. In the end, it’s going to take people’s lives and have a lot of negative impact.
Conclusion
Kenny: I love it. Thank you, Dr. Landgren, for taking the time to speak to The Patient Story.
Dr. Landgren: Thank you very much for having me. It was a great pleasure.
Tiffany: What an engaging conversation. Thank you again, Kenny and Dr. Landgren, for taking the time to dive deep into the latest treatment options for relapsed/refractory multiple myeloma patients. If you are a patient advocate, patient, or caregiver, consider being a voice leader in your community or with The Patient Story.
It’s important to be empowered so that you and your caregivers can make informed decisions about your care and that includes being educated about the latest treatment options. Thank you again to our sponsor, Johnson & Johnson, for supporting our independent patient program and to our promotional partners. Until next time, I’m Tiffany Johnson signing off and on behalf of The Patient Story, thank you for watching.
Small Changes – BIG IMPACT: Multiple Myeloma Skin-Related Side Effects
Hosted by The Patient Story Team
Join us for an “in the field” interview on skin-related side effects as a results of myeloma treatments. This add-on interview comes thanks to catching Dr. Larisa Geskin, Dir. of Cutaneous Oncology at Columbia University during her lunch hour. Having to duck into a tiny break room with spotty wifi, Dr. Geskin was driven to get on our interview and talk to Myeloma advocate Kenny Capps to discuss common skin-related side effects from myeloma treatment.
Symptom: None; found through blood tests Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib
Overcoming Racial Barriers in Clinical Trials from a Lung Cancer Oncologist
Marjory Charlot, MD, MPH, MSc, is a medical oncologist and health services researcher at UNC Lineberger Comprehensive Cancer Center. She primarily specializes in people who have lung cancer. Her research focuses on increasing awareness and access to clinical trials among Black communities and communities with low-income or persistent poverty.
Thank you to AbbVie, Genmab, and Karyopharm for their support of 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 informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Dr. Marjory Charlot: I’m a medical oncologist and health services researcher. I work at UNC Lineberger Comprehensive Cancer Center and primarily specialize in lung cancer patients. Part of my work is working in the hospital for patients who either have a suspicion of cancer or have a cancer diagnosis but are hospitalized for symptoms of their cancer or side effects from their treatment. As a health services researcher, my research focuses on increasing awareness and access to clinical trials among Black communities and communities with low-income or persistent poverty.
Outside of medicine, I’m a wife and a mom. I have two children, one in elementary school and one in middle school. I recently completed an aquathlon, a swim-run competition, which is a big deal for me because I don’t have a great relationship with swimming. I learned to swim as an adult, so it was a big accomplishment for me to be able to complete this duathlon, so that was exciting. I also love to travel and visit different places across the US or abroad. I also love to eat. I love various types of foods.
When I completed my medical training, I knew that I wanted to be an oncologist. There was no question about that.
A Winding Path to Medicine
Nikki: What was your number one driver to becoming a doctor?
Dr. Charlot: I knew from a young age that I wanted to become a doctor. I grew up in Mattapan, a neighborhood in Boston, and I was privileged enough to have a Haitian pediatrician who had his practice in the community and did house visits. The Haitian community where I grew up was tight-knit and it was informative for me to be able to see someone who shared my heritage be a physician and be one with the community, so I wanted to be exactly like him.
My path to becoming a doctor was not straight and narrow. After I graduated from college, I spent a couple of years working in different types of advocacy work related to education and moved on to teaching middle school students about health professional careers. After that, I got my degree in public health and then after that, I went to medical school. It was a winding path to medicine, but I knew that’s where I would end up eventually.
Why Oncology Became Her Calling
Nikki: How did you end up specializing in lung cancer?
Dr. Charlot: When I completed my medical training, I knew that I wanted to be an oncologist. There was no question about that. I felt like it was the field where you develop close-knit relationships with your patients, so that was a no-brainer. Oncology was the way that I wanted to go.
Concerning lung cancer, I was influenced by my mentor. When I started my training, there weren’t that many options for lung cancer. There was chemotherapy and that was pretty much it. However, during my training, there were a lot of new therapies coming up, like immunotherapy and targeted therapy. The excitement in the field drew me to want to be a part of this growing field concerning options for our patients. The field was getting to a place where we had more options to offer our patients other than chemotherapy itself and that’s where my love and compassion towards lung cancer grew.
It was ingrained in me that we needed to think about the community and the circumstances that people are born in or the conditions they live in for the healthcare system to work.
Growing Up in Mattapan
Nikki: What motivated you to go above and beyond and focus on helping an entire community get better access to health care and treatment options, including clinical trials?
Dr. Charlot: Mattapan is a predominantly Black community and interestingly enough, my street and pretty much my whole block were folks that immigrated to Boston. I have a Haitian background, so my interest in terms of thinking about communities draws from that experience.
I lived in two different worlds. I had the world where I grew up in Mattapan, but I also always went to Catholic school, which was outside of our neighborhood. I saw the dichotomy between the school in terms of the affluence of the area and some of the students who attended that school and my neighborhood where we’re very rich in culture and pride, and hardworking, but we didn’t have the same resources.
When I became a doctor, I did all of my training at a safety net hospital, so we cared primarily for people who were underinsured or had no insurance. It was the hospital where I was born, so it was ingrained in me that we needed to think about the community and the circumstances that people are born in or the conditions they live in for the healthcare system to work.
That’s where my whole approach comes from in terms of thinking about Black communities and the importance of ensuring that they have the knowledge and the awareness of all the resources available to ensure that they have access to care and can improve their outcomes through those connections. As a physician, I think about the Black community and understand ways how we need to make those connections together for us to thrive, do better, and live healthy lives.
I used my background concerning patient and community engagement to improve access to clinical trials, cancer care, and high-quality cancer care.
Developing the CREATE Initiative
Nikki: How did you end up at UNC?
Dr. Charlot: I was recruited to UNC primarily to work as a thoracic oncologist, so my specialty in lung cancer, as well as develop a program that was focused on clinical trials and increasing equity in clinical trials. As a result of my research and clinical background, I ended up starting the CREATE initiative, which is Cancer Research, Equity, and Advocacy Through Engagement. This initiative speaks to the strong community focus and the work that we do with our community partners for the healthcare system to work and for the treatments to get to the people that they were designed to treat. I used my background concerning patient and community engagement to improve access to clinical trials, cancer care, and high-quality cancer care.
Most Common Lung Cancer Symptoms
Nikki: We understand that there’s a wide range of symptoms, but what are the most common symptoms of lung cancer? And what should people never ignore?
Dr. Charlot: Screening in general is meant to detect cancers early, before they cause symptoms. But generally speaking, by the time a patient is diagnosed with cancer, medical oncologists see patients after the cancer has spread or advanced and not in a stage where it could be cured with surgery. However, things have changed with cancer where we’re using chemotherapy and immunotherapy even for earlier cancer stages.
Common symptoms are generally related to shortness of breath, coughing (particularly coughing up blood), and sometimes weight loss. Those are the top three that patients describe in terms of things that they’ve noticed when they’re diagnosed with cancer.
If the cancer has spread, they could present with various symptoms, like a headache if the cancer has spread to the brain or pain in various areas, like in the bones or the joints. There could be a wide range of symptoms depending on where the cancer is.
The most important thing is to be aware that cancer screening is an option, particularly for people who have had a long history of smoking. Twenty pack-years is the recommendation. Screening is for those who don’t have symptoms, but if they do have symptoms, it’s another reason to see their doctors so they can get examined and evaluated for potential cancer.
It’s important to be able to test these drugs on a variety of people and understand how these treatments impact various groups.
Demystifying Clinical Trials
Nikki: We know that trials aren’t for everyone. What would you say specifically to Black and African Americans to convince them to learn about clinical trials?
Dr. Charlot: Clinical trials are an opportunity to get access to new treatments that are not currently available. For the Black community in particular, we know that outcomes are worse when it comes to cancer survival and mortality rates. Clinical trials provide an opportunity to get access to new drugs, which ideally will prolong life.
It’s important for all patients, regardless of background, to have access. We don’t know how these drugs are going to affect people, whether it’s based on their environment, socioeconomic status, or race. It’s important to be able to test these drugs on a variety of people and understand how these treatments impact various groups.
A Patient’s Clinical Trial Success Story
Nikki: Can you think of a specific story that shows how impactful a trial can be for someone?
Dr. Charlot: I started the CREATE initiative at Lineberger and we’re in the process of completing a research grant that I have, which is building a mobile app for Black women with breast cancer to see if it can help increase discussions about clinical trials with their providers. One of our patient research partners shared her story about participating in a trial where the trial led to her being cancer-free for a very long time in that she’s been able to see this drug become a standard of care for breast cancer treatment.
It’s important to acknowledge the historical past and some of the mistreatment that Black communities and individuals often get within the medical care system.
This goes to show that when going into a trial, we don’t know whether or not these drugs are going to work. What we do know is that when you’re in a clinical trial, you’re under such close follow-up, which gives you even an extra layer of eyes of people who are watching how you’re doing. If these drugs prove to be better than the standard of care, these drugs end up helping people live longer.
It’s fascinating and wonderful to be able to work with someone who’s been through this whole process of participating in a clinical trial and seeing that her participation led to the approval of a new drug that is now being used for breast cancer patients. There’s no better story than to live through the process of being in a clinical trial and to see how that participation led to the approval of a drug that more women and other people with breast cancer can benefit from.
Overcoming Barriers in Black Communities
Nikki: What would your message be to the Black and African-American community who are fearful of clinical trials?
Dr. Charlot: We know that our healthcare system and our research enterprise in this country have not been the best, particularly for our Black communities. At the same time, it’s important to acknowledge the historical past and some of the mistreatment that Black communities and individuals often get within the medical care system. Acknowledgment is at the forefront.
It’s also important to know that there are safeguards in place with clinical trials. It’s important for us, specifically as Black individuals, to be a part of clinical trials because it gives us opportunities that we would potentially not have to access newer drugs. Acknowledge the past and understand that we have a part and the right to have access to newer treatments and interventions.
We need to understand where our patients are coming from, know what their needs are, and partner with them.
The Role of Black Physicians in Healthcare
Nikki: What do you think healthcare professionals can do better when building trust with the Black and African American community?
Dr. Charlot: As a Black physician and even for healthcare providers who are not Black, we need to be one with our community. We need to understand where our patients are coming from, know what their needs are, and partner with them. If we do these separately in our silos, it doesn’t help improve access to care. It doesn’t help our communities thrive and live healthy lives. Making connections is what’s helped me in the work that I do and hopefully helping the patients that I’ve had the privilege to take care of over these past couple of decades as a physician.
Special thanks again to AbbVie, Genmab, and Karyopharm for their support of our patient education program. The Patient Story retains full editorial control over all content.
An internal medicine physician discusses healthcare access, preventative care, patient trust, and how both doctors and patients can improve relationships for better outcomes.
