Should Cancer Patients Reconsider CAR T-cell Therapy?
Explore CAR T-cell therapy insights with Dr. Joshua Brody amid FDA investigation.
The headlines about the recent FDA investigation into CAR T-cell therapy have raised questions about the cancer treatment for many patients.
To provide some answers, we sat down with Dr. Joshua Brody, Director of the Lymphoma Immunotherapy Program at The Tisch Cancer Institute at Mount Sinai, at the ASH conference in San Diego 2023.
As background, the FDA is investigating T-cell malignancies associated with BCMA- or CD19-directed autologous CAR T-cell immunotherapies.
Dr. Brody addresses pertinent questions about CAR T-cell therapy. Given the ongoing evaluation of the identified risk of T-cell malignancy and the potential serious outcomes, including hospitalization and death, patients and their caregivers must stay updated.
In this Q&A with Dr. Brody, we aim to empower patients to make informed decisions. Understanding the risks and benefits, the personalized nature of the treatment, and the latest advancements in cancer immunotherapy become paramount.
What prompted the recent FDA investigation into CAR T-Cell therapy?
Dr. Joshua Brody: The FDA starting a new investigation because of some new data. And the data was that there were a total of 20 reported cases of a bad type of lymphoma called T cell lymphoma, that occurred in patients who had previously gotten CAR T-cell therapy.
Why is this investigation considered significant?
Dr. Brody: While 20 cases out of 30,000 might seem small, it’s crucial to investigate further to ensure the accuracy of these numbers and determine if there might be another 20 cases that we haven’t heard about yet.
Can you provide insights from a specific case that is being discussed at ASH?
Dr. Brody: It involved a patient with myeloma, not Dlbcl, who got CAR T-cell therapy. And in that case, it sounded very clear that the T cell lymphoma that they got months to a year after the CAR T-cell was because of the CAR T-cell therapy, not just a coincidence.
What are the known risks associated with CAR T-cell therapy?
Dr. Brody: The risks of CAR T-cell therapy we know about, are still probably of greater consequence for our patients than this super rare, but now new and therefore kind of exciting and interesting thing.
How does the risk of T cell lymphoma compare to other potential side effects?
Dr. Brody: If you have lymphoma, you’re probably going to get some therapy one type or another. And all of these therapies have some risks. So this new thing, the T cell lymphoma that developed in some number of people after the CAR T-cell therapy is still proportionally a very small risk compared to these other things.
Should patients alter their plans for CAR T-cell therapy based on this information?
Dr. Brody: So I don’t think that people should have to change their plans or pump the brakes on that plan, but they surely should have the conversation with their oncologist, their lymphoma doctor, as there are different types of monitoring that we should do afterwards just to keep an eye out for this.
Is there any identified higher-risk group for developing T-cell lymphoma?
Dr. Brody: Not that we know of yet.
Why was the occurrence of T-cell lymphoma not entirely unexpected?
Dr. Brody: This side effect was both surprising and should not actually be super surprising. Because CAR T is a type of gene therapy.
How does the risk of T-cell lymphoma compare to other therapy-induced cancers?
Dr. Brody: So it is kind of related. But just again, a pretty rare thing.
What questions should patients be asking about their treatment options?
Dr. Brody: Patients should be asking, you know, what’s right for me specifically. That answer may have been clear five years ago, CAR T-cell was, you know, the immunotherapy now, maybe bispecific antibodies by themselves or maybe bispecific antibodies in combination with some standard therapies.
Can you elaborate on the process of CAR T-cell therapy and its personalized nature?
Dr. Brody: So you sit there on the Leukapheresis machine for maybe four hours, and we get some T cells from that, some of your immune cells, and they send those T cells to one of the manufacturing labs, and they take those T cells and put this gene inside. And the gene is called a car.
CAR T-cell therapy is both immune therapy and gene therapy. We have patients give some blood. It’s a little more than the normal, you know, blood poke in an arm because we do this thing called pheresis or leukapheresis. You give some blood, we keep one part of it and then give you back all the blood so you’re not too drained afterward.
What is the significance of the personalized aspect of CAR T-cell therapy?
Dr. Brody: CAR T-cell therapy is a personalized product made for each person. And then before we re-infuse those CAR T-cells, people get some chemotherapy right beforehand. And that chemotherapy sometimes call it lymphodepleting chemotherapy.
Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Cancer details: Characteristics of both subtypes 1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
Empowering Your Voice: Signs of Medical Gaslighting as a Cancer Patient
Nadia was repeatedly told, “Nothing was wrong with her.” Amy’s symptoms were consistently attributed to anxiety. Nick was told that he was too physically fit to be sick. Sadly, all three were eventually diagnosed with various types of cancer.
The term “gaslighting” has gained significant popularity in recent years, often used to describe situations where individuals manipulate others into questioning their own reality.
As a cancer patient, you likely trust your doctors and healthcare providers to provide the best care. Unfortunately, some patients experience medical gaslighting, a phenomenon where doctors or healthcare providers downplay a patient’s symptoms or dismiss their concerns.
Medical gaslighting can be devastating for patients and can lead to delayed diagnoses, inadequate treatment, and even death.
For a deeper understanding of the topic and how to manage it, we sat down with Dr. Jennifer Kilkus, a board-certified clinical health psychologist and an Assistant Clinical Professor within the Department of Psychiatry at Yale School of Medicine. Specializing in the mental health of oncology patients, she sheds light on gaslighting in the medical field and its impact on cancer patients.
In conversation, she discusses the origins of the term and how medical gaslighting manifests as a dismissal or minimization of cancer patients’ concerns. We explore medical gaslighting in the patient experience, its underlying biases, and the importance of slowing down, listening, and advocating for oneself in the face of dismissive medical encounters.
Medical gaslighting is based on the concept of gaslighting, which originates from the movie Gaslight, where a husband manipulates his wife’s reality to make her doubt her own judgment.
Dr. Kilkus describes medical gaslighting as, “A minimization or a dismissal of people’s concerns. I think there are a lot of different contributors to it, but that’s kind of the general gist of it, is just a dismissal or minimization of what someone’s saying that they’re having an experience within a medical context.”
“I was so angry and resentful while starting treatment that my oncologist continued to gaslight me and ignore all of my cries for help. I felt like a crazy person. I often wonder, what stage would I have been, and would my journey have been different had the doctor believed me.”
To further clarify that medical gaslighting might not necessarily be attributed to malicious behavior, Dr. Kilkus says, “I wouldn’t put so much intent behind it.” She explains that as humans, we all have biases, misunderstandings, and time constraints that may lead to unintentionally gaslighting someone else.
Despite intentions, there are ways to spot medical gaslighting when you’re experiencing it.
Five Signs You’re Experiencing Medical Gaslighting
By understanding the signs of medical gaslighting, you can assert your needs, seek additional opinions, and ensure that you receive the care and respect you deserve. Here are a few situations that might clue you into medical gaslighting.
Chronic pain dismissal: You’re experiencing pain, but your healthcare provider tells you that it’s “all in your head” or that “you’re exaggerating your symptoms.” Dr. Kilkus emphasizes that “people have wisdom about their bodies,” and patients should be persistent if something doesn’t feel right.
“I got an appointment with my primary care. I said, ‘These symptoms aren’t going away. In fact, everything seems to be getting worse. I’m really concerned.’ He said, ‘You don’t look sick. If you had cancer, Amanda, you would be losing weight at a rapid pace. Your face would be sunken in.’ I just couldn’t believe he said that to me.”
Unexplained symptoms dismissal: You’re experiencing symptoms that your healthcare provider cannot explain, but they insist that there’s nothing wrong with you. Dr. Kilkus encourages patients to educate themselves about their condition and seek a second or third opinion if necessary.
Dismissal based on age: You’re experiencing concerning symptoms or pain but your healthcare provider asserts that you are too young to get cancer. “That is a really common thing that I hear is ‘you’re too young to have cancer’,” says Dr. Kilkus. “You’re too young to have this kind of pain. You’re too young to have these kinds of problems. It must be anxiety or it must be X, Y, or Z thing.” She explains that people experience pain at all ages so this phrase is a really big sign. Again, Dr. Kilkus recommends getting a second opinion.
Immediately blaming symptoms on mental health issues: You’re healthcare provider quickly attributes your symptoms to anxiety or stress. “If somebody is having a symptom that is medically concerning to them, of course, they’re going to be anxious about it,” explains Dr. Kilkus. “And it is true that anxiety can exacerbate symptoms or kind of mask what is really going on. But that doesn’t mean, that it shouldn’t be followed up on, because we also know that there are medical conditions that can cause symptoms that look like mental health concerns.”
“When I went back to that doctor for the follow-up, he said to me, ‘Yeah, there’s nothing wrong with you. You must have just had an infection.’ I tried to tell him, ‘No, wait, there’s more I’m concerned about.’ These rashes and things were starting to cause alarms to go off. Anyway, he cut me off, and he said, ‘I can tell that you’re just one of those anxious patients who needs a little more coddling.'”
According to Dr. Kilkus, “One of the things that is fairly common is that women and people of color are more likely to experience medical gaslighting.” She further explains that this is due to societal narratives and stereotypes surrounding how women and people of color present with pain.
Dr. Kilkus highlights the bias that “women might be more anxious and they’re saying they’re in pain, but actually maybe, maybe it’s anxiety and it’s not actually pain.”
She also addresses the harmful stereotype that “people of color have a higher pain threshold than white people.” A 2016 study found that some medical students still think black patients feel less pain than white patients.
Dr. Kilkus emphasizes the need for awareness and self-compassion, stating that “it’s not conscious, it’s sort of unconscious biases that we all hold” and that experiencing medical gaslighting is not exclusive to certain individuals.
“The other thing I want to make sure that people hear is that this doesn’t just happen to women and people of color. It happens to everyone,” explains Dr. Kilkus, “It’s just more likely to happen to those populations or for people who have certain disabilities, people have certain chronic health issues, people who have difficulties with their weight. These are all sort of more vulnerable to medical gaslighting. But it can happen to anybody. It can happen to the most well-educated white male person that there is. It just can.”
“It was a little intense because I feel like I could feel him saying it’s so unlikely that this is colon cancer, especially colon cancer that’s causing you to bleed. But the alarms in my body and my mind were going off. I remember there was a point where it was like, ‘Either put me on the schedule or just call your security and they can escort me out because I need this colonoscopy.’”’ He was like, ‘Whoa, whoa, whoa, Miss. It’s okay. I will give you the colonoscopy.'”
If you find yourself being gaslit in a medical setting, Dr. Kilkus suggests simple ways to get your doctor to listen.
Ask your doctor for documentation: “It’s perfectly okay for you to say, ‘If you’re not going to follow up on this, then I would like you to document that in my medical record,’” says Dr. Kilkus. She explains that it might clue in the doctor that there may be a negative consequence of them not acting on your symptoms. For follow-up, Dr. Kilkus recommends looking at your medical notes to make sure it’s been added.
Keep a diary: “To keep track of symptoms and that could be duration, intensity, and frequency of symptoms,” says Dr. Kilkus “And that way you have that data to provide the physician. So they also know what has changed since the last time you came to them.”
Find a doctor you trust: I’m a huge fan of people finding other physicians if they don’t feel supported because there’s no point if you don’t have a doctor you can trust,” says Dr. Kilkus. “I really feel like that’s a foundational component of health care. And if you don’t have that, then you need to find a way to at least get as close to that as you can.”
Download 5 Tips For Overcoming Medical Gaslighting
One of the most effective ways for cancer patients to protect themselves from medical gaslighting is through self-advocacy. This means being an active participant in your own healthcare, asking questions, and speaking up if you feel like something isn’t right. Dr. Kilkus also recommends reaching out to your community or support network to find doctors who others have connected with.
“You’re not just a number. These doctors have a lot of patients, but you’re a human. You go in there and let them know you’re not a number. You have concerns about your health, and your doctors should be concerned about you..’
A crucial component of self-advocacy is education according to Dr. Kilkus. “The more information that you have, the more seriously you’re taken to in a health care setting,” says Dr. Kilkus. To better understand your rights as a patient, you can explore the Patient Bill of Rights. These also vary from state to state.
In addition to education, taking a compassionate approach can be helpful in your patient journey. “We all share challenges and experiences that we often feel like we’re walking with alone,” says Dr. Kilkus. “And I really feel like the more that these things are voiced, the easier it is for everyone to just slow down and be kind to one another because we’re all suffering. That’s part of being human.”
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