How Stage 4B Hodgkin Lymphoma has Helped Redefine Dilan’s Life
Dilan was living a happy life with his wife and young daughter when he received news that turned his world upside down. In March 2015 — ironically, on his 25th birthday — he was diagnosed with stage 4B Hodgkin lymphoma. What started as night sweats, intense fatigue, itchy skin, and lumps on his neck and in his armpit soon led to a life-altering visit to the doctor. That’s when he first saw the words “cancer referral form” linked to his name.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Dilan’s diagnosis touched off a whirlwind of tests — blood work, biopsies, and scans — leading to the confirmation of stage 4B Hodgkin lymphoma, the cancer having already spread to his lungs. But the physical symptoms weren’t the hardest part. The psychological weight of it all was what overwhelmed him. Dilan recalls the deafening silence after hearing the word “cancer,” a moment filled with blank thoughts and creeping fears about mortality, identity, and purpose.
Chemotherapy became Dilan’s primary treatment, stretched over six grueling months. The side effects were brutal. Hair loss hit the hardest — he lost everything from his head hair to his eyelashes, eyebrows, and body hair, too. It wasn’t just about appearance; it felt like losing a part of who he was. His confidence plummeted, and it took a toll on his mental health. Once outgoing, he began hiding behind hats and sunglasses, avoiding social interactions. It wasn’t vanity; it was grappling with an identity that felt stripped bare.
Yet amidst his stage 4B Hodgkin lymphoma experience, Dilan discovered resilience. He turned inward, embracing meditation, breathwork, and journaling, practices that he continues today. He rekindled his old love for sketching and found solace in simple creative acts. These mental health tools anchored him during moments of anxiety, especially when he faced fears of recurrence.
Dilan’s treatment was successful; his stage 4B Hodgkin lymphoma is now in remission. But his story isn’t just about surviving cancer — it’s about redefining life beyond diagnosis. He candidly admits that cancer, paradoxically, became a catalyst for transformation. It taught him to value life, cherish small moments, and live authentically. His message is clear: cancer doesn’t have to overshadow your existence. It can be a reminder of life’s fragility and the strength within us all.
Watch the video to learn from Dilan about:
How he found strength in unexpected places after his cancer diagnosis.
What to do when hair loss feels like losing a piece of yourself.
His powerful reflections on going from diagnosis on his birthday to redefining life.
How cancer, strangely enough, changed his life for the better.
Name:
Dilan P.
Age at Diagnosis:
25
Diagnosis:
Hodgkin Lymphoma
Staging:
Stage 4B
Symptoms:
Night sweats
Appearance of lumps on the neck and in the armpit
Severe itching
Fatigue
Treatment:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Stage 4 Mediastinal Paraganglioma Can’t Stop Jonathan from Living His Life
Jonathan has stage 4 mediastinal paraganglioma, a rare neuroendocrine cancer. His experience is a testament to resilience, purpose, and the power of living fully, even with metastatic cancer. A dedicated lung transplant nurse practitioner, devoted husband, and proud father, he never let his diagnosis define him. Instead, he’s turned it into a mission to inspire, educate, and give back.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
In 2021, while training for the Ironman World Championships, Jonathan started experiencing troubling symptoms — shortness of breath, facial swelling, and dizzy spells. As an experienced healthcare professional, he suspected something serious. A trip to the emergency room confirmed his fears: stage 4 mediastinal paraganglioma, a rare cancer that had already spread throughout his body.
But Jonathan didn’t crumble under the weight of his diagnosis. Instead, he approached it with the mindset of a clinician and an athlete — problem-solving, strategizing, and pushing forward. His stage 4 mediastinal paraganglioma treatment plan included radiation to shrink the primary tumor near his heart, targeted therapy to slow the cancer’s spread, and surgeries to stabilize his spine after painful fractures. Despite the challenges, he remained active, racing in marathons and triathlons and even completing the Ironman World Championship in 2023, an achievement that proved that stage 4 cancer is not a death sentence.
Jonathan refuses to let stage 4 mediastinal paraganglioma dictate his life. He returned to his work in lung transplantation, finding deeper connections with his patients who also face mortality. His focus on sports helps him stay mentally strong in the face of his challenges. He also started giving back by fundraising for cancer patients and their families, hosting JP’s Backyard Ultra, an annual ultra-marathon that has raised thousands for those in need.
Through it all, Jonathan has embraced gratitude, acceptance, and purpose. His message is clear: cancer is not the end — it’s a call to live with intention, advocate for oneself, and find ways to give back. For him, being a “force for good” starts with kindness to oneself and extends to uplifting others. His story is not just about surviving but about thriving, making an impact, and redefining what it means to live with cancer.
Watch the video to learn from Jonathan about:
How he crossed the Ironman finish line after his stage 4 diagnosis.
Why he says stage 4 cancer is not a death sentence.
How he turned a rare cancer diagnosis into a mission to help others.
From marathons to fundraising, how he’s proving life doesn’t stop at stage 4.
Name:
Jonathan P.
Age at Diagnosis:
47
Diagnosis:
Mediastinal Paraganglioma
Staging:
Stage 4
Symptoms:
Shortness of breath
Facial and neck swelling
Vein distension
Dizziness and fainting
Blacking out after standing up
Treatments:
Radiation: external beam radiation therapy
Targeted therapy
Surgery: cement injection for spinal stabilization
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Michaela’s High-Grade Stage 4B Ovarian Cancer Highlights the Power of Advocacy and Support
Michaela was diagnosed with high-grade stage 4B ovarian cancer in March 2024 after experiencing a range of symptoms including persistent side and abdominal pain that were initially overlooked by multiple doctors. She leaned on her daughter, Sonia, during this difficult time. Michaela and Sonia sought medical attention after Michaela’s pain intensified, which pushed them to consult a gynecologist and a gastroenterologist. These efforts led to the discovery of Michaela’s cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Sonia, having dealt with cancer herself, was deeply involved in advocating for her mother’s needs. She drew from her own experience and the advocacy skills she learned while caring for her grandmother who had dementia. Michaela and Sonia decided to go to MD Anderson in Houston. They quickly moved forward with a treatment plan that included chemotherapy and surgery. Although the biopsy results were inconclusive, Michaela was treated with neoadjuvant therapy, involving rounds of chemotherapy before and after surgery.
Despite facing an aggressive cancer stage, Michaela’s surgery was successful, removing all visible tumors. However, Michaela then had to deal with the anxiety and panic attacks that emerged post-treatment and with the fear of recurrence, too.
Michaela and Sonia emphasize the importance of self-advocacy in healthcare, stressing the need for women to insist on thorough examinations and tests when they feel something is wrong. They also highlight the limitations of standard procedures, like Pap smears, in diagnosing ovarian cancer. They urge a more comprehensive approach that includes CT scans and CA125 blood tests.
Throughout Michaela’s story, Sonia’s unwavering support and Michaela’s determination shine through. They advocate awareness and proactive health checks for early detection, emphasizing the strength found in family and medical teams. Their experience underscores the silent threat cancer poses and the need for vigilance and resilience in facing it.
Watch the video to learn about:
How Michaela’s courage helped her face an overlooked “silent killer” and its emotional toll.
How advocacy skills proved crucial in seeking treatment.
The importance of thorough medical checks.
Michaela’s and Sonia’s takeaways from this experience.
Name:
Michaela E.
Age at Diagnosis:
67
Diagnosis:
Ovarian Cancer (High-Grade)
Staging:
Stage 4B
Symptoms:
Bloating and mild swelling
Occasional discomfort and pain in abdominal/pelvic region
Noisier digestion than usual
Fatigue
Pressure/pain after emptying bladder
Treatments:
Surgery
Chemotherapy: neoadjuvant and post-surgery
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
The Power of Positivity: Uroosa’s Stage 4 Stomach Cancer Story
Uroosa was diagnosed with stage 4 stomach cancer in September 2020. Her story started with persistent stomach issues, nausea, unexplained weight loss, and intense fatigue. She saw several healthcare providers but they dismissed her symptoms as being due to stress. Her symptoms escalated and she experienced severe internal bleeding due to an untreated stomach ulcer. She also started to suffer nausea, heartburn, and persistent abdominal pain.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Uroosa underwent multiple endoscopies, colonoscopies, and other tests, but doctors continued to tell her that her condition was stress-related. It wasn’t until her third endoscopy in 2020 that cancer signs emerged and her stage 4 stomach cancer was correctly diagnosed.
Uroosa was initially overwhelmed by her diagnosis but quickly focused on the next steps. She sought opinions from various oncologists, finally deciding on the Whipple procedure with a doctor who made her feel secure. The surgery revealed a more extensive tumor than initially thought. Doctors had to remove significant portions of her stomach, pancreas, duodenum, gallbladder, and bile duct.
Next, Uroosa underwent chemotherapy. This experience was harrowing, as, after each session, she had side effects severe enough to require hospitalization. A pivotal moment came at MD Anderson where genetic testing revealed biomarkers, making her a prime candidate for immunotherapy instead of chemotherapy.
The shift to immunotherapy was life-changing. Uroosa responded well to the immunotherapy medicines and had minimal side effects. Within months, her scans showed no evidence of disease. However, she continued treatment to prevent recurrence, aware of the aggressive nature of her stage 4 stomach cancer.
Throughout her treatment, Uroosa grappled with survivor’s guilt, especially as friends she met through her cancer community faced different outcomes. Her story highlights her resilience and underscores the medical community’s complexities.
Now cancer-free, Uroosa navigates survivorship. Although she doesn’t have cancer anymore, her experience has changed her life forever. Her story showcases the power of hope and self-belief.
Watch Uroosa’s story and learn from her about:
How she faced her daunting diagnosis and her courageous path forward.
Maintaining her spirit and resilience through her treatments.
Coping with the anxiety of recurrence and survivor’s guilt.
Her takeaways for those facing overwhelming challenges.
Name:
Uroosa K.
Age at Diagnosis:
27
Diagnosis:
Stomach Cancer
Staging:
Stage 4
Symptoms:
Extreme fatigue
Sharp and persistent abdominal pains
Nausea
Weight loss
Ulcer-like symptoms
Treatments:
Surgery: Whipple procedure
Chemotherapy
Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Embracing Life and Breaking Stigma: Sarah’s Experience with Ulcerative Colitis (IBD)
Sarah was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD), in 2018. She started experiencing persistent stomach aches, bloating, and severe constipation in her youth, which escalated to blood in her stool during her college years, indicating that there was something seriously wrong. She saw a gastroenterologist who diagnosed her with ulcerative proctitis, which later progressed to ulcerative colitis.
Sarah experienced profound pain associated with pelvic floor dysfunction, which significantly impacted her daily life, affecting everything from exercise to intimate relationships.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Despite trying numerous treatments, including medications and working with a functional medicine doctor, Sarah just got sicker. She started experiencing chronic pain, fatigue, joint pain, and skin rashes. Her pelvic floor issues worsened her constipation, creating a cycle of discomfort and frustration. Doctors recommended surgery, but she initially resisted. The turning point came in 2022 when a colonoscopy revealed a non-functioning colon. Realizing there was no alternative, Sarah agreed to ostomy surgery, spurred by her husband’s assurance that things couldn’t get worse.
Many symptoms of IBD—such as abdominal pain, cramping, and changes in bowel habits—can overlap with those of colorectal cancer, which can make it difficult to tell the conditions apart. While IBD is a chronic condition, it’s important to pay attention to any new, worsening, or unusual symptoms.
The surgery was daunting, but it brought hope and a new perspective. Afterward, Sarah quickly noticed improvements in her quality of life. She could enjoy simple pleasures, like drinking coffee in the morning without discomfort, and was moved to tears by moments like watching a sunrise, which she thought she’d never enjoy again.
Sarah learned to navigate her new normal, seeking advice from an ostomy nurse and connecting with others in similar situations. Her ostomy, which she affectionately refers to as her “badge of courage,” has given her back her life, enabling her to travel, work out, and live without the constant shadow of pain.
Sarah has embraced her ostomy not as a limitation but as a source of strength. She now advocates for others facing similar challenges, promoting a message that life with an ostomy can be fulfilling and normal. Sarah’s journey is a testament to the capacity for adaptation and triumph.
Watch Sarah’s story and learn more about:
Embracing a positive outlook in the face of an overwhelming situation.
The power of support and her husband’s crucial role.
Finding new strength and vitality post-surgery.
Overcoming the stigma associated with an ostomy and how to live fully with one.
Name:
Sarah A.
Age at Diagnosis:
26
Diagnosis:
Ulcerative Colitis (a type of Inflammatory Bowel Disease or IBD)
Symptoms:
Bowel irregularity
Severe stomach aches
Blood in stool
Treatments:
Surgery: ostomy surgery
Steroids
Anti-inflammatory medication: mesalamine
Biologic therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Unwavering Resilience: Kandi’s Stage 3 Adenoid Cystic Carcinoma Story
Kandi is an Alabama native and a vibrant, loving mother and wife who enjoys making people smile. Her world was turned upside-down when she was diagnosed with a rare cancer, stage 3 adenoid cystic carcinoma, in April 2024. Though her family has a history of cancer, Kandi initially shrugged off symptoms like severe fatigue, persistent daily headaches, her tongue sometimes feeling like it was on fire, and anxiety, thinking that they were due to postpartum changes after she gave birth to her third child.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
One day, Kandi found herself struggling to swallow and discovered a large blockage in her mouth. This prompted her to visit an ear, nose, and throat (ENT) specialist (otolaryngologist), which led to her jarring diagnosis of stage 3 adenoid cystic carcinoma. Without hesitation, she underwent surgery on April 22nd, where doctors removed 30 lymph nodes, thankfully finding no cancer in them. Her second surgery took place a few days later, during which doctors removed the tumor itself.
Kandi’s road to recovery wasn’t smooth. She faced the fear of not being able to talk and the adjustments to life with feeding tubes. Yet, her determination to recover quickly saw her taking oral medications by the time she left the hospital. Through it all, Kandi leaned on her faith, attributing her strength to God’s work in her life and the incredible support from friends and family.
Post-surgery, some of Kandi’s doctors considered radiation. However, her radiologist advised against it due to her young age and recovery, sparing her from radiation’s potential side effects. This aligned with Kandi’s desire to pursue a more natural path, involving a clean diet and natural supplements. She also realized the critical role of nutrition and stress management in her recovery journey.
Despite her fears and the psychological effects of her rare cancer diagnosis of stage 3 adenoid cystic carcinoma, Kandi emerged stronger, driven by a newfound appreciation for life. Her ordeal has shifted her perspective, helping her cherish family time and the simple pleasures of life. She acknowledges the “scanxiety” that cancer survivors face but chooses to focus on the positives.
Kandi encourages others facing similar experiences to keep their faith, stay positive, and lean on their support systems. Her story is one of resilience, emphasizing the importance of mental strength and a healthy lifestyle in overcoming challenges.
Watch Kandi’s story to learn more about:
Unwavering positivity amidst chaos and uncertainty.
Family and faith as pillars of strength.
Fostering a new outlook on life post-diagnosis.
How community support fuels and supports recovery.
Name:
Kandi B.
Age at Diagnosis:
32
Diagnosis:
Adenoid Cystic Carcinoma
Staging:
Stage 3
Symptoms:
Fatigue
Headaches
Depression
Occasional feeling of tongue being on fire/inflamed
Appearance of tumor on salivary gland on tongue
Treatment:
Surgery
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
Spenser’s Stage 4 Oral Cancer Story: Turning Trauma into Triumph Against All Odds
Spenser was diagnosed with stage 4 oral cancer. He had always been athletic and was training to be a professional bodybuilder. But in 2022, he experienced an excruciating toothache, which led him to visit the ER. Although he had the tooth removed, he still felt something was off.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
As time progressed, Spenser started to feel very tired and kept having canker sores. He powered through and continued his rigorous workout routines. By January 2024, though, he could no longer dismiss his symptoms. A dental visit revealed a jarring sight in his mouth, leading to a referral to an oral surgeon, who immediately suspected cancer.
The surgeon’s suspicions proved true when Spenser was diagnosed with stage 4 oral cancer (squamous cell carcinoma of the tongue), which had spread to his neck and throat lymph nodes. To deal with a massive tumor, he underwent a grueling seven-hour surgery. The surgeon removed part of his tongue and numerous lymph nodes. The surgery was life-threatening, and his communication abilities were seriously jeopardized.
Recovering from surgery, Spenser next had to consider undergoing chemotherapy and radiation. He initially refused, but his doctors ultimately won him over. His treatment and its side effects were grueling, but Spenser’s resilience shone through. He defied expectations and refused to let his cancer defeat him.
Although Spenser survived stage 4 oral cancer, he experienced permanent kidney damage from chemotherapy and psychological scars, including PTSD and severe depression. Work became difficult, and he struggled under the pressure of his thoughts.
But Spenser rose to the occasion yet again. He found solace in boxing and embraced a new perspective on life. His story is about fighting against the odds, transforming trauma into strength, and never giving up.
Watch Spenser’s story for more about:
The importance of health and nutrition in cancer recovery.
How he remained resilient even during the hardest moments.
Listening to one’s body and seeking medical help if something feels wrong.
What he’d like other people to learn from his experience.
Name:
Spenser S.
Age at Diagnosis:
33
Diagnosis:
Oral Cancer (Squamous Cell Carcinoma of the Tongue)
Staging:
Stage 4
Symptoms:
Severe toothache
Excessive fatigue
Persistent canker sores
Appearance of a large cyst in the mouth
Treatments:
Surgery: partial removal of tongue, neck dissection with flap
Chemotherapy
Radiation
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
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 ...
Embracing Life with Chronic Lymphocytic Leukemia (CLL): Serena’s Empowering Story
Serena shares her experience of living with chronic lymphocytic leukemia (CLL). At just 26, she started to experience strange and worrisome health issues, including severe leg cramps, ovarian cramps, strange knots on her body, hormonal acne, night sweats, and extreme fatigue. She first thought that these were signs of benign conditions like ovarian cysts or perhaps a blood clot. Despite feeling something was off, she had to deal with skepticism from healthcare professionals due to her youth, which only added to her distress.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Seeking answers, Serena struggled with a convoluted healthcare journey that included financial burdens and dismissals due to her insurance struggles. After months of elevated white blood cell counts and persistent advocacy for herself, she finally went to The James Cancer Hospital and Solove Research Institute. Her diagnosis of CLL came unexpectedly and left her to process the emotional impact of having a treatable yet incurable disease.
Serena’s treatment approach, “watch and wait,” seemed strange at first but was necessary. Her medical team decided against immediate treatment, as early intervention does not extend the lifespan of CLL patients. Despite the idea of waiting for her condition to progress, Serena found comfort and strength in the support network provided by the hospital, which connected her with resources to ease her financial and emotional burdens.
Throughout her experience, Serena has remained proactive and optimistic. She had neck surgery to remove lymph nodes when faced with the possibility of Richter’s syndrome, a more aggressive lymphoma transformation. This successful surgery brought her relief and renewed hope.
Serena’s strength and resilience are deeply inspiring. Her advice to others about navigating cancer is to live life fully and focus on joy and self-advocacy. She now knows that it’s crucial to listen to your body and trust your instincts. Even though she isn’t currently on active treatment, she has still made herself part of the CLL community. By joining clinical trials, she also helps contribute to future treatments.
Watch Serena’s video and read this story to learn about:
How she defies expectations by advocating for her health.
The “watch and wait” approach to cancer treatment.
Finding strength in community and support.
Inspirational insights on living fully in the face of adversity.
Groundbreaking highlights on CLL from the world’s largest gathering of blood cancer and disease experts.
Name:
Serena V.
Age at Diagnosis:
26
Diagnosis:
Chronic Lymphocytic Leukemia (CLL)
Symptoms:
Night sweats
Extreme fatigue
Severe leg cramps
Ovarian cramps
Appearance of knots on body
Hormonal acne
Treatment:
Surgery: lymphadenectomy
Thank you to AbbVie for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Focus on living. It’s way better than to focus on dying.
Introduction
Serena V.: Hi, I’m Serena. I live in Columbus, OH.
I have CLL, which is chronic lymphocytic leukemia.
Before My Diagnosis
Serena V.: In the summer before I was diagnosed, I kept getting cramps in my legs and ovarian cramps, and I also kept getting these knots all over my body. My complexion was off, and although I didn’t realize it until later, I was also having horrible hormonal acne on my chin. I was in a lot of pain, too, and I was sleeping all the time and having night sweats. I thought I might have a cyst — a lot of friends had had ovarian cysts and things like that. I also wondered if I was getting a blood clot or something like that because of the knots. It all got me thinking: am I a hypochondriac?
So, I got medical help. The urgent care that I went to said that I might have some sort of mass or something internal and sent me to my gynecologist. But at the time, I didn’t have good insurance, so my gynecologist deferred me. I ended up having to go to the emergency room (ER) instead.
At the ER, they did an internal and external ultrasound, but it didn’t find anything wrong. The only thing the visit turned up was a slightly elevated white blood cell count. The ER then referred me to primary care, but I didn’t have one at the time. So we called a family friend who was a nurse practitioner. She found out that my white blood cell count was elevated, too.
All in all, it took six months for me to get referred to a cancer hospital because my white blood cell count just kept being elevated. I did have health insurance, but it didn’t really help me with my payments — for instance, I would get a $5,000 bill for the ER — and that stressed me out. And especially since I was just 26, people kept gaslighting me and doubting that I could be seriously ill. They would say, OK, there might be something off, but you’re fine. But I did know that something was wrong with my body. I mean, because of the cramps, I would be lying in bed all day with a heating pad because if I moved, I would be in awful pain.
So I didn’t really know what answers I was seeking, but I was afraid. I think what added to my fear was the fact that my brother had Hodgkin’s lymphoma at 22, and he had fortunately beat it, but it was still scary.
Even when I finally did end up going to a cancer hospital and seeing a hematologist, she literally told me that I was pretty healthy. A person only has a 2% chance of getting a blood cancer, and she told me that she thought I would be one of the 98% who wouldn’t get one. Plus, there’s a lot of uncertainty that comes with my age because most people who do get CLL are much older, and there’s just not much data about patients my age.
… since I was just 26, people kept gaslighting me and doubting that I could be seriously ill. They would say, OK, there might be something off, but you’re fine. But I did know that something was wrong with my body.
My CLL Diagnosis
Serena V.: So I was working at a career fair at a school and was driving back to my office, and I had to pull over because my doctor called all of a sudden. I thought, oh, she’s probably calling to tell me I’m fine. But she went, “Hey, Serena, we got your blood results back a day ago. However, I had my coworker double-check my work, which took an extra day. I’ve never seen this in my entire career.” And my stomach dropped.
The doctor said, “You have a disease called chronic lymphocytic leukemia or CLL.” And even now, I remember how I reacted at that moment. Your body doesn’t forget how you feel at a moment like that. My chest tightened up. And I asked her, “What is CLL?” And my next question was — “Am I going to die?”
She replied, “CLL is the most common type of leukemia. It’s treatable but incurable. But I will say that the average age of patients with CLL is 72.” I was so much younger than that.
My Search for the Right Doctor and Treatment
Serena V.: I got transferred to The James Cancer Hospital and Solove Research Institute, where we took things forward. I was expecting to start chemotherapy right away because my other doctor said, “We’re probably going to have to start treatment soon because you’re young, and we don’t want your CLL to get worse.” But when I got to James, they found that my counts were great, and they also told me that for CLL, early treatment doesn’t help with the disease and doesn’t increase the longevity of CLL patients’ lives.
They told me, “We’re going to put you on watch and wait”, which is a treatment approach under which my doctors would watch my condition but not treat me just yet unless and until my condition changes for the worse.
I remember feeling like that was the weirdest thing, because not only was I diagnosed with incurable cancer, but my medical team and I would need to wait and watch for it to get worse before I would start getting treated. Moreover, I was still experiencing those debilitating symptoms. So I was quite anxious.
I was grateful, though, that in the first year of my treatment, I was able to go to James every three months, and they also gave me access to some incredible resources. For example, James linked me up with a young adult cancer social worker who helped me connect with The Leukemia & Lymphoma Society for grants — which was massive considering the financial stress I had been under from the start. And she also gave me some important “cancer 101” tips regarding how to prepare for my appointments.
Overall, I’m optimistic. I think the science is really there, and my doctors are here for me — and they are optimistic about my lifespan.
My Reaction
Serena V.: I had so many questions for the social worker and in general. Since I’m so young, will I need to be treated multiple times? What does treatment look like for me? What would remission mean for someone like me who has an incurable cancer when “remission” means that there’s no more cancer in your body? So, things like that confuse me sometimes. But I do find a lot of hope in going in this direction.
Last year, I had neck surgery to remove five lymph nodes because we thought I was transitioning into Richter’s syndrome, which is a rare complication of CLL in which it quickly transforms into a more aggressive form of lymphoma. That was a horrifying experience. I thought, “Oh, what does my future look like now?” I thought I was going to die. But the operation was successful. My hematologist, for instance, is extremely optimistic that I’m not going to need treatment for a while, especially after that surgery.
Overall, I’m optimistic. I think the science is really there, and my doctors are here for me — and they are optimistic about my lifespan. I did have that question for them, too: since I found out I had CLL at 26, will I die in 20 years or just five? Or will I live longer and die at 80? That’s a question that none of them can answer with any certainty, and of course, I can’t answer it either.
But what I found works is focusing on life, on what I have, on what I can do, and on what I’m in control of, instead of just focusing on the fear of death. Those fears and thoughts are obviously still present. But being able to focus on the good things and on what I already have has really helped me.
What I Think About Clinical Trials
Serena V.: I opted into Ohio State’s research when I was first diagnosed with CLL. They have a program that entails taking an extra tube or two of blood for research. I do think clinical trials are amazing. I was open to whatever I could find because I was desperate for a solution. I was thinking, “What’s going to help me? Are you guys going to do it for me?” It’s nerve-wracking because I’m putting all my eggs in one basket, so to speak. “Do you think this is going to make me better or will it make things worse?”
I do realize there is some uncertainty with clinical trials. It’s obviously a trial you’re undergoing. But you do have to have that trust in your doctors that it might be the right thing for you and your condition.
Serena’s CLL Story Continues Below
CLL Program Highlight
The ASH (American Society of Hematology) Annual Meeting is the world’s leading conference on blood cancers and disorders, like leukemia, lymphoma, and multiple myeloma where top doctors and researchers share the latest breakthroughs. The below program excerpt if from our recent discussion with CLL expert, Dr. Jeff Sharman on news that came out of that meeting that could impact CLL patients like Serena.
CLL patient advocate and long-time health journalist Andrew Schorr sat down with Dr. Sharman to break down the most important updates for you.
Insights on CLL Treatment Advances
Andrew Schorr: So, Jeff, I’ve been living for many years with CLL. Some people who will watch this program are newly diagnosed. I went through all the stages you go through, and I’m sure you see it every day in your practice. What is this? I’m really scared. I have a blood cancer. Will my life be shorter? Am I going to die anytime soon? Please, doctor, what do you have that’s effective to treat me? And if that doesn’t work, do you have something else? We’re going to get into all that, but just at a high level, Jeff, how do you feel for today’s patients?
Dr. Jeff Sharman: You know, Andrew, it’s a great question and I have a very large practice of CLL patients. I take care of about 400 CLL patients and meet each of them. For many of them, I’ve been their first doctor. That’s the nature of my practice. So, for a lot of folks I take care of, I’m their first contact with the medical system in terms of understanding CLL. And I think what you highlight is something I see time and time again, which is a very understandable fear patients come in with.
It’s very common, you say “leukemia” and you see their eyes widen, you see them sit up a little straighter, and what you recognize under there is just a great deal of distress that any cancer would cause.
That’s a really optimistic message that most patients aren’t going to pass away from their disease.
And I think that one of the things we do as a doctor is figuring out how to measure out and administer the unique medicine we give, which is the medicine of hope. And how do you communicate that to patients in the midst of some of the worst days of their lives where they’re like, oh my God, I’ve been diagnosed with cancer? And I do reference quite frequently; there’s a study done in the Italian group that showed that if you’re age 65 and above and have been diagnosed with chronic lymphocytic leukemia, they have demonstrated that you really can’t measure a statistical impact on survival, that most patients are going to outlive their diagnosis. And I think that’s a really optimistic message that most patients aren’t going to pass away from their disease. And my own experience bears that out. The number of patients that I can think of who die of complications of CLL is really a very small fraction even in my large CLL practice — only a small number, maybe two or three per year.
So, a lot of it is communicating that there’s a lot that we’ve got for you. And it’s not the traditional chemotherapy you used to have. We’ve got targeted agents, immunotherapy, and so forth.
Andrew: You already mentioned that sort of people aren’t going to need chemo. We’ve got this whole class of medicines, BTK inhibitors, and even new generations of that which we can talk about. So, first of all, the approved therapies. You have quite an arsenal now, where you can use drugs either by themselves or together, maybe for a bigger impact, right?
Dr. Sharman: Right. You know, I think the way I look at this is that there are three main classes of chronic lymphocytic leukemia drugs. You mentioned BTK inhibitors. I would add to that BCL-2 inhibitors, and then I would add immunotherapy to that.
I think the status of the field right now is trying to figure out the best combination and the best sequence, and those are the big questions shaping the field right now. But the good news is, of course, these drugs are FDA-approved and they’re available to patients. So those are the kind of core questions.
Andrew: So, I’m sure there are patients listening, and their heads are spinning. And they’re saying, well, the different BTKs or a next-generation BTK, with or without venetoclax, with or without obinutuzumab. And I guess what I know is not all CLL patients are the same.
Dr. Sharman: Yeah.
Andrew: This is an individualized choice, right?
Dr. Sharman: Yeah, absolutely. Some patients take the physician’s perspective. Others are involved in their care and want to take an active part in the decision-making. I think that’s great. They should play an active role in it. And there are times when a patient might have their own preferences, but I may have different preferences based on how I’m thinking about their treatment. And sometimes, it’s a matter of calling to attention some of the potential side effects in a certain circumstance. Maybe somebody wants to do fixed duration, but their kidneys aren’t working too well any longer, or they’ve got a really bulky disease, or there could be various reasons why we might pick one over the other. Or even just how we think about, if we’re going to do this first, what do we do second? What’s going to be third? And if we’re going to pick this first, what’s the patient going to look like five to seven years from now when we might need to do the second therapy? So, you have to have a game plan in mind for somebody from the outset.
Andrew: Yeah, that is really well said. Now, I want to back up for a minute. We’ve got several questions from patients. One of them is like me. I said I went four and a half years without treatment. I felt pretty good. Then, I started to develop some lymph node issues, and my white blood count, fueled by lymphocytes, rose to about 283,000. My friend Dave is even higher than that. He hasn’t had treatment, and he feels fine. So, when should a new patient start treatment?
Dr. Sharman: So, for a chronic lymphocytic leukemia patient who’s climbing quite rapidly, what we talk about is the lymphocyte doubling time. Generally, when that number is going up more than twofold in less than six months, that’s our clue that we need to do something. But there are other reasons we might treat decide to somebody, such as bulky lymph nodes, if they start developing marrow dysfunction, if they’re getting anemic, or if their platelets are starting to go down — those can be reasons.
The one that does come up periodically is fatigue. Some patients have disabling fatigue. They might be 55 years old, they’re not depressed, their thyroid is fine, they’re not iron deficient, but they can only go to work for four hours before they have to come home.
So, disabling fatigue, that’s a reason to treat it, but these are all pretty well spelled out in what we call the iwCLL criteria. Rate of change, symptomatic bulky lymph nodes, marrow dysfunction, and others as well. Those are the reasons we treat patients.
… our therapies are just as effective for younger individuals than for older individuals, and in some cases, maybe even more effective for younger individuals.
Andrew: Some people on Facebook, for instance, are under 50 with chronic lymphocytic leukemia. And I know it’s not all that common, but there are people like that. And they say, well, is my age of diagnosis a bad thing? In other words, am I going to have a rougher time with CLL because I’m diagnosed younger? Would I not live as long? What do you tell a younger patient based on their age?
Dr. Sharman: Yeah, that’s a great question. I like to think of these patients in terms of having to plan not for the next 10 to 15 years but for the next 30 years. And I think that, to some degree, we celebrate that we have a lot of these new tools to control the disease. But I think it is a reasonable question to say, can you use these tools to control it for twice as long or three times as long as somebody who’s diagnosed, maybe at age 80? So, it requires a different game plan. And yes, our therapies are just as effective for younger individuals than for older individuals, and in some cases, maybe even more effective for younger individuals. But I think it does require some thoughtfulness to consider that we need to come up with something that’s going to keep this disease in control for quite a bit longer.
Now, the other thing is, this field is moving so fast that those tools that we’ll be using five to seven years from now may not even have been conceived of yet. And we don’t have a ton of time to talk about bispecific antibodies or other drug targets and so on. But to benefit those who are diagnosed younger, I think it’s fair to assume that there will be more tools in the tool shed down the road.
For the rest of this interview, watch our program replay ON DEMAND.
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… what I found works is focusing on life, on what I have, on what I can do, and on what I’m in control of, instead of just focusing on the fear of death.
My Life on Watch and Wait
Serena V.: How do I live on watch and wait? I just live. I live life as much as I can, and that’s the advice I can offer people facing chronic lymphocytic leukemia, or similar situations.
Find something that brings you joy and focus on that. Focusing on watching and waiting — well, it just makes you wait and watch. Even worse, it really makes you hyper fixate on your condition.
And, while you’re at it, listen to your body, too. If you’re feeling off, advocate for yourself with your doctor. In my case, I did realize that for the first year, I felt bad the whole time, and I wasn’t communicating this because I didn’t realize that some of what I was doing, like going home and napping so much, wasn’t normal.
I also realized that my fatigue was keeping me from spending time with family and friends. And later on, those were things that I was told to look out for as symptoms. But I didn’t process that something was actually wrong with me — and I was gaslit about my condition, too. And that’s how it was until I finally listened to my body and realized that something was wrong.
So I say, trust your body, find something that brings you joy, and focus on it. Focus on living. It’s way better than to focus on dying.
Special thanks again to AbbVie for supporting our patient education program. The Patient Story retains full editorial control over all content.
Living Boldly After Stage 3 Colon Cancer: Chloe’s Empowering Message
In early 2024, Chloe was unexpectedly diagnosed with stage 3 colon cancer (adenocarcinoma of the colon) after suffering from symptoms of bloating and other stomach issues. Later on she began to experience weight loss, fatigue, lack of appetite, and abdominal swelling. However, these symptoms were dismissed as effects of her pre-existing anemia. She regularly consulted her general practitioner throughout December to have tests conducted. They only revealed minor infections but didn’t uncover the underlying issue. Moreover, her health continued to worsen.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Chloe paid a visit to the local infirmary, where doctors subsequently discovered and were concerned about high ketone levels in her urine. However, she was still treated for gastroenteritis. Her symptoms persisted, leading her mother to realize that her condition was far more severe than everyone thought and insist on a hospital visit. Significantly, a CT scan revealed a mass in her large bowel and multiple perforations. Doctors accordingly performed emergency surgery, and Chloe woke up afterward with a stoma bag, an unexpected and significant adjustment for her.
The diagnosis was shocking: Chloe’s condition was stage 3 colon cancer. Furthermore, these findings were exacerbated by a rare genetic disorder, familial adenomatous polyposis (FAP), which had gone undetected until that point. This gene caused polyps to clump together and form a large tumor. Following her surgery, Chloe subsequently underwent four rounds of chemotherapy over three months, with sessions involving both IV and oral forms of treatment. Thankfully, post-treatment scans showed no remaining cancer cells. By June 2024, Chloe was finally declared in remission.
Emotionally, Chloe found the process challenging. She consequently had to grapple with the stigma of having cancer as a young individual and adjust to life with a stoma. She concurrently navigated the mental health impacts of her stage 3 colon cancer and bloating, including PTSD and anxiety, around hospitals through counseling and support from loved ones.
Watch Chloe’s video to learn more about:
How to embrace a bolder outlook on life and seize opportunities that you may once have feared.
The importance of listening to your body.
Why it’s crucial for you to persist with medical inquiries if you suspect stage 3 colon cancer and bloating.
How to avoid letting feelings of embarrassment stop you from seeking help.
Name:
Chloe W.
Age at Diagnosis:
25
Diagnosis:
Colon Cancer (Adenocarcinoma of the Colon)
Staging:
Stage 3
Symptoms:
Severe abdominal bloating due to stage 3 colon cancer
Weight loss
Lack of appetite
Fatigue
Vomiting
High ketone levels in urine
Treatments:
Surgery
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Russ Uses His Stage 4 Melanoma Story to Inform and Inspire Others
Russ is an inspirational specialist who works to inspire others through speaking, marketing, and coaching. He shares his experience with stage 4 melanoma, diagnosed in 2022. His experience began when he noticed a growth on his foot, which he mistook for a wart at first. Realizing its severity, he subsequently visited a dermatologist, which led to a biopsy confirming melanoma. The condition metastasized to his groin, prompting significant surgery at the OHSU Knight Cancer Institute in Portland, OR, which involved removing skin from his instep and lymph nodes from his groin.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Despite the surprise and emotional impact of his stage 4 melanoma diagnosis, Russ nevertheless maintained a positive outlook. He optimistically anticipated recovery until a follow-up scan revealed further cancer progression. This led him to consider changing his treatment course. After much contemplation and prayer, Russ decided against immediate surgery, opting instead for continued immunotherapy. Unfortunately, the treatment caused severe side effects, including rashes, fever, and the onset of diabetes due to pancreatic failure.
Adapting to his new diabetic lifestyle, Russ learned to manage his condition with an insulin pump and continuous glucose monitoring (CGM), a challenging adjustment alongside cancer treatment. After his initial melanoma treatment proved ineffective, doctors performed invasive surgery to remove lymph nodes in his upper groin. Post-surgery, his condition stabilized, allowing him to resume normal activities.
However, Russ’s reprieve proved all too brief. He faced new challenges when cancer was discovered in his lungs and brain. Quickly, his medical team initiated another round of immunotherapy and radiation for his brain tumor. Regardless of the fatigue and side effects he experienced, Russ persevered through treatments, which concurrently included multiple hospitalizations for adrenal gland failure and other complications.
Through experience with stage 4 melanoma, Russ has remained driven by his faith and family. As a family man, he finds strength in his relationships. He focused on spreading positivity and encouragement, speaking at cancer conferences, and actively engaging with his community through social media and live streams. His mission to inspire involves reminding others to maintain a positive perspective, believing that attitude influences physical health and outlook on life.
Watch Russ’s story to learn from him on:
How he turned his cancer diagnosis into a mission of hope and inspiration.
How his unwavering faith and positivity helped him face his emotional and physical battles.
The innovative treatments that shaped his path.
His adaptation to the challenges of diabetes amidst his ongoing cancer experience.
How his community and faith have grounded him and helped him advance his mission to inform and inspire.
Name:
Russ H.
Diagnosis:
Melanoma
Staging:
Stage 4
Age at Diagnosis:
58
Symptom:
Appearance of what appeared to be a wart at the bottom of his foot
Treatments:
Radiation
Surgery
Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
