Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Lauren was diagnosed with invasive ductal carcinoma breast cancer after discovering a lump in her right breast during a self-exam. Her doctor quickly referred her to radiology where she underwent an ultrasound and biopsy. Initially, a sentinel lymph node biopsy came back negative, suggesting that the cancer hadn’t spread.
This led to a decision to proceed with a lumpectomy, during which doctors also removed several lymph nodes for testing. Unfortunately, one of the lymph nodes tested positive for cancer, leading to a second surgery to remove more tissue. Lauren’s treatment plan included multiple rounds of chemotherapy and 25 rounds of radiation. Going through treatment opened up unexpected opportunities for introspection and gave her the space to evaluate various aspects of her life.
Throughout her ordeal, Lauren struggled to accept her diagnosis, but she maintained a positive outlook and sought to embrace the situation as part of life’s many experiences, emphasizing personal growth during tough times. The hardest part for her was breaking the news to her two children. They supported her through every step and the experience brought them closer together. She also embraced therapy, which helped her reflect on her life priorities.
Her diagnosis forced her to slow down and reexamine her values, leading to a shift toward a more balanced lifestyle. As she moves into survivorship, Lauren aims to maintain this balance, learning the importance of saying no, managing her time, and avoiding unnecessary stress. She continues to advocate for women with breast cancer, using her platform to raise awareness and inspire others. She sees cancer not as an end but as an opportunity for a new beginning.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Dee was diagnosed with stage 3 invasive ductal carcinoma (IDC) and ductal carcinoma in situ (DCIS) at 31, which later progressed to stage 4 metastatic breast cancer. Her initial symptoms began in 2017 when she experienced pain in her left breast while breastfeeding, followed by the discovery of a large lump. Despite persistent pain, she was initially dismissed by doctors due to her age and the assumption that breast pain was not a sign of cancer. After advocating for herself and undergoing an ultrasound through a private hospital, she was finally diagnosed.
Dee underwent a challenging treatment plan, starting with neoadjuvant chemotherapy (AC-T), a bilateral mastectomy, and radiotherapy. She experienced severe side effects, such as radiation burns and a painful capsular contracture around the implant. During her treatment, Dee struggled with identity loss and was later diagnosed with PTSD. She tried to return to normalcy too quickly, which led to further health complications, including pneumonia and hospitalization.
Despite setbacks, Dee rebuilt her life, focusing on her mental health and making significant lifestyle changes. In 2023, Dee learned her cancer had metastasized to her bones. However, she maintained a positive mindset and adapted well to new treatments, including targeted therapy with ribociclib. Dee continues to embrace life fully, cherishing time with her children and finding support through an online cancer community.
Name: Dee D.
Diagnosis:
Breast Cancer
Invasive ductal carcinoma (IDC)
Ductal carcinoma in situ (DCIS)
ER+
Staging:
Stage 4
Symptoms:
Inability to produce milk on the left breast while breastfeeding
Breast pain (palpable and radiating to the back)
Lumps in the breast and armpit
Treatments:
Chemotherapy: AC-T
Surgery: bilateral mastectomy and axillary lymph node clearance
Radiotherapy
Hormone therapy: Zoladex (goserelin)
Aromatase inhibitor: letrozole
Targeted therapy: Kisqali (ribociclib)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Michelle’s experience with recurrent stage 1 bladder cancer started with intermittent blood in her urine, which led to multiple urgent care visits, where she was initially misdiagnosed, and eventually a diagnosis of papillary urothelial carcinoma. Upon diagnosis, she underwent TURBT surgery to remove the tumor and then chemotherapy.
Despite multiple rounds of chemotherapy, Michelle’s cancer recurs within three to six months after stopping treatment. Her doctor suggests ongoing monthly maintenance chemotherapy, but she negotiates for less frequent sessions due to the harsh side effects. She became vigilant about recognizing symptoms of recurrence, helping her manage the chronic nature of her cancer.
Facing the possibility of losing her bladder, she expresses a preference for an Indiana pouch, influenced by her friend’s experience and her desire for a better quality of life. She has already undergone surgery to improve her chances of adapting to the Indiana pouch, demonstrating her proactive approach to managing her health.
Michelle emphasizes the importance of self-advocacy in medical care, seeking multiple opinions, and making informed decisions. She acknowledges the emotional toll of living with cancer and stresses the importance of mental health care and self-care.
Name: Michelle R.
Age at Diagnosis:
43
Diagnosis:
Bladder Cancer
Staging:
Stage 1
Symptoms:
Irregular occurrences of seeing streaks of blood in urine
Specific type of pain when bladder is full
Unexplained weight loss
Urinary urgency
Malaise
Fatigue
Treatments:
Chemotherapy: gemcitabine
Surgery: transurethral resection of bladder tumor (TURBT)
Thank you to Johnson & Johnson for its 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 for treatment decisions.
I had been experiencing some streaks of blood in my urine… It was very random and not consistent at all.
Introduction
I live near Atlanta, Georgia. I’m a mother to an adult son and an auntie to my nieces and nephews. I have two brothers and a sister. I’m a genetic genealogist. If I’m not working my full-time job, I’m working my side business, Bless Your Vibes LLC.
I have recurrent stage 1 non-muscle-invasive bladder cancer (NMIBC). I’ve had nine recurrences, countless surgeries, and chemotherapy. As long as I catch it before it invades the muscle, I’ve been told I can deal with this for the rest of my life.
Pre-diagnosis
Initial Symptoms
I had been experiencing some streaks of blood in my urine. It would happen for a day or two and then nothing for a month, and then it would happen again. It was very random and not consistent at all. I already had a hysterectomy several years prior, so I knew it wasn’t related to that. I didn’t have any pain nor symptoms of a urinary tract infection, so I immediately thought about kidney stones.
Going to Urgent Care
When I went to urgent care, they did a culture and said, “You don’t have any infection, so it’s probably kidney stones. We’re going to give you antibiotics and send you on your way.” I went to urgent care a total of four times from June 2017 to February 2018.
She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding.’
The last time, I did a televisit. I knew they were going to give me antibiotics because it was the same old story, so I planned to call them during my lunch break. The doctor I spoke with during my televisit was more thorough than any other doctor I’ve ever had in my life.
She asked me questions and didn’t allude to any infection or kidney stones. She said, “I want you to demand to see a urologist. You’ve been experiencing this for quite some time. Tell them painless bleeding. Don’t say ‘blood without pain.’” She stressed that to me for whatever reason.
Seeing a Urologist
The urologist still didn’t indicate anything. They said, “We’ll try to figure out what’s going on.” I had a CT scan and some urine tests, but that was about it.
Diagnosis
Getting the Diagnosis
The urine test results came back through my patient portal and said I was positive for papillary urothelial carcinoma. I knew what carcinoma was, but I didn’t know what papillary urothelial meant. I panicked. It was Friday afternoon and everybody’s gone. The only person I told was my boss at work because I had to leave early.
First thing on Monday morning, I called the office and left a message. They called back and said, “We can’t tell you anything. You need to come in to see the doctor.” I couldn’t go in until later that week, so I had to sit with it for a whole week.
When I went in, the doctor was so matter-of-fact and cold. He started talking about treatment. I said, “Stop. Do I have cancer?” He looked at me like I should already know. I was numb. He said, “Based on the CT scan, it looks like there’s a large mass. Normally, we would go in with a scope and then proceed with surgery. But since we know that it’s cancer, can we bypass the scope and go into surgery?” I said yes because I wanted this out of me, so he scheduled it for two weeks after.
I had one friend… She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me.
Treatment
Discussing the Treatment Plan
With bladder cancer, you have high-grade or low-grade, muscle-invasive or non-muscle-invasive. My doctor pulled out a treatment chart and it showed everything. It was pretty clear-cut. It showed the schedule of treatment, which starts from removal or transurethral removal of bladder tumor (TURBT), and then it goes through the surgeries and the types of chemotherapy.
Preparing for Surgery
I remember trying to prepare myself. I was freaking out because up until the night before, I had no ride to my surgery. My son didn’t have his license yet and all of my friends worked. I didn’t have any family to help. I literally had no one. I started calling people that I casually knew and nobody stepped up.
Then I had one friend who I called and I was telling her about it when she said, “Why didn’t you ask me?” I didn’t even think about it because she’s disabled and she turned out to be the one who would step up. She wasn’t that close of a friend but for her to drop what she’s doing to help me, stay with me, and bring me home meant the world to me. It humbled me. I didn’t even know then all the friendships that I was about to lose over this, but from back home, she’s the only friend I have left. I’ve lost all of them.
I went into surgery and at the time, I felt like I had a lot of people depending on me, so I told the doctor, “I’m not just another patient. Treat me well. Do me right because I have a lot of people who depend on me.” I felt he was offended by that because he said, “I treat all my patients the same.” He was very dry.
I asked, “What’s the best-case and worst-case scenario?” He said, “Best-case scenario is I get it all, you go home today, and you rest. Worst-case scenario is you wake up and have a bladder bag.” He told me this right before going in and I was in complete shock. I couldn’t do anything else but pray.
I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me.
Surgery
After surgery, my friend was the first person to greet me coming out. She was in the recovery room and as I was waking up, I felt that he got it all and I was going home. I believed it in my head. After I got more coherent, I asked the nurse, “Did he get it all?” And she said yes.
I went home to recover, took the next day off, and went back to work the following day. It was like I had cancer and then I didn’t have cancer in that short time. I didn’t know at the time that it was going to happen nine more times over 6 ½ years.
One of the first things this doctor told me was, “I have patients who have been coming to me for 20 years. I go in and get it out, and they go about their way for 20 years.” At first, I was upset that he said that, but later, I was glad because that prepared me. He indicated that it was going to be normal to keep coming back.
Not every case is chronic, but I like to know things because I like to be prepared. It helped me put it into my head that I’m going to have to deal with this. On one hand, it helps me. But on the other hand, I don’t feel like I’ll ever have that winning moment. It’s going to be a lifetime thing to deal with.
Recurrence
I had a follow-up after surgery and there was another growth. It was the first time I got to see it inside of me. It looked like a succulent flower because it was so tiny and had little shoots. I’m lying there looking at the screen, thinking, “How could something so beautiful be so deadly?” Then he said, “We can take care of this right now.”
I asked him, “What does this entail?” He said, “We pluck it off.” Then through the screen, I saw this little grabber thing come through and he plucks it. It was very surreal. You go from cancer to no cancer because once that’s gone, you have no evidence of disease.
If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.
Moving to Atlanta
I was moving from Ohio to Atlanta, so I asked him what I needed to do. He said, “Come see me one more time before you go.” I did that and I was clear, so I was okay.
I started searching for the top urologists, top oncologists, and the hospital networks in the area. I did a lot of research and called some of the hospitals, which included Emory because they were in my insurance network. I asked, “If you had a serious problem with your bladder and you needed a urologist, who would you go to?” They told me about this doctor and as soon as I connected with the office, it was so different.
This doctor is a urologic oncologist and supposedly the best in the network. I explained my situation and gave my brother’s address since I didn’t have my new address yet. They emailed me papers and everything. There was such an urgency to be seen and that made me feel very comfortable and that I would be taken care of.
When I went, they said, “We’re not even going to have a consultation. We’re going right into cystoscopy. I want to see what’s going on there.” I’m glad they did because that was my fourth growth and it had taken off. It was very large and from the pathology report, it was high-grade.
After that scope, they said, “We’re going to do the surgery and we’re going to do your chemo,” so I did that.
During my follow-up, I didn’t see the doctor, but I saw someone else from his team. I had been taking cues from my first doctor that it wasn’t a big deal. She was the first one who looked me in the face and said, “Do not put this off because you can die from this,” and that was the first time anybody said that I could actually die from this.
Up until then, it was very casual. From that point on, I took everything very seriously. If I have to do a cystoscopy or a procedure, that takes priority because in order to keep my bladder, I have to stay on top of everything and not wait.
There are specific symptoms that I now recognize when I have active cancer.
Being Aware of Symptoms of Recurrence
I’ve had this nine times now, so I’ve paid attention to my body and my symptoms, and I started recognizing patterns. When I have active growth, there is a very specific pain that I feel in the morning when my bladder is full. Once I empty it, the pain goes away. When I feel that, I know I have a growth.
I’m a plus-sized person. I’m fairly large. But before I was diagnosed, I lost a lot of weight. I lost 60 lbs and that was one of my other symptoms before I was actually diagnosed. I had unexplained weight loss and I had been trying to lose weight my whole life.
Then I have a lot of sense of urgency to go to the bathroom, like when you have a UTI. I can’t wait for too long because the fuller my bladder, the more it hurts. Then I have a general feeling of unwell and being tired a lot. There are specific symptoms that I now recognize when I have active cancer.
One time, I was having bad pain in the morning. I had a cystoscopy not even a month prior and he said, “It’s probably because you’re still healing.” I said, “No, something’s going on.” He got me in and sure enough, it was another growth. This doctor trusts that I know my body and he’s fully on my team.
Maintenance Chemotherapy
For the last recurrence, we know that chemo worked. I got chemo for a whole year and didn’t have any growth, but when I stopped, I had another growth within three to six months, so I had to have another surgery and chemo.
I told him that it seems my growths occur between the three- and six-month mark, so he wants to introduce another chemo to mix with the original one I was taking and do monthly maintenance chemo probably for the rest of my life. I’m not down for that, so I said, “That’s hard on me. What if we go every two or three months?” That’s not even what the board recommends, but he’s willing to consider it.
He said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.
Side Effects of Chemotherapy
The chemotherapy drugs are all different. I get nauseous, but I don’t get sick. I have a little thinning of my hair, but I don’t go bald. I feel overall icky and tired. I go through hot and cold flashes, low-grade fevers, and night sweats. Those last probably about five days before I start to feel a little bit better. But when I went for the whole year, the longer I was doing it, the worse I felt every month.
It started like I was having aphasia or problems with recalling certain words. My memory wasn’t as good. I was having trouble concentrating and trying to process things. It was more complicated. I still have that problem where I trip on my words sometimes. It got progressively worse the longer I was doing chemo.
Taking a Chemo Break
I was supposed to do it until the end of the year, but I asked him, “Can I take a break for a month?” Since I had the six-week course before the monthly sessions, he said I could stop and we’ll see how I do. In six months, it came back, so I’m going to be on chemo for the rest of my life.
It’s going to be a cat and mouse game, and the end result is a ticking time bomb. I’m going to do whatever I can to avoid losing my bladder and as long as I can tolerate the chemo. If it gets to the point where I can no longer take it, then I’ll probably have my bladder removed. There aren’t very many options for that.
Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that.
Facing the Possibility of Losing Her Bladder
There’s only one option that I would like. My best friend had urethral cancer, a rare form of it, and she got an Indiana pouch and that to me is the most tolerable. I don’t want to live with a bladder bag. It’s a decision I made before I met her. The only options I knew of were a neobladder or ileostomy bag, and I didn’t like either of those options because if the neobladder doesn’t work, then all you have is the bag.
I’m older and my child is grown and independent. I’ve suffered a variety of things throughout my life. I’m a chronic pain patient and with where I’m at in my life, I didn’t want to suffer, so I made the decision. Even if it meant I was going to lose the battle to not lose my bladder and choose quality of life over quantity of life, I made peace with that, and that was hard for other people.
I didn’t really talk about it, but I mentioned to people close to me, “Spend time with me now.” I didn’t come right out and say it, but I would drop hints. Then I met my friend and she showed me that and for the first time, I actually had hope that I could live with this little pouch and do the catheter. I could deal with that. Now that’s where I’m at. If I have to lose my bladder, I want the Indiana pouch.
When I was first diagnosed, I was fortunate to get involved with a cancer support center in my old town. I started going to support groups and would see there was only one other person with bladder cancer and he had a bag. He was pretty matter of fact about it and he was happy. He didn’t go through what I did, but his was found at a later stage.
You could tell which ones had a good support system and which ones didn’t. The ones who had a good support system wanted to fight and they fought until the very end.
At the time, I thought I had a good support system, so I was ready to fight. There was a woman who came in who had been diagnosed with stage 4 and it looked like there was no hope for her, but she had such a good support system. Her decision was to not do any treatment. She was going to live the rest of her days.
I remember that meeting because that’s where we got into quality versus quantity. She said, “Why would I prolong my life with the extra time I have being miserable, rather than have a shorter life and be absolutely happy and at peace with it?” That hit me so deeply because I wasn’t even nowhere near where she was as far as stage, but it put in my head that if I ever get to that point, that’s what I would do. It allowed me to process those choices and come to terms with it.
I knew people wouldn’t understand that. Even to this day, when I talk about it, people would say, “Why would you even think like that?” And these are people with cancer. You’re not me. You’re not going through what I do.
Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.
Shared Treatment Decision-Making
My doctor is still pretty dry, but I’ve grown to appreciate him. I had a different surgery a few years ago and prior to that surgery, I let him know right away, “I’ll do whatever I need to do to keep my bladder, but if it comes down to losing my bladder, I will pass. I want you to know that’s where I’m at.” He respected that and said, “I’ll do whatever you want.” I appreciated that for a variety of reasons. He must have written it in my file, so he knows that when I come in, we have the surgery and then chemo. It’s become routine now.
When I had the high-grade recurrence, it got to the point where we weren’t sure and I was scared. I had met my friend by then and brought it up to him. I said, “Can I do the Indiana pouch if I have to lose my bladder?” He said, “Let me see your abdomen.” At the time, I had a B belly, so my waist dipped in and right where the crease was is where the stoma would be. I asked, “How would that work?” He said, “It probably wouldn’t.”
I had this discussion with him. My concern was if I had a bladder bag, every time I moved, bent over, or sat, it would fold over on itself, so it would pinch off the flow. The stickers for the bag wouldn’t stick. I would then have a higher risk for infection and leaks. It solidified why I wasn’t going to live with a bladder bag.
I thought about it and said, “What if I got a tummy tuck to smooth that out?” I’m a bariatric patient too and I had lost some weight. He felt around and said, “If you could get this smoother, I think you would have a better chance,” so I started on that journey to get that done.
I had a panniculectomy, so now I have a big round D belly and I’m comfortable with the fact that if I had an ileostomy bag, I wouldn’t crease anywhere. But then I met my friend and that made me feel even better. Now that I’ve had the surgery, I could live with that. It was important that I had that discussion with my doctor because if he blew me off, then I wouldn’t have made that decision.
At my last visit, I brought up that I’m coming up to seven years. He said, “If you want to remove your bladder, we can do that, but I don’t think you’re there yet. This is all superficial, but I understand that if the chemo’s getting to be too much and doing all this is too much, we can do that. But I remember what your decision was initially.” Whatever I decide, he’s comfortable with it.
Where we left off was, I have to let him know whether we’re going to introduce this other chemo and try a few rounds every three months to see if that keeps it away. I can live with that and that’ll buy me a little bit more time. Everybody’s days are limited, whether you have cancer or not. We only have one life, so you have to do what you can in between the dashes.
Importance of Self-Advocacy
Self-advocacy is absolutely critical. I talk about it on my social media and I have a lot of women sending me messages, not very many men, but I tell them that this doesn’t have to be a death sentence. It’s a health challenge, especially if you have the type that I have.
You have to advocate for yourself and understand what’s going on with you. Ask your doctor. Don’t feel like you’re putting him off. If he or she’s brushing you off, find another doctor. Get those answers and make those decisions.
Don’t let any doctor gaslight you. I’m a big proponent of that. I don’t think I would’ve been like this if it wasn’t for all the other experiences I’ve gone through in my life. It brought me to this point where I can advocate for myself and others.
A lot of people I talk to don’t know how to advocate for themselves. I’ve seen five oncologists, two different ones in the same week. There’s nothing out there that says you can’t go to another doctor. You have to fight for yourself and speak up for yourself.
Handling the Emotional Toll
I haven’t carried myself with grace. I’ve spent a lot of time crying and being angry at everything. Oddly, one thing I never felt was, “Why me? Why did this happen to me?” I don’t know why. I can’t tell you why, but I’ve not handled it very well.
There have been a lot of times that I get depressed. I shut down. I get gripe-y with people. I withdraw. I’ve always been a quiet person. Everybody says you have to remain positive and be positive. In a lot of aspects, that’s true, but you also have to be a realist and allow yourself to feel these feelings to get through them.
My counselor said, ‘Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis.’
Some things that I do that help me is seek mental health care. When I was first diagnosed, I was seeing a counselor and was on anxiety medication. When I moved, I didn’t need those anymore because back then, I had other situations I was dealing with that I wasn’t in anymore.
I practice a lot of self-care. I used to feel guilty about spending money on myself, especially as a parent, but I don’t anymore because it’s vital to my survival and helps me cope after years of dealing with my cancer.
You go through a grieving process too, much like a death. My counselor said, “Before cancer or any major health issue, you experience a grieving process over the life that you had before the diagnosis. You’ll never go back to life before that diagnosis, especially with cancer. You start grieving the loss of that life, so you need to go through all those steps and emotions to get through it.” For a lot of people, that’s hard.
The biggest stigma in the cancer community is to fight it and beat it. Either beat it or you lose. Normally, those are your only options. But when you have cancer that keeps on coming back, you don’t have that. You’re either sick or not sick. You never win. You never go the rest of your life not having to worry about it again. It becomes a part of you and you learn to deal with it. It’s like getting diagnosed with any other type of major illness. There’s before the diagnosis and after the diagnosis. You have to figure out how to live with it. Find a good support system and resources to help you.
Publishing a Cancer Care Book
When I was first diagnosed, there were different things that I had to keep track of. I had a little notebook where I was writing everything down on because I couldn’t keep track of everything, especially once I moved. I had to get new doctors, new patient portals, and new insurance. There was too much for me to keep track of. I found a group and talked to other people about it.
I’m a graphic designer by profession, so I thought about making a book for other people and created a guided journal called Cancer Care Book, which is available on Amazon (no commission is being earned with this link). It’s geared toward women, but men could use it too. It’s for anybody who has cancer but specifically for newly diagnosed people.
There are different sections in it where you can keep track of all your appointments and bills, write things out like a journal, or if you’re an artist, you can draw or doodle. There are coloring pages because I’m a big believer in art therapy.
There’s a section called The Tough Stuff where you can organize your bucket list items and final wishes. They may deny it, but everybody will think about what happens if they die and this is the perfect way. Nobody has to see this if you don’t want to.
If you get so sick and have a caretaker, you can keep track of all the information, like medication, and hand it off to a caretaker. There’s an emergency contact list on the first page, so if something happens to you, people will know who to reach out to. I put everything that I thought I would want when I was first diagnosed.
You can’t take care of anybody else if you don’t take care of yourself first.
Words of Advice
I made a video that showed six things that are key to your survival and the biggest one is early detection. Don’t wait. If you have any kind of symptom or you feel like something is wrong with your body, get it checked out. Don’t put it off. Early detection is key.
Advocate for yourself no matter what. Get those answers and get education.
Find your tribe. Find your support. They’re out there. On my website, I have a Resources page with over 500 websites for all cancers.
Take care of yourself because much like when you’re flying on a plane and they tell you to put the oxygen mask on first, you can’t take care of anybody else if you don’t take care of yourself first.
Anyone who has had a cancer diagnosis needs to get some kind of mental health care to process everything. You can find a lot of help in support groups and support centers, but they’re limited and can only help you so much. If you’ve never seen a counselor or a therapist before, once you get a diagnosis, they should be next on your list of doctors to see.
You have to come to terms with your mortality. A lot of people think they’re going to live forever. You have to shift your thinking. Cancer could take you out, a car accident could take you out, or a fire could take you out. Anything could happen. You need to reevaluate your life and make better choices of what’s important to you and your closest loved ones.
Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.
Symptoms: Irregular occurrences of seeing streaks of blood in urine, specific type of pain when bladder is full, unexplained weight loss, urinary urgency, malaise, fatigue Treatments: Chemotherapy, surgery (TURBT: transurethral resection of bladder tumor)
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Eva, a 26-year survivor of stage 4 oral cancer, shares her story of diagnosis, treatment, and recovery. She developed a sore on her tongue, which was initially dismissed by dental professionals. For over two years, Eva’s symptoms were misdiagnosed, with treatments ranging from gels to night guards. The pain worsened, affecting her speech and eating, leading her to seek a second opinion from a renowned surgeon in New York. This resulted in a diagnosis of stage 4 squamous cell carcinoma on the lateral border of her tongue.
The subsequent treatment was radical and life-altering. Eva underwent surgery to remove a third of her tongue and 40 lymph nodes, three of which were cancerous. To reconstruct her tongue, tissue was taken from her leg and wrist. She then endured a maximum dose of targeted radiation therapy, which was excruciating, causing severe burns and blisters in her mouth and throat, making it difficult to eat, speak, or sleep.
Eva recounts a pivotal moment during her treatment when she considered giving up due to the unbearable pain. However, her radiation oncologist’s encouragement inspired her to continue. This experience drove Eva to become an advocate for oral cancer awareness. She emphasizes the importance of thorough oral cancer screenings during dental checkups, advocating for both intraoral and extraoral exams to detect the disease early.
Throughout her ordeal, Eva also reflects on the impact of her illness on her family, particularly her young children, who experienced trauma during her treatment. Despite the challenges, Eva believes her experience has given her a unique opportunity to educate others and potentially save lives. She underscores the importance of living a life of breadth rather than length, using her voice to spread awareness and ensure that others do not suffer as she did.
Name: Eva G.
Diagnosis:
Oral Cancer (Squamous Cell Carcinoma of the Lateral Border of the Tongue)
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 ...
Kate began experiencing symptoms, such as random spotting during or after sex and abdominal pain, years before seeking medical attention. Initially misattributed to gallbladder issues, her condition worsened, leading to an emergency room visit where a CT scan revealed a shadow. Subsequent tests and an ultrasound uncovered two large masses, which would later be classified as squamous cell carcinoma of unknown origin.
Kate’s journey to a definitive diagnosis was complex. Initially suspected to be cervical cancer due to testing positive for HPV, her diagnosis changed after multiple biopsies. These tests showed her cervix and uterus were benign, but the masses remained malignant.
Her treatment plan was equally challenging. She began with chemotherapy but suffered severe reactions, including a massive rash that required hospitalization. Despite these setbacks, the tumors responded well to treatment, shrinking by 75% after several rounds of chemo. Kate’s oncologist decided to proceed with surgery, successfully removing the tumors and performing a full hysterectomy. Post-surgery, pathology reports showed all removed tissues were benign, and the tumors were necrotic, indicating she was cancer-free.
Kate reflected on the mental toll of her diagnosis and treatment, emphasizing the importance of allowing oneself to feel all emotions and seeking support. She stressed the importance of listening to one’s body and seeking medical attention for abnormal symptoms. Despite the daunting challenges, Kate remained determined to continue living a fulfilling life with her husband and daughters.
Name: Kate R.
Diagnosis:
Squamous Cell Carcinoma of Unknown Primary Origin
Staging:
Stage 3C
Symptoms:
Intermittent spotting during or after sex
Unpredictable menstrual cycle
Abdominal pain, particularly under the rib cage
Treatments:
Chemotherapy: cisplatin and paclitaxel
Immunotherapy: Keytruda
Surgery: total abdominal hysterectomy with bilateral salpingo-oophorectomy, omentectomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
Spencer’s Stage 3 High-Risk Multiple Myeloma Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Spencer, diagnosed with stage 3 multiple myeloma in June 2023 at the age of 39, reflects on his experience from the onset of symptoms to treatment. Initially, Spencer experienced discomfort in his rib cage and chest area, which persisted despite normal X-rays. He later developed pneumonia and, during his ER visit, was informed of his anemia. Follow-up blood work confirmed low white and red blood cell counts, prompting a referral to a hematologist. Initially, the hematologist was unconcerned, but after further testing, Spencer was diagnosed with stage 3 multiple myeloma, a term unfamiliar to him at the time.
Following the diagnosis, Spencer began aggressive treatment, including chemotherapy and immunotherapy to prepare for a stem cell transplant. His first chemotherapy cycle was particularly challenging and he suffered significant side effects, including strep throat and severe discomfort from the medications. The side effects lessened in subsequent cycles and after completing chemotherapy, a biopsy and PET scan revealed no signs of myeloma in his bone marrow, allowing him to proceed to the next stage: an autologous stem cell transplant.
The stem cell transplant process was intensive. Spencer first underwent stem cell collection, which was interrupted by a COVID-19 diagnosis. Despite this setback, the procedure was eventually completed successfully and the transplant itself involved high-dose chemotherapy before reinfusing his harvested stem cells. Spencer faced challenges post-transplant, including extreme fatigue and lack of appetite, but was fortunate to avoid the more severe side effects often associated with the procedure.
Following his transplant, Spencer entered a maintenance phase. He focused on improving his physical health through walking and running, even signing up for a marathon. His treatment and recovery allowed him to reconnect with family and friends and adapt to his “new normal” life. He emphasizes the importance of finding hope in difficult situations and now actively participates in a myeloma support group, where he encourages others, especially younger patients like himself.
Spencer is determined to maintain his health and well-being, recognizing the long-term nature of managing multiple myeloma. His experience highlights the significance of choosing the right medical team, staying active, and embracing support networks to navigate the challenges of living with cancer.
CLL 360°: Navigating Side Effects with the Experts
Edited by: Katrina Villareal
The Patient Story Webinar – CLL 360°: Navigating Side Effects with the Experts
Hosted by The Patient Story
You don’t have to endure uncomfortable side effects just because it’s part of cancer treatment. Empower yourself with the latest information to make informed decisions about your health, get effective care, and get the most out of life. Listen in on a crucial discussion on Chronic Lymphocytic Leukemia (CLL) with Dr. Matthew Davids from Dana-Farber Cancer Institute and Dr. Kerry Rogers from Ohio State University Comprehensive Cancer Center. This webinar will equip you with the knowledge to better manage CLL side effects and improve communication with your healthcare team.
Hosted by CLL patient advocate Jeff Folloder, this crucial discussion on chronic lymphocytic leukemia (CLL) with Dr. Matthew Davids from the Dana-Farber Cancer Institute and Dr. Kerry Rogers from The Ohio State University Comprehensive Cancer Center will equip you with the knowledge to manage CLL side effects better and improve communication with your healthcare team.
Understand the latest advancements in CLL therapy and their impact on patients. Gain practical advice on managing the side effects of CLL treatments, including BTK inhibitors. Learn how to balance treatment efficacy with tolerability to improve your daily life. Discover ways to communicate your concerns and treatment preferences with your healthcare providers.
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 Pharmacyclics, an AbbVie Company and to Johnson & Johnson, for their support of our patient education program. The Patient Story retains full editorial control over all content
Stephanie Chuang: As part of our CLL 360° series, this topic is navigating side effects with the experts, both on the patient side as well as the medical side. The goal is for you to walk away with a better understanding of what side effects are commonly driven by CLL treatments and how to help manage them, including how to have conversations with your medical team about them.
This program is hosted by The Patient Story. Our multi-platform organization aims to help people navigate life before and after diagnosis through in-depth patient stories and educational discussions, which we understand is especially important for a community like CLL where you’re all so engaged and want to empower yourselves continuously.
We want to thank The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists who provide one-on-one support in different areas for blood cancer. We also want to thank The CLL Support Group on Facebook led by our friends, including our moderator Jeff Folloder. They provide virtual support anytime for folks dealing with a CLL diagnosis.
We want to thank our sponsor Pharmacyclics, an AbbVie company, for their support, which helps us to host more of these programs for free to our audience. The Patient Story retains full editorial control over all the content. While we hope this will be very helpful and that you walk away with a better understanding of this topic, this is not meant to be a substitute for your own medical advice.
Now we get to the great discussion ahead and I’ll send it to Jeff.
Jeff Folloder, CLL Patient Advocate
Jeff Folloder: I am a passionate patient care advocate. Why am I an advocate? Because I know that it is truly possible to live a great life with a CLL diagnosis.
I went through a clinical trial many years ago. I experienced side effects, which were quite profound. I know so much has changed. There are still side effects, but we take care of them differently.
We have two fantastic medical experts to join us. Dr. Matthew Davids is an associate professor of medicine at the Division of Lymphoma of the Harvard Medical School. He’s a hematologist-oncologist at the Dana-Farber Cancer Institute where he serves as director of clinical research and associate director of the Center for Chronic Lymphocytic Leukemia. Dr. Davids, why CLL?
Dr. Matthew Davids, Hematologist-Oncologist
Dr. Matthew Davids: I was very fortunate to grow up in the era when we were starting to transition away from chemotherapy to targeted therapies. We could begin to develop drugs with fewer side effects and more effective than chemotherapy. I was inspired by that and the relationships with my patients, and I haven’t looked back.
Dr. Kerry Rogers, Hematologist-Oncologist
Jeff: Also joining us is Dr. Kerry Rogers. She’s the assistant professor in the Division of Hematology at The Ohio State College of Medicine and a hematologist-oncologist and researcher at The Ohio State University. Dr. Rogers, why did you choose CLL?
Dr. Kerry Rogers: When I was doing my fellowship in hematology and medical oncology, I had the privilege of taking care of patients in some of the original ibrutinib clinical trials who had been living with CLL for over a decade or two and had experienced a lot of chemoimmunotherapy treatment. They said ibrutinib was the best that they’d ever had in terms of how it impacted their daily lives and so I thought that was intriguing. Now we know that these drugs are not only generally more tolerable but also more effective than chemoimmunotherapy.
I like the long-term relationships you can have with patients and the variety of experiences with CLL. You have people who are quite ill, who have experienced a lot of treatment, may have had CLL that’s become resistant to some of those treatments, and need to do a lot of things to manage the CLL. You also see people who are living with it who currently do not have symptoms or do not need treatment.
I also like the fact that there are some people you encourage to do what they want with their lives and not focus on having cancer. Mostly, I’d like all my patients to be bothered by CLL as little as possible, but you do get people in a variety of situations and I appreciate that about working in CLL.
Everyone reacts completely differently to the treatments. For most patients, treatment side effects are common and can be impactful. Some of them are temporary, but some of them are more severe.
Impact of Recent Treatment Advancements on Side Effects
Jeff: I participated in a clinical trial where I received intravenous monoclonal antibodies. Like everyone who participates in a clinical trial, I received a stack of informed consent papers that looked to be about a foot and a half thick and described every single side effect that might happen with the administration of that drug.
The first time that I went to get the infusion, I was told to expect that it was going to take four to six hours. Unfortunately, it took 23 1/2 hours for me because I experienced pretty much every single one of its side effects. We got through them all. When the side effects happened, they were treated and we’d hit the reset button and start over again. As I progressed through the clinical trial, the side effects were minimized.
We’re in a different world now. Everyone reacts completely differently to the treatments. For most patients, treatment side effects are common and can be impactful. Some of them are temporary, but some of them are more severe. Sometimes treatment or even hospitalization is required. And then some people, for whatever reason, never have a single side effect.
Dr. Davids, the treatment landscape for CLL patients has truly evolved in the past couple of years. Could you discuss these advancements and how the side effects of CLL therapy, more specifically the BTK inhibitors, have changed over time?
Dr. Davids: To contrast with the older chemotherapy-based approaches, I told patients, “We’re going to start treatment. You’re going to need to take probably 6 to 12 months off from work and go on disability. Your whole life is going to change over this timeframe, but eventually, you’ll get better and get back to what you’re doing.”
When BTK inhibitors like ibrutinib first entered into trials, we quickly realized that these drugs are much better tolerated than the older chemotherapy-based regimens. There may be some side effects that arise, but we’ll deal with them. We’ll use various supportive care measures. We may need to reduce the dose, but you should be able to keep doing the things you want to be doing. You can usually keep working while on treatment.
We have venetoclax, which we usually give in a time-limited fashion for one or two years, and it has a different side effect profile than the BTK inhibitors. The nice thing about that is with a time-limited treatment, when we stop the treatment, usually the side effects go away or are minimized at least. There are lots of different options.
Jeff: When we first started treating CLL, the treatments were pretty drastic and the side effects were pretty intense for the majority of people. Now, with the new treatments, specifically the BTK inhibitors and drugs like venetoclax, the side effects aren’t as intense and are usually easier to treat. Is that a fair statement?
Dr. Davids: Yeah, that’s a fair statement. There are rare situations where you can have more severe side effects, but for the most part, most of our patients are doing very well with these new targeted therapies.
Relationship Between Side Effects and Quality of Life for CLL Patients
Jeff: For me as a patient, quality of life is at the top of my list. If I can’t do the things that I want, we’re going to have a conversation and figure out how to get there. Quality of life is a complex and personal concept, but it’s directly intertwined with cancer treatment side effects. Dr. Rogers, how do you define the quality of life for a CLL patient and how do the side effects of treatment impact this in your experience?
Understanding what matters most to the patient or what’s going to have the least impact on their enjoyment of their life is what we do.
Dr. Rogers: If we’re trying to decide between two targeted agents that are both good options with different side effects, understanding what matters most to the patient or what’s going to have the least impact on their enjoyment of their life is what we do and it can be different for different people.
With a BTK inhibitor, some of the common side effects are bleeding, bruising, joint pains, and abnormal heart rhythms like atrial fibrillation. I have a few patients where atrial fibrillation has been much harder for them than the CLL was at any point. If you’ve had someone who’s experienced atrial fibrillation before and it was bothersome to them, they’re going to try to avoid that treatment.
Treatment Side Effects vs. Treatment Schedule
Dr. Rogers: Meanwhile, for venetoclax, quality of life isn’t treatment side effects but also treatment schedule. When given as a first treatment, venetoclax is given for a year with obinutuzumab, which is a monoclonal antibody, and that requires an eight-week start-up. It was very striking what Dr. Davids said that we try hard now to make it clear to patients that we don’t want them to be disabled by the treatment they’re going through, even temporarily.
We mostly want you to be able to live your life and do what you want.
People have told me they worry about their lives being over and not being able to do anything when they do treatment. I usually tell them that some people get severe side effects that have to be dealt with, but we mostly want you to be able to live your life and do what you want. That’s how I define quality of life as a physician. I want my patients to be living their lives and doing the things they enjoy with minimal impact from their treatment.
These days, one of the biggest impacts can be the treatment schedule. You can continue to work or play golf, but you still have to come for visits and that’s the biggest thing that changes with treatment. The venetoclax and obinutuzumab regimen requires an eight-week start-up, which can be intense. I’ve had patients who choose not to do that because they don’t want to take time off work to go to infusion visits.
I’ve also had patients take online meetings during infusion visits, which I’m fine with as long as they’re still engaged in their medical care. I don’t tell anyone they have to work during treatment but some people love their job and don’t want to step away from it.
Quality of life is defined by the person and I try to minimize the impact of what we’re doing for CLL on people’s enjoyment of their life, whatever that is. Something that isn’t talked about a lot is trying to minimize the psychological impact of starting treatment. We make sure people know that treatment doesn’t mean that they won’t get to do the things they like, even though scheduling is something they’re going to have to deal with for the most part.
Dr. Davids: If they do want to do the venetoclax-based regimen, it’s a bit disruptive to their schedule. When patients aren’t on a clinical trial, I try to have some flexibility so that if they have an important event, we can delay by a day or two, but I try to keep them on schedule. It can be a little more challenging when patients are on a clinical trial because we need to rigorously adhere to a specific schedule.
For some patients, it doesn’t make sense to invest eight weeks or so in coming in for frequent visits. A lot of our patients are used to being seen every three to six months. If we tell them to come in once or twice a week for a couple of months, that can be challenging. Some of our older patients don’t drive anymore and need to get rides or live far from the center.
One of the beauties of the CLL treatment setting right now is that we have other options. Patients like that can go on BTK inhibitors. They require minimal monitoring and for some patients, that’s nice for their quality of life. They come in a couple of times early on to make sure everything’s going well and they can get back to their three- to six-month interval schedule.
Having different options for different patients is great. We’re on the precipice of having a new regimen approved in the US, which is a combination of acalabrutinib, one of the BTK inhibitors, with venetoclax. That’s going to be a nice advance because it will offer the opportunity for an all-oral, time-limited regimen.
One of the beauties of the CLL treatment setting right now is that we have other options… Having different options for different patients is great.
Right now, if you want all-oral therapy, you have to go with a BTK inhibitor and take it long-term for many years or you can go with obinutuzumab and venetoclax and have that opportunity for the one-year, time-limited therapy.
If approved, which we think it likely will be, acalabrutinib with venetoclax will be two pills. It’s a time-limited treatment of about 14 months or so and then you’re done. You don’t need to go through obinutuzumab infusions and that’s going to be a nice option to have for patients as well.
Dealing with Side Effects
Jeff: Whether you’re being treated, waiting for treatment, relapsed, or in remission, all CLL patients are dealing with some kind of symptom. It’s a fact of life, whether we call it fatigue, low platelets that make people bleed easily, joint pain, or AFib. Dr. Davids, what kind of practical advice do you give patients for dealing with those symptoms?
Dr. Davids: The disease itself can cause a lot of symptoms. There’s an interesting study where they took CLL patients who didn’t need treatment and randomized them to an early intervention approach with ibrutinib versus a placebo. It’s a rare opportunity in CLL to see what happens in a population being treated with a placebo.
As they stay on therapy longer and the CLL gets into a better remission, they tend to start to feel better overall.
In that study, there was a 90% rate of side effects in the patients on ibrutinib and a 90% rate of side effects in the patients on placebo. It was the same in both arms. That speaks to how the disease itself can cause a lot of issues, like fatigue, unintentional weight loss, sweats, and joint aches.
I counsel my patients that as they stay on therapy longer and the CLL gets into a better remission, they tend to start to feel better overall. They’ll develop better energy, their appetite may come back, they may gain some weight back if they’ve lost weight, and sweats can go away.
One of the more challenging periods is getting started on treatment because that’s when you have some side effects from the drugs and there’s still a lot of CLL around, so they may not be feeling great. As they get a few months into treatment, the CLL starts to get better. It involves counseling and coaching them through that. Hold out and be optimistic. It’s going to get better with time. For most patients, they may start feeling better pretty quickly, even within a few weeks of starting on therapy, because of disease control.
We have a very good multidisciplinary team. We have a great nurse practitioner who’s seeing the patients often more frequently than I do. We have pharmacists who help and look for issues with the drugs and side effects. The caregivers for the patient are a key part as well. It’s a team effort, but we do a pretty good job of getting patients through that more difficult period and to a better place where they’re feeling better.
How Can Patients Actively Participate in Their Care?
Jeff: Dr. Rogers, it’s hard for a doctor and the care team to know how to guide a patient through their side effects if they don’t know they exist. How do we do this? What does a patient have to do to get the best possible side-effect care from you and your team?
Dr. Rogers: One thing Dr. Davids said that’s important is I’m not the only person. Different members of the team are asking about side effects. Nurses, nurse practitioners, and physician assistants help too.
The nurse practitioner I primarily work with is a man and sometimes, patients tell him things that they won’t tell me or vice-versa. Sometimes the gender of the care provider or the care team member can make a difference in people disclosing side effects.
Asking about specific side effects that we know are common can help because I find people disclose more. If there’s one that they perceive is ruining their quality of life, we ask about it so we can get the spectrum.
Sometimes there are side effects that are bothersome to one person that aren’t to somebody else, like joint pain. We ask about it, learn about it, and suggest pain medication. But if the person’s happier living with it than trying any sort of intervention, I’m okay with that.
Effective Patient-Physician Communication
Jeff: Dr. Davids, it sounds like in the current landscape, most side effects are fairly easily managed for CLL patients. Let’s talk about how you deal with these side effects.
Dr. Davids: Every drug is different. Every side effect is different. Every patient is different. Sometimes we see more significant side effects with BTK inhibitors where we run into issues with bleeding and that can be serious.
Being very proactive and communicating with your doctor about what’s going on is important.
One thing that’s very important for patients on BTK inhibitors is to know that if they need any kind of surgical procedure, they need to stop taking their BTK inhibitor before and after the procedure. It’s helpful for patients to check in with us because every procedure is different and may require a different length of hold.
I have seen some patients run into issues where they forgot to call and ask us. They were taking their BTK inhibitor and had pretty serious bleeding issues after surgery. It’s about communication and anticipation. We’ve had situations where we’ve had to postpone surgeries. Being very proactive and communicating with your doctor about what’s going on is important.
Another common one that I see with venetoclax and BTK inhibitors is diarrhea or loose stools when patients are first getting started on these drugs. There’s a period when your body needs to adapt to the drug.
If it’s pretty significant diarrhea, we usually want to do some testing first before we do interventions. We’ll look for certain infections, like C. diff, which can be a more serious infection. It’s usually not there, but we like to make sure that’s not there before we recommend things like loperamide, which slows down the bowels.
There are little tricks as well. Sometimes taking the pill at a different time of day or with a different type of food can be helpful.With venetoclax, I’ve had luck with patients taking it with a fatty meal at night and when they wake up, they feel better and not having diarrhea during the day.
Sometimes we need to reduce the dose of the drug. I do find that it settles within the first couple of months. Most patients can then back off on loperamide and get back up to the full dose of venetoclax.
Overcoming the Fear of Dose Reduction
Jeff: Dr. Rogers, for whatever reason, a lot of patients are uncertain and fearful regarding dose reduction because it introduces a cloud of uncertainty to what’s going on.
Dr. Rogers: This is true across other cancers as well. People worry about dose reduction largely because they worry that the treatment will stop being effective if the dose is reduced.
With venetoclax, for example, the target dose for most people who don’t have drug interactions with it is 400 mg a day. However, when people have been on it for a while, there’s an efficacy at 300 mg or even 200 mg. If you’re taking 100 mg twice a week, you start to worry that it’s not going to work. There’s a point where you get to a dose where most people think that’s not going to be effective or with BTK inhibitors, you’re not going to have occupancy or the inhibitory action.
There’s a lot of room for dose reduction before you get to a point where the drug isn’t going to work. For people with side effects, maybe the target dose isn’t the right dose for them. When we do studies to design dosing of drugs, they look at drug levels in the blood, biological outcomes, and how much of that BTK protein is occupied with different dosing schedules. But that’s in a group of people and individuals can have different experiences.
There’s a lot of room for dose reduction before you get to a point where the drug isn’t going to work.
There’s some thought and some data to support this that people with side effects might naturally have different drug metabolism and maybe what’s needed is a different dose. With BTK inhibitors, there’s some scientific evidence that early in the disease, the drug is cleared by the amount of BTK in the body, which is a lot when there’s a lot of CLL, and further in is not a lot and the protein production is downregulated.
It’s quite possible that a lower dose is necessary to maintain that response after beginning treatment. Some of these side effects improve over time. People have a lot of CLL in their bodies. They see things improve every time they come for a visit. But a year in, when you’re looking at joint pain that’s interfering with your pickleball game when your blood counts look good, maybe it’s time to think about dose reduction. It’s also a time when the CLL is in a different spot and dose reduction might be more reasonable.
It’s quite possible that a lower dose is necessary to maintain that response after beginning treatment.
There are even some studies looking at databases of people using these drugs through insurance claims showing that reducing the dose did not result in a sooner time being prescribed a new treatment. It looked like it might even be going better for people probably because they were able to tolerate and stay on this drug.
It’s always worth asking your physician anything you’re worried about. If dose reduction is suggested, talk to them about whether they expect this will change your treatment outcome, but there are plenty of reasons to think that in most cases it will not. There’s a lot of room for dose reduction in a way that we know is not going to compromise how well the treatment works.
Fostering Effective Provider Communication
Jeff: We’ve talked about side effects. We’ve talked about the difference between male and female patients and how they communicate these side effects to their care team. Is there a way that you prefer patients to communicate with you?
Dr. Davids: I encourage patients to make a list of their issues ahead of time before coming to the visit. When you get to a visit, sometimes you’re like a deer caught in the headlights. Sometimes people don’t think of the things that have been occurring to them.
Keep a little notebook over the months in between the visits and jot stuff down. I find it most efficient to go through all those things in person together with the patient and counsel them through each one. I don’t mind if it’s a long visit.
A challenging mechanism that has developed is using a patient gateway to communicate, which has its pros and cons. It’s good for patients to be able to access their care team. But sometimes, over three months, patients send a message every time they think of a question, so they may be sending 15 to 20 messages in between their three-month visits.
It takes a lot of time on our end. We try to be as responsive as we can. We’ve hired additional staff to manage the volume of messages that come in because as you can imagine, if you have 10 or 15 messages from 200 or 300 of your patients, that’s a lot. I’m not saying that’s a bad thing, but we need to rethink how we do that.
If patients are having more acute side effects, I encourage them to page us directly. We’re available to call back and have teams to help support us as well. If you’re sitting on a more serious side effect, that’s not good. Communication is key, but be smart about how to communicate.
A challenging mechanism that has developed is using a patient gateway to communicate, which has its pros and cons.
Dr. Rogers: If there are things you want to discuss, make a list. I’ve had a couple of people who send a list of questions a week before their appointment through the patient portal. We have a list now so that they know what it is and I can read what it is. Some people take physical notes, some people have them on their phones. If there’s something that they want to discuss, decide ahead and use your visit time to do it.
The patient portal is an excellent communication tool, but you can’t be doing that every day, asking something new. We do those during business hours. I tell my patients that they’re welcome to write a note at 2 a.m., but we will not be replying until the next business day. Sometimes, you get people who send a bunch of concerns and I tell them that we can’t answer all of these on the phone and that we’re going to schedule a visit. Occasionally, we’ll provide education. This is a concern. This is something that should be handled by the phone, so we can call and get it sorted out.
I have some patients who don’t use MyChart and they have a different way to communicate with us. It’s good to have multiple approaches. In terms of making lists of questions and sending them ahead, whatever helps you stay organized so that you get the answers you need.
Something that has been very helpful for us is open notes. We have been required to provide all test results to patients and provide notes. Some people like reading them but some people don’t. Some patients couldn’t remember something I said so they went back and looked at what I wrote and that helped. They didn’t have to call because they saw my notes. Some people know how to look at those. Some people don’t. They’re not written in patient-friendly language.
Patients will get their blood test results before they even come to see me, so they can think of questions about their results and I can address that during the visit.
Think through if you want to open your test results on a weekend and do what’s right for you.
Overall, it’s good to allow people access to their health information immediately. But I’ve had a few patients who call us up very angry that we released imaging results on a weekend. We didn’t do that; radiology did. Then they thought they had no way to reach out to us about something they were terrified about, which is also not true.
We have a 24-hour answering service if people are extremely worried about a test result that was released to them by the system on a weekend. Understand the process and the value in it but also think through if you want to open your test results on a weekend and do what’s right for you.
Dr. Davids: I feel very similarly about test results. It’s great to have access to all your data, but you have to know yourself. If you’re the type of person who’s going to freak out if you see something strange in a report and it’s a Friday evening and no one’s going to be able to get back to you for a few days, don’t open the report.
I see our job as looking at those reports, filtering out the things that aren’t worrisome, and telling you what’s important. Patients will be very worried about a tiny little lung nodule that wasn’t described before. If it’s 2 mm, I’ll say that they don’t have to worry about it, but if you see that result first and I’m not immediately available, you may be worried for days. It doesn’t bother some people and if you’re one of them, look right away. You have to know yourself and what you’re comfortable with.
If you’re the type of person who’s going to freak out if you see something strange in a report… don’t open the report.
Dr. Rogers: We have a system where if it’s a result that needs emergent action, which rarely happens in my clinic, the radiologist will call me so I can contact the patient. We don’t release test results with emergent findings without anyone on the healthcare team being notified, which I think some people don’t know.
Jeff: For the past couple of years, as I sat in the waiting room after having my blood work done, I have a very distinctive alert from my phone as my test results start coming in. I’m one of those people who are face down on the phone almost instantly because I want to know what questions to ask my doctor when I go in to review those results.
I’m coming up on 15 years of living with CLL and I’ve learned that the most important thing is not one test result; it’s the trend of the test results and how things are going over time. Not everyone is there yet and this is part of how we communicate with our care providers. This is how we work with our team.
Clinical Trials in CLL
Jeff: We’ve been talking about BTK inhibitors and it seems like the drugs keep on coming, one after the other after the other. When I started, it was pretty much FCR (fludarabine, cyclophosphamide, and rituximab) or nothing.
Let’s talk about how we got here. We’ve been doing all this research. We have CLL patients participating in clinical trials. We have the data coming back. How do you anticipate these advancements and how they’re going to impact treatment decisions? Are people going to put off starting treatment because something new is right around the corner?
Dr. Davids: We wouldn’t have all these great new drugs if patients didn’t go on clinical trials. The patients who came before helped bring these drugs to the patients of today. Patients of today also should consider clinical trials because you can help to develop the next wave of drugs for the next wave of patients. Patients deserve a ton of credit for making all this possible.
We wouldn’t have all these great new drugs if patients didn’t go on clinical trials.
Ibrutinib was a huge advancement. When I heard about a new BTK inhibitor coming along, acalabrutinib, I was skeptical at first. We already have a great drug with ibrutinib. Why do we need a second BTK inhibitor? Acalabrutinib turned out to be as equally effective as ibrutinib but with fewer side effects. It was a big innovation that acalabrutinib came along.
Then zanubrutinib came along and I said the same thing. Why do we need another, more selective BTK inhibitor? It turned out that in one study, zanubrutinib is better than ibrutinib in terms of how well it controls the CLL and is better tolerated.
Pirtobrutinib works very differently from the three BTK inhibitors and it can work even after all three of those other drugs stop working, so that’s a big advance. I’ve been proven wrong at each step along the way.
It’s helpful to have four different BTK inhibitors. I’m trying not to make the same mistake with a new class of drugs called BTK degraders, which are in early-phase clinical trials. This is another way to target BTK and they’re showing some significant promise.
It’s possible and very likely that eventually, we’ll have at least a fifth BTK inhibitor approved for this disease. It’s not what we’d call me-too drugs where it’s the same drug with a different label. These are all different drugs. They all have pros and cons and there’s a role for each of them in the treatment of CLL. It’s exciting times and continues to be exciting for patients to have all these options continuing to evolve.
It takes some courage to try new combinations or schemes for giving them.
Dr. Rogers: I completely agree. The only reason that we have these drugs is because people were willing to participate in clinical trials. I also see people who are afraid of participating in a clinical trial for fear of getting a placebo. Some of the lack of understanding of what research participation is a barrier to people doing it. It takes a lot of courage to do something where we don’t have all the information about how this particular treatment scheme is going to work.
A study we have right now for people going through their first treatment is a combination of currently approved drugs. Mostly, when people hear what it is, they say, “Okay, neat. These are drugs that you’re talking about as a standard of care.” It takes some courage to try new combinations or schemes for giving them. I always try to remember to cover that people will not be getting a placebo because we don’t have that in any of our current CLL trials.
Someone said once that participating in a clinical trial is like getting tomorrow’s treatment today. For people who are worried or don’t want to take an investigational drug, I remind them that these currently approved drugs were drugs that people got as research participants before they were on the market. They were able to benefit from what is a highly effective therapy before it was commercially available. This can directly improve the type of treatment people are getting, even though there’s some element of unknown because it’s a research study and we’re trying to learn more about these drugs.
For anyone considering research participation, definitely asking what’s known about the drug, where it is in development, and what the goal of this study is can help people understand better. When people are excited about approved drugs, we were able to treat people with those same drugs before they were commercially available because they participated in research.
These currently approved drugs were drugs that people got as research participants before they were on the market.
I would never suggest a clinical trial that I didn’t think was going to be highly beneficial to the person who was going to take that treatment. We’ve talked about choices for taking a first targeted agent, but there are people who have had CLL that’s now become resistant to several targeted agents. That’s where drugs we have under investigation are much more likely to be effective for their CLL than drugs that are currently on the market and a huge reason for people to consider research participation. At that point, you’re going to get something that we know is very likely to be better than commercially available drugs.
Shared Decision-Making in Your Care
Jeff: What you were saying got me thinking about this process as a collaborative process. It used to be like it or not. The paradigm was a patient presented with an illness, they saw the doctor, the doctor did an evaluation, the doctor prescribed a course of treatment, and the patient took the treatment. Things have changed now.
We have a lot of options. There are four BTK inhibitors. There’s venetoclax. There are monoclonal antibodies. There’s no treatment. I would like to think that we’re moving closer to a collaborative environment where the care team does the decision matrix with the patient. Dr. Rogers, how do you foster that environment with the patient?
We’ll discuss the treatments and by the time we’re done talking, it’ll be clear what to do and we can decide together.
Dr. Rogers: I strive to make my clinic a collaborative environment. When the venetoclax and obinutuzumab regimen was approved, you have BTK inhibitors versus venetoclax and obinutuzumab. I had a lot of consultations with people considering their options for the first treatment and asking me what they should do. Until I get to know you, I can’t help you. I can’t tell you what to do.
Usually, I say, “Why don’t we talk? I have some questions for you. You probably have some questions for me. We’ll discuss the treatments and by the time we’re done talking, it’ll be clear what to do and we can decide together.” That’s the best approach.
Some people don’t want to get options. They’re very overwhelmed by the options, so they want a recommendation. After a discussion, they say, “I don’t want to think about this. Ask me what you need to know to make the best recommendation for me, but I don’t want options. I want you to tell me what I should do.”
I find it difficult to pick for someone. I have to ask enough questions so that I can make the recommendation for what I think will be best. I respect the fact that some people get overwhelmed by the choices, don’t want to have options, and want to be told what to do. That’s not the way I prefer to do things, but if that’s what the person who I’m taking care of wants, then I try to do that.
I try to narrow it down. Often, there will be 1 or 2 options that I would prefer for the patient.
Dr. Davids: I have a very similar approach, I would say. Some patients prefer to be told what to do and it’s important to ask what their preference is upfront about how they want to approach it.
Another scenario is completely leaving it up to the patient. Present the options as all being equal and let the patient choose. I tend not to do that so much either, so I try to narrow it down. Often, there will be 1 or 2 options that I would prefer for the patient.
Sometimes you get the dreaded question: what would you do if this was your sister or your mother? I would recommend to a patient anything that I would for a family member because I believe in it no matter who I’m recommending it for.
There are scenarios where we’ve gotten down to maybe two or three options and the patient will say, “I would lean more toward this one based on what you’ve told me, but these other choices are reasonable too, so think it over.” Ultimately, it’s the patient’s choice. I see my role as guiding them to that choice and sometimes it does help if I express what my thought is for a particular patient. A lot of patients find that helpful.
Final Takeaways
Jeff: If a brand new CLL patient comes into your clinic and you’ve got 60 seconds to give them one message, what do you tell them?
Dr. Rogers: I usually tell people that we expect them to live with this for a very long time. The goal is to help them live as well as possible and be the least bothered as possible by CLL.
Dr. Davids: Depending on their age, for patients diagnosed with CLL in their 70s and 80s, I always say to them that our goal is to have them live whatever their normal life expectancy would be otherwise. We have very effective treatments and it’s unlikely that CLL is going to shorten your lifespan.
For younger patients, I don’t feel as confident saying that yet because if you’re diagnosed with CLL in your 50s, we don’t know what happens with these targeted therapies 30 years from now. I tell those patients that we already have a lot of good treatments, but over the next few years, we expect even more good treatments to be developed. The longer you live with CLL, the longer you’re going to live with CLL because we’ll have more and more treatments available. I also try to be optimistic.
Jeff: I was diagnosed with CLL at 46 and I’m now 60. Currently, I’m knocking out between 40 and 55 miles every week speed walking. I’m eating well and drinking well. I’m being a good father and husband. I’m doing all the things that I would want to do if I didn’t have CLL. I’m living a good life. It’s my mission as a patient advocate to make sure that it is possible to live a very good life, even with a CLL diagnosis.
I take an active role in my care. I listen to my care team when they say I need to do this, this, and this. I do what I need to do to present my body to my care team in the best possible shape so that when it is time to treat, we get to pick the right treatment plan so that I can live my best life. That is literally what I want for every single patient and caregiver. You can live a very long, very good life with CLL.
Conclusion
Stephanie: Thank you so much, Jeff, for your guidance in the conversation and for your perspective. We always want to make sure that we are emphasizing what that patient and care partner voice is. It is critical obviously beyond the education here.
Thank you so much, Dr. Rogers and Dr. Davids, for not only being incredible as CLL specialists but also for providing so much more time and extra time to help the community beyond the people and the patients you see in the clinic.
We also want to say thanks again to our sponsor Pharmacyclics for its support of our independent patient program and special thanks also to our partners, The Leukemia & Lymphoma Society and The CLL Support Group.
Thank you so much for joining us. I hope that this was helpful in one way or another. We hope to see you in a future program. Take good care.
Thank you to Pharmacyclics, an AbbVie Company and to Johnson & Johnson, for their support of our patient education program. The Patient Story retains full editorial control over all content
The Latest Treatment Options for Relapsed/Refractory Follicular Lymphoma
Edited by: Katrina Villareal
Follicular Lymphoma 360: The Latest Treatment Options For Me
Hosted by The Patient Story
Discover the latest in treatment options for relapsed/refractory follicular lymphoma from leading experts. This insightful webinar covers everything from the nature of the disease to innovative therapies and patient support. Don’t miss this opportunity to learn and connect with those at the forefront of lymphoma care.
Discover the latest in treatment options for relapsed/refractory follicular lymphoma from leading experts to help you or your loved one navigate this journey with confidence and hope. Dr. Joshua Brody from The Mount Sinai Hospital and Dr. Celeste Bello from the Moffitt Cancer Center discuss bispecific antibodies and CAR T-cell therapy, including their benefits and side effects.
Understand the role of watchful waiting and active surveillance. Gain valuable advice from lymphoma specialists on navigating treatment options and clinical trials. Discover the importance of support groups and resources for patients.
Stephanie Chuang: I’m the founder of The Patient Storyand a blood cancer survivor myself. I went through hundreds of hours of chemotherapy for my diffuse large B-cell lymphoma diagnosis. During that time, I realized how lonely it was and how hard it could be to get good information, and that was the genesis of The Patient Story.
Our goal is to help patients and care partners navigate life after a diagnosis and what it means in human terms. We do this primarily through in-depth patient stories and educational programs. This is especially important in spaces like follicular lymphoma. Patients and loved ones are being told by doctors that it’s highly treatable but not curable, so it’s great to know the latest therapy options and clinical research. We stand behind this message of self-advocacy, especially after diagnosis.
We want to thank Genmab for supporting our independent educational program. Their support helps us host more of these programs for free. The Patient Story retains full editorial control of all content.
We’re bringing this to you in collaboration with The Leukemia & Lymphoma Society, which has raised and invested over $1.5 billion in blood cancer research and provides free educational resources and support. Their information specialists provide one-on-one support on questions from treatment to social and financial challenges.
While we hope that you will walk away with more knowledge, we want to stress that this is not a substitute for your medical advice.
Our discussion focuses on the latest treatment options for relapsed/refractory follicular lymphoma. My co-moderator Dylan Lepak, another non-Hodgkin lymphoma survivor who became a patient advocate, will help lead the discussion.
Dylan Lepak, Patient Advocate
Dylan Lepak: I’m a diffuse large B-cell lymphoma survivor like Stephanie. I was diagnosed in 2021. I went to the hospital with stomach pain and came out with a horrible diagnosis, but luckily, I had a very standard treatment approach. I went through six cycles of R-CHOP and since then, I’ve been good. Since that time, I’ve done a ton of different charity work and moderated online discussion boards.
Dr. Bello, when you first see a patient with lymphoma, what message do you want them to take away after that first meeting?
Dr. Celeste Bello: I try to convey to them that they can relax and take a deep breath. In most cases, we can manage this quite well. Most of the meeting is trying to get everybody’s anxiety down a bit.
Dr. Josh Brody, Hematologist-Oncologist
Stephanie: Another amazing doctor and leader in this space is Dr. Josh Brody, a hematologist-oncologist, director of the Lymphoma Immunotherapy Program at Tisch Cancer Institute at Mount Sinai in New York, and faculty member of the Icahn Genomics Institute. Since 2011, he has developed The Brody Lab, a translational cancer immunotherapy lab that investigates the development of novel therapies, particularly for lymphomas, and specializes in how to use immunotherapy against treatment-resistant lymphoma.
Dr. Brody, I know that you’re very invested in patients beyond the clinic. When you see patients and family members in your office, what do you hope they walk away with from that first meeting?
Dr. Josh Brody: Aggressive lymphomas are a sprint and we need to get things going right away, but follicular lymphoma is a marathon. If you see someone starting a marathon by sprinting, they’re not doing it correctly. We don’t want to overwhelm people with information the first time we meet them. We give them the big picture that hopefully this is going to go very well.
There are a lot of great medicines for front-line therapy and second-line therapy. Some patients might need Plan C, Plan D, and Plan E, so how you develop Plan A and Plan B might impact those. Even though there’s no emergency for the vast majority of follicular lymphoma patients, Plan A and Plan B might affect Plan C, so you want to plan out the marathon thoughtfully and as best you can.
We have to be flexible because we’re going to have to change the plan depending on how things go. There are unique options available at some places that may not be available to others. We might want to do the smartest plan A so that we don’t burn bridges down the road.
What is Follicular Lymphoma?
Stephanie: Dr. Bello, could you summarize the nature of follicular lymphoma?
Dr. Bello: Follicular lymphoma is an interesting disease that’s broken down into different subtypes. We have low-grade indolent ones, which are slow-growing, and one subtype that’s a little more aggressive than the others. Most of the time, when we’re talking about follicular lymphoma, we’re talking about the low-grade, slow-growing one.
A lot of times, they’re picked up by accident on another diagnostic test, like a mammogram, which is a common one I see. Somebody had a screening mammogram and there’s no evidence of breast cancer, but there’s an enlarged lymph node in the underarm or axillary area.
Some can behave aggressively, so we have to keep an eye on these people and treat them differently, but as a whole, it’s a long-term disease that’s managed like a chronic illness. We try to keep it under control and if there’s a flare, we can manage that in most cases. It’s a cancer of lymphocytes, but one that sometimes doesn’t even need treatment.
Most Common Symptoms of Follicular Lymphoma
Dylan: Dr. Brody,if patients do have symptoms, what symptoms do you usually see with follicular lymphoma?
Dr. Brody: My grandma died at the age of 101. She didn’t have follicular lymphoma, but she had the next cousin over that we treated in a very similar way as other low-grade B-cell non-Hodgkin’s lymphomas. We did watchful waiting for 37 years and never needed any therapy.
Most people are asymptomatic, but some people can have symptoms. The most common symptom of follicular lymphoma is a painless lymph node. The B symptoms, which are fevers, night sweats, and weight loss of more than 10% of your body weight, are pretty rare for follicular lymphoma and happen in less than 10% of patients.
Terminology: Watchful Waiting vs. Active Surveillance
Stephanie: Some people don’t like “watch and wait” as a term. It can be tough for so many people to be told they’ve got cancer but they don’t need to be treated right away. How do you describe that period to your patients? What term do you use? How often are people told that they’re on watchful waiting or active surveillance? What is the plan that accompanies that?
Dr. Brody: I grew up saying watchful waiting. Dr. Mike Schuster, a lymphoma doctor at Stony Brook, told me he patented the phrase “active surveillance.” I’m not sure if he patented the phrase, but it sounds a lot better. We’re going to actively surveil you as opposed to watchful waiting, which sounds like we’re going to sit around and do nothing. It’s all about branding.
The reality is we’re going to keep a close eye on you and how close depends on what’s been going on with them, how well you’ve known the patient, and for how long. This concept is super freaky to patients and their families when they first hear it. Some patients don’t get surveilled for that long, but every patient who is still on active surveillance a year later loves the concept. But on day zero, “Wait, what? Why aren’t you treating me? Cancer and no treatment sound super freaky.”
I come in with my grandma’s story, so they can hear that sometimes this can go for decades without needing therapy. The only test that tells you if you’re going to go down the same course is the test of time. There’s no test as good as that, but we’re going to watch you closely as we give you that test.
Dr. Bello: I usually use observation or keep an eye. Some people say that’s what they wanted to hear. Others say they’re getting a second and third opinion. They can’t take it and I feel for them. You have people whose lymphoma was picked up incidentally and you tell them, “We’re just going to watch you.”
Since these are picked up by accident, I always wonder if it would’ve been better if we picked this up 20 years later. Are we doing a disservice that we diagnosed this little lymph node under their arm? Should we have left it alone to begin with? They were living life peacefully and blissfully, and now they’re going to have 20 years of anxiety instead. The anxiety can sometimes be the hardest part of the diagnosis.
Standard Treatment for the First Two Lines of Therapy
Dylan: We’re going to dive into the treatment options, but before we go into the novel treatments, can you give us a breakdown of the standard treatment for the first two lines?
Dr. Bello: The standard is there’s no standard. That’s always the first problem, but it’s a good problem because we have a lot of different options. You like to base it on the patient you’re treating and your goal with treatment.
Some people may have one large lymph node that’s causing them discomfort, so radiation to that spot may be the best option. Some people may have generalized symptoms, like severe fatigue that’s interfering with some of their daily activities, but don’t have a lot of disease. In that case, you may want to give them a less intensive treatment, like a monoclonal antibody like rituximab, put the disease into remission, and see if it corrects their symptoms.
Other people are very symptomatic. They come to you with rapidly growing lymph nodes and have fluid build-up in certain body cavities like in the abdomen. You want to treat them with something that’s going to work quite quickly and that’s usually a chemotherapy plus immunotherapy regimen.
There are a few options available. One of the more popular ones is bendamustine plus rituximab or bendamustine plus obinutuzumab, which is another monoclonal antibody. There are also milder or non-chemo approaches, like oral therapy with lenalidomide and rituximab. The treatment has to be geared toward the patient you’re treating, fitness level, and treatment goal.
What are Bispecific Antibodies?
Dylan: Dr. Brody, what are bispecific antibodies? How are they different than CAR T-cell therapy? What’s their mechanism of action?
Dr. Brody: Dr. Bello mentioned that one of our go-to therapies over the last 24 years is monoclonal antibodies, anti-CD20 antibodies, especially rituximab and obinutuzumab. Rituximab is certainly the most famous. It’s an anti-lymphoma antibody. CD20 is one protein marker on the surface of lymphoma cells. CD3 is a marker on T cells. Bispecific antibodies are two of those antibodies.
In Lady and the Tramp, when the puppies were sucking from the dish at the same time and ended up accidentally sucking on the same noodle, it brought the two of them together. Now instead of that, it’s the kiss of death where the lymphoma cell and the immune cell are brought together by the bispecific antibody and it activates the immune cell at the same moment so the T cell kills the lymphoma cell. I think it was Dr. Matthew Lunning at Nebraska who made up the Lady and the Tramp reference.
T cells are incredibly good at killing lymphoma cells, better than probably any other cancer. It’s the same idea as CAR T-cell therapy. The main difference is that we have to take the T cells out of the person, ship them somewhere, get the CAR T cell made, and have it shipped back. A bispecific antibody is in some ways an off-the-shelf version of that, so you can use it today.
They’ve been incredibly effective at melting away lymphoma cells, even when other therapies like chemotherapy, lenalidomide, and a few others have not been working, especially when rituximab has not been working. Still, these bispecific antibodies have been awesomely effective in inducing remissions in the great majority of follicular lymphoma patients. It’s been an absolute revolution. That is not an overstatement because we didn’t have anything nearly as effective and safe as this until bispecific antibodies came along.
Approved Bispecific Antibodies for Follicular Lymphoma
Stephanie: We have two FDA-approved options in follicular lymphoma so far. Dr. Bello, for what kinds of patients would you recommend bispecific antibodies? Is there anything practice-shifting for you?
Dr. Bello: For follicular lymphoma, we have mosunetuzumab and epcoritamab. Thankfully, the majority of these lymphomas are pretty indolent and respond very well to front-line treatment, whatever you use. You can use chemoimmunotherapy, like bendamustine and rituximab or obinutuzumab, both of which are monoclonal antibodies. We have the luxury of having a lot of patients who don’t end up needing to get a bispecific antibody.
But for patients who progress, we have these immunotherapies: bispecific antibodies and CAR T-cell therapy. I use bispecific antibodies in people who have progressed after two lines or more of treatment. I always try the other lines first, unless we have a clinical trial because they’re proven and have a great track record. I don’t skip straight to a bispecific.
Bispecific antibodies have some side effects that are very unique to them and may not be the best for everybody. They also require a little bit more skill in monitoring them. They are administered in the hospital at the beginning and in the office for the subsequent doses.
Stephanie: Dr. Brody, what about you? How do you approach bispecific antibodies and how do you decide to use one over the other?
Dr. Brody: We’re very lucky to have two FDA-approved options. Their roles are evolving very rapidly and will be evolving very rapidly over the next few years. I would expect that five years from now, bispecific antibodies will be an option for front-line therapy. They may be given as a monotherapy, but honestly, I don’t think that’s their future. I think the future is like rituximab, which is to become part of combination therapy.
Dr. Bello was doing some comparison between CAR T-cell therapy and bispecific antibodies, and I agree very much with what she was saying. But in the future, it may be an irrelevant comparison because it won’t be what’s better between CAR T-cell therapy or bispecific antibodies. It’ll be an apple and orange comparison. Who cares what’s better?
In the future, we probably won’t be giving bispecific antibodies by themselves. Today, they’re only FDA-approved to be given by themselves, so the only way to get them as part of a combination is through a clinical trial. The preliminary data from some trials of bispecific antibodies plus standard therapies have been awesome with the huge majority of people getting complete remissions in some cases, even when prior chemotherapy and such weren’t working.
Medically, mosunetuzumab and epcoritamab are pretty similar. They have pretty similar efficacy and pretty similar safety profiles. Epcoritamab is given subcutaneously and mosunetuzumab is intravenously. For many patients, it doesn’t make a difference. For some patients, especially those who have had multiple prior lines of therapy and whose veins have gotten beat up, it does make a difference to them. Some patients have a port that they don’t want to have anymore or they don’t want to get a port.
Another difference is that mosunetuzumab is a finite course of therapy, about nine months, while epcoritamab can be given until it stops working or until you have a bad side effect. We have a lot of patients who have been on it for a year or two and say they want to pause for now, and we’re okay with that. It’s not exactly the recipe as written, but we don’t feel like we’re burning any bridges because if the lymphoma were to grow back, we might be able to treat them again. Some patients prefer to keep going because they don’t like the notion of doing nothing.
Because it’s more about the total doses of epcoritamab, for me, it’s simple. If I have a patient who lives across the street and they don’t want any IV therapy, that patient gets epcoritamab. If the patient lives four hours away and feels strongly about not making too many trips and doesn’t mind getting IV therapy, that patient gets mosunetuzumab. Patients have a big role in that decision.
Dr. Bello: I still prefer CAR T-cell therapy over bispecific antibodies because I see more durable responses, but not everybody can wait to do the whole process. As Dr. Brody mentioned, you have to collect the T cells, send them to be manufactured, and wait for them to be sent back. By then, four to six weeks have gone by and if they’re having rapid progression, they can’t wait.
CAR T-cell therapy can have a little more toxicities with them. Patients are hospitalized a bit longer, so not everybody has a performance status that’s robust enough. That’s when I would use the bispecific antibodies.
Common Side Effects of Bispecific Antibodies
Dylan: Dr. Bello, you touched on the side effect profile of bispecific antibodies. If I was a caregiver or a patient, what should I be on the lookout for and what would my experience be like?
Dr. Bello: A lot of people are now familiar with cytokine release syndrome (CRS). It mimics the most severe infection you’ve ever had with symptoms including fevers and chills. Sometimes, it can be more severe. Patients can have a drop in blood pressure. There can be fluids leaking into the tissue and lungs.
Bispecific antibodies don’t cause much of CRS in most people, so it’s nice that we err on the side of caution. We do it in step-up dosing where we start with a small dose, have the patient come back a week later and give them an increase, then a week later, another increase. Sometimes we hospitalize them to monitor them for 24 hours, but the majority of the time, they do very well.
Neurologic toxicity or immune effector cell-associated neurotoxicity syndrome (ICANS) is more serious. It can present as confusion, word-finding difficulties, or as severe as being obtunded or in a coma. Again, we don’t see much of it with bispecific antibodies so fortunately, it’s not something we need to look for. We let patients know about the possibility, but we don’t usually see that.
Dr. Brody: Dr. Bello was very thoughtful in reminding people that this can be severe, so the patient and, even more importantly, the caregiver needs to know it can be severe. But then we also like to tell people about the reality and the statistics. If they read too much on Google, they’ll unfortunately also read about aggressive lymphoma bispecific antibodies and mantle cell lymphoma bispecific antibodies where the numbers are a little bit worse. But with the follicular lymphoma bispecific antibodies, almost all of these CRS incidences are low-grade.
Similarly for ICANS, in the biggest studies for follicular lymphoma patients, it was the high-grade version of that where people were confused. There was 0% in all of the recent studies, so we do have to tell people about that. At the same time, we want to tell them not just what might happen but what likely will happen. What likely will happen is about half of patients get a fever and they get it either on the first dose or the first few doses.
If a person is getting many more doses in the future, they rarely happen. Most side effects of cancer therapies get worse as you go, like with chemotherapy. Bispecific antibodies are the opposite. It’s the first couple of weeks that have the risk of fevers and then that risk goes down to about zero. I don’t want to say there are no risks because there still are some risks. The risk of infection from common viruses like the flu, RSV, and COVID are real, but they’re true for almost every therapy we give and even for some lymphoma patients who are not even on therapy. Those are the common risks that most of us are facing.
The main thing is cytokine release syndrome and neurological side effects mostly happen in the first few weeks or never happen at all. In that way, it’s a bit of a comfort to a patient because once they get through the first few weeks, I don’t want to say they’re in the clear, but they’re definitely in the easy running part.
Access to Treatment
Stephanie: When CAR T-cell therapy first came out, there were some issues with access in that it has to be done at very specific places. What are your thoughts about bispecific antibodies and access to them?
Dr. Brody: That’s supposed to be the main transformation and revolution about bispecific antibodies. They’re supposed to be accessible and they are or definitely will be. Let me make a little distinction.
For aggressive lymphoma bispecific antibodies, there’s one little speed bump: the ones that are approved now require a one-day hospitalization. One day in the hospital isn’t that bad, but that becomes a real pain for the doctors who have to coordinate that. Even though it’s not a big deal medically , it’s a logistical pain in the butt. Still a lot easier than CAR T-cell therapy, where the patient can spend weeks in the hospital sometimes, but it’s still not nothing.
By contrast, no hospitalization is required for the follicular lymphoma bispecific antibodies (epcoritamab and mosunetuzumab), based on the FDA label and the way that we do it. We occasionally will have an elderly patient we are worried about, so we’ll admit them to be safe, but for most patients, no hospitalization is required. That makes the accessibility hugely more doable than CAR T-cell therapy or even bispecific antibodies for aggressive lymphoma.
The main obstacle to accessibility is community oncologists getting comfortable with these. They’re recently FDA-approved, so they haven’t used them a lot before. Doctors like Dr. Bello and I have been using these for years as parts of clinical trials, so we’re pretty comfortable with them. Like Dylan said, rituximab sounded scary when it was first released and people having infusion reactions was a big deal. Now, no one’s surprised by infusion reactions and everyone’s comfortable with it.
I think it’ll be similar with bispecific antibodies. The hurdle to accessibility is community oncologists getting comfortable with them. There are different ways to facilitate that. One version is the academic doc treats the patient for the first few weeks until they get over that little hump of the risk and then we send them back to their community oncologist. They don’t have to drive back and forth so much. In a couple of years, community oncologists will be very comfortable with these, so it will be less of an obstacle.
Dr. Bello: I agree. Like all drugs, once they’re out for a few years and people have become more comfortable with them, they’ll become more readily available at multiple locations.
Differences Between Bispecific Antibodies and CAR T-cell Therapy
Dylan: CAR T-cell therapy is still a major player. We have three FDA-approved options—liso-cel, axi-cel, and tisa-cel—and tons in the pipeline targeting anything you can find. We talked about bispecific antibodies. What’s the difference between them and CAR T-cell therapy, and the mechanism of action for CAR T-cell therapy?
Dr. Bello: As Dr. Brody mentioned earlier, they’re similar, but the mechanism of action is obtained differently. CAR T-cell therapy is a much more complicated process. Patients come in, they donate blood, and a machine filters out their lymphocytes and gives them their whole blood back. Their lymphocytes are sent to a facility that will engineer the T cells to recognize a marker on the lymphoma cells. In the three products that you mentioned, the marker is an antigen called CD19, which is pretty much common in almost all B-cell lymphomas.
In addition to the T cell being able to recognize that antigen, the T cells are also programmed to be turned on. By nature, when T cells are in your body, they’re not attacking your body randomly. They need a trigger to turn them on. These T cells are engineered to recognize a certain antigen in the lymphoma cells and they’re activated already.
When they’re ready, they ship them back. Usually, it takes a couple of weeks for them to do this. The patient comes in and we give them a moderate dose of chemotherapy over a couple of days to suppress their immune system and then we give their T cells through a transfusion.
Once they get into the body, they immediately start to attack the lymphoma. A lot of times, we hospitalize people for this portion because now is when they start getting cytokine release syndrome or neurological toxicities. We monitor them in the hospital because there are tests we can do to see if they’re going to start getting more severe symptoms. We also have some medicines we can use to attenuate some of these if they start happening.
Patients are in the hospital anywhere from seven days to three weeks, depending on how long the inflammatory process lasts. It can start as soon as the cells are put in or it can start a couple of days later, so we don’t let them go home within 24 or 48 hours. There’s a peak in the symptoms and then you’ll start to see the inflammation lessen, the patients start to get back to their baseline or their normal status, and then we eventually let them leave the hospital.
Obviously, their work is not done because, at that point, their blood counts will be low. Even though it’s an immune therapy and we think that it’s attacking the lymphoma cells, it does cause quite a bit of a drop in the white cells, red cells, and platelets. Some of these patients require transfusion support during the first few weeks after and antibiotics because we see infections happen because of the low white cell count.
What I always found weird with CAR T-cell therapy is sometimes people get very sick for a few days and then it’s like a light switch is turned off. All of a sudden, the inflammation stops. Once the inflammation lessens, the patients start to get back to normal. I always tell them they’re going to have a week of hell and then they’re going to feel all right afterwards.
Dylan: I’m glad you said that because these neurological symptoms can be terrifying. For the patient, it’s going to be a blur most of the time, but for the caregivers, it’s the most terrifying thing in the world.
Dr. Bello: It’s good to let them know because there’s some misconception that CAR T-cell therapy and immunotherapies are benign. They come into the office saying, “I don’t want chemotherapy. I want CAR T-cell therapy.” No, we’re not going straight to that. There’s a misconception that because it’s not chemo, it must be easy. It’s an intense treatment. It’s not going to be a walk in the park.
The Role of Inhibitors
Dylan: Probably the most confusing for patients are the inhibitors. There’s BCL2, BTK, and SYK, and some of these are FDA-approved. Where do those fit into this new paradigm with CAR T-cell therapy and bispecific antibodies? Dr. Bello, how do you use them in your practice?
Dr. Bello: Unfortunately, the data with BTK inhibitors in follicular lymphoma has not been the greatest. BTK inhibitor stands for Bruton’s tyrosine kinase inhibitor. We use them a lot for other types of indolent lymphomas, like small lymphocytic lymphoma (SLL), chronic lymphocytic leukemia (CLL), and Waldenstrom’s, but with follicular, it hasn’t worked that well. There are some studies in development looking at BTK inhibitors in combination.
The other one is the BCL2 inhibitor venetoclax. That one is still a shocker to me. BCL2 is what’s mutated in 99% of follicular lymphoma and this drug that blocks the BCL2 pathway doesn’t work in follicular lymphoma.
The one that had the best results, PI3K inhibitors, was pulled from the market. Thankfully, we have these other options that I don’t miss them too much.
Cure vs. Longer Periods of Survival
Stephanie: Dr. Brody, there’s so much development happening in the immunotherapy space, like CAR T-cell therapy and bispecific antibodies. I know doctors don’t like using the word “cure,” but is there a discussion about that? And if not cured, what’s the consensus on the impact on longer periods of survival?
Dr. Brody: Doctors, especially academic doctors, are extremely diplomatic. We say to patients all the time that follicular lymphoma is incurable. Nothing’s incurable. We just have not found the cure yet. It’s not the disease’s fault. It’s us. There’s nothing magical about the disease. We haven’t been smart enough over the past 40 years, but we’re getting close. When my grandpa’s sister had Hodgkin’s lymphoma in 1949, it was 100% incurable. Now it’s 85% curable and that wasn’t that long ago.
We refer to follicular lymphoma as incurable. That’s how we write it in all of the papers. That sounds scary. It’s a terrible word. Whenever I say that, I have to say it’s incurable, like high blood pressure or diabetes. We don’t have a cure for high blood pressure, but we’ve got pretty good pills that can keep your blood pressure good for the next 50 years. We can’t give you one pill to cure it and that’s what we say for follicular lymphoma so far.
Bispecific antibodies have been the highest bang for the buck in follicular lymphoma in terms of efficacy versus toxicity. By themselves, they have some limitations. They’re good but not perfect. But in combination with standard therapies, like rituximab and lenalidomide, the complete remission rates have been huge in the first early studies. The big studies are getting done now.
Quite honestly, I wouldn’t be surprised if we look back in 20 years and find out that those who got bispecific antibodies plus combination standard therapies never relapsed. It will not hold for 100% of the patients, but it will be for a fraction. I don’t know that that will happen, but I absolutely would not be surprised because so many people are getting such deep remissions. We may be handing out curative therapies to people on those studies today. What’s the likelihood? Ask me again in 20 years, but it’s a real likelihood.
Clinical Trials in Follicular Lymphoma
Stephanie: When it comes to clinical trials, are there ones that are particularly exciting in the follicular lymphoma space?
Dr. Brody: Clinical trials are not always great. However, clinical trials are a time machine into the future. We have been giving people some of these bispecific antibodies in combination for about four or five years now, and some of them are just getting FDA-approved now. Some of these combination therapies are not FDA-approved yet, but they will be FDA-approved in the next year or in some cases, the next five years.
It’s a bit of a tragedy that Americans don’t get access to these mostly for lack of awareness. They’re available at many dozens or sometimes hundreds of hospitals around America, but maybe they didn’t think to ask or the person they asked wasn’t aware of them. That’s where resources like The Patient Story, The Leukemia & Lymphoma Society, and the Lymphoma Research Foundation can be helpful in guiding patients. There’s no absolute commitment to be part of a trial, but hear about it and get the information.
We were talking about front-line therapies for follicular lymphoma before and then hinting at later lines. The NCCN Guidelines are clear. They recommend finding out about clinical trials. Old therapies are considered non-curative, but it doesn’t mean we can’t get a curative therapy with some of these promising trials.
The first thing that patients need at the beginning of their journey is the awareness that there may be some self-advocacy involved. No doctor in America should ever be annoyed if a patient goes and gets a second opinion. My patients get second and third opinions beyond me and I always ask because I’m always interested to hear what they say.
People think of trials as a last-ditch effort and it’s such a bad branding. It shouldn’t be.We have trials for front-line therapy and second-line therapy. The trials for first-line therapy are what we’re super excited about. One example is getting immunotherapy instead of chemotherapy. We have trials of front-line therapy of bispecific antibodies where half the patients get that and half the patients get standard therapy.
Patients have concerns that they’re guinea pigs and don’t know what they’re getting or they’re getting a placebo. There’s no such thing as a placebo in cancer clinical trials. They may get the standard treatment plus a placebo. In most trials, people are aware of what they’re getting. There’s no mystery.
Some of the most exciting trials give patients the chance to skip chemotherapy, to get front-line bispecific antibodies, and combinations of the standard with or without the bispecific on top of it. Because bispecific antibodies have been pretty gentle and mostly safe, we can safely combine them with standard therapies.
The results from some of the early versions of those trials that have been presented at ASCO and ASH showed unparalleled remission rates. They’ve been awesome. Some of those front-line and even second-line trials of similar combinations are, for me, some of the most exciting trials out there right now.
Dr. Bello: I agree. For bispecific antibodies or immunotherapy treatments, the trials that are moving them up now to the second line and even to the front line are the most interesting. If you could get a non-chemotherapy approach, that would be great.
Again, we always have to be careful because when we find out years later that this drug caused this kind of malignancy or this kind of immunologic problem, maybe we should have stuck with the original treatment that we had. Immunotherapies are the wave of the future and the sooner we can move them up, the better, and those are the trials that I’m looking for the results in.
Dr. Brody: In many ways, it’s a rehashing of 20 years ago. Rituximab was approved as a monotherapy and now, we say that rituximab is like chocolate chips: add it on top of everything. There’s not a single B-cell lymphoma where you don’t add rituximab on top of whatever the standard was before and made it better.
CHOP was the standard of care then, but no one talks about CHOP anymore. R-CHOP is the only thing now except for some newer versions of R-CHOP as well. I do think that that will be the standard five years from now. Wait five years for the better stuff or get access to it now through clinical trials.
Recommended Online Resources
Stephanie: A follicular lymphoma patient, Donna P., said, “One of my first questions was how long will I live. Until I found a support group, I was so depressed and fanatical about my disease. Then I started seeing all the comments and how longevity was in my diagnosis, so many others then gave me hope.”
In the initial conversations with the patients when they’re dealing with so much, do you have any guidance for them, whether it’s support groups or resources?
Dr. Brody: My first recommendation always is The Patient Story and as Dr. Bello said, The Leukemia & Lymphoma Society (LLS) or Lymphoma Research Foundation (LRF). There are a few others as well, but those are the best for lymphoma patients.
We also sometimes have in-person groups. The stress of this can be a significant factor, especially for someone who already had stress as a problem before or anxiety as a diagnosis before, so we try to get them personalized counseling. At cancer centers, we’re very lucky to have counselors who have experience with cancer patients specifically or, in our case, with lymphoma specifically.
The LLS Clinical Trial Support Center
Stephanie: The Leukemia & Lymphoma Society has a Clinical Trial Support Center that offers free, one-on-one support. You get connected to an LLS Clinical Trial Nurse Navigator to help you throughout the clinical trial process from finding the right trial all the way through when you’re on a trial, making sure that you have all your questions answered.
Clinical trials aren’t a last resort. The terminology itself can be quite daunting. Patients need to understand more about what clinical trials are so that they can decide for themselves with their healthcare team. ClinicalTrials.gov isn’t necessarily the easiest site to navigate, but the Clinical Trial Support Center can help you navigate a resource like that.
The Right Time to Seek Lymphoma Specialists
Dylan: People often ask, “When’s the right time to get a second opinion?” If you or your loved one has follicular lymphoma, when is the time to get an opinion from a lymphoma specialist? Can you explain the difference between a lymphoma specialist and a hematologist-oncologist?
Dr. Brody: Let me first say that being a community oncologist is tough. Most of these folks are taking care of lung cancer, breast cancer, kidney cancer, bladder cancer, etc. It goes on literally all day. I’m buddies with dozens of them and I hear about what they do and how they stay on top of everything. It’s a very tough job.
Academic oncologists and community oncologists have a pretty good way of working together, which hopefully means they have my cell phone, and for any little thing, they’ll give me a buzz or give me a text. For most of those, the patient doesn’t need to come see us.
Compared to breast cancer, follicular lymphoma is rare. Your regular community oncologist knows about follicular lymphoma and has had a few patients with it. Every month, they see dozens and dozens of breast cancer and lung cancer patients, but probably zero follicular lymphoma. They’ll see maybe a few per year, so it would be impossible for them to stay on top of every little bit of data. There’s no way they could do that for every single type of cancer. Dr. Bello and I can barely do it for all the types of lymphoma, so you can imagine that plus other cancers.
The answer for when to see a specialist is always. However, most patients don’t need to keep seeing a specialist. They can have a back-and-forth where we share the patients. The most common intervention I make when there’s a difference in opinion between me and the community oncologist is to downgrade the therapy. They’ll come in and say, “My community oncologist said I need R-CHOP,” and I’ll say, “You don’t. You definitely do not.” They can get either nothing and undergo active surveillance or get something gentle. We make them aware of clinical trials where they may get access to something that won’t be available for years sometimes.
I don’t fault them for saying that. Even a hematology-focused oncologist sees acute myeloid leukemia (AML), myelodysplastic syndrome (MDS), myelofibrosis, and myeloma most of the day, and then a little bit of follicular lymphoma. As a lymphoma specialist, all we see is lymphoma, so we have to have a little more experience.
Final Takeaways
Stephanie: We’ve had an incredible discussion. Hopefully, many things have resonated, but if there’s one thing that you hope people would walk with, what would you like that to be?
Dr. Bello: One of the most important things is that it’s okay to not get treatment. There are a lot of times when people don’t need to have their lymphoma treated because a lot of low-grade follicular lymphomas can be observed. If that’s your doctor’s recommendation, come to terms with that and know that you’re being monitored. If something changes or happens, we have great options.
Lymphomas are very different than solid tumor cancers in that they all need to be treated and the sooner the better. You have to change your whole mindset with these kinds of conditions.
Dr. Brody: Dr. Bello said it beautifully and I agree with how she said it. If you get diagnosed with follicular lymphoma, thank God you got follicular lymphoma and not some horrible lymphoma because it could have been something else. Thank God you got lymphoma in the 2020s and not in the 1990s because the advances have been unparalleled. There’s no cancer where the advances have been as incredible as in lymphomas and B-cell lymphomas, like follicular lymphoma especially. I guarantee that the 2030s medicines will be better than the 2020s medicines, so some patients will be savvy enough to get access to those even now.
Conclusion
Stephanie: Thank you, Dr. Brody, Dr. Bello, and Dylan for this discussion. I really appreciate your time.
Thank you to Genmab, our sponsor for this program. Their support allows us to do more of these programs and keep them free for our audience. I hope that you enjoyed the discussion and we hope to see you in a future program. Take good care.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Ashley’s symptoms began with mild back pain in October 2022, which escalated to severe discomfort by January 2023. After a series of tests, a CT scan revealed an 11 cm tumor on her adrenal gland and she was eventually diagnosed with stage 4 adrenocortical carcinoma (ACC), a rare cancer affecting about 300 to 400 people annually in the U.S. Despite facing numerous challenges, including a delayed diagnosis due to lack of insurance, she educated herself on her condition, sought out specialists, and joined support groups.
Her treatment journey began with EDP (etoposide, doxorubicin, and cisplatin) chemotherapy and mitotane, which caused severe side effects, including hypothyroidism. Despite the challenges, the tumor showed signs of shrinkage and she underwent surgery to remove it. When chemotherapy became ineffective, she switched to targeted therapy with lenvatinib, which showed promising results.
Throughout her journey, Ashley also struggled with mental health issues and adjusting to the need for help, but she found support through therapy and counseling. Ashley emphasizes the importance of self-advocacy in medical treatment, seeking second opinions, and the value of support groups in navigating her rare diagnosis.
Name: Ashley P.
Diagnosis:
Adrenocortical carcinoma (adrenal cancer)
Staging:
4
Symptom:
Mild back pain on her left side that escalated in severity
Treatment:
Chemotherapy: EDP (etoposide, doxorubicin, and cisplatin) & mitotane
Surgery
TKI inhibitor: lenvatinib
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I was having some mild back pain on the left side, which was eventually where the tumor was discovered.
Introduction
I live in Beaumont, Texas, about an hour and a half away from MD Anderson.
In October 2022, I first started showing symptoms of my cancer, but I wasn’t diagnosed until March 2023 and I’ve been living with stage 4 cancer since then. It’s extremely rare. It affects 300 to 400 people in the US every year, which is about one in a million people.
Pre-diagnosis
Initial Symptoms
When I first started having symptoms, they were very mild and pain-related. I was having some mild back pain on the left side, which was eventually where the tumor was discovered. I would rate the pain at a 3 out of 10. It would always happen after long car rides, so I chalked it up to bad posture.
The pain was on and off throughout the next several months until about January. Then I had severe back pain that manifested at a friend’s house. I was sitting on the floor and it overtook my whole body. It was probably a 7 or 8 out of 10. Within a couple of days, it eventually settled down and then went away. I still thought it was my posture.
Come February, I started to feel a pinching pain around my rib cage. I had never had that. It was persistent throughout the day in a specific spot and that’s what got me worried. I couldn’t figure out what it could be, so it scared me a little bit. Some family members told me it could be this or that, it might be something serious, and that I should get it checked out.
I went to our local hospital where they ran a bunch of tests, including blood work and X-ray. I came in with high blood pressure of around 190/105, if I remember correctly. I wasn’t aware that I had high blood pressure, but I think it has been ongoing and I hadn’t been checking it. I was also anxious, so I’m sure that was playing a part.
CT Scan Revealed Tumor
They saw something in my X-ray, which they said could be an infection in one of my lungs but I had no respiratory symptoms. They gave me a COVID test and it came back negative. Everything they checked came back negative, so they sent me in for a CT scan because they couldn’t figure out what was going on. It was a good thing they did that because that’s when they discovered the tumor coming off of my adrenal gland, which I believe was around 11 cm at the time.
She gave me the news of this enormous tumor coming off of my adrenal gland and the very last thing she said was, ‘It has metastasized to your lung.’
Getting the Scan Results
The doctor comes in with a look on her face and I knew she was about to give me bad news. My stomach dropped when I saw the way she looked at me. The whole mood in the room changed. My fiance came with me to the hospital, but because it had gotten so late and the chairs were so uncomfortable, he was sleeping in the car in the parking lot when she told me.
She gave me the news of this enormous tumor coming off of my adrenal gland and the very last thing she said was, “It has metastasized to your lung.” I could tell she didn’t want to say that part because that meant stage 4. At that point, I didn’t quite understand anything about what she was saying. She said it was 95% sure I had cancer because they can’t tell you 100% until they biopsy.
She ended with, “We don’t think we can handle this here, so we’re going to have to transfer you to an ICU.” They treated my blood pressure because that was all they could do for me.
I called my fiance, told him where he needed to go, and gave him all the information I could. We didn’t know much, so I was relaying what little information I had. He was sitting there crying and I was comforting him more than I was comforting myself. I was completely disassociated. I went into shock a little bit. It was a surreal experience.
Transferring to Another Hospital
I had to be transported to another hospital’s ICU about an hour and a half away, but I had to wait until the next morning for an ambulance to transfer me.
The oncologist came in and said, “I don’t think it’s ethical to treat you without insurance.” They sent in a social worker who handed me his phone to talk to an insurance agent. They sent me home after three days. I had to wait a full month for the insurance to kick in.
When I went home, I hadn’t had a biopsy yet, so I didn’t even know my diagnosis. I couldn’t look anything up because I didn’t know what it was. All I knew was there was a tumor and something in my lungs.
I had something serious going on and all I was doing was waiting. I had no idea how fast things needed to be moving.
Waiting for Insurance
I didn’t have any coping skills because medical issues weren’t something I had ever dealt with, so it all hit me like a train. I went into a state of almost paralysis. All of a sudden, it was almost as if I could feel the tumor and it made me afraid to move and get out of my bed. I thought, Am I going to make it worse? Is it going to rupture? These types of tumors are very, very fragile. They’re like an egg. At the time, I didn’t know, but that was still a thought because I knew how big it was.
I was at my heaviest, but I started losing weight because I wasn’t eating well. I was so paralyzed by fear, worry, and not knowing anything. While at the hospital, I even asked the nurse if I was going to die soon and she changed her demeanor a little bit. She said, “Oh no, no, but this is very, very serious,” and that stuck with me.
I had something serious going on and all I was doing was waiting. I had no idea how fast things needed to be moving. Each day, I would try to get through the day and after another day’s done, move on to the next day. I was looking at my calendar every day, compulsively checking the days off until I could get my insurance.
Diagnosis
Getting the Biopsy Results
Once I got the biopsy results and knew what I had for sure, I started digging. I put all of my anxious energy into finding out more about my type of cancer. I joined adrenal cancer Facebook support groups and started talking to people and watching YouTube videos. There are a few conferences that have a few of the experts that exist in the United States. There’s only a handful of them and they put together this conference with all of this educational information.
One time, I stayed up all night because I was so anxious and freaked out because I didn’t know what my future was going to look like. I wanted to know what my options were. I couldn’t get my mind to separate from what I was going through, so that was a difficult time for me. That beginning stage was probably one of the most difficult experiences I’ve dealt with so far, even after everything I’ve been through.
What helped was educating myself and talking to people with the same diagnosis. There aren’t a lot of us because it’s so rare, but there are support groups. I don’t know anyone in my city who has my diagnosis. I’ve been to urgent care centers and some of them have never even heard of what I have.
At a certain point, I couldn’t work anymore. The symptoms had worsened to where I would get very high blood pressure and resting heart rate, so I didn’t feel like it was safe for me to work.
Finding a Specialist
When I joined support groups on Facebook, they were recommending certain doctors who were doing research on my type of cancer, but they’re located in Maryland at the National Institutes of Health. A girl in the support group called me and gave me all this information. She even put me on a three-way call with someone from the NIH about getting set up. Eventually, someone gave me the direct phone number and email address of the specialist, Dr. Jaydira Del Rivero.
I wanted to get recommendations and second opinions, and see what a true expert would say. The support group led me in that direction and I kept seeing her name over and over again in these groups. I emailed my scans to Dr. Del Rivero and they gave their recommendations.
What helped was this was all government-funded, so it’s all covered. For me, it was perfect because, at a certain point, I couldn’t work anymore. The symptoms had worsened to where I would get very high blood pressure and resting heart rate, so I didn’t feel like it was safe for me to work. I was afraid to even get up and use the restroom because my heart would start pounding like crazy.
Treatment
Discussing the Treatment Plan
I had a very skilled expert team collaborating with a local hospital that I knew would work with them. We put together a game plan for the first steps.
At my oncology appointment, we had a full discussion of where I stood and what things were looking like. I knew a lot about it because I read and listened to experts talk about it, so it didn’t come as a shock to me.
I had to get set up with an endocrinologist as well. The day after my appointment, I had a port put in and then the next day, I had chemo. That’s how quickly things started moving.
When I got to the hospital, they told me I was going to be there for a few days. It’s very intensive. It’s four days of infusions.
EDP Chemotherapy
Unfortunately, ACC patients don’t have a lot of FDA-approved treatment options. We only have one line of chemo, EDP (etoposide, doxorubicin, and cisplatin), and that’s done inpatient.
I showed up to my first chemotherapy session thinking I was going to go home after an infusion. But when I got to the hospital, they told me I was going to be there for a few days. It’s very intensive. It’s four days of infusions and the first day is doxorubicin, which is otherwise known as the Red Devil.
Before they start chemo, they have to do all sorts of tests to make sure your heart’s okay and I didn’t have any issues there. On the second day, I had etoposide and then on the third and fourth days, I had a combination of etoposide and cisplatin. Usually, I’d be in the hospital for five or six days.
Side Effects of EDP Chemotherapy
The first and second cycles were the worst by far. My body didn’t know what hit it and by day two, I was hugging the toilet. I remember thinking, This should be temporary. This is what happens. This is what you think of when you think of chemo. I almost felt so bad that I didn’t care. It was strange.
My blood counts were low too and made me feel so out of it. By the end, I needed a blood transfusion because I was right on the cusp of my counts being too low. They wanted to be on the safe side. I had a lot of fatigue for about a week.
There was a lot of vomiting. I’m already a small person, so I didn’t have a lot of weight to lose to begin with. My heaviest before my diagnosis was 108 lbs and I’m only 5 feet tall. I learned how to cope over time. I figured out that I could tolerate mac and cheese and that’s all I would eat. I made it through.
I had to wear a medical bracelet everywhere I went because if I got stressed out, sick, or developed a lot of pain, I could go into an adrenal crisis.
Mitotane
While doing chemo, I was taking mitotane, the only FDA-approved medication for adrenocortical carcinoma that’s been used since the 60s. What it does is shut down adrenal function and supposedly help shrink things, but more often than not, it slows things down. They use it in conjunction with chemo.
By my second round of chemo, I was taking nine pills per day. They would make me gag because they were enormous and very chalky, which would cause more throwing up.
Side Effects of Mitotane
I developed hypothyroidism due to that medication. It does a lot of damage to the body. It shuts down your adrenal glands so they don’t produce cortisol anymore. Then you have to take hydrocortisone, which is like synthetic cortisol. You have to have cortisol or things get very bad and you could end up in an adrenal crisis.
I had to wear a medical bracelet everywhere I went because if I got stressed out, sick, or developed a lot of pain, I could go into an adrenal crisis because my body wasn’t producing cortisol, which is a stress hormone. I didn’t know a lot about it before all of this started.
I have to have emergency injections now. It’s almost the same concept as an EpiPen, but it’s more difficult to administer because you have to draw up the medication. If I’m ever on the verge of an adrenal crisis, I have to inject myself and then go to the ER, but we don’t think that’s going to happen.
I’m off of that medication now, but my adrenal gland is still not producing enough cortisol to not take hydrocortisone, so I have to give myself thyroid hormones and synthetic stress hormones. These are all side effects of the treatment and not because of the cancer.
We saw shrinkage. They recommended for me to do a third round of chemo because we were trying to get to surgery so I could get the tumor removed.
Mid-Treatment Scan
By the time I was going to start chemo, the tumor had grown to 16 cm and it was so painful. The pain went away almost immediately after the first cycle. I was going to get two rounds of EDP and get a scan to see if it was responding. Thankfully, we saw shrinkage. They recommended for me to do a third round of chemo because we were trying to get to surgery so I could get the tumor removed.
I was going to NIH to get that done by one of their amazing surgeons, Dr. Hernandez. They typically keep the tumors and do different treatments to see what might work.
I was getting my third round in the hospital when I got the call saying they had approved my surgery, so that helped me push through. I was so happy. Initially, I didn’t know if we were going to get surgery or not. I’ve seen people not make it through the beginning stages of chemo and even have their tumors removed before things got bad. The ultimate goal is to get the tumor out. The faster you can do it, the better.
Other than my port insertion, I have never had surgery in my life. We started preparing for a trip up north for a massive surgery.
I eventually had to do more chemo after surgery, but it ended up not working anymore during my fourth and fifth rounds. I had my last cycle in February 2024.
Things are trending in the right direction, so I’m hopeful that this new treatment is working.
Targeted Therapy
They pulled me off mitotane and put me on lenvatinib, a TKI inhibitor. I don’t have many side effects from it. They use that in combination. It’s better than Keytruda (pembrolizumab) alone.
I only have to take two pills a day now. Symptom-wise, as far as the cancer goes, I feel way better. There are some indicators, like some tumor markers, that have significantly gone down. My team is seeing that things are trending in the right direction, so I’m hopeful that this new treatment is working.
I know some people in my support group who are on the same combination and they’re having amazing results. They’re stage 4 like me with no evidence of disease.
Mental Health Care
It feels like I’m making two steps forward and one step back, but now I feel like I’m moving forward at a steadier pace. It was difficult in the beginning because I didn’t have many coping mechanisms. I had never gotten therapy in my life. I thought I was so healthy—and I—was until cancer came into my life.
I didn’t expect cancer. If I was going to have any health problems, cancer was not what I thought it could be. It doesn’t run in my family. I’ve done genetic testing and I tested negative for everything they tested me for.
When I was trying to wrap my head around this, I thought, Why me? And why such a rare cancer? I don’t fit in the age bracket for the age that this affects people. It’s usually middle-aged women, young children, and some middle-aged men. More often, it’s women between their 40s and 60s. I’ve met some friends through the support group who are around my age, but it’s much more rare.
I struggled with why. I wanted to know. I felt like I would get some sort of closure if I knew that, but I don’t know if I’m ever going to get the answer.
I’m getting a lot of help in areas I’ve never had help in, so in a way, I’m rebuilding myself and enriching my life.
I struggled with body image because after my surgery, I was down to 82 lbs and that played a part in my mental health. I felt helpless because I realized there were so many things I couldn’t do, mostly due to the side effects of the medications I was on.
I would be wiped out and I wasn’t used to that. It hit me out of nowhere. I went from being a fixer or a helper to somebody who needed help. I didn’t know how to do that. It was painful for me to adjust.
For a long time, it was one of the most difficult parts for me mentally, especially after surgery because I was in horrible pain. It was an open surgery, so I have a scar from right under my rib cage to past my belly button. It’s probably 10 to 11 inches long.
After surgery, I had to get a lot of help with doing basic tasks. I felt awful for the people having to take care of me because this wasn’t who I was and that was a huge adjustment. I didn’t know how to cope.
I wasn’t getting therapy at the time, but I am now through MD Anderson, which is amazing. I see a counselor and I feel like my mental health is the best it has ever been despite my diagnosis. I’m getting a lot of help in areas I’ve never had help in, so in a way, I’m rebuilding myself and enriching my life. It’s amazing how these resources have been helping me.
I’m using the time that I have now to get my mental health where it needs to be, which in my opinion should be better than it was even before I was diagnosed. I’m working on myself. I see it as an opportunity.
I’ll never be happy that any of this happened, but I have the time and resources now and I’m seeing some benefits. I’m learning a lot of coping mechanisms in how to deal with things in the future.
If the treatment’s working and I don’t have that many side effects, that’s a win-win. I’ve seen nothing but improvement since going to MD Anderson.
There’s no telling where I would be right now if I hadn’t made those choices to focus on what I needed to do to get myself where I needed to be.
Words of Advice
Don’t let the doctors dictate what happens to you. If you have a gut feeling, act on it. Don’t be afraid to get second opinions. Seek out experts. There are usually other routes that you can take. There are so many resources out there. It was difficult for me in the beginning, but once I got everything set up and figured out, I told myself I may have saved my life with these changes.
There’s no telling where I would be right now if I hadn’t made those choices to focus on what I needed to do to get myself where I needed to be. One thing that they would always repeat in my support groups is don’t let location dictate your treatment, who you see, or who you get your recommendations from. If that’s a problem, then start looking into things. You’d be surprised at how many resources are available out there.
Don’t idly sit back and let things happen if things don’t feel right. Talk to multiple people. Join support groups. Not only do they provide great advice, especially in my case when there’s not a lot of information, but the sense of community that you get from it is priceless. I have made so many amazing friends in the ACC community.
There are usually support groups for every diagnosis that you can think of. Mine is so rare and there are three that I’m on. If I find someone with my diagnosis, the first thing I always think of is to try to plug them into the support groups. It helps in so many different ways that it might change the whole trajectory.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Tracy was diagnosed with stage 2B colorectal cancer at 41. A former special education teacher turned personal trainer and nutrition coach, Tracy has long been passionate about promoting a whole-food, toxin-free lifestyle. Despite her healthy habits, she began experiencing troubling symptoms related to her digestive system that were dismissed by multiple doctors over the years.
Tracy’s health issues began in her 20s when she was diagnosed with irritable bowel syndrome (IBS), leading to frequent trips to the emergency room. Despite changing her diet and lifestyle, her symptoms persisted, including bloating, inflammation, and intermittent bleeding. During a vacation in 2014, Tracy saw blood in the toilet, prompting her to seek further medical evaluation. Initially attributing her symptoms to a hemorrhoid, her OB/GYN prescribed suppositories, which provided only temporary relief.
Concerned by the recurrent symptoms, Tracy eventually consulted a gastrointestinal specialist who recommended a colonoscopy. The procedure revealed a polyp near the anal verge, and further tests confirmed it was malignant. Although not initially alarmed, Tracy soon realized the gravity of her situation as she was referred to a colorectal surgeon.
The news was tough—her cancer was located so low in the rectum that surgery would likely require a permanent colostomy bag. Tracy sought multiple opinions, hoping for a different outcome, but each doctor confirmed the same treatment plan: neoadjuvant chemotherapy, radiation, and surgery. Her optimism was tested, but a compassionate oncology team helped her navigate the emotional and physical challenges ahead.
Tracy’s treatment began with 28 days of chemotherapy and radiation. She opted for oral chemotherapy (Xeloda), hoping it would feel less invasive, but the side effects quickly took a toll. By the third week of radiation, she experienced severe pain, dehydration, and burning sensations, leading to hospitalization. Despite her resistance to the idea of surgery, the worsening symptoms and the results of her post-radiation colonoscopy convinced her to proceed.
In December 2015, Tracy underwent surgery, resulting in a colostomy. Although she initially struggled to accept her new reality, including the emotional impact of living with a colostomy bag, she found strength through her faith and the support of her husband and doctors. Post-surgery, Tracy faced additional chemotherapy, but her body reacted severely and she was eventually advised to stop treatment due to complications.
Through it all, Tracy wrestled with feelings of shame and guilt, questioning whether her past choices led to her diagnosis. However, she ultimately embraced her situation, using it as an opportunity to advocate for self-awareness and early detection, particularly through colonoscopies. Tracy’s message is clear: listen to your body, advocate for your health, and turn pain into purpose by helping others.
Name: Tracy R.
Age at Diagnosis:
41
Diagnosis:
Colorectal Cancer
Staging:
Stage 2B
Symptoms:
Bloating and inflammation
Heaviness in the rectum
Intermittent rectal bleeding
Fatigue
Treatments:
Chemotherapy
Radiation
Surgery
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
