Author: Katrina Villareal

40 Years Living with an MPN: Jeremy’s PV and Myelofibrosis Story

Post author By Katrina Villareal
Post date September 18, 2025
No Comments on 40 Years Living with an MPN: Jeremy’s PV and Myelofibrosis Story

September 18, 2025

40 Years Living with an MPN: Jeremy’s PV and Myelofibrosis Story

Living with polycythemia vera (PV) has been a lifelong balancing act, and both Jeremy Smith and MPN expert, Dr. Angela Fleischman from the UC Irvine Chao Family Comprehensive Cancer Center bring wisdom, encouragement, and practical advice to the conversation.

Interviewed by: Taylor Scheib and Stephanie Chuang
Edited by: Katrina Villareal and Jeff Forslund

Jeremy has been living with an MPN for nearly four decades, initially being diagnosed with polycythemia vera (PV) that progressed to myelofibrosis in 2012, and he is refreshingly honest about the emotional and physical challenges he’s faced along the way. His diagnosis started with what felt like a panic attack, leading to an emergency room (ER) visit and eventually a bone marrow biopsy. Like many people, he found the process confusing and overwhelming.

Today, Jeremy takes charge of his care. He calls his medical team his “board of advisors,” reminding other patients that they are the ones who ultimately make the decisions. He’s tried multiple treatments and is currently taking interferon alpha as part of a combination therapy, which works well for him despite not being a standard regimen. He stresses the value of second opinions, open communication with doctors, and writing down questions before appointments. Jeremy also highlights exercise as one of the most powerful tools he’s found for immune health and inflammation control. He even transitioned from mountain and road biking to riding a stationary bike in order to protect both his spleen and his ability to still ride.

Dr. Angela Fleischman, MD, PhD, a hematologist and passionate MPN researcher with the UC Irvine Chao Family Comprehensive Cancer Center, adds an equally empowering perspective. She focuses on patient-centered care, encouraging people with MPNs to understand their disease and actively participate in decisions. She believes that knowledge is a powerful tool and that patients should feel comfortable asking questions, seeking second opinions, and exploring clinical trials.

Together, Jeremy and Dr. Fleischman paint a hopeful picture. While polycythemia vera is complex and often unpredictable, staying engaged in care, building a team you trust, and prioritizing overall health can make a huge difference. Jeremy’s parting advice says it all: take notes, ask questions, connect with others, and embrace life one moment at a time.

Key Story Takeaways

Jeremy’s story: Living with polycythemia vera (PV) for nearly 40 years, Jeremy shares how his disease progressed to myelofibrosis (MF) and how he manages treatment, side effects, and mental health.
Treatment insights: He uses interferon alpha in combination with another drug (two separate medicines) while emphasizing second opinions, symptom tracking, and exercise to reduce inflammation.
Expert perspective: Dr. Angela G. Fleischman, MD, PhD of UC Irvine explains PV biology, the role of interferon alpha, and how patient-doctor partnerships and personalized care improve day-to-day living.
Empowerment message: Stay informed, build a trusted medical team, keep notes and questions ready, and live fully—sip life—despite PV or MF.

Name: Jeremy S.
Age at Diagnosis:
- 33
Diagnoses:
- Polycythemia Vera (PV) that progressed to Myelofibrosis (MF) in 2012
- Chronic Lymphocytic Leukemia (CLL)
Treatment:
- Interferon alpha in combination with another therapy

Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents

Jeremy’s PV Story
Dr. Angela Fleischman

Never give up. There will be highs and lows, but you have to keep going and enjoy every moment. Sip life — embrace it and never give up.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Jeremy’s PV Story

Introducing Jeremy

My Polycythemia Vera and Myelofibrosis Patient Experience

Jeremy Smith: I was diagnosed with polycythemia vera in 1989, but they think I had it for five to eight years before that. September 2025 marks the beginning of my 37th year with polycythemia vera (PV). In 2012, [it progressed] to myelofibrosis (MF). I also have chronic lymphocytic leukemia (CLL).

How My Friends Would Describe Me

Jeremy: It depends on whom [you] ask. I would say determined. Crazy, maybe. Most people did not expect me to be around this long, including my doctors. [How] we see ourselves is often very different than how others see us and, of course, they bring their own baggage to their perspective. My best friend [is] my brother, who probably has the best understanding of me since we shared a room as kids. I would also say creative; I have done a lot of creative things in my life.

You have to look at the big picture… Every option should be considered.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

First Symptoms and PV Diagnosis

Jeremy: Like most patients, I was originally seen by a local hematologist and my primary care physician. My symptoms masqueraded as anxiety because my hemoglobin was so high. I had what I thought was a panic attack while driving home, [so I] called 911 and ended up in the emergency room. Ultimately, a bone marrow biopsy confirmed polycythemia vera. The process was confusing and emotionally overwhelming.

Navigating Treatment Decisions

Jeremy: You have to look at the big picture. Combo drugs, often referred to as cocktails, can be the most effective way forward for many patients. We do not know what drug will work best for each person until [they] try it. I am currently on interferon alpha and [another treatment] together, which has been very effective for me, even though it was not previously tested. Every option should be considered.

You must be your own advocate and write down your questions before you go to the doctor so that you’re well prepared.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Adapting to New Specialists and Building Trust

Jeremy: Losing a trusted doctor was devastating. Dr. Schreier was very old school, but Dr. David Iberri, who took my case at Stanford, was open, younger, and more willing to embrace new treatments. Building trust takes time, especially when your numbers fluctuate. I manage my care directly, just as I would a business, and have assembled a team of doctors who consult with each other on my medical plan.

Living Well with an MPN

Dealing with a Chronic Cancer and Aging

Jeremy: It has been a long journey. The last five to six years have been the hardest, as my body [has] begun to break down. The longer you live with a myeloproliferative neoplasm (MPN), the more your body gives in structurally.

Twenty years ago, we did not know the impact of anemia on myelofibrosis patients, but now we know cardiovascular issues are a major risk — and I have cardiovascular issues now. The disease is complicated, but one thing doctors do not discuss is how grueling the mental journey is. It is taxing. I spend more time with my doctors than with anyone else.

I have established what I call my board of advisors — my doctors. I do not treat them like doctors; they are advisors. I make all the decisions.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Building a Medical Team: The Board of Advisors Approach

Jeremy: Because the disease is so complicated and manifests in many ways, you need to be prepared. I have established what I call my board of advisors — my doctors. I do not treat them like doctors; they are advisors. I make all the decisions.

I have four hematologists and oncologists, plus a cardiologist and other specialists. They all work together and I have learned to manage the egos involved. Getting everyone on a call can be [challenging], but it works well.

The Importance of Exercise in Managing MPN

Jeremy: Exercise is a big part of my life. Back in 2000, I was riding 30–75 miles on a bike. Now, because my spleen makes all my red blood cells and my doctors are worried about damaging it, I can only ride a stationary bike.

Exercise is truly the only proven method for improving your immune system and reducing inflammation, which is key to slowing disease progression. In the late 80s, there was no data that exercise or diet would help PV, but now we know it improves fatigue and overall health.

Exercise is truly the only proven method for improving your immune system — and reducing inflammation is key to slowing down disease progression.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient

Message of Hope

Jeremy: Never give up. There will be highs and lows, but you have to keep going and enjoy every moment. Sip life — embrace it and never give up. You’re going to die anyway, so what do you have to lose?

Seek out support groups, such as [my] Facebook group MPNLIFE, and gather multiple medical opinions. Be your own advocate. Write down your questions and, if possible, take someone to appointments to help with notes.

I value the opportunity to get to know my patients over the years or even decades… We should be partners in the patient’s health journey, and I intend to accompany them throughout it.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Dr. Angela Fleischman

Introducing Dr. Angela Fleischman

Stephanie Chuang, The Patient Story: Would you [please] share your motivation for working with PV patients and anything in your background that helps you relate to them?

Dr. Angela Fleischman: I have been dedicated to caring for patients with myeloproliferative neoplasms (MPNs) from the very beginning of my medical career. My enthusiasm and dedication continue to grow daily, even after being in this field for quite a long time. What truly attracts me to this particular condition is multifaceted. Number one, I value the opportunity to get to know my patients over the years or even decades.

Number two, I appreciate that patients can do a lot for themselves. Self-management and self-empowerment are very attractive concepts to me as a physician. My goal is to guide a patient to maximize their health, rather than simply prescribe a medication. We should be partners in the patient’s health journey and I intend to accompany them throughout it.

Polycythemia Vera Symptoms

Common First PV Symptoms

Stephanie: What are the common profiles of patients with PV in terms of age or symptoms when they present to you?

Dr. Fleischman: Every patient is unique, but common themes do exist among PV patients. They can present at different stages in life; while PV tends to present in older adults, there are also young people diagnosed with polycythemia vera. We should not categorize patients strictly by age or type.

In retrospect, many PV patients have experienced itching for a long time without knowing its cause; they often tried different soaps or treatments without relief. If there is one distinctive symptom, it is likely chronic itching. Fatigue is common among PV patients, but it is also prevalent in the general population, making it less useful for distinguishing PV. Itching is truly the main unifying symptom.

The exact molecules driving PV-related itching are not well defined.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Understanding PV-Related Itching

Stephanie: How is PV-related itching different from other dermatologic conditions, like eczema?

Dr. Fleischman: The feature that distinguishes PV-related itching is its aggressiveness after a hot shower. If you hear a patient describe sudden itching induced by heat or water, that is very common in PV. Patients often say, “I feel like I’m itching from inside; my whole body is itching from inside,” which sets it apart from localized itching, such as an itchy foot. That is not typical of PV.

The Science Behind PV Itching

Stephanie: Is there a simple way to explain the science behind why PV patients experience itching?

Dr. Fleischman: It most likely relates to increased red cell mass. When patients undergo phlebotomy to lower their hematocrit, the itching often resolves. It also likely involves abnormal cytokines or inflammatory proteins produced by immune cells, although the exact molecules driving PV-related itching are not well defined.

While these are characteristic abnormalities in polycythemia vera, having a high hemoglobin or hematocrit alone does not mean a person has PV.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

How PV Patients Get Diagnosed

Stephanie: How do PV patients get diagnosed? What do they notice and what leads to diagnosis?

Dr. Fleischman: Diagnosis occurs in many ways. Often, a patient visits their primary care physician for itching or another issue, or during a routine checkup. Abnormal labs — such as high hemoglobin, hematocrit, white count, and platelet count — raise suspicion. While these are characteristic abnormalities in polycythemia vera, having a high hemoglobin or hematocrit alone does not mean a person has PV. Other, more common reasons exist for high levels, such as sleep apnea, smoking, or certain medications like testosterone. It is important to emphasize that high hematocrit does not equal PV.

Initial Patient Conversations

Stephanie: How do you like to approach your first conversation with a new PV patient?

Dr. Fleischman: I want to understand the patient’s personal philosophy about their health and what they would like to achieve with their PV care moving forward. Physicians should not assume their values are the same as those of the patient. People are at different stages in their lives and may have different goals.

For example, an 18-year-old will have different health goals than an 80-year-old. I always ask, “What would you like to accomplish with your treatment?” PV can be managed in many ways. There is no absolute right or wrong approach; it should be personalized. Once I understand the patient’s goals, I provide all available information and then they select the best approach for themselves.

I always ask, ‘What would you like to accomplish with your treatment?’ PV can be managed in many ways. There is no absolute right or wrong approach; it should be personalized.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Discussing Treatment Options and Patient Preferences

Stephanie: How do you discuss research and treatment options and listen for cues about patient priorities?

Dr. Fleischman: There are common themes among PV patients. Some, especially younger patients, are hesitant about medications and prefer a medication-free approach, often relying on phlebotomy and aspirin, if appropriate. Others want to be proactive, addressing the root cause and aiming to reduce their JAK2 percentage; interferon alpha is frequently discussed for this approach.

A third type of patient simply wants an easy regimen without concern for underlying issues; for them, hydroxyurea might be most appropriate. The treatment style should fit the patient’s preferences.

Latest Advances and Disease Modification Strategies

Stephanie: How do you introduce the latest advances to proactive patients, especially regarding disease modification?

Dr. Fleischman: In polycythemia vera, if the patient is interested in data and disease modification — changing their disease trajectory and possibly eliminating JAK2 mutant cells — the conversation centers on interferon alpha (IFNα). Many patients arrive specifically to discuss interferon alpha, having researched it themselves.

Not every symptom is caused by PV. Over-attributing symptoms risks overlooking other health issues.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Simplifying the Biology: Why Do PV Patients Have Too Many Red Blood Cells?

Stephanie: Can you summarize why PV patients overproduce blood cells?

Dr. Fleischman: Our bodies need to maintain equilibrium in blood cell production. Hormones signal our bone marrow when to produce more red blood cells or platelets, and this signaling runs through JAK2. A JAK2 mutation, seen in almost all PV cases, causes blood stem cells to always receive the signal to produce more blood cells, leading to excess red cells, platelets, and white cells.

Tracking Symptoms Effectively in PV

Stephanie: How do you help patients track symptoms and understand their importance?

Dr. Fleischman: Symptoms are important and associated with PV, but not every symptom is caused by PV; over-attributing symptoms risks overlooking other health issues. For patients undergoing phlebotomy, it is crucial to track whether symptoms correlate with their blood counts or treatments.

For example, do symptoms worsen before phlebotomy and improve after? Did symptoms resolve when platelet counts dropped on hydroxyurea? Coupling objective data (like blood counts) with symptoms helps clarify what is truly related to PV.

Document symptoms in a journal or other format, noting onset, frequency, and patterns… Even more important is communicating the reason for sharing a symptom.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Communicating with PV Specialists: Tips for Patients and Caregivers

Stephanie: What guidance do you have for patients and caregivers on communicating with their PV doctors?

Dr. Fleischman: It is valuable to document symptoms in a journal or other format, noting onset, frequency, and patterns, such as whether something happens every Friday or daily for a month. Even more important is communicating the reason for sharing a symptom. Are you reporting it because you want it resolved or simply to inform your doctor? This distinction helps me know how I can best support my patients.

Hopes for the Future: The PV Treatment Landscape

Stephanie: What are your hopes for PV patients in the coming years? What is changing?

Dr. Fleischman: The landscape is changing across several aspects: symptom management, blood count control, blood clotting, and tackling the underlying disease. New treatments target different areas, but for the core disease, interferon alpha remains our best option, as it can bring about molecular remission in some patients.

On the horizon, hepcidin agents (medications that increase hepcidin) will help prevent overproduction of red blood cells but may not address the disease’s root cause. It is important to clarify what “treatment” means, as it can refer to very different approaches. Ultimately, PV is a chronic condition and patients should be empowered to take the driver’s seat in managing their care.

Ultimately, PV is a chronic condition and patients should be empowered to take the driver’s seat in managing their care.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher
UC Irvine Chao Family Comprehensive Cancer Center

Thank you for sharing your story, Jeremy!

Inspired by Jeremy's story?

Share your story, too!

Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Navigating Thyroid Cancer AND Chronic Myeloid Leukemia (CML): Jannette’s Story

Post author By Katrina Villareal
Post date September 15, 2025
No Comments on Navigating Thyroid Cancer AND Chronic Myeloid Leukemia (CML): Jannette’s Story

September 15, 2025

Navigating Thyroid Cancer AND Chronic Myeloid Leukemia (CML): Jannette’s Story

Imagine recovering from thyroid cancer treatment and the road back to “normal,” when you get a second diagnosis, this time a rare blood cancer known as chronic myeloid leukemia, or CML. Jannette’s story is one of resilience and finding strength in the face of difficult circumstances.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

She was first diagnosed with thyroid cancer in 2010 after experiencing recurring sore throat, trouble swallowing, and swelling. At first, she thought it was just strep throat, but when the symptoms persisted, she trusted her instincts and pushed for more testing. That decision led to her diagnosis and eventually two surgeries to remove her thyroid, along with chemotherapy and radiation treatment.

Just when she began to regain her strength, life shifted again. In 2014, Jannette started experiencing fatigue, nausea, vomiting, and even noticing blood during bowel movements. Because of her personal and family history of cancer, her doctor referred her to an oncologist. After a bone marrow biopsy and blood work, she received another life-altering diagnosis: chronic myeloid leukemia (CML).

Hearing the words a second time felt overwhelming, leading Jannette to break down. Still, she moved forward with treatment. She began taking chemotherapy in pill form, which was initially difficult to manage since swallowing pills was already a challenge due to her thyroid surgery. Eventually, her doctor found a medication that was easier to take, and today, her leukemia is in remission. She continues to be monitored closely and takes daily medication.

Jannette also lives with another challenge: she’s an amputee, having lost her left arm and leg as a child in a traumatic accident. That reality has shaped her strength, but it has also made managing cancer more complex. She is honest about the fear of recurrence, the difficulty of acceptance, and the exhaustion of living with a chronic condition.

What stands out most in Jannette’s story is her advocacy for others. She emphasizes the importance of listening to your body, seeking medical help when something feels off, and not staying silent when the emotional weight becomes too heavy. She encourages reaching out for support from social workers, counselors, or trusted loved ones, because isolation can make the experience much harder.

Her authenticity, vulnerability, and determination remind us that survivorship is about more than treatments and scans. It’s about permitting yourself to seek help, embracing support systems, and holding onto hope even in the most uncertain times.

Watch Jannette’s story to find out more:

How recurring sore throat led to her thyroid cancer diagnosis
What new symptoms revealed her chronic myeloid leukemia
How daily oral chemotherapy impacts her life today
Why living as an amputee shaped her resilience and perspective
The advice she gives others about seeking support and not staying silent

Scroll down to read the transcript of Jannette’s interview.

Name: Jannette J.
Age at Diagnosis:
- 29
Diagnoses:
- Thyroid Cancer (2010)
- Chronic Myeloid Leukemia (2014)
Symptoms:
Thyroid Cancer
- Recurring sore throat
- Worsening throat pain
- Difficulty swallowing
- Swelling in the neck
Chronic Myeloid Leukemia
- Fatigue
- Nausea
- Vomiting
- Blood with bowel movements
Treatments:
- Surgery: thyroidectomy
- Radiation therapy
- Chemotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents

Hi, I’m Jannette
My symptoms got consistent over time
The moment everything changed
My thyroid cancer treatment plan
I was diagnosed with a separate cancer
I now take daily chemo
I’ve had to face many challenges in my lifetime
Accepting my new reality has been difficult
My advice to others

Hi, I’m Jannette

I was diagnosed with two different types of cancer. The first cancer I was diagnosed with was thyroid cancer in 2010 and then I was diagnosed with chronic myeloid leukemia (CML) in 2014.

Never think that you can’t get cancer because you can. If you ever feel like something is wrong, please get checked out.

My symptoms got consistent over time

It usually started off with a sore throat. Then I noticed as time went on, the sore throats kept getting worse and worse. I would go to the ER each time and they would tell me I have strep throat, which I got a couple of times back to back. Then I noticed I started having an issue with swallowing and some swelling. That’s when I figured something was wrong, so I consulted my primary care doctor, who referred me to the ear, nose, and throat doctor (otolaryngologist). The doctor did some tests and we found out I had thyroid cancer.

The moment everything changed

I was shocked because I never would have thought that I would be told that I have cancer. I never thought that it could never happen to me because it can, but I was surprised because I have never had symptoms of cancer.

My thyroid cancer treatment plan

I did two rounds of chemotherapy. I had to quarantine. I couldn’t be around family and friends for a while, so that in itself was a whole new experience.

The side effects I experienced from that included feeling a little funny, like I was weak a little bit, but I don’t know if that was from the radiation. I kept feeling tired and a little bit down on energy. But after a while, I was okay. Once the radiation was done, I felt better.

I also ended up having two separate surgeries to have my thyroid removed. I’m not sure about the proper name for it, but they made an incision and started with the right side first and removed that side. They found large nodules or tumors. Then they waited a little while and did the left side. They had to put in a drain, which I had to wear. It was very painful. I couldn’t eat for a while.

I was diagnosed with a separate cancer

Fast forward to 2014, after the whole experience with thyroid cancer, I started to feel better again. I started gaining my energy back. Then seemingly out of nowhere, different symptoms started coming up. I started feeling tired all the time. Then I remember a couple of times, I started feeling nauseous and wanting to vomit. The nausea lasted for a little while. Then I started having days when I would vomit.

When I went to the bathroom to have a bowel movement, I noticed blood a couple of times when I would wipe. I told my doctor and she referred me to an oncologist. I said, “Isn’t that a cancer doctor?” She said, “Yes, based on the history of cancer in your family.” My grandma, who is my dad’s mom, and then an aunt, who is one of my dad’s sisters had breast cancer and they both passed away, sadly.

She scheduled an appointment and when I saw the oncologist, they got a sample of my bone marrow and did some blood work. We found out that I had leukemia.

That one was a little more difficult. I broke down and cried because for some reason, and I don’t know why, I felt like that one was a little more serious. I was very upset, especially since I had already gone through cancer once and now I had to go through it all over again.

I now take daily chemo

The doctor wanted to see me twice a month, so I was guessing it was pretty bad. He ordered a medicine right away for me to start. The first medication I was on was chemotherapy in the form of a pill, but I was having issues with that. Because of my thyroid, I can’t swallow pills, so I had to empty the pill into applesauce. I had to take it three times a day, so that was a lot to manage.

After a while, he switched me to a different one, which is what I’m currently on. It’s a lot easier to manage because I only take it once a day and it’s a little smaller. Sometimes I feel a little nauseated here and there, but I like it better because I don’t have to try to remember to take it up to three times a day. It’s a lot easier to manage. I’m not sure why my doctor didn’t want me to have chemo intravenously.

I’m being monitored. I still have to take the medication. He said that right now, he doesn’t feel like I should stop. I’m doing great. My cancer is in remission. I see him every six months, so I’m doing pretty good at this point.

I’ve had to face many challenges in my lifetime

Cancer in itself is a challenge, but the worst part was having it a second time because I had been through it before. I also have a disability. When I was a child, I was in a tragic, traumatic accident, so I’m also an amputee. I lost my left arm and leg. I was hit by a train and dragged 75 feet down the tracks. It happened in 1992. I lost my left arm below the elbow and my left leg below the knee. It’s hard, especially when you have a chronic or terminal illness and then you have a disability to deal with.

Accepting my new reality has been difficult

Even though I’m in remission, the doctor’s confirmed that I’m going to have to be on medication for the rest of my life. I also have the fear of what if. What if it comes back? There’s a part of me that I’ll never get back because of my childhood accident. I lost my arm and leg. I had to go through a lot with that experience. I had to go through occupational therapy to relearn how to do the simplest things, like eat with a fork, hold a spoon, and get dressed.

My advice to others

If you are ever diagnosed with cancer or any disease, whether it’s chronic or terminal, my advice is not to give up. I know it may be hard. There are days when you may get tired of going through this, but don’t give up.

If you feel it get to the point where it’s too much and it’s overwhelming, contact someone and get help. Contact your hospital social worker and tell them you need to talk to someone. They have resources. Maybe you need to talk to a counselor. Don’t sit in silence because if you do, that can most times lead you into a dark place. When I first found out, I was in a very dark place and I shut myself off from people. I didn’t want to talk or be around anybody. Please don’t let it get to that point.

Thank you for sharing your story, Jannette!

Inspired by Jannette's story?

Share your story, too!

More Chronic Myeloid Leukemia (CML) Stories

Michele T., Chronic Myeloid Leukemia (CML)

Symptoms: Trouble breathing, rash, bruising

Treatments: Sprycel and Bosulif

Mark K., Chronic Myeloid Leukemia (CML)

Symptoms: Weight loss, low energy, night sweats, enlarged spleen, elevated WBC count, frequent need to urinate

Treatment: Tyrosine kinase inhibitors (TKIs)

Chemotherapy Hodgkin Lymphoma Metastatic Patient Stories Treatments

How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

Post author By Katrina Villareal
Post date September 8, 2025
No Comments on How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

September 8, 2025

How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

When Amina was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021, her life as a 21-year-old dancer in New York City turned upside down. She had been training in school while navigating the pandemic when her health began to slip in confusing ways. At first, she thought it was stress, COVID, or exhaustion. But when she couldn’t climb stairs without feeling faint, woke up drenched in night sweats, and lost her appetite, she knew something was wrong.

Interviewed by: Carly Knowlton
Edited by: Katrina Villareal

Unfortunately, getting answers wasn’t easy. Without a primary care doctor and stuck between pediatric and adult care systems, her diagnosis was delayed for months. She had to advocate fiercely for herself, even paying out of pocket for scans when appointments kept falling through.

Eventually, an MRI and biopsy confirmed what doctors had been circling around: Hodgkin lymphoma. Hearing the official words was scary but also validating. For months, Amina had felt invisible in the healthcare system. Finally, someone acknowledged her pain and gave her a path forward. Her oncologist at Johns Hopkins immediately recognized the seriousness of her case, which gave her a sense of trust and relief.

Amina’s treatment lasted seven months and included intense chemotherapy. While she was grateful to receive care as an outpatient, the physical and emotional toll was heavy. She lost her hair, felt disconnected from her body as a dancer, and struggled with neuropathy in her feet. She also wrestled with body image challenges while trying to keep up with the demanding culture of dance. Still, she leaned into small joys, like having ice cream when nothing else tasted good, and gave herself space to rest when she could.

Being so young in a cancer ward was isolating, but Amina refused to stay silent. She began sharing her story on social media, connecting with other adolescents and young adults (AYA) navigating cancer and health inequities. Many reached out, saying they felt like they slipped through the cracks. What started as venting grew into a form of advocacy, helping others feel seen.

Amina’s family, friends, and community were her anchors. Friends showed up with flowers, trips, and support; her parents carried her through appointments and recovery. Later, when her father was diagnosed with acute myeloid leukemia, she was able to use her experience to help him access care quickly.

Now in remission, Amina embraces what she calls “thrivership” — living with intention, protecting her energy, and finding happiness wherever she can. She wants other young people with cancer to know that life doesn’t have to follow a strict timeline. Progress may look different than planned, but with patience, connection, and self-advocacy, it’s still possible to create a fulfilling and beautiful life.

Watch Amina’s video or read the interview transcript below to find out more about her story:

From dance rehearsals to chemo infusions, Amina shares the raw reality of being young with cancer
Why social media became her lifeline during treatment
The surprising way her cancer diagnosis helped her father
How survivorship reshaped her priorities and sense of joy

Name: Amina V.
Age at Diagnosis:
- 21
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4B
Symptoms:
- Severe fatigue
- Shortness of breath
- Night sweats
- Bloating and stomach distension after eating
- Abdominal pain
- Little to no appetite
- High fever
- Lump in the pelvic area
Treatment:
- Chemotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents

Hi, I’m Amina
When something first felt off
There was a big delay in my diagnosis
How I found my care team
When I heard the words “you have cancer”
What my treatment plan looked like
Managing the side effects of chemotherapy
How I navigated having cancer so young
My support system helped get me through the hard days
What survivorship means to me
What I want others to know
How often I’m monitored
My dad was diagnosed with cancer after me

Hi, I’m Amina

I was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021.

I’m originally from Washington, D.C., but I live in New York City now. I’m a professional dancer, so that’s my 9 to 5. When I’m not performing, I also work as an educator and rehearsal director for young artists and teaching dance. Dance is my number one love and my number one passion, and it’s also what I do for fun.

My friends would say that I’m a bubbly person. I’m definitely very friendly, and when I’m out with my friends, I’m very outgoing. I like to have a good time, try new things, and new experiences. Above all else, I always like to show up for my friends and the people I love and who love me. I believe in loyalty and having each other’s back.

There’s a special photo that stands out to me right now, which is a picture of me and my dad at Light the Night, which is an event by The Leukemia & Lymphoma Society, now called Blood Cancer United. Then Leukemia & Lymphoma Society would hold an event for cancer survivors and honorees, like advocates in the cancer community, and I was there with my dad and they were honoring me. But at that time, he was also about to find out that he had acute myeloid leukemia, so it was a moment that symbolizes me finishing my journey and him starting his. Looking back, it’s crazy and special.

When something first felt off

I first found out I was sick in my final semester of training. I went to The Ailey School for four years. It’s conservatory-style training, pretty much at the highest degree, preparing you for a professional career as a performer. It was also during the COVID-19 pandemic, in the fall of 2020, and everything was messed up. We were in masks. Everyone thinks that a cold could be COVID. I had been feeling off for a while, but I chalked it up to flu season. It’s COVID. I have to quarantine. But then when I went back to school and my regular routine of five classes a day, I found that I was super fatigued at the end of the day. It wasn’t the regular kind of tiredness. I couldn’t go up one flight of stairs. And in New York City, you’re walking everywhere all the time. I have to walk up the stairs in my apartment building and walk up the stairs to go to the subway. Tthere were some days where I felt like I was going to pass out. That was red flag number one.

The second red flag was night sweats. I would wake up in the middle of the night and my clothes would be drenched and my bedsheets were wet. I would always joke and say it was menopause, but I was 21, so this was not menopause. Why am I getting hot flashes in the middle of the night?

The third red flag was I had little to no appetite, and whenever I did eat, my stomach would swell and distend, so much. I would have cereal in the morning and you would think I went to an all-you-can-eat buffet. Then I would have to go to class and be in a leotard and tights with a bloated stomach. It felt awful.

I first noticed these symptoms in December 2020. I got it checked out in 2021, around early January and February. But they continued until my treatment started, which I didn’t start until August.

There was a big delay in my diagnosis

There was a lot of trial and error. I didn’t have a primary care physician. I was there for school, so I relied on minute clinics. But the one doctor I had a good relationship with was my OB-GYN. I felt a lump in my pelvis, which I thought might be a cyst, so I went to her. She recommended getting an ultrasound and doing bloodwork, and that’s when we found that my blood levels were off the charts. She passed me along and pretty much said, “This is out of my jurisdiction. However, I highly recommend you get an MRI and take this to a hematologist.” That then led to months and months of trying to get appointments because this was in 2021, so getting a doctor’s appointment was difficult in the city.

I learned that if you’re not 22, you’re still considered pediatric. I was making appointments at grown-up doctors’ places because I thought I was a grown up, and then they would get canceled because my insurance was saying I was still a kid, so I needed to go to the children’s hospital. I think that led to a lot of delays in diagnosis because I wasn’t officially diagnosed until July.

I ended up having to take matters into my own hands and get an MRI at an out-of-network clinic, and that’s when they found the inflamed lymph nodes. But from there, I had to wait another month or two for a biopsy appointment. In between that time, my symptoms got increasingly more aggressive. I ended up being hospitalized and that’s when they told me that I might have cancer.

My boyfriend was with me at that time. We were living together during this whole process. My parents had also been aware that I’d been sick and they’d seen the MRI results, which showed the inflamed lymph nodes. Everybody seemed to have a clue that I possibly had lymphoma, except for me, because I didn’t know what that was. Everyone was on high alert. I had a fever of 104℉ one night, so my partner took me to the emergency room.

I was stressed and afraid. However, it got to a point where it’s like, “Look. This is my last semester of school. I’m still dancing in a mask. We’re in boxes, social distancing. I either have to think about whether I want to finish strong so I could potentially get the job or take care of my health and set myself up for the long term.” That was the decision I ended up making. I would miss a lot of classes because I had to go to doctors appointments or I would try to be as transparent as possible with my teachers, sharing the information I have, and letting them know that I wasn’t at 100% and I don’t know why, but that I’m doing my best.

I’ll be honest, advocating for myself didn’t come easy to me. I was trying to do everything the right way, following the doctor’s orders, listening to my parents, and waiting. But when, time and time again, doing things by the book was not working in my best interest, that’s when I said, “I need to get this done. Where in this city can I get an appointment tomorrow? And if it costs a lot, then that’s just the price I have to pay, but I need to know something.” The waiting was driving me crazy.

I got treated in D.C. That came about because of all the hoops I had to jump through on my own in New York. I was young. My boyfriend was also young at the time, so it was a lot for us to manage on our own. My parents wanted me to move back home and get treated there so that they could help.

How I found my care team

It was a very fast-moving process because everything took so long that we tapped into our family and friends resources. I was very fortunate that my mom had a cousin who worked at Johns Hopkins and she helped with speeding along the process of getting an appointment and getting all of my pathology from New York passed along to the hospital in D.C. so that I can be seen and treated quicker.

When I met my oncologist, he was the first doctor who validated how I felt. They kept saying I might have lymphoma and the whole hesitancy to be transparent with me was that I was young, so they didn’t want to be negative or dampen the mood too soon without having all of the answers. I understand that perspective, but I felt like I was dying. For them to say that it might not be anything that serious sucked because what, was I going crazy? I knew I wasn’t. But he was the first one to look at me and say, “Yes, you are very sick. Yes, this is 100% lymphoma. We’re getting your pathology. However, you’re checking all the boxes and we need to get you started next week.”

I ended up trusting him 100% because he looked at me, did the exam, looked at my reports, and shared in my frustration. Even without the pathology to 100% confirm it, everything else lined up with a patient who has Hodgkin lymphoma. The outlier was how young, active, and healthy I was. Besides that, everything else made sense.

The fact that he shared that frustration and validated how I was feeling made me feel close to him and made me pretty much trust him with my life because that’s what you’re doing when you’re choosing an oncologist.

When I heard the words “you have cancer”

I was very emotional. It was a relief to have an answer. I remember having a little bit of jitters or goosebumps because it’s a tough reality to face. However, on the flip side, it was nice to have an answer to all the questions that I had swirling around in my head for months. I’m not immunocompromised. It isn’t COVID or the flu. This is exactly what it is and here’s how we’re going to treat it. Having that clarity helped me find peace, oddly enough. I know I was going into the hardest thing I was ever going to have to do in my life and that some people don’t even have to face thankfully, yet I felt calmer having that clarity.

What my treatment plan looked like

I had to do seven months of chemo. It was rough. Chemo sucks. It literally zaps you of any energy. However, in the beginning, I think after my third cycle, I was tired, but feeling better. It was the necessary evil that I had to go through in order to get cured. It’s just hard. Especially since the treatment plan that I had included a specific drug that causes bone pain and another drug that makes you lose all your hair, so it’s tough. I felt like I was losing parts of myself in a sense. I didn’t have any energy. I didn’t want to socialize with people. I wanted to be alone after my infusion days. I would get treatment once a week and then I would have a week to recover. On my off weeks, I felt a little better every time. Every off week, I was getting stronger and stronger and stronger. At the moment, it’s not fun at all, but then the results are worth it.

I was fortunate enough to be an outpatient. I would be in the hospital for a full workday, around 6 to 8 hours a day, and then my dad or my mom or whoever was there with me would take me home.

They gave me this body patch and it would administer medication at home as well.

Managing the side effects of chemotherapy

I developed neuropathy in my feet, which was a tough part of recovery, especially since I need them for my profession. After a few months, I was able to start dancing again. I was even ambitious enough to try and take classes every now and then while I was still getting treatment. It wasn’t at the level I was before I got sick — that took a lot of time — but I was fortunate enough to have a mentor who gave me a space to quite literally fumble around and reconfigure myself. I appreciate her for that because I think that allowed me to get to where I am today.

I didn’t like the way food tasted, which was a big one. I didn’t want to eat anything except Ben and Jerry’s ice cream. My parents would be so concerned, saying I couldn’t eat ice cream because it’s sugar. I said, “Mommy, I have blood cancer. It’s different. And the doctor says I need to put weight back on, so I should eat lots of ice cream.” That was the only thing that I could taste, something sweet

With the chemo, they gave antiviral medication and that made me very agitated. I appreciate my family for being patient with me during that time because I’m sure I was being a diva. Being on different medications puts you in a loopy state. There were a lot of people who visited and were with us in the house, and though I wanted to be social, at a certain point, I would get drained and shut off. Even after I finished, for a few months, I would find that still happening. It’s like this fog went over my brain. My eyes were glazed over and I completely checked out.

It was hard, honestly, because I felt like I had to fake it and make it seem like everything was okay. I didn’t have an explanation at that time as to why I felt awful or uncomfortable. As a young dancer, I was struggling with body dysmorphia. I had to stand for an hour and a half in front of the mirror and even though all I had was cereal for breakfast, I’m bloated and my clothes don’t fit right. I feel uncomfortable, but I still have to go through my day pretending like everything is okay. I have to show up and give the teacher energy.

There was even one moment when I did this photo shoot and the photographer was frustrated with me because I was very quiet and timid, and it was coming through in the photos; in reality, I was just exhausted. I felt tired and everything about being in that space was draining in the moment. It was tough because my job and what I was doing in school was so physical, so there’s no way to dial it back. I either have to push through and push myself to the limit, which often happens. That’s how I got hospitalized. Or I give up and I’m not good at giving up.

How I navigated having cancer so young

I was the only young person in the infusion ward. Whenever I would go, people always thought my dad was the patient, but he was bald by choice and I wasn’t, so that felt isolating

Beyond that, I had just finished school in New York and was building my own life. I just got my own apartment and then I had to leave it all behind and go back home. In a lot of ways, it felt like I was going back in time, like going back to square one. For a little bit, it did break my spirit. I felt defeated. I relied a lot on finding ways to entertain myself and fill my time. Being Gen Z and in my 20s, TikTok and Instagram were my coping mechanisms.

What I think was unique about me being a young person with cancer is I made the choice not to suffer in silence, so I told my friends about it and posted on social media about it. Through that, I was able to find a community of people going through similar experiences at my age. Even though they weren’t physically there with me, I found them online.

When I was in treatment, I was connecting with a lot of people who were asking about my experience and asking for advice for themselves or for loved ones. Even if they didn’t have cancer and were dealing with other health issues, they would ask, “How did you push through? The doctors keep telling you no or to come back when it was worse than it is now, instead of treating you.” By sharing my experience, it opened a can of worms on the fact that a lot of young people, regardless of a cancer diagnosis or not, have this issue where we slip through the cracks of the healthcare system, whether we’re still on our parents insurance or not, and we’re still treated as kids even though we handle all of our own finances and do things on our own. Or we just got booted off our parents’ insurance, so now what do we do?

Through that, I connected with a young woman who was in India getting treated for breast cancer. She was thanking me for sharing my story because she was 30 and she thought that she was the only person dealing with this. I also found a lot of other nonprofits for women like me or young people like me who feel isolated and connect them to each other. What I thought was just me venting turned into a form of advocacy, so when I saw that there was this interest and need for connection, I stuck with it and have met so many beautiful people because of it.

It’s important to have these conversations so that other young people can learn from my “mistakes.” I don’t want to say mistakes because I didn’t know, so by sharing, it hopefully gives others information so that they are more informed and knowledgeable, and feel empowered to speak up for themselves and not take things in blindly.

The hardest thing was accepting that everything was going to change. Not just biologically, but even around me, things were going to change, and a lot of those things would be permanent. My relationships with people, with friends whom I had in New York, and with my community would shift — some for the better, some not so much. I also felt like the world was moving on without me, which was a scary feeling. I needed to focus on getting better, but also, what does life look like outside of this? In that moment, the most frightening thing was the unknown and the change.

I was a little lucky to have had family members who had battled cancer in the past, even though it was in a different form. I have a cousin who is a breast cancer survivor and took her experience of being diagnosed in her 30s and turned it into advocacy, so I had her as a role model. This is hard. Everything is going to change. However, you will come through fortified and stronger. In the moment, it’s hard to believe when people tell you good things and they give you advice. You want to take it all in, but there’s a little voice in your head that says, “I don’t know.” Having her guidance definitely helped a lot.

I had to have trust because in that instance, there’s nothing I could control. My body literally woke up one day and said, “We’re going to shake things up,” and there was nothing I could do about it. Once that switch is flipped, I have to take the necessary steps to fight. I know sometimes that can be tough for people, but I’m comfortable with the fact that I had to battle cancer because it’s literally a war inside my body. I either make the choice to take steps against it or not. I feel like you have to fight against it, not just with how you treat it, but also with your mindset and your mentality. Hope and positivity and a little bit of delulu were all I had.

The sky isn’t even the limit anymore because I’ve been faced with my own mortality. I thought that my life was going to be cut short at 20-something. I’m 26 now and have a whole lifetime ahead of me, so I’m going to do everything I possibly can.

My support system helped get me through the hard days

I have an amazing family that came together to support me during this time, even our community in DC showed up, like my parents’ friends who supported them. I think it’s important for caregivers to also receive support. When I don’t have the energy to greet people, they were still there for my mom and my dad, which made me happy because they’re struggling with this, too. Even though I’m the one who’s actually receiving the medication, they are invested emotionally and financially, and sacrificing their time to be there for me, so I’m glad that they also received support.

Most importantly, I saw who my friends were. Being in New York, there are millions and millions of people here. I like to talk to people, make friends, and hang out. I have friends who took me to a resort while waiting for my pathology report. We had a vacation planned and I said I couldn’t go because I had cancer. She asked, “What are you doing during the week while we’re gone?” I told her I was going to cry in bed at home. She said, “No, we’re going to go,” and she took me to the Dominican Republic. The week after, I had to go to D.C. I had two other friends who would send flowers to my parents’ house and who drove from New York to visit me. It showed me, even when I can’t be there for them the way I want to, that they’re still there for me and it was so beautiful.

What survivorship means to me

Survivorship, or thrivership as I like to say, honestly looks like finding my happy. I try to find happiness and joy in any scenario, living and loving life to the fullest, not putting any limitations on myself, taking care of my health physically, mentally, and emotionally, and protecting my energy.

I found that I don’t need to please people. I don’t need to overextend myself. I don’t need to do things that I don’t want to do or that don’t serve me. Surviving cancer taught me that. A lot of people say, “Wow. I feel like you’ve grown so much.” I just got a reality check. I got a true sense of what matters and how I want to spend my time on this earth.

What I want others to know

Even when it’s hard, it does get better. You don’t necessarily have to rely on things outside of yourself to make it better. Finding what brings you joy and calm is what’s most important, even when you’re going through the hardest or scariest time of your life.

Specifically for AYA cancer patients or young people in general, setting this deadline or checklist for yourself of when and how things need to be accomplished is hindering you from going for it. I had a set plan. I was going to go to this school, graduate, get into this company, and complete these things by this time. When it doesn’t happen, you feel defeated. You feel like you’ve lost, when in reality, it could just be a few more steps away and you just have to keep going. In the arts industry, but also in life in general, I feel like we’re all in a queue. You either decide to stay in the line and see it through, or you get out right before the thing you’ve been dreaming of is about to happen. Youth is a blessing, but we also don’t need to accomplish everything right away. If we stick to it, find our happiness, and keep fighting, then you will achieve everything you put your energy into.

How often I’m monitored

I was being monitored every other month and then every three months. Now it’s every six months. Everything’s been good so far. My doctor has been conservative with the checkups because I’m not doing it with a PET scan, which I think is the traditional way. Because of how advanced my cancer was, I didn’t have the luxury of time to do any fertility preservation, so he wants to limit my exposure to radiation as much as possible.

My dad was diagnosed with cancer after me

It was shortly after I had finished chemo. He started experiencing symptoms and then he was diagnosed almost exactly a year after I finished.

He chalked it up to him getting older. I went through all the hardship I had to go through to help him. AML in your 60s could be a death sentence. Thankfully, there has been a lot of development and research into it, so that it’s treatable now. I can’t imagine what it would have been like if he had to jump through six months of hoops like I did.

In our case, he called me and told me what was going on, asking my thoughts on it, and sharing his experience. I texted my doctor and asked, “Can I send you my dad’s charts? Because it looks scarily similar to what I had. Can he come and see you?” He was able to go the following week.

Some people say, “I would be so upset. How can you stay so positive when all this is happening back to back to back?” I took it as what I went through was not in vain because it’s literally helping my father right now get the treatment he needs and what he deserves. Now he’s still here and in remission. Being in remission and being a survivor doesn’t mean everything’s all rainbows and sunshine, but we both made it through, so for that, I’m grateful.

Thank you for sharing your story, Amina!

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Cheyenne’s Stage 3B Melanoma Taught Her the Power of Self-Advocacy

Post author By Katrina Villareal
Post date September 5, 2025
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September 5, 2025

Cheyenne’s Stage 3B Melanoma Taught Her the Power of Self-Advocacy

When Cheyenne was diagnosed with stage 3B melanoma in December 2024, everything in her life shifted. At first, doctors thought it was stage 2, but after surgery in January, the diagnosis became clearer. As a photographer and storyteller, she’s spent decades documenting the world around her, but suddenly she had to turn that lens inward and focus on her own health.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Her first warning sign was a mole on her back that itched. Even though her gut told her something was wrong, the first doctor told her it was cosmetic. Thankfully, a physician assistant took her concerns seriously and ordered a biopsy. That persistence saved her life. From that moment on, Cheyenne learned the importance of advocating for oneself and trusting one’s intuition. She emphasizes that when something doesn’t feel right, asking questions is essential.

After surgery revealed cancer in her lymph nodes, she was officially diagnosed with stage 3B melanoma. She describes the wide local excision as far more invasive than she expected. Recovery was rough, but she leaned on her husband, friends, and a strong medical team. Even though she feared asking for a second opinion, she eventually welcomed it and found reassurance knowing she had access to comprehensive care.

Immunotherapy became her next step, but it hasn’t been easy. Side effects like colitis, thyroid problems, and adrenal issues forced her to pause treatment. Despite setbacks, she has shifted her focus toward what she can control, by supporting her body with meditation, yoga, organic foods, and daily juicing. Instead of filling every day with endless work and projects, she’s learning how to slow down, listen to her body, and celebrate small victories.

Cheyenne also reflects on the emotional side of stage 3B melanoma. Losing her beloved dog BamBam, who went through treatment at the same time as her, deepened her understanding of presence and grief. She’s found comfort in rituals, from nightly tea to morning breath work, and discovered the power of community, whether through friends dropping off books or her husband sitting by her side at tough appointments.

Above all, Cheyenne stresses the importance of education. She believes that knowledge is power, and being informed about treatment options, staging, and side effects helps patients make decisions with confidence. Sharing her story makes her feel seen, and she hopes it encourages others to speak up, ask for help, and feel safe in their vulnerability.

Watch Cheyenne’s video or read her interview transcript to find out more about her story:

She learned the hard way why trusting your gut is non-negotiable
What her dog’s cancer taught her about slowing down and living fully
The unexpected ways diet and meditation became her lifeline
How she found her voice and learned to ask for a second opinion

Name: Cheyenne E.
Age at Diagnosis:
- 45
Diagnosis:
- Melanoma
Staging:
- Stage 3B
Symptom:
- Itchy mole on her back that changed in appearance
Treatments:
- Surgeries: Wide local excision, sentinel lymph node biopsy, lymph node removal
- Immunotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents

My name is Cheyenne
The first red flag – my initial melanoma symptom: an itchy mole
The moment everything changed
How I found my care team
How surgery went
The cancer spread
What the mole looked like
My reason behind getting a second opinion
Treatment side effects forced a break
How my life has shifted
Navigating my diagnosis with my partner
What I want people to know
How I’ve supported my body

My name is Cheyenne

I got diagnosed with stage 3B melanoma in December 2024. I was first diagnosed with stage 2 and then post-op in January, we discovered I was stage 3. I’m from Malibu, California, but currently reside in Santa Cruz.

I’m a photographer, traveler, and a lover of dogs, kids, and all things. I work in the commercial advertising space. I photograph a lot of women’s health, women’s fashion, kids, sports, recreation, and travel. I’ve been doing that for about 25 years.

I’m married to a very handsome man who is an avid surfer and a geologist. We love living in Northern California. We’re very outdoorsy people. We live in a little town just above the ocean. It’s super beautiful, and it’s been a great place for me to work on this healing journey, for sure. I left LA about five years ago. I was there my whole life. I got my diagnosis when the fires were happening.

I’m not working at the moment. I’m taking a little break to focus on treatment and doctor’s appointments, but I still go outside for little walks, hikes, and days at the beach.

My parents grew up in the film industry. They were both stunt people. I grew up in a family of stunt people, including my mom, dad, aunts, uncles, cousins, and my sister’s husband. I grew up in that industry and loved image-making. I got into stunts as well in my 20s. I did that for a while and then realized the longevity was not there for your body, so I turned to the other side of the camera.

I picked up a camera and fell in love with it. I could tell stories, travel, and make a job out of it. I studied under a photographer in New York and then started my career. I feel lucky that I had creative parents who encouraged that process and it took flight. I signed with my first agent at 28 and went down the path of shooting lifestyle. I never got heavy into fashion. That parlayed into doing a lot of campaigns with kids and athletes. It’s been an incredible career and I plan to keep going for a while.

I talk to my best friend every day, so I hope I do her justice. She would describe me as a planner, a very hard worker, sensitive, and a good friend. I work hard. I probably work too hard sometimes, but I love my job, so it’s a combination of always having creative ideas that I want to get out of my head and loving to be busy. I’m learning to slow down, so not filling every moment with something to do is my true challenge right now. I definitely get described by most people as a very hard worker, very sensitive, and someone who loves to organize and plan things.

I realize it’s become a coping mechanism for me. I’ve had a lot of loss in my life. I’ve lost my parents at a young age, a couple of friends, and a couple of ex-boyfriends. We lost our dog to cancer last month, which was the hardest thing in the world. Learning to slow down has been a gift. He got diagnosed two to three months after me. We went through treatment together for months. I would go to his and then go to mine.

I don’t often have pictures of myself. It took me a while to dig deep and find some. I have a million pictures of everybody in my life and all the things I do, just not of me. There’s a photo of my dog and my arms after treatment one day, and there’s a tattoo on my arm that says, “Love you, Daddy-O.” It was the last note my dad left me before he passed away, and I got it tattooed on my arm.

I ended up naming my dog BamBam, which was my dad’s nickname. There was a day when I was lying on the ground with BamBam, my arm was wrapped from an infusion and his arm was wrapped from an infusion, and my tattoo was in the picture.

The first red flag – my initial melanoma symptom: an itchy mole

I noticed a mole on my back, which had been there for some time. I’ve learned now that moles on the back are very hard to watch because you can’t see them, but it was something that I was concerned about. I asked my general practitioner about it, not long before we ended up getting it biopsied. Unfortunately, the first doctor I shared it with told me that she thought it was cosmetic. I pushed and said, “Are you sure?” I let her know that it itched and found out later on that it was a telltale sign. I’ve learned that when in doubt, biopsy. I didn’t know enough at the time.

About two months later, I came down with pneumonia in December 2024, so I went in for a chest X-ray. The physician’s assistant asked me about the mole and he said, “Have you had this checked out?” I said I did a couple of months ago. He asked if we had biopsied it and I said no. He said, “I can’t do it right now, but can you come back tomorrow? I’d love to shave this off.” I said absolutely because my prior doctor made me feel like it was cosmetic and it wouldn’t be covered by insurance, so thank God for him. We shaved it off.

I got a call from him two days after Christmas and he let me know the news. I truly feel that man saved my life. I ended up finding out how aggressive it was and how a few months later would have made a big difference. Everything changed on December 27th and within three days, I had a surgeon, a plastic surgeon, and dermatology. I had four or five appointments and was scheduled for wide excision surgery in two weeks. Everything got put on hold. He told me that this needed to be the most important thing to focus on and I took him very seriously. Recently, my husband also got his skin checked by him, so I got to shake his hand and thank him.

The first doctor I saw spent five minutes with me. The second physician assistant that I saw spends 20 to 30 minutes with me. He even said to me, “You can’t give good care in seven minutes,” which apparently is the average they spend with you in the room. It was a doctor I had seen for the first time, so I hoped for a bit of a longer of a visit. I was pretty upset.

I feel very in tune with my body. I trust my intuition a lot. I had a mom who erred on the side of hypochondria, so I have always erred on the opposite side and never worried about little things in medical stuff, but I truly feel when I know something’s wrong, something’s wrong. I trust my gut wholeheartedly now.

I was upset and it took me a few months, but I eventually wrote that doctor a letter and let her know my case. She wrote back a very kind letter, apologizing and thanking me for letting her know, and let me know that she would pay more attention and be more careful in the future. It felt good to get that off my chest. It felt nice and her response was nice. There were no excuses. She just apologized and I appreciate an apology that is heartfelt, so it was nice.