The Power of Personalized Medicine: Biomarker Testing Guided Maggie in Her Stage 4 Lung Cancer
Interviewed by: Taylor Scheib
In May 2021, Maggie celebrated her 60th birthday with a profound sense of optimism, believing it would be the best year of her life. However, a series of peculiar symptoms — including ocular migraines, a blood clot in her leg, and vision problems — soon derailed those plans. Following a misread EKG and a persistent cardiologist appointment, a CT scan eventually revealed stage 4 non-small cell lung cancer (NSCLC) with metastases in the brain. Despite the devastating news, Maggie’s narrative shifted from a fear of immediate decline to a focus on scientific advancement when a blood biopsy identified an EGFR mutation.
The emotional turning point of Maggie’s experience occurred when she realized that cancer treatment is not one size fits all. Initially expecting the carpet-bombing approach of traditional chemotherapy, she was instead prescribed a targeted therapy pill that led to no evidence of disease (NED) within just two months. This revelation transformed her from an overwhelmed patient into a dedicated advocate who views her scans as vital information rather than sources of terror.
Over the last four and a half years, Maggie has navigated five lines of treatment, utilizing repeated biomarker testing to identify new resistance mutations like MET amplification and MET overexpression. Her experience highlights the critical role of genomic testing in accessing cutting-edge therapies, some of which were FDA-approved only a year ago.
Today, Maggie remains focused on the blue sky behind the clouds, using her voice to humanize the statistics for drug companies and providing peer support to those newly diagnosed.
Watch Maggie’s video or read the interview transcript below to know more about her story:
Biomarker testing is the gold standard for personalized care: Maggie emphasizes that next-generation sequencing (NGS) and tissue biopsies are essential for identifying specific mutations that can be treated with missile-like targeted therapies rather than broad chemotherapy
Persistence in the diagnostic process can be life-saving: Despite being told her heart rhythm was normal and she didn’t need a cardiologist, Maggie kept her appointment, which led to the CT scan that finally caught her cancer
Research is the foundation of hope: Maggie views medical research as the engine that provides new treatment options, noting she is currently on drugs that did not exist when she was first diagnosed
Scans are information, not just a source of anxiety: By reframing scanxiety as a tool for data collection, Maggie feels more empowered to collaborate with her oncology team on next steps
Community is a vital resource for navigating side effects: Joining mutation-specific groups like EGFR Resisters and MET Crusaders allowed Maggie to exchange practical advice on managing treatment-specific issues like skin conditions or edema
Even in the face of a terminal diagnosis, it is possible to find a life that is more fulfilled and grounded in gratitude than it was before the illness
Radiation therapy: stereotactic body radiotherapy (SBRT)
Clinical trials
Chemotherapy: combined platinum-based regimen
Thank you to AbbVie for their support of 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.
Hi, I’m Maggie. I have stage 4 lung cancer. I was diagnosed in the summer of 2021.
I live in Northern California. One of my biggest passions is travel. I grew up with a dad who worked for an oil company, so we lived in various countries around the world. I love going on vacations, whether it’s around the world or locally.
Another passion of mine is animals, especially cats. After I stopped working in 2022, I started volunteering at a local animal rescue called Joybound. I do cat socializing and feeding once a week. It’s like therapy for me. When I’m focused on those animals, my scans and doctor’s appointments are completely out of my mind.
Advocacy and the importance of research
I’ve always liked helping others, so shortly after my diagnosis, I signed up for peer mentoring for newly diagnosed lung cancer patients. I got involved with groups like the Lung Cancer Research Foundation, LUNGevity, and The White Ribbon Project. In 2024, I went to Washington, D.C., for the Rally for Medical Research to talk to senators about funding for the NIH.
Telling my story helps me realize I can have an impact. If there were a headline for my life, it would be: Keep hope alive; research matters. Without research, we can’t have hope.
Early symptoms and the diagnostic process
In May 2021, I turned 60 and felt like it would be the best year of my life. A month later, I had an ocular migraine; it was like looking through a white kaleidoscope for a minute. Then I had a blood clot in my leg.
My optometrist suggested a physical. At that appointment, I mentioned chest pain. An EKG showed an abnormality, but then I got a message saying it was a mistake, so I didn’t need a cardiologist — I kept the appointment anyway.
The physician assistant ordered a CT scan for August 31st. By 9:30 a.m., I saw the word “metastases” in my health portal. A biopsy confirmed non-small cell lung cancer, and an MRI found metastases in my brain, which had been causing the vision and balance problems.
Discovering targeted therapy and biomarkers
I initially thought stage 4 meant I’d have chemotherapy, lose my hair, and be dead by Christmas. But I learned cancer treatment isn’t one-size-fits-all. My oncologist ordered a blood biopsy that found an EGFR mutation. I started a targeted therapy pill in October, and by December, my scans showed no evidence of disease (NED). It was such a shock that I felt like I’d been punked. I started a quest for knowledge and learned so much more about the mutation through groups like EGFR Resisters.
Navigating five lines of treatment
I stayed NED until September 2022 when the original tumor site progressed. I had stereotactic body radiotherapy (SBRT). In 2023, more progression led to a biopsy that showed a MET amplification resistance mutation. I joined a phase 2 clinical trial that worked for nine months. After that, I had more radiation and then started chemotherapy in August 2024.
By January 2025, the cancer progressed again. Because I had MET overexpression, I started my fifth line of treatment with a drug that targets that specific mutation. I look at scans now as information that helps direct my team to the next step.
Advice on biomarker testing and advocacy
Biomarker testing is critical for getting the right treatment. It allows for personalized medicine. You have to know your biomarkers — the genomic testing, the NGS — because there are drugs developed to target specific mutations. If your oncologist isn’t doing it, you need to ask for it. Targeted therapies are like snipers; they go in like little missiles to attack the cancer cells while leaving the healthy cells alone.
Finding hope and the “blue sky”
Hope means a good future and research. Without research, treatment comes to a standstill. I’ve learned to control my thoughts and reframe things. My life is actually more fulfilled now than it was before cancer because I have gratitude I didn’t have before. There is a meditation that says the blue sky is always there, even if it’s covered by clouds. You might be in a dark place, but it’s not a forever feeling. There is hope.
Thank you to AbbVie for their support of 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.
From Chemo Exhaustion to Targeted Therapy: Clara’s Stage 4 ALK+ Lung Cancer Experience
Living with stage 4 ALK-positive non-small cell lung cancer, Clara has had her entire life reshaped by diagnosis, treatment, and the constant recalibration that serious illness demands. She moved back home to Iowa after years in Colorado, trading her independent adult life for the familiar walls of her childhood bedroom and the support of nearby family. In the middle of all that upheaval, adopting her dog Bernie became a lifeline, giving her structure, purpose, and a reason to get outside, even as medications changed her body and added significant weight gain.
Interviewed by: Nikki Murphy
Her early treatment included chemotherapy and maintenance immunotherapy. For a while, the scans looked promising. Her tumors were shrinking or holding steady, which is a meaningful win with advanced disease. When a later set of scans showed worsening metastatic disease and new spread to her spleen, she faced another round of aggressive chemo that repeatedly landed her in the hospital. The physical toll, the constant sickness, and the feeling that she was doing chemo more for others than for herself pushed her to say, “I am done.” She made that choice fully aware that it could mean her cancer might worsen without more treatment.
At the same time, additional biomarker testing revealed that her cancer was ALK positive, opening the door to targeted therapy in place of chemo. Starting Lorbrena (lorlatinib), a third-generation tyrosine kinase inhibitor specifically for ALK-positive non-small cell lung cancer, shifted both her symptoms and her outlook. Instead of enduring relentless infusions and hospitalizations, she now takes a pill once a day with far fewer side effects so far, and she is hoping upcoming scans will show stable or shrinking disease.
Alongside physical treatment, Clara is weighing deeply personal decisions about pelvic tumors, potential surgery that could remove her ovaries, and the grief of likely not having biological children. She is processing the realities of disability, financial toxicity, and a world not built for walkers and wheelchairs, even as she regains independence by driving again and leaving the walker behind. Through her “Cancer Questions with Clara” videos, she speaks candidly about taboo topics, like adult diapers and body image, to help others feel less alone, while reminding herself and her community that evolving research and new treatments can offer real, hard-won hope.
Watch Clara’s video or read the edited transcript of her interview for a follow-up to her story. Read how she first found out about her cancer here:
Targeted therapy for ALK-positive non-small cell lung cancer can offer meaningful options, including oral treatment with fewer day-to-day side effects
You are allowed to prioritize your quality of life and make treatment decisions that reflect your values — even when others may not fully understand
Biomarker testing can change the entire course of care, opening doors to personalized therapies
Clara’s experience shows how serious illness can reshape family roles, home, work, and even geography, while still making room for joy and reclaiming independence
Her transformation included moving away from chemotherapy, which she felt she was doing for everyone else, to advocating for herself, choosing targeted therapy, and using her story to educate and normalize difficult topics for other patients
Name: Clara C.
Age at Diagnosis:
30
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ALK
Symptoms:
Pelvic pain and discomfort
Bladder issues related to pelvic tumors
Incontinence
Pain in the lower back and hip
Treatments:
Chemotherapy
Immunotherapy
Radiation therapy
Targeted therapy: lorlatinib
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.
I was living at my mom’s house right outside of Des Moines, Iowa, but now I’m at my dad’s house in a very small town a little further away from Des Moines. My dad still lives in the house I grew up in, so it has been nice to come back to my childhood bedroom.
What’s nice about my dad’s house is that he has a big yard, so I was able to adopt a dog, which has been a great addition to my life. I got him from the Animal Rescue League of Iowa. He has given me so much purpose and has definitely been a reason to wake up in the morning. He has provided me with a lot of structure and routine, and has made me active, taking him outside for walks, which has been great to get outdoors. It has also been great in helping me be active because I gained a lot of weight from cancer medication, so I am trying to lose that weight. Bernie, my dog, has been helpful in that regard.
Leaving Colorado and saying goodbye to my old life
After treatment, I thought that I would just return to my apartment in Colorado, go back to my old life, and everything would be fine. At that time, I learned that I would have to be on immunotherapy for the rest of my life. Traveling back and forth between Colorado and Iowa would be too much, so I decided to give up my apartment. I was unwilling to transfer my care to Colorado because I love my team in Iowa so much. I decided to clean out my apartment and be done with it, which has been a weight off my shoulders financially because I had been paying for it the whole time.
It was very emotional and very bittersweet to leave Colorado because I had spent my entire adult life there. I had a lot of life lived, a lot of memories, and a lot of friends.
It was good to reflect and to reminisce. I invited a bunch of my girlfriends out for dinner while I was there, and we had a “goodbye Clara” party. It was fun and special to have those women there. I wrote each of them a letter about our friendship, why they were important to me, and how sad I was to leave Colorado. We were all in tears at dinner, but it was a good send-off.
It’s good to be in Iowa permanently. I enjoy being close to family, so that has been the biggest perk of being back in Iowa for good, I should say.
How we discovered my cancer progression and changed treatment
The last round of my first cycle of chemo was on July 3rd. That round and the one prior to that sent me into the hospital for 10 days, both times. Obviously, I was glad to be done with chemo and be on maintenance immunotherapy. I was doing immunotherapy throughout the summer.
I had scans in August and they were great. They showed that my treatment had been working. There was a lot of shrinkage. Different parts of my cancer were either shrinking or staying stable, and that’s the goal with stage 4 cancer: to keep things shrinking or stable. Stable is great.
I continued with immunotherapy throughout the fall. I had my next three-month scans in early November, which came back horrible. They showed that everything was growing, and my cancer had also spread to my spleen at that time. The report literally said “worsening metastatic disease,” meaning everything was getting worse. That was devastating news because three months prior, the scans were great. I had a lot of hope and optimism. To get those results in November was devastating.
We had a scheduled surgery on my pelvic tumors for December 1st, but because my cancer had come back so aggressively in terms of growth, we decided to start an aggressive chemotherapy regimen again. It was a different drug. We started it immediately and had to push off surgery indefinitely at that point. That was hard for me because I so desperately wanted to get these pelvic tumors out since they cause so much discomfort and pain. One of my pelvic tumors is on my bladder, which causes me a ton of issues.
I did chemo round seven, which again put me into the hospital for another 10 days. I was getting sick again and again. After that seventh round, I was in the hospital up until the day before Thanksgiving, which was so frustrating. I decided, “I am done. I am done with chemo.” I felt like I was putting my body through so much.
I also felt like I was doing it for the wrong reasons. I felt like I was doing chemo for everybody else and not for me. I felt like they wanted me to do chemo because they wanted me to stay alive. Of course, I want to stay alive too, but I’m the one who has to go through it. I’m the one who has to put my body through treatment. It’s so hard on my body to get that sick all the time.
I decided I was done with treatment. I wasn’t doing it anymore, which was a hard decision because I knew what that meant. That means my cancer may get worse and there is nothing that can be done if I am not willing to do treatment.
At the same time, my oncologist had ordered another set of Tempus testing, which is testing for genetic mutations. They sent another biopsy sample in. We found out that I wasALK positive, which my oncologist was shocked to see because he had not seen anybody evolve into a mutation that was not there previously. The whole reason he sent a biopsy sample again was that Tempus testing can also determine what chemotherapy to use. Not only does it identify genetic DNA markers, but it can also help guide treatment options. He did it for the purpose of making sure he was giving me the correct chemo this time around.
When it showed ALK positive, he said, “Okay, we are going to stop chemo,” which I had already decided to do anyway. He said that with ALK-positive, they have a targeted therapy available. Targeted therapy is a pill that I take every day. It is not chemo at all. It is in replacement of chemo and has far fewer side effects than chemo does.
The specific one that I am on is Lorbrena (lorlatinib), which is a third-generation tyrosine kinase inhibitor (TKI) of the targeted therapies that are available for ALK-positive patients. That is specific to non-small cell lung cancer, I should mention. It is a very specific and very personalized treatment. I started the targeted therapy pills in December 2025. After being on them for about one month, I have had very minimal side effects, and I think I am responding to it pretty well.
With targeted therapy, it sometimes takes a lot longer to show results. Even though my next three-month scans are in February, they may not show exactly if it’s working yet. I am hoping they will at least show that everything is stable, if not shrinking. I am hoping for stable, and then maybe another three months after, the scans will show some improvements and positive results from the targeted therapy.
That has been a good thing. I am so happy that I’m ALK-positive and that the targeted therapy was available. I had decided I was stopping treatment. Who knows what would have happened to me and what that would have entailed?
How cancer research and funding directly impacted my treatment options
I am grateful for the targeted therapy. These drugs are available because of the funding for cancer research, and all of the cancer patients who came before me who participated in clinical trials and research that made these drugs available.
It’s interesting how some of these drugs were only approved within the last couple of years. If I had been diagnosed with cancer a couple of years prior, who knows what kind of treatment I would be on today or if I would be able to be on this? Everything worked in divine timing for me to be on this. It has been going well.
Learning about ALK positive and finding community
I knew about different biomarkers. I had heard of ALK, but I did not know much about the treatment available for them. It turns out there is a whole community of ALK-positive patients. It has been nice to connect with others on social media and other platforms.
I’m on the third-generation TKI. I have talked to other patients who are on the first- and second-generation drugs. Those ones seem to have more side effects. As research progresses, it seems like they are trying to get rid of the side effects, which seems to be working because I have had very minimal side effects. It sucks that every medication for cancer that I take has weight gain as one of the side effects, which has been frustrating. But other than that, it’s going well.
My treatment plan going forward, scans, surgery, and clinical trials
My next scans will be in February 2026. Based on those results, we will determine if I am still eligible for surgery. That’s why I’m hopeful that things are stable or shrinking so that I can have those pelvic tumors removed. They cause me so much discomfort and so many issues. Getting rid of them would be the best for my quality of life.
After that, I will have scans every three months. I don’t know what my options would be if the targeted therapy stops working, but hopefully, I do not have to worry about that. I guess another option would be clinical trials. I am open to them, but I would need a lot of information to make a well-informed decision about whether or not to participate. I am open to it if that is my only option down the road. For me, whatever I have to do to live that is not chemo, I am okay with.
Why surgery is only planned for my pelvic tumors and how it affects my fertility
There has not been talk of surgery on any other organs. They explained to me that if they were to go in and get rid of some of the cancer, it would not make that big of a difference. I have so much cancer in so many places that it would not do much, which is hard to hear.
I am grateful that they are willing to consider surgery on those pelvic tumors. One of them had shrunk back in August, but then in November, it had grown back to its original size, which is the size of a softball. I have a softball-sized tumor on top of my ovaries. If I go through with the surgery, they will remove both of my ovaries, which will deprive me of the opportunity to have biological children. I do not have any kids right now and that is something I have had to wrestle with.
I looked into freezing my eggs, but it is so costly and out of my budget. Plus, with how much I want the pelvic tumors out, I guess I am okay with taking out my ovaries, but that is something you have to grieve —the kids that I thought I would have that I will no longer have. I know there are other ways to have a family, but it’s hard to think that I will never have a kid that looks like me or inherit traits that I have. I am very artistic, and I would want my kid to be artistic and creative. That has been something I have struggled with and talked about a lot in therapy. That is not something I thought that I would have to spend so much time thinking about at 31. It has been a hard topic for me.
The hardest moments and what keeps me going
With the idea of giving up on chemo and feeling like, “If I do this, I do not know what is going to happen,” what gets me through is having faith that it is going to all work out. I lean on my faith and my religion.
Sometimes, I want to give up. It’s hard to be positive all the time about cancer or the fact that I still have cancer. It’s frustrating because I’m a year into this. I have gone through all this treatment. I have done seven rounds of chemo and ten rounds of radiation. It’s frustrating to compare myself to others who, once they are done with treatment, have clear scans and put their cancer journey behind them. I get upset that I still have cancer and that I will always have cancer. Why did this happen to me and to this extent? It’s frustrating that I do want to give up sometimes.
What keeps me going is that I want to keep living. My dad always tells me to focus on the big things and the fact that I am still alive. I’m grateful to still be alive and that I still get to spend time with my loved ones. It has given me this perspective that other people do not have: to focus on what matters. Not that other things do not matter, but at the end of the day, your loved ones and experiencing life are so important and something to be grateful for. I think that’s what keeps me going.
Why I share my story on social media and “Cancer Questions with Clara”
I do a series on TikTok called “Cancer Questions with Clara,” where I answer any questions related to cancer. I am very open. I will talk about topics that other people are uncomfortable with. I do not mind sharing at all.
It’s important because a lot of people do not know anything about cancer. A lot of people have not been touched by cancer in any way. They do not know anybody who has had cancer. Maybe their grandparent had cancer, but they were not close to them or did not see them go through it, so they don’t know anything.
I approach it by speaking to the person who does not know anything. I think that is important because it educates people on what others are going through. I also want to normalize a lot of things because many topics are very taboo.
For example, sometimes I have to wear adult diapers. I’m not ashamed to admit that, but a lot of people would be uncomfortable sharing that. I do not want people out there to feel alone. I know there are plenty of other young women who have to wear adult diapers due to incontinence they developed from something else or from cancer treatment. That sucks, but I do not want people to feel alone. I want people to know that it’s okay and normal, and that other people go through that, too.
That is why I share a lot of this stuff. I want to educate people, to help people feel less alone, and to normalize different side effects. Those are my main motivations for sharing. It’s also a little bit selfish because I share updates on my journey. I got tired of repeating myself all the time to friends and family. It has been nice to point them to my social media to see my latest update about where I’m at with treatment.
Topics I want to talk about more: dating, disability, and financial toxicity
I need to talk more about dating and intimacy for young people with cancer. That is a big one that could be talked about, and I have not touched on it.
Another big one I have shared before is that I was heavily relying on a walker and I have moved away from that. I no longer need a walker or a cane, which has been fantastic. I’m able to drive again, which is so nice and gives me more independence. I could talk more about different tools and things that go along with disabilities.
Using a walker opened my eyes to how this world is not set up for people with wheelchairs or walkers. It was so frustrating to go into a building that only had stairs and no elevator. Maybe that is something I could touch on more because I know a lot of people who get cancer and end up needing a wheelchair or a walker.
Another topic that is uncomfortable for people to talk about is finances. Financial toxicity is a huge thing in the cancer world, with how expensive cancer treatment can be and insurance copays and everything. Some people shy away from talking about money. It is important to share what resources are out there to help lower or decrease costs for cancer patients, and what kind of financial assistance is available.
Ditching the walker, driving again, and getting my independence back
It has been so nice to have that sense of independence back. Using a walker, I had to rely on people to help me all the time, like opening doors and going up the stairs. It has been so nice not to have to do that.
Driving again has been incredible. I do not have to ask people for rides. I do not have to have people load the walker in the car. I did not drive for seven months, which was crazy to think about. It has been such a relief to have my own car back. My brother was borrowing my car since I wasn’t driving, which was fine, but he got a new car, so I got mine back. Now, if I want some pretzels, I can go to the store and get pretzels. It has been such a relief. It’s crazy when you do not have that independence. People take that for granted, being able to get in their car and go somewhere. I will never take that for granted again.
Writing a love letter to my body and coping with weight gain
I wrote a poem about my body, which was therapeutic to write down my emotions on paper. It helped to read it out loud. I hope it resonates with other people.
The cancer medications I have been on, especially steroids for inflammation and pain, did their job, which was great, but the biggest side effect was weight gain. I gained about 30 pounds in total, which is a lot considering I’m 5-foot-9 and usually weigh about 150 pounds. The jump to 180 pounds was a lot for my frame.
I never had weight troubles my whole life. I felt I had a good athletic build and a pretty normal-looking body. I did not worry about my weight until I gained 30 pounds. It was not overnight, but it was a slow increase. It felt like every time I went into my cancer center and they weighed me, I gained another five pounds. It was so frustrating.
I wanted to write this poem as a tribute to my body. Even though my body looks different now, it is not always going to look this way. I am going to lose the weight; it is just going to take time. I will lose it eventually. Bodies are malleable. They bounce back.
I wanted to honor my body for keeping me alive. Maybe I gained weight, but it kept me alive. It survived all these things I went through in the hospital. I went into sepsis. I almost died, yet my body still bounced back. It endured a lot of trauma, and I am still here.
Writing it was a way of getting my emotions out and processing what I had been through. That goes for any journaling. It’s a way to get things out. I sometimes need that release of emotions to fully process everything.
How targeted therapy has given me new hope and my message to others
Targeted therapy has definitely given me a new sense of hope. There are a lot of great things that can come from cancer research. The research is always evolving. They are always coming out with new things, new trials, and new ways of treating cancer.
Funding for cancer research is so important. It has given me a lot of hope. I feel very optimistic. I have seen a lot of good reporting on the statistics and data from the specific drug I am on. The prognosis of my disease has very much improved. I have a better outlook on what is to come, and hopefully, I will live for a long time on this targeted therapy. I’m grateful that they found the ALK-positive biomarker. Biomarker testing is so imperative.
My message for others would be not lose hope. Things are always evolving with cancer research. There may not be an option for you today, but give it time and maybe there will be something approved that can help you then. Do not lose hope. There is something out there that can help.
Living with the uncertainty of cancer and rolling with the punches
It never ceases to amaze me how quickly things with cancer can change. That is the hardest part. There are a lot of surprises with cancer at every turn. For me, it’s about not expecting anything and just rolling with the punches. Hopefully, that method will keep me alive for a long time.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
Spencer’s Fertility Journey and an Unexpected Ovarian Cancer Diagnosis
Spencer and her husband were in the process of trying to grow their family through fertility treatments. The executive producer, mother, and wife had endured the challenges of IVF before, and in early 2025, a routine baseline screening for a second embryo transfer altered the course of her life. When an unexpected ovarian abnormality appeared, further follow-up and surgery confirmed that she had early-stage ovarian cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
The diagnosis of ovarian clear cell carcinoma, a rare and aggressive subtype of ovarian cancer, meant that Spencer had to undergo immediate and life-altering surgery. She underwent a hysterectomy, an oophorectomy, and a salpingectomy to remove her reproductive organs, and she lost the ability to have another child. She openly describes the dual grief of confronting cancer and the end of her personal fertility, navigating both with the support of her husband and community.
Throughout her treatment, which also included chemotherapy, Spencer did her best to maintain normalcy for her young son, relying on family, friends, and a flexible workplace. She shares how complex it is to explain cancer to a toddler, her son’s pragmatic response to the physical changes she underwent, like hair loss, and her increased appreciation for small daily moments that followed her experience. Spencer also discusses the financial and emotional realities of fertility treatment.
Now in remission, Spencer focuses on vigilant monitoring, making full use of her new knowledge of genetic risk factors such as BRCA positivity and Lynch syndrome. Her story highlights the lifesaving potential of routine screening during fertility treatment, the limitations of current ovarian cancer detection strategies, and the power of self-advocacy. For fellow ovarian cancer patients, Spencer underscores the importance of listening to one’s body and asking for support: “You have to be strong, but you don’t have to do it alone.”
Watch Spencer’s video and read through the edited transcript of her interview below to learn more about how:
Early detection of ovarian clear cell carcinoma can be lifesaving
The impact of cancer extends beyond treatment to fertility, finances, and emotional health, making insurance and community support critical
Self-advocacy and attentive listening to one’s own body are crucial for any patient facing a serious health condition
Asking for and accepting help is an act of strength, not weakness, especially when facing the realities of cancer and intensive treatment
Spencer’s experience demonstrates personal transformation; she emerged with deeper gratitude and a more present, accepting approach to life
Name: Spencer L.
Age at Diagnosis:
35
Diagnosis:
Ovarian Cancer (Ovarian Clear Cell Carcinoma)
Staging:
Stage 1
Mutation:
BRCA
Symptoms:
None; mass in the ovary discovered during preparation for IVF
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.
I was diagnosed with ovarian cancer in April of 2025. It was stage 1 clear cell carcinoma, to be exact. I am from Charlotte, North Carolina, originally from Las Vegas, but I have lived in Charlotte for 11 years now.
I am a mother and a wife, and those are the two titles I am most proud of. My son is two and a half. I have been married for just over six years now, but my husband and I have been together for a little over 11 years.
I love to read. I am a part of the Junior League of Charlotte and have held some good roles there. I took a little bit of a step back after I was the Executive Vice President. I am also a part of the Zeta Tau Alpha alumni group here in Charlotte. I was a Zeta throughout college.
I am an executive producer at WCNC Charlotte, so I work with our reporters, our producers, and everyone in the building to tell the news and what is going on in Charlotte.
I am a daughter, a sister, a niece, and a cousin. I love my family.
IVF, fertility challenges, and discovering ovarian cancer
We did IVF to have our son. That was a long process. We had talked about whether we were going to have another child. Initially, my husband and I both wanted three kids, but life took turns, and it took longer, so we decided maybe we would have two. I was a little bit on the fence, and I think I was just scared. We had gone through some miscarriages, and IVF is tough, so it was not an easy process to get pregnant. Just knowing I would have to go through that again was hard. But we ultimately decided we would try.
In January of 2025, I went to my IVF clinic to get some of the first baseline testing done, just to make sure we were good to do another embryo transfer. They took some blood work and looked at my lining. They said everything was great, and to come back in a month and start my meds. A couple of weeks from that appointment, I was supposed to come back in a month, and we would be ready to transfer.
I came back almost a month to the day later in February, and they told me most things looked good, but my right ovary had doubled in size in a month. They did not really know what was going on and told me to come back in two days to see the actual doctor so he could get a better look at it.
I came back in two days. He said he did not really know what was going on and that it was weird that I was not in pain. He said he would think I should be in pain, but I was not. He sent me straight to an oncologist. That was on a Thursday. I saw the oncologist on Monday.
She had seen the ultrasound they sent over and thought maybe it was just a mass, especially because I was not having any pain. I am young, so there is that thought that cancer does not come this young. We know that it does, but I was not in any pain, and I did not really have any symptoms. She took some blood work, and one of my cancer markers was high, but she said that could be high from other things going on in my body. I still left that appointment hopeful.
We scheduled a surgery because she said if I wanted to get pregnant, I should not have this mass or cyst in my body. We agreed to plan to get it removed, no matter what. That was February 24th. My surgery was scheduled for April 2nd.
We had a conversation about what to do if it were cancer. She said they would test the tumor after they removed it. They would test the mass for cancer, and if it came back positive, did we want them to take everything, or did we want them just to stitch me back up so I could decide later? I said that if it was really bad news, if it was high grade and highly aggressive, to just take everything. My main thing was that I wanted to be alive and here. That was what mattered.
I went in for the surgery and woke up still groggy. My husband had to tell me that it was cancer and highly aggressive. They had removed everything: my uterus, my ovaries, my tubes, everything. In a span of six weeks, I went from thinking I might have a second child to being told I was never going to carry a child again. It was hard, but I am glad that I am here, and that was my number one thing.
I feel crazy saying that I kept battling between whether I wanted a second kid or not, and I kept thinking, “Send me a sign, send me a sign.” I remember thinking, “I did not want this big of a sign, but I guess that is my answer.”
Processing the word “oncologist” and the fear before surgery
I remember being told I was being referred to an oncologist and just saying, “Okay, okay.” I do not think in my mind, at that moment, I fully recognized what an oncologist was. Then I got this call: “Hey, this is Levine Cancer Institute with the oncology department,” and that was when it hit me. I thought, “Oh my God, oncology is cancer.” I asked the woman on the phone why she was calling and said I had just been told to be there, and asked if she could tell me what was going on. She said she was just the scheduler and was sorry. I apologized to her because it was not her fault, but I felt so thrown.
I was so thrown by going from “Okay, I am going to have this kid,” to “No, now you are not,” and I was not processing it well. As bad as it sounds, that first initial moment was the hardest part for me. I was more scared then than I was when I woke up from surgery and was told I had cancer. I think it was because that was the initial part. After that, I had about five weeks to stew.
Once I learned about the symptoms, I started being more in tune with my body. I think the symptoms started coming after I heard about them. I was losing weight, I got fuller more quickly, and I had some bloating. I started thinking this could actually be cancer. I had five weeks to stew with that possibility and know it was real.
It is crazy because at that first oncologist appointment, she said surgery was probably in about five weeks. I remember asking her if it was five weeks because she did not think it was cancer, and if it would be sooner if she thought it was cancer. She said no, they were just really booked up. I thought that was crazy. Maybe if they really thought it was stage 3 or 4 cancer, things would have moved quicker, but I kept thinking, “Thankfully it was stage one, because I would have wondered the whole time whether those five weeks mattered.”
The agony of waiting and realizing that I had been walking around with cancer
The waiting was awful. People say the waiting is the worst part, and it really is.
You cannot do anything. You are just waiting and sitting in your thoughts, and that is not healthy.
I did not feel like I had been experiencing symptoms before all this, so realizing I had been walking around with cancer in my body was terrifying.
Once I knew there was something there, I became more aware of every feeling and change. I started connecting potential symptoms in a way I never would have before.
The more I learned, the more I saw how easy it would have been to dismiss what was happening as something minor.
Grief, embryos, and not being able to carry another child
Some days, I do not know if it has fully hit me that I will never carry another child. We still have embryos, so we could have a biological child, but I would not be the one to carry the pregnancy. I remember getting a bill from our fertility clinic saying we had to pay for the next year of storage for our embryos. I had that thought of whether we should do it or not. Everyone around me said not to think about it yet, but I had to think about it because I had to decide whether to pay for the storage or not.
We chose to pay for it because I could not fully think it through, but I did not want to totally give up yet. We are still going through that. I have looked into surrogates, but they are so expensive. People say we can just do that, but it is not that simple. We have some IVF and fertility insurance, but it does not cover nearly as much as a surrogate would cost.
I still go up and down with it. I think about how I was asking for a sign, and this is the sign, but it is a brutal one. I do not know if I have fully dealt with it yet because I have been trying to deal with the cancer and stay alive. I have been trying to focus on being here. If I am being honest, I do not think I have fully processed the loss of carrying another child.
Motherhood, perspective, and how my son grounded me
I say that every pregnancy is beautiful and everyone is appreciative of being pregnant, but people who go through IVF and have had losses appreciate it differently. I feel like I appreciate having a child a little bit more.
I feel terrible saying that because I know everyone loves their kids, but there is a different layer of gratitude when you have fought so hard to get there.
The other day I woke up and work was already go, go, go. People were calling out, and I was thinking, “That is more that I have to do now.”
My son was awake, and I went in to get him out of his crib. He said he wanted to read some books. We read a couple of books, and he was just so joyous about the books and each page. I remember thinking, “This is what matters. That’s all that matters.”
I am sure I appreciated him before, but now I hold on to him even tighter. He has been the daily reminder of why I wanted to live and what I was fighting for.
Navigating marriage, communication, and shared loss
Neither my husband nor I is very emotional. I do not know if that is good or bad.
I remember talking to him either the night before surgery or the week before and saying that if it was cancer, what did he want me to do. I asked if he wanted me to get stitched back up so we could figure it out later, or if he wanted them to take everything. He kept saying it was up to me, but I told him that if they had to take everything, it would impact him, too. When it comes to another child, that is not just about me.
He told me he wanted me to be alive. If they needed to take everything, they should take everything. I said, “Okay.”
He has always been a partner who is very 50/50 with things, and even more so now. He has been great with our son, the house, groceries, and cooking. He is the better cook, so he has already cooked more than I did, but he stepped up even more.
We have tried to live life as much as we can. I was lucky I did not have super bad side effects, but I still had to be vulnerable at times and ask for help, which I am not good at doing.
I also had to remind myself that I was not angry at people; I was angry at the situation. That helped me keep perspective when my emotions were high.
The financial reality of IVF and fertility care
The financial side of IVF and alternative ways of having a child is a lot. I am lucky that both my husband and I had IVF benefits through our jobs. We still had to meet our deductible, which is high and feels crazy, and we did take out a small loan for part of it. Thankfully, we have paid that off now, but we did it just so we could make it happen.
So much of IVF coverage is paying up front, whereas with other medical bills, you can often get on a payment plan or receive your bill later and deal with it over time. I was lucky to work for a place that has IVF benefits, so we could pursue that path.
I am in Facebook groups full of women who ask how others are doing this with no coverage. It is super unfortunate. There is a lot of push to get more benefits covered because fertility treatment is more common than people realize. More and more women and couples are going through this, and not just heterosexual couples; LGBTQ couples need fertility support to build their families, too.
It should be something more affordable and accessible.
Infertility, guilt, and a late discovery of silent endometriosis
I remember feeling like there was something wrong with me. My husband felt defeated, too, when we finally moved into the IVF world. He felt like he could not provide for his wife to have a child. We both got tested and were told nothing was clearly wrong, which made it harder because we did not understand why it was not working.
On the cancer side of things, I now see some things that were probably making it harder. During my surgery, they told me I had some endometriosis. I was shocked because I had gone through all that IVF work, and no one ever found it. My doctor said it is hard to diagnose, and you basically have to see it, which requires being cut open. Again, I was not having symptoms, and I had heard people talk about silent endometriosis and assumed I did not have it. Maybe I did.
Looking back, I think that could have been part of what made it harder for me to get pregnant and then harder to continue to carry a child once I did get pregnant.
Choosing to work through chemotherapy
I coped with treatment by trying to live as normal a life as possible. I used no PTO days for the chemo infusions themselves. Round one of chemo was the day after my son’s second birthday. I made sure to have his birthday party and enjoy the weekend. Then we went into round one. My family was in town for my son’s birthday, and I felt pretty good overall. We had plans and went out around the town. I went to a friend’s child’s fourth birthday party. I worked and felt okay.
I had that week off work anyway because I had taken it months earlier for my son’s birthday and family visiting, so that timing worked out. After round two, we went to Florida for the 4th of July. Round three was when things started to hit a little harder. I think round three was the first time I had to call out of work for a day because work was crazy and I was doing too much. I realized that was not great.
By round four, I decided I would work from home a couple of days a week after chemo, and that was much better. I did not do that for round five because we were so busy, and then I had to call out again. By round six, I knew I definitely needed to work from home after treatment.
I had a great job with flexibility and great bosses. That made such a difference. I tried to balance rest with not just lying in bed, because lying around made my body hurt worse. I really wanted my son not to know too much. His being two was, in a way, a good age where he did not really understand, which was nice. At the same time, I would have to tell him I could not play right then and needed to lie in bed.
He was also the one who got me out of bed every day and kept things normal. I was especially worried about him seeing me lose my hair. That felt like it would be really hard for him.
Hair loss, wigs, and my son’s reaction
We shaved my head one day and made it a shaving party with some friends, but we did it during my son’s nap because I thought it would be too hard for him to see. I had some wigs ready. We did the shave on a Monday, and I did not show him my bald head until Thursday. I was really nervous.
We filmed his reaction. It was just normal to him. He thought it was funny. He wanted to take the wig off and put it back on, so you can see us playing with it in the video. Some days he wanted to wear the wig himself, so I put it on him a couple of times. It has been normal to him. I think once my hair grows out, he will be confused about why it does not come off anymore.
I told my husband I hope our son starts going to him and asking him to take his hair off. Thankfully, he has not tried that with anyone else. I think he knows it is just a “Mommy thing.”
We will see what happens as my hair grows back.
Balancing work, income, and intense chemo
My plan was always to work through chemo because we needed my income, and also because I wanted to stay connected to something that felt normal. I really love what I do, and I knew that if I could work through treatment, it would give me a sense of normalcy. When I was out on maternity leave for 12 weeks, I loved the time with my son, but I was excited to get back to work because it is a big part of who I am. It makes me a better person and a better mother.
Chemo days themselves were five to six hours, so I took those days off. My chemo days were on Fridays because my husband was off on Fridays and could come with me. I was usually back at work by Monday and, for the most part, felt pretty good through most of the rounds, especially at the beginning.
Telling coworkers about cancer and being seen
I think my boss checked in the day after my diagnosis, or I called him the next day, and I told him what was going on. I told him he could share with people if he wanted to, so I would not have to be the one to tell everyone. He said he would, and I was grateful he shared with the other managers.
I am not an emotional person, and I did not mind people knowing, but I knew people would feel bad for me. That was one of the hardest parts: having to share news that would make other people feel bad. I knew I had to tell people, but I did not want to.
People at work already knew I was going to be gone for two weeks for surgery because I had told them I had a mass and needed surgery. That part was not a surprise. After I got my diagnosis, I told my direct team and some people I was close to. Then I realized everyone would need to know eventually, and I did not want to be texting every single person.
A couple of days before I went back to work, I made a long social media post about everything. When I went back, some people came up and talked to me, and others just commented online or checked in that way. When I finished chemo and rang the bell, one of my friends who works with me was there. She sent the video to the station, and they played it on the newscast that day.
When I came back on Monday, someone said they had no idea. I explained that was why some days I had turquoise hair or pink hair, or short hair, or long hair, or a hat where you could tell I had no hair underneath. It was nice that people did not necessarily see me as that different or treat me like I was fragile. At the same time, it was still hard because I did not want to make people feel bad, but I also needed them to know what was going on.
Ringing the bell and post-chemo scans
Ringing the bell was complicated emotionally. You ring the bell, but you still have to do a scan after chemo. I am very superstitious and believe in jinxes. I worried that if I rang the bell and then had a scan in a month that was not clear, I would feel stupid for celebrating.
I tried to remind myself that my scan before chemo had been clear, so it really should not come back during chemo. I told myself I should be okay and that I would be glad I rang it. I was really happy I did. My husband brought my son, and a couple of close friends who had been checking in on me and supporting me came as well. I brought cake or cupcakes, balloons, and flowers. It made the day feel celebratory and special.
My last round of chemo was September 19th. My scan was on October 31st, Halloween. I was a rare case in the sense that I had stage 1 ovarian cancer, which is not common to catch that early. After surgery, I did a scan before I even started chemo, and it was clear. They believed they had gotten everything with surgery, but cancer cells are tiny, and you do not always see everything. They still wanted to do chemo to kill any remaining cells. I agreed.
I expected my post-chemo scan to be clear, but I was still nervous. I had five weeks between chemo and the scan. Cancer usually does not come back that fast, but so much of my case had been rare that I was worried I would get the bad kind of rare. It was all clear. Everything looked good.
Right now, I see my doctor every three months for blood work. The plan is to monitor my tumor markers that way. She does not want to scan me over and over unless my blood work shows something concerning or I have symptoms. If I get to the six-month or one-year mark and feel nervous, she said we can scan then.
BRCA, Lynch syndrome, and lifelong surveillance
During all of this, I found out that I am BRCA-positive and have something called Lynch syndrome.
BRCA increases the risk of breast cancer and ovarian cancer. Lynch syndrome increases the risk of ovarian cancer, colon cancer, skin cancer, and a handful of other cancers.
Because of this, I now have a yearly dermatologist appointment so they can check my skin. I do breast MRIs and mammograms, rotating every six months. I have already had both this year, and they were clear. I will start colonoscopies next year.
It will be a lot of doctor’s appointments, but hopefully all of them will be preventative and allow us to catch anything early.
IVF as a life-saver
I say that doing IVF saved my life. My husband and I had a conversation about whether to have another child on our anniversary in September 2024. We decided we would start trying again in the new year. I think about how bad things could have gotten if I had not gone when I did.
I was not having symptoms at that time. Even when I did start noticing symptoms, it was only because I knew what they were and was looking for them. Otherwise, I would have thought they were just PMS or my body being weird. The symptoms were not super painful or obvious. That is what is so weird and scary about cancer: the symptoms can be vague and easily attributed to something else.
I think about the timing of going in for IVF and how, during a transvaginal ultrasound, they caught my enlarged ovary. There is no standard screening test for ovarian cancer. We do mammograms for breast cancer, but for ovarian cancer, we do not have a routine screening that everyone gets. There is a blood marker test, but that is usually done once there are already concerns.
I was lucky that it was seen incidentally on that ultrasound. It makes me wonder why we do not do transvaginal ultrasounds yearly for women, or at least for those with risk factors. We should be doing more to prevent things. Breast cancer is more common, but often caught earlier and is not as deadly as ovarian cancer. Ovarian cancer is often caught late, and that is why it is so deadly.
Living in survivorship and learning to let go
Each bit of good news felt like a physical weight lifting off my shoulders. People talk about that metaphorically, but I actually felt my shoulders drop after each positive update. I am a nervous patient in general. Before every chemo round, they tested my blood to make sure my body was recovering and checked my tumor markers. I would be so nervous waiting to see if my marker had risen.
They would take my blood pressure and tell me it was a little high. I would say it was because I was sitting there waiting for results. The moment they told me things were okay, and I could move on to the next round, my blood pressure would come down. After my post-chemo scan came back clear, my blood pressure was totally normal. There was nothing to be anxious about in that moment.
Each bit of good news made me feel like I could make a plan for next year, next week, and next month. I am very much a planner, so not being able to plan during treatment was tough. I would think, “Okay, three days after chemo, I might be okay to do something, but five days after, maybe not.” I had to schedule my life around that.
Now I am learning to let things go in a new way. My son had picture day recently. I had an outfit picked out for him, and he said no; he wanted to wear his football shirt. Before all this, I would have insisted on the outfit I chose. Instead, I said okay, he could wear the football shirt. I thought, “What does it matter? You might not even order the photos. This is who he is right now; he loves sports and balls, and that is what this photo will show.”
We took our Christmas pictures the week before. I had lost all my eyelashes at the very end of chemo. I am really low maintenance and have never worn fake eyelashes. I suddenly felt like I needed eyelashes for the photos. I bought lashes and glue and had someone at work show me how to use them. Then I lost the glue and could not find it in time. I was so upset at first, but then I had to tell myself this is my life right now, and it is okay. People are not going to notice as much as I do. I remind myself to have fun and to let go of things that do not truly matter.
This time of year, with the holidays, is full of plans, and I love that. I also have to remind myself to schedule rest because if I do not, I will go, go, go, my body will hurt, and it will be mad at me later. I am trying to balance what is realistic for me to do with permitting myself to rest.
Asking for help, community support, and redefining strength
I would tell anyone going through something similar to advocate for themselves and listen to their body. Ask for help when you need it, because you are going to have to be so strong. I found so many people wanted to help me, even if it just meant talking.
At first, I did not know how I needed help. I would say we were fine. People kept asking, and eventually I told them to let me get through that round, and then I would tell them what I needed. So many people want to help and be there for you. They feel bad if they cannot, so it is important to find ways you truly do need help and be specific about it.
I realized dinner was really hard. I often did not have the energy to cook. So being able to say, “Dinners are hard. I do not have the energy. Can you send this?” made a big difference. Whether you want something specific or are okay with anything, having people take that off your plate is huge.
It is okay to take each day in stride and to accept that you are not going to be exactly who you were before. In a way, this experience changes you for the better because you see life in such a different light.
“A Clinical Trial Saved My Life”: Russ’s Acute Myelomonocytic Leukemia (Rare AML) Story
After 48 years of marriage, Russ was blindsided by Acute Myelomonocytic Leukemia (AMML), a rare diagnosis with few options. But a last-minute clinical trial offered a new path. Here is his story of love, surrender, and the “sweet spot” between faith and science.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal & Jeff Forslund
Russ’s story offers a view into the intersection of honesty, science, and hope. Diagnosed with acute myelomonocytic leukemia (AMML), a rare subtype of AML, after weeks of “just the flu” and crushing fatigue, Russ went from preparing for hospital discharge to learning he had cancer and being told he needed treatment that same night.
When he heard the word leukemia, he thought of death, yet in that moment, a surprising sense of peace set in as he focused on what it was and how to treat it.
The early days were chaotic though. Russ was turned away from one hospital because his insurance plan did not match their funding, forcing him and his family to pivot overnight to UCLA’s emergency department. There, amid what he describes as ground zero conditions in the ER, he endured hours on a hallway gurney, multiple tests, and a 12‑hour wait before finally being admitted to the oncology floor. Even as he grappled with a 7+3 chemotherapy regimen and spent 29 straight days in the hospital, he remembers mostly trying to protect his family as waves of shock rippled through them.
Behind the scenes, his primary care physician and his family were fierce advocates, pushing for answers and ultimately toward a newly developed clinical trial drug tied to his NPM1 mutation. Russ was too sick to participate in the decision, but his wife and adult children did the research and made the call to enroll him, a choice he says “saved my life.” He now calls himself the poster boy for the trial, still taking the pills daily and returning to UCLA for ongoing labs, doctor visits, and bone marrow biopsies.
Today, Russ lives in deep remission and talks about inhabiting the sweet spot where faith and science intersect. He credits his family’s constant presence, the insight of his oncology team, and the existence of a trial drug that arrived just in time for him.
For others with AMML, he encourages surrendering to trusted clinicians, considering clinical trials seriously, learning about your biomarker, and allowing community, spirituality, and modern medicine to work together in the service of one more good day.
Watch Russ’s video or read the transcript of his interview below to dive deep into his story:
How Russ’s acute myelomonocytic leukemia symptoms first looked like the flu
How insurance and hospital systems can create major obstacles, and the importance of having advocates who help navigate where to go next to change the course of care
Why clinical trials are not last-resort gambles—and how exploring them from the start is the reason he says he is alive.
How trusted loved ones and clinicians are essential partners in making sense of complex choices and next steps
Russ describes a profound transformation from shock and uncertainty to “deep, deep remission,” learning to live day by day in a balance of faith, science, and gratitude
Name: Russ D.
Age at Diagnosis:
68
Diagnosis:
Acute Myelomonocytic Leukemia (AMML), a rare subtype of Acute Myeloid Leukemia (AML)
Mutation:
NPM1
Symptoms:
Flu‑like symptoms
Profound fatigue
Blood pressure drop
Shortness of breath
Treatments:
Chemotherapy
Clinical trial drug: menin inhibitor
Thank you to Kura Oncology for their support of 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.
Nancy and I met in a nightclub back in 1976… and we have been dancing for 48 years.
Russ D., AMML Patient
Who I Am
I’m probably most known for my passion for life. That extends to enjoying living, my family, music, and sports. I’m pretty passionate and can be moved by the things that I love and enjoy.
Our Love Story: Meeting My Wife in 1976
Nancy and I met in a nightclub back in 1976. I went to this nightclub with a buddy. I saw him dancing with a hot blonde while I was standing against the wall with a beer. I said, “Man, if he doesn’t ask her to dance again, I’m going to swoop in.” He went left, she went right, and I dashed right in and put my arm around her. I said, “Would you like to dance?” and we have been dancing for 48 years.
Knowing She was “The One” and the Secret to 48 Years of Marriage
I told her I loved her within two days. I was somewhat bitten by the “love at first sight” cliché, and it proved to be a good choice. We were engaged after two weeks.
Your love deepens as the years go on. It validates your early love, but then your ongoing love strengthens. It’s the recognition that you love her and you’re going to do what you need to do to keep that relationship going. That’s in light of mistakes, challenges, and difficulties, but also a lot of good times, a lot of laughter, and a lot of joyous living.
Your love deepens as the years go on. It validates your early love, but then your ongoing love strengthens.
Russ D., AMML Patient
Marriage Through Cancer: A Bond Forged in Suffering
My family all thought they were going to lose me, and I have a significant place in our family system. Never having gone through anything of this kind, it was such an emotional devastation to my wife and to my children. My wife stayed strong for my children. She was there for them, but she was there for me, too, and she was as determined as I was to see me well. We both felt like we had life to live.
I never winced once about having cancer. I never cried about it. I just said, “Okay, what have we got to do?” and my wife was the same, right there by me. Our love has deepened as a result of that. Love deepens if you allow it to, and our marriage and relationship are in one of the best places they have ever been in our lives. It is a bond created through suffering that is real and absolutely unbreakable.
Living with Fear, Gratitude, and “Self-Contained” Feelings Today
At times, I feel very self-contained. Not isolated, but within myself. I manage the fears and concerns, and I try to live and savor each day. At times, it is a little bit lonely because I want to be brave for my family and my wife. There are things I manage that I do not tell people about. If there were something really dire, I would. But there is this curiosity of a question: how long do I have?
I had a very rare form of leukemia with not a good prognosis, but here I am feeling as good as I could possibly feel. I am grateful for today. I will do the things today that I always do, and I will continue to beat the drum of being encouraging to others and being caring, seeing people, and being who I am. I definitely feel a bit inward and self-contained at times. It’s like nobody knows what I am going through but me. It’s a little tricky.
It is a bond created through suffering that is real and absolutely unbreakable.
Russ D., AMML Patient
My First Red Flags Before My Diagnosis
I had been at a local hospital for two other stays before I went to UCLA. We thought I had the flu. I was on the couch for a couple of days, but I wasn’t getting better. I had a lot of flu symptoms and fatigue. Then I had a real blood pressure drop, which was scary for both of us. We called our primary care physician and she said, “Go to the hospital.” I was in the hospital for the first stint. I’m sure I was a bit dehydrated. They gave me an IV, kept me under observation, ran some tests, and sent me home with no diagnosis.
Over the next three weeks, I knew something was wrong because I couldn’t walk from my car to my house without being exhausted. The fatigue factor was profound. I would lie on my wife’s lap and say, “I am so tired.” I was so down. My primary care physician had me take a blood test, and it came back with my white blood cells at about 40,000. She said, “Get right to the ER.” I went back, and they diagnosed me with acute myelomonocytic leukemia (AMML) at Providence. They diagnosed it, but they do not treat it. They told me I needed treatment that night.
I cannot tell you the sheer shock. It was surreal, but I felt this peace come over me that said, “Okay, we have to deal with this.” Meanwhile, it was like shock waves running through my family, and I was trying to maintain for them. The shock was real, but the main red flags had been flu-like symptoms and serious fatigue that ultimately led to the diagnosis.
What We Thought During Those Three Weeks Before Diagnosis
We didn’t think it was anything like leukemia. We knew something was wrong, but because I had been largely healthy throughout my life, we thought, “There’s something, but we will take care of it.” There was an optimism. It never dawned on us that leukemia was the culprit. Those three weeks were filled with questions: “What’s going on?”
I am a high-energy guy. For me to have fatigue was alarming to everyone. People were freaking out, asking, “What is wrong with Dad?” because I am usually high-energy. Our minds never went to the dire reality we eventually faced — nothing close.
I couldn’t walk from my car to my house without being exhausted.
Russ D., AMML Patient
A Primary Care Doctor and Wife Who Advocated Hard
My primary care physician was very much on top of things and advocating for me. She was in our corner and treated me with what she knew. When the blood test came back with the accelerated white blood cells, she said, “Get to the ER right now.”
It takes a lot to get me to go to the hospital. I tend to be a little bit too chivalrous or stubborn. My wife was also really urging me. She was consulting Doctor Google, researching and reading, and she did not like what she was seeing. It did not take much for her to get me going as well.
The Moment Everything Changed
That afternoon, I had already been in the hospital for three days, and they told me I was being discharged at 2 p.m. I was actually feeling better after they had treated me a bit. I was packed up and ready to go home. Two o’clock, three o’clock, four o’clock went by.
By 4 p.m., I asked the nurse, “We were supposed to be discharged.” She said, “The doctor has not signed the orders yet.” At 6 p.m., the nurse came into our room with a phone. The doctor was on the phone telling my wife and me that I have acute myelomonocytic leukemia and that I needed to get treatment right away by going to downtown Los Angeles and going to USC.
When the blood test came back with the accelerated white blood cells, [my primary care physician] said, ‘Get to the ER right now.’
Russ D., AMML Patient
That moment was surreal and mind-boggling. Nancy was very afraid, and so was I. We’re older, so when I heard the word leukemia, I always thought of death. I asked the doctor, “How long do I have?” It was like going from 0 to 100 — from just living life to, “What?!” A peace settled on me. I cannot say I was fearful. I was more asking, “What is this, and how do we get after it?”
I had no idea at that point that without the clinical drug, there wasn’t much of a treatment opportunity. We were caught flat-footed and knew nothing about it. We have an education now, believe me. My wife was very upset, unhappy, and concerned. We held each other, moved into the discharge process, went home, picked up a couple of things, and drove down to what we thought was USC Medical Center.
Telling the Kids and Family in the Middle of the Chaos
We went to that medical facility, which was supposedly USC, but USC had sold its building to a public medical group. It was not what we expected. My daughters came down, and I hugged them, but I was inside the building trying to get treatment and move through their process.
My wife handled the bulk of communicating with the entire family about my situation. That was brutal. She was a great mom and was there for them, but it was very tough. My youngest daughter was absolutely undone. She was worried I would not be there for her marriage. She had a serious boyfriend and feared I would not walk her down the aisle. She had a lot of angst, and her boyfriend, her fiancé, was seeing this for the first time and was overwhelmed.
My oldest daughter was emotional but very strong. My wife also had to tell my son, and he and I are very close. That was a tough conversation for both of them. The family had initial fears, concerns, and tears, but then it became, “Okay, what have we got to do here?”
When I heard the word leukemia, I always thought of death.
Russ D., AMML Patient
Insurance Rejection and Being Turned Away While Needing Treatment
I was in a back room getting tests, holding paperwork that the Providence doctor had given me. He said, “Show this paperwork and you will get admitted anywhere.” That wasn’t the case. I had to go through all these tests. I spent seven hours in that back room waiting and talking.
At the end of seven hours, a financial manager asked me to come into an area. She said my Medicare Advantage plan did not sync with their public funding, so they couldn’t treat me there. We went from 0 to 100, thinking we would go there and get treatment. We had prepared for that. Instead, she basically said, “You will have to leave. We cannot treat you here.”
I had already released my family to go home because it is about a half-hour drive from where we live. Around 11 p.m., I called my wife and my daughter Danielle and said, “I need you to come pick me up. They’re rejecting me because of the funding.” They asked, “What are we going to do?” I said, “Come pick me up. Let’s get a good night’s sleep if we can, and I will deal with this in the morning.”
I slept well that night, but my wife didn’t at all. In the morning, we called an oncologist whom Providence was going to connect us with. This doctor had never seen me in the hospital, but was on the phone. She said, “Go to UCLA and be really sick, because you are going to have to go in through the ER. Take your paperwork and go through their emergency room.” That is where we headed in the morning.
My Medicare Advantage plan did not sync with their public funding… They’re rejecting me because of the funding.
Russ D., AMML Patient
We Had to Pivot to UCLA
I knew nothing about a biomarker at that point. I was just trying to remember the name of what I had. I was not “AMML-ing” it very well. My oncologist at Providence had told me, “Pretend that you’re very sick at UCLA.”
We arrived and waited in a tent outside in a parking area and it was cold. When I got in, the UCLA ER looked like the ground zero of a battle. There were people everywhere, gurneys, IV drips — everything. I went through a variety of stations, and my wife Nancy and my daughter Ally came with me. At one point, I was really in anguish — or pretending I was — and really doing my best to make myself seem very sick. My daughter Ally asked my wife, “Is Dad really hurting that bad?” I pulled down my mask, looked at her, and winked, so she knew I was not that bad.
They told me they were going to admit me, but didn’t know when. They put me on a gurney in a long hallway with bright recessed lighting. It was like a traffic jam on the freeway — gurney after gurney wrapped around the building. I don’t even know how the doctors and nurses kept track. I received good treatment there; they checked on me, made me comfortable, and did more tests.
We arrived around 10:30 a.m. I was put on a gurney around 1:30 or 2:00 p.m. Eventually, they tucked us into a little side room where my gurney barely fit. It was more private because they knew they were going to admit me. A doctor came in and said, “This is what you have. It’s very treatable. You’re going to be just fine.” That wasn’t true, but we didn’t know that, and we took great comfort in it. She even prayed for me, which was very kind.
We sat in that small room until about 9 p.m. Then we were ushered into UCLA Ronald Reagan on the oncology floor. It took about 12 hours to get a room.
My care practitioner got me settled for the night, started a drip line, and I was attached to that pole for the next six months for the most part. It was a simple “Welcome, get in, and let’s set up what we need.” I told my wife she needed to go home. She was not happy about it. She spent several nights with me over time, though I’m not sure if she spent the night that first night.
They started testing in the middle of the night, so I got very little sleep. Providence had sent all its paperwork, so UCLA had a baseline, but they wanted to run their own tests. They did that through the night and into the next day, and they started chemo on the second day.
I didn’t know what a clinical trial was or how it would impact me… She said it would be very exciting if I qualified because of the NPM1 mutation.
Russ D., AMML Patient
First Time Hearing About the Biomarker and Clinical Trial Option
My first oncology doctor came to check on me and talk with my wife, my daughter, and me about the possibility of a clinical trial drug, of which I was thoroughly uninitiated. I didn’t know what a clinical trial was or how it would impact me. At that point, I had an IV pole with about 10 different bags running into me. I’m not a big pill-taker, and I had lost control of my life. All these choices were being made on my behalf. I was just along for the ride.
I remember her talking about this drug. I don’t remember her using the word biomarker. She talked about a mutation. That was the first time I heard anything about it. She said it would be very exciting if I qualified because of the NPM1 mutation. That was the first time my family and I heard it, but then nothing more was said for several days, until it actually got in motion.
I was in a bad way, dealing with the seven-day, round-the-clock 7+3 regimen. I had a rocky five or six days. While I was struggling, the clinical drug decision process was going on. My daughter and her husband had done a deep dive into the drug, and my wife had a close family friend with bladder cancer whose life was saved by a clinical drug. Between their research and that recommendation, my family moved toward the trial, even though others initially did not want me to suffer more after hearing about the side effects. My son and my other daughter relented, and we decided to go for it.
My Family Made the Clinical Trial Decision and Saved My Life
They saved my life.
We did not have any other option. This drug had just been developed a few months before my diagnosis, so we believed it was a God thing. If I had been diagnosed a year earlier, I probably would have been gone by now. My prognosis was not favorable. There wasn’t anything else.
I was grappling with trying to get through the chemo. I remember being shivering cold, never able to get warm, and being in and out of sleep with violent dreams. My vision became extremely blurry for a while, which was very scary. I couldn’t focus on anything, which was terrifying. I was wondering if I was losing my eyesight. While I was in that state, my family was discussing the clinical drug. It wasn’t something I could participate in. When they explained it to me, I said, “Fine, let’s do it.”
The two people running the trial came in and handed me the paperwork. I signed it while on my bed. From that point forward, I was taking two pills a day.
We did not have any other option. This drug had just been developed a few months before my diagnosis, so we believed it was a God thing.
Russ D., AMML Patient
Learning to Live Around the Trial Drug Schedule
I tried to get them to give me the pills at the same time each day. You couldn’t have anything in your stomach two hours before taking them and then an hour after. It felt like madness. I tried to get them on a routine: “I will have lunch, you come in at 4 p.m., give me my pills, and I will have dinner at 5 p.m.” It took a week to get them aligned.
At that time, I followed the timing rules very strictly. Now I fudge here and there. They have since told me they don’t know exactly what should be done regarding food intake, because food actually integrates fine with the pills. Waiting two hours before and one hour after may be overwrought. I was very fastidious about it then, though.
The Power of Family Support and My Goal of Being a Father
Our family is close. I love being a dad. My wife is an incredible mother. We have always had good relationships with our kids and loved raising them. All my kids and grandkids live within 20 minutes of us, so we’re always together.
I did not grow up with a father who cared about me or even talked to me. There was no connection between us. Becoming a father was a real goal of my life. A lot of people have goals of success. I wanted to be a father. I didn’t know how poor my upbringing was until I became a father myself. I dreamt of being a dad, and it came to pass. The greatest source of joy in my life is my family.
Them caring for me was very humbling. I was at UCLA for 29 straight days during that first stint. My wife, daughters, and son-in-law spent the night with me at different times. I had someone at the hospital every day but one. I was very focused on beating this and having life, and my family was the primary inspiration for that.
Them caring for me was very humbling… I was very focused on beating this and having life, and my family was the primary inspiration for that.
Russ D., AMML Patient
How I Think About Clinical Trials Now
For me, the clinical trial has always been a very positive point of reflection.
I came to understand how rare my cancer was and that there wasn’t much that could be done without this drug. Once we started, I never wavered about being part of it. I felt I was helping, and now a drug related to mine has become FDA-approved. The company that manufactures it has been gracious and kind to me because I was one of the first people to take the trial drug upon diagnosis. The FDA approval initially came for those who had relapsed, but they saw the drug work in me at diagnosis.
I felt it was a real privilege and I was very grateful. I told the company, “Anything I can ever do for you, I will.” I have done some speaking for them. I felt good about helping others, forwarding healing for people coming after me. When I reflect on it, I’m always glad to be part of it and willing to do anything I can to further healing for others.
Life on a Clinical Trial: Monitoring, Visits, and Bone Marrow Biopsies
After being discharged from the 29-day hospital stay, the clinical drug protocol required me to return to UCLA twice a month initially. The first appointment of the month was just labs. The second was labs plus a doctor’s checkup. That went on for seven or eight months. Now it’s once a month at UCLA, where I do labs and see the doctor at the same visit.
I also still get a bone marrow biopsy every 90 days. I just had one about a month ago, and everything came back MRD-negative. We are about six months away from the end of the two-year trial, so something will shift at that point, but I am not sure how yet.
I still take the trial pills. I used to take two pills a day; it’s now three pills a day and has been for six or seven months. I take them in the afternoon. With the first one, I say a small prayer of thanks: “Lord, thank you for [this drug] and that it has become FDA-approved.” With the second, I say, “Thank you for its ongoing efficacy in my body to bring healing.” With the third, I say, “May it always be potent, may I never die of cancer, and bless oncology.”
With the first one, I say a small prayer of thanks: ‘Lord, thank you for [this drug] and that it has become FDA-approved.’ With the second, I say, ‘Thank you for its ongoing efficacy in my body to bring healing.” With the third, I say, ‘May it always be potent, may I never die of cancer.’
Russ D., AMML Patient
Having Extra Eyes on Me
Being in a clinical trial means there are extra eyes on you — extra monitoring, extra visits, and extra biopsies. That hit me early, and I took to it like a duck to water because I felt it was part of my recovery. My wife and I have to drive down to UCLA on a major thoroughfare and fight traffic. It’s not always convenient, but my feeling is that we need to be the best patients, the most pleasant, and grateful people we can be. Let the eyes be on me.
I welcome that because it gives the team more data and information. It can help with this nasty disease. I jokingly call myself the poster boy for this clinical drug because I was one of the first to get it upon diagnosis, so they watch me very closely. I embraced my poster boy responsibilities.
What I Tell People Who are Considering Clinical Trials
If I were sitting in front of a group of people who might know something or nothing about clinical trials, I would start by saying: clinical trials saved my life. I am here today because of a clinical trial drug.
I would encourage you that if there is an available trial drug, do your research, talk with your doctors and caregivers, and seriously look at it as a means by which you embrace treatment that is the absolute best for you. I admit I have a bias; the clinical drug saved my life, so I am a strong proponent. Every person is different, and every situation warrants its own process, so do your process. But if you are going to lean in and need a little help deciding which way to go, I am going to nudge you toward the trial.
Clinical trials saved my life. I am here today because of a clinical trial drug.
Russ D., AMML Patient
Learning About My NPM1 Mutation
The process of discovering the mutation and biomarker was not discussed with me at the time. They did the tests and used the results to guide my treatment.
Later, one of the doctors in the entourage wrote everything down for me on a sheet of paper: the NPM1 mutation, some details, and clarifications. I still keep that piece of paper on my desk. It was the first time I truly understood anything. Up to that point, everything had been verbal, and it did not fully land with real cognition. That paper was a breakthrough moment for me.
It was also the day they told me I was in deep, deep remission. I had never heard of anyone being in “deep, deep remission,” only remission. My oncologist called it “deep, deep,” so I quote him on that. The paper is special because she took the time, on her own initiative, to write it out and make it clear to the degree a layperson could understand.
It was a breakthrough moment for me to understand, and it was also the day they told me I was in deep, deep remission.
Russ D., AMML Patient
The Communication Gap Between Doctors and Patients
It’s important to humanize all of this because there’s so much information being thrown at you. In my case, it was not backwards, but they knew what to do with me. They knew about the clinical trial and my mutation, which was reassuring.
However, there’s a disconnect between the medical field and patients. Medical professionals are so busy and consumed that they look for the shortest paths to communicate and fulfill their jobs. They take for granted that patients will understand information to a certain degree. There are rare doctors who make it simple, and that is genius: having tremendous knowledge but breaking it down so anyone can understand.
A lot of doctors do not seem to enjoy that part of communicating with patients. They may trivialize it because they’re focused on saving lives. That creates disconnect and frustration for patients and families. I’m not judging them; I respect their learning, work, and time. It’s just a reality. What helps is follow-up, like when a couple of nurses came back into my room to help me understand more. That was very valuable.
Genius is tremendous knowledge broken down so anyone can understand.
Russ D., AMML Patient
Keeping lines of communication with the care team open is crucial, but it’s hard for one person to hold all the information. My wife was so focused on me that she did not understand a lot either. My oldest daughter became an advocate, but she eventually had to drop off because she has a family and responsibilities. During that first month, she was all over it by helping explain, fielding conversations, and taking on discussions I couldn’t have because I wasn’t well enough. My wife was too concerned about me to shoulder it all.
It’s a reality that some doctors’ personalities are not geared toward the communicative side. Family members or advocates who can help digest and interpret are incredibly important.
Navigating the Future: Labs, Remission, and Living Day by Day
Now, I can read my labs and know what I am looking at and looking for. I understand the terminology regarding my biopsies. The future is not really discussed. I do not know how to discuss it, which is why I try to savor each day and enjoy it for what it is.
My primary oncologist has said one key thing: every day you do not relapse makes it more likely that you will not. As far as the future is concerned, I live on that. I do not have bad days. I have never been someone who comes home and says, “I had a bad day.” As far as I know, I am totally cancer-free. That is a good day. Whatever else happens is icing on the cake — and I like lots of icing, especially on carrot cake, which my wife is making for Thanksgiving.
Live your life in the sweet spot of faith and science.
Russ D., AMML Patient
There isn’t much dialogue about the future because it is unknown. My oncologist looks at me and says, “Russ, you’re doing good, man. Keep it up.” He is the director of stem cell research and training at UCLA. He did not push me in that direction, even though it would have been natural. He walked with me and watched me. He told me I had options, which many people do not have. He laid out my options but didn’t tell me what to choose. That was up to my family and me.
Living at the Intersection of Faith and Science
I live in the sweet spot of the intersection of faith and hope. You need people praying for you and a community around you. You want to consider spiritual truth to build your faith and strength to fight your disease.
However, do not allow faith to short-circuit your belief in science. A drug was made for me at the right time in my life that saved my life. God blesses great minds with creativity and the ability to do great things for their fellow human beings. Take advantage of that. Where those tools overlap, live your life in the sweet spot of faith and science.
Surrender, Trust, and “Letting Them Bake the Cake”
If I had one main piece of advice for people with AMML or cancer, the word that comes to me is surrender. Place your life in the hands of your higher power — your God, whatever you believe is larger than you and gives life. Surrender to the knowledge and wisdom of experienced doctors.
My primary care physician said to me, “UCLA has the recipe to bake the cake.” I have always trusted that they have the recipe, and they baked a cake for me. Surrender to God, surrender to the doctors, and embrace peace and savor it.
Another hard part is realizing your life is not your own. You have to accept that. If you try to micromanage every detail, you are not going to make it. I was an advocate to a point, and my wife and daughter were advocates too, but a lot happened because we trusted the wisdom and experience of the doctors. You can fight that truth or surrender to it. I surrendered, though it was not always easy.
Surrender to God, surrender to the doctors, and embrace peace and savor it.
Thank you to Kura Oncology for their support of 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.
Stephanie’s Stage 2B ALK+ Non-Small Cell Lung Cancer Story
Stephanie’s stage 2 lung cancer story began with a mild, intermittent cough in the spring of 2021, which she dismissed as allergies or weather-related. When her cough persisted, she mentioned it during a routine check-up with her general practitioner. After a chest X-ray, a mass was discovered on her lung. This led to a CT scan, which revealed a spiculated mass (having spikes or points on the tumor surface), raising concerns about cancer.
The diagnosis came after a bronchoscopy, which confirmed the mass was cancerous, specifically adenocarcinoma, a type of non-small cell lung cancer. She underwent a lobectomy, during which her surgeon removed two lobes of her lung to ensure all cancerous tissue was eliminated. Stephanie was subsequently diagnosed with stage 2B lung cancer. The pathology report confirmed that her lymph nodes were cancer-free and that she had clean margins with no signs of vascular or pleural invasion.
Following her surgery, Stephanie learned she was ALK-positive, a genetic mutation associated with non-smokers and younger lung cancer patients. Due to this, her treatment plan included chemotherapy and targeted therapy. After completing four rounds of chemotherapy, Stephanie was advised to begin targeted therapy, which is typically used in stage 4 cases but has shown potential benefits for earlier-stage patients, like her stage 2 lung cancer. Stephanie decided to follow this advice and has been on targeted therapy since completing chemotherapy.
Stephanie’s motivation throughout her diagnosis and treatment has been her young daughter. She remains dedicated to doing everything to stay healthy for her family. While she has had clean scans and blood work for the past three years, she continues to take her medication daily, hoping it prevents the cancer from returning. She advises others to know their biomarkers, seek second opinions, and join support groups for personalized guidance and support.
Name: Stephanie W.
Age at Diagnosis:
37
Diagnosis:
Non-Small Cell Lung Cancer
Staging:
Stage 2B
Mutation:
ALK
Symptoms:
Persistent cough
Wheezing
Treatments:
Surgery: bilobectomy
Chemotherapy
Targeted therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
Filipe’s Stage 4 Lung Cancer with EGFR exon 19 Deletion Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Filipe was diagnosed with stage 4 lung cancer at 36. He reflects on the challenges and critical decisions that shaped his treatment path. Being a nonsmoker, he was shocked by his diagnosis following a severe headache that prompted a brain MRI, revealing multiple metastases in the brain and a primary tumor in the lung. Despite disbelief and seeking second opinions, doctors confirmed the advanced stage of his condition.
The treatment began with brain surgery to address a 4 cm metastasis. Biomarker testing revealed an EGFR mutation, enabling targeted therapy that initially worked well. However, disease progression after nine months necessitated further interventions, including chemoablation for kidney metastases and SBRT for lung activity. Eventually, a new line of treatment with a bispecific antibody offered hope when options dwindled.
Managing side effects became a significant focus, especially as the current treatment led to severe skin issues and nail problems. Adjusting the treatment schedule provided some relief. Emphasizing the importance of second opinions and advocating for personalized care, Filipe highlights the need for patients to be informed and assertive. Despite setbacks and fears of running out of options, he remains hopeful, crediting research and innovation in lung cancer treatments for extending his life.
Name: Filipe P.
Age at Diagnosis:
36
Diagnosis:
Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
EGFR exon 19 Deletion
Symptom:
Headache
Treatments:
Surgery: to remove brain metastasis
cryoablation: to remove kidney metastasis
Targeted therapy
SBRT
Bispecific antibody
Thank you to Johnson & Johnson for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I was diagnosed with stage 4 lung cancer at the age of 36. I’m married and I have a daughter. I have electronic hobbies.
Before my diagnosis, life was well. I was an IT systems administrator for an insurance company. My daughter was five years old when I was diagnosed.
The MRI revealed seven brain metastases and a 4 cm metastasis on the back of my head.
How I Found Out I Had Lung Cancer
I used to say I’m healthy all the time. I don’t have behaviors that justify my diagnosis, so it was a shock.
I was very lucky because my diagnostics took one day. When I had a headache, I went to the doctor and the first thing the doctor asked me to do was a brain MRI. When I was in the MRI machine, the technician asked me to wait because he wanted to call the doctor. I asked him why because the result takes at least one week. He said the doctor needed to see it.
The MRI revealed seven brain metastases and a 4 cm metastasis on the back of my head. For the doctors, it was very easy to diagnose because there was evidence. I had brain surgery two weeks after my MRI. They told me that the primary cancer would probably be lung because lung cancer usually metastasizes to the brain very quickly. They did a CT scan and biopsied the primary site and confirmed that I had stage 4 lung cancer.
At the appointment with the doctor, my wife was with me. When he said that it was cancer, I didn’t want to believe it because I never smoked in my life. I was healthy. I usually don’t go to the doctor, so it was very awkward for me. I started thinking about second opinions, but the doctor said there was no doubt about it. It was a shock.
Preparing for Brain Surgery
I went to the hospital. They double-checked everything with a CT scan and confirmed that it was lung cancer.
The first CT scan showed lesions on my liver. Fortunately, it was benign, but they found cancer in my bones, my left lung, and my head. They told me that I needed brain surgery right away because the 4 cm metastasis on my brain wouldn’t go away with other therapies. The brain is the last place a patient wants to have surgery.
The doctor said it was a very easy surgery. When they removed the bone, they were able to immediately take it out.
I started at a private hospital where I was diagnosed. They wanted me to undergo radiotherapy for my brain. I asked for a second opinion at a cancer center and they said the brain metastasis would not respond to radiotherapy and that I needed to have brain surgery. Because I’m a nonsmoker patient, I will probably have a mutation and if I’m eligible to undergo targeted therapy, usually the metastases respond very well to this kind of therapy.
I started to be treated at the cancer center. I had brain surgery to remove the biggest metastasis. After it was confirmed that I had the EGFR mutation, I started with a targeted therapy that’s very common for EGFR patients.
Second opinions are very important. There is a small margin of error in this disease. If you don’t choose the treatment well, you may not be able to choose another treatment. Listening to the doctors is very important. Get a second opinion or even a third opinion.
There were no other options for me at the time. I was very lucky because the metastasis was on the surface, so the doctors didn’t need to navigate into my brain to remove it. It only took 50 minutes. The doctor said it was a very easy surgery. When they removed the bone, they were able to immediately take it out. They didn’t need to do a whole lot.
Brain surgery is tough to think about, but it needs to be done. I wrote a letter saying goodbye to my family for them to open in case I die. Fortunately, everything went well and 24 hours later, I was standing up and walking.
Learning About Biomarkers
At the time, I didn’t understand why biomarkers were so important. Knowing your biomarker will define what kind of treatment you can have. It’s an expensive exam, but it’s very much needed because the biomarker will allow you to choose the best treatment for your cancer. The biomarker could save your life.
Targeted Therapy Worked for Nine Months
The average progression-free survival of the targeted therapy that I underwent is 18 months. I had a very short run. It only worked for nine months. The first few months were very good because it cleared four brain metastases. It also cleared my bone and reduced the cancer in my primary site.
After three months, I started to have early progression. A metastasis appeared in my kidney. We did a needle biopsy and a biomarker test to confirm if it was the same cancer because it’s very unusual for lung cancer to metastasize on the kidney. When it was confirmed that it was the same cancer, we did cryoablation on the kidney. We froze the metastasis with argon to kill the cancer cells. I also had SBRT on my lung because my lung started to have activity on the primary site based on a PET scan.
After nine months, in August 2023, I had severe progression. At the time, I had no other options on the market.
Knowing your biomarker will define what kind of treatment you can have.
Finding Another Line of Treatment
I was very lucky because my current treatment, which is a bispecific antibody, is only used for EGFR exon 20 and I am exon 19. I was very lucky because I had no options left. Amivantamab appeared and I had a great response to it.
I was very lucky because the drug came out. It’s frightening to think about running out of options and only relying on drugs that aren’t effective for your disease.
It’s similar to the sensation of when you receive the diagnosis thinking that you’re going to die, but this time, I have more information. I know exactly what my options are and even though they’re very few, I’m more aware of what’s happening. In the beginning, everything is new and you start to collect more information. But when I had the progression, I knew exactly what was going to happen.
Side Effects of the Current Line of Treatment
With targeted therapy, you can take one pill a day at home and have a normal life. With amivantamab and chemotherapy, you need to stay at the cancer center for six hours every three weeks. It’s not targeted, so it attacks the cancer cells but also the healthy cells, so you need to deal with the side effects.
It’s not as comfortable as targeted therapy. You need to reorganize your life according to the infusion days. If the toxicity is too high, I can postpone for one week, so sometimes I do four-week intervals instead of three. The major side effect is the skin and that’s why I have these pimples all over my body. I also have a lot of nail problems.
The side effects started to manifest weeks after taking the drug. It started with pimples and because I’m on blood thinners as well, everything was full of blood. After two or three months, I reached the peak of my side effects, and the side effects started to smoothen. Right now, only the nails are my major problem.
I used to have various scalp problems, pimples, and blood, but after almost 11 months, it’s only the nails and scalp. I control it with topical corticoids. I used to put a lot of cream, but it wasn’t enough. I need to take corticoids when I have treatments; otherwise, the skin becomes very red and has sunburn-like pain.
The rash is very tough because, for example, when I take a bath, I cannot use a towel and rub my skin. After all, it hurts a lot. I need to dry it very carefully with a towel. I stopped wearing white because you will see blood sometimes. The pain is also associated with that. Sometimes I’m unable to do normal things when I experience the peak of my side effects. For example, I cannot wear sneakers because it’s closed and I have nail problems on my feet, so I wear flip-flops all the time. The main problem is it doesn’t heal. Whatever you do, it doesn’t heal 100%. It can get better, but it never heals.
The toxicity starts to accumulate. In the beginning, it’s only one or two nails. Nowadays, it’s all of them. I only have one finger without problems. The rash is tough, but at some point, it starts to be manageable because you know your body, so you know what to do and know to avoid some troubles.
I’m a stage 4 lung cancer patient with brain metastasis. Forget the skin.
Communicating with My Doctors About the Side Effects
Doctors need to be careful with how to deal with their patients. They usually say that if they cannot control the side effects, treatment may be stopped and the patient starts to hide their side effects because they’re afraid of stopping treatment.
My dermatologist told me that in the beginning. If my skin becomes very bad, we need to stop treatment. I asked her, “What is the threshold?” I’m a stage 4 lung cancer patient with brain metastasis. Forget the skin. I started to understand when things go very bad with the rash and why we may need to stop treatment.
Treatment can be flexible. Instead of every three weeks, you can do it every four weeks, like I do now. One week can make a lot of difference for patients. A patient needs to know that everything is flexible.
I’m very happy with my current doctor, who’s my third doctor. You need to advocate for yourself. With all due respect, doctors need to understand that they are working for us and not the other way around. The patient has the power. He can stop treatment. He can postpone treatment. It’s our life, so we have a say and we need to be heard. Otherwise, we can change the doctors or change the medical team. Everything can change.
The Fear of Running Out of Treatment Options
Running out of options is scary. Research is very important. Without research, people would run out of treatments. Treatment can save lives. I’m an example of that. I believe that if it wasn’t for the drug I’m currently on, I wouldn’t be here, so it’s very important to have options.
Cancer is a monster, but there is hope.
My Biggest Advice for Lung Cancer Patients
There has been more development in lung cancer in the last five years than in the last 50, so there are a lot of things happening. Don’t look at the statistics. The data online is outdated. There is a lot of hope. Cancer is a monster, but there is hope.
Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.
At 37, Samantha was diagnosed with HER2 non-small cell lung cancer. Her symptoms started with a cough and chest pressure, so she went to urgent care. A cancer diagnosis was one thing, but a lung cancer diagnosis with no smoking history was mind-numbing to her. This is Samantha’s story of navigating a lung cancer diagnosis young and discovering a rare biomarker too.
Name: Samantha M.
Age at Diagnosis:
37
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
HER2
Symptoms:
Persistent cough
Chest pressure
Fatigue
Weight loss
Treatments:
Chemotherapy
Immunotherapy
Thank you to Bayer for its support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I went on a women’s trip in March 2024. When I came back from the trip, I developed a cough and noticed some pressure on my chest.
Introduction
I was born in California, raised in Hong Kong and the UK, and went back to the US around 12 years ago. I’m an active, outdoor adventurer. I love hiking, backpacking, camping, and anything to do with nature and being outside.
My husband Justin and I have been married for seven years. He is my absolute world and soulmate. I also have a nine-year-old German Shepherd.
Pre-diagnosis
Initial Symptoms
I went on a women’s trip in March 2024. There were 20 of us going on this adventure together even though I had never met them before. We were going to travel to India for 10 days. Before the trip, everything felt completely normal.
When I came back from the trip, I developed a cough and noticed some pressure on my chest. The air is not the best in India. A lot of people developed a cough, so I didn’t think anything of it, but the chest pressure was bothering me.
Two weeks after my trip, I was still hiking 4 to 5 miles a day, but there was a lot of pressure going on. I went to urgent care where a doctor listened to my chest and said, “Let’s do a chest X-ray to see what’s going on.”
The results showed that my entire left lung was full of fluid and fully collapsed. He said, “You need to go to the emergency room immediately.” I was still very naive then, thinking it was something I contracted from my trip.
They said, ‘We had a chance to look at a biopsy of one of the lesions in your liver and the fluid in your lungs, and it’s looking to be more and more like cancer.’
Diagnosis
Getting a Cancer Diagnosis
I went to the emergency room and they admitted me right away. They put in a chest tube, which was not a pleasant experience, and ended up draining 3 liters of fluid from my lung. They took that off for testing and did multiple CT scans. Even though I was admitted to the hospital, I was getting information about my scans through the apps. My result came through before the doctor even spoke to me. It said multiple lesions on the liver and lungs.
The infectious disease doctor came in and started asking me a ton of questions. They thought I might have tuberculosis because I’d lived and traveled to a lot of foreign countries, so they were very confused and running tons of tests.
Unfortunately, on day three of the hospital admission, they said, “We had a chance to look at a biopsy of one of the lesions in your liver and the fluid in your lungs, and it’s looking to be more and more like cancer.” They couldn’t give me a guarantee at that point, but this was looking like it. They said, “We’re going to discharge you. We’ll wait for confirmation, but we’re lining up an oncology appointment for you right away.” That’s when my world spiraled.
Playing the Waiting Game
We were living in Missoula, Montana, where my husband was stationed. The wait for the general oncologist was two weeks. There was no specialist there. After all, it was such a small town. That period was awful. It was confirmed through the app that I did have cancer, but I had no doctor to bounce anything off or ask questions.
At that point, it didn’t say what stage I was, and not being too familiar, I didn’t know what stage 1 versus stage 4 meant. I had no idea. I didn’t know anything other than I had non-small cell lung cancer.
I was spiraling on Google, which is not your best friend at this time of diagnosis. I figured out I was stage 4 and learned the five-year survival rate. I was doing more digging and came across mutations all this information on mutations.
I was eventually diagnosed with HER2 mutation, which was one I had never heard of.
When I went into that initial oncology visit, I had a list of questions, but the number one was if I could get a biomarker test for genetic mutations. He said, “Absolutely. It was on my list. You’re good because I know a lot of oncologists in these smaller towns are still not aware of these biomarker testing and treat lung cancer when someone could have a targetable mutation.”
I learned a lot about mutations during that two-week waiting period. I was eventually diagnosed with HER2 mutation, which was one I had never heard of. I didn’t come across it on any websites. It was a two-week window of the unknown with the fear and concern that I didn’t have long to live.
At my first oncology appointment in Missoula, he told me that I was stage 4, I was terminal, and had nine months to live. He told me before he even knew what mutation I had. No one should be told how long they have to live like that. It doesn’t help anyone. It set my mind back a long way. It was devastating.
Reaction to the Diagnosis
My husband, who was a 19-year veteran at this point, used to be a combat medic in Iraq and Afghanistan, so he’s seen a lot and I had never seen him cry ever. When I got that diagnosis in Missoula, he went outside the hospital and broke down. That was hard to see and almost harder for me than receiving the news personally. We’re so young. It was heartbreaking because he’s my soulmate. Knowing that I’m not going to be around and be with him when we’re 80 years old is gut-wrenching.
It hit him hard. He’s been an incredible caregiver. He’s been to every single appointment. He now handles the app for me and looks at all of my results. He’s been exceptionally supportive. I couldn’t ask for a better caregiver, but I would say it’s probably had more of an impact on him than on me.
Honestly, I had a breakdown… I thought that was the end of my journey because there was no primary targeted treatment for HER2.
Seeing a Lung Cancer Specialist
My husband said, “We’ll see this oncologist here, but let’s get you to a research hospital. Let’s see if the army will move us.” Within a month, the army approved the move. We were 45 minutes away from the Huntsman Cancer Institute. They have been so supportive and my work has also been so supportive.
I’m very grateful because I know a lot of people are not in that situation, especially those who are young, have cancer, and work full-time jobs. We put our house up for sale and within a month of my diagnosis, we had fully moved to be settled and to see a lung oncologist in Salt Lake City.
I learned to advocate for myself constantly. I was pretty forceful in messaging the Huntsman saying, “I need to get in as soon as possible. The general oncologist referred me. This is their letter.”
I was fortunate to get the best thoracic oncologist at the Huntsman. They looked at my chart and saw the severity of my stage 4 diagnosis. They got me in very quickly and wanted to redo my scans. They did a CT scan and a PET scan, which I hadn’t had at that point. They said, “We’re sending biomarker testing off the blood and also take a sample from Missoula and submit that as a tissue sample.”
They didn’t want to start any treatment until my biomarker test results came back, which took about two weeks. Meanwhile, my lung was continuing to fill up with fluid, so I had to get drained regularly. I was still active and nothing was stopping me. I was hiking at 10,000-foot elevation and I had no issues, but I felt very, very tired.
My biomarker test results came back and said HER2. I had never heard of HER2 in my life. I thought, “What on earth is this? What am I going to do with this?”
Honestly, I had a breakdown because I had been part of groups that talked about EGFR and ALK, all these great drugs, and people doing so well as young people on these targeted therapies. I said, “This is it. I keep on getting hit over and over again with bad luck and this is the final straw.” I thought that was the end of my journey because there was no primary targeted treatment for HER2.
Learning About the HER2 Biomarker
I started researching on Google, which wasn’t the best idea because when you search lung cancer and HER2, it says you do not have a very good prognosis at all and that wasn’t what I wanted to hear. That and not seeing anything about a primary targeted therapy was heartbreaking.
Finding Hope While Learning from Other Patients’ Experiences
I was introduced to someone who is part of an exon 20 group. I spoke to her within 24 hours of knowing that I had HER2 and she spent about an hour explaining everything: what was on the horizon as far as treatment was concerned, what was currently under clinical trials, and all of this hope.
I went from absolute turmoil, thinking this was literally the end, and that I have the worst prognosis to there could actually be some hope here and that changed my entire attitude. A lot of HER2 patients, when they find out about their mutation, aren’t told about the hope. They aren’t told about what’s coming. People have no idea unless they’re educated by other people.
I wanted to start treatment, so we decided on traditional chemo and immunotherapy and started that within a week.
Treatment
Treatment Options for HER2 Mutation
My oncologist is incredible. He called me right away and said, “Look. This isn’t what I was expecting either, but this is what we have.”He was trying to find silver linings. He said, “You have to come in every three weeks to get treatment, but your mutation works with immunotherapy. Your mutation can work with traditional chemo.” He was giving me some hope and that’s all I needed to hear.
He wasn’t an expert in HER2. I don’t think he has any other HER2 patients, but I was also fortunate because my coworker’s husband’s best friend is a HER2 expert and he’s been an incredible resource who I can text and get information or reassurance. Having those two resources has been invaluable.
My oncologist laid out what chemotherapy and immunotherapy I would be on. He also offered up a clinical trial, which split chemo and immunotherapy separately by a week, instead of combining them for a couple of rounds. He thought that I would be a good candidate.
Meanwhile, the HER2 expert who I was talking to was telling me about an amazing clinical trial for a drug for HER2 that was looking for people who had not been treated yet.My oncologist didn’t know about that trial, so I brought it up with him and he was kind enough to look into the research, look into the statistics, and weigh the options for me.
He said, “At the end of the day, it’s up to you which one you would like to proceed with, but here are my thoughts.” He was leaning towards traditional chemo and immunotherapy because immunotherapy had foundational success in the long run. The clinical trial was still in its early days in knowing what the outcome would be in the long term.
I also didn’t want to wait. Joining a clinical trial in another hospital involved flying, getting scans again, etc. I wanted to start treatment, so we decided on traditional chemo and immunotherapy and started that within a week.
As weird as it is to say this as a stage 4 cancer patient, chemotherapy and immunotherapy can do wonders.
Response to Treatment
I was responding extremely well and I’m very fortunate that I don’t have that many side effects at all. I have a couple of days of low energy, but other than that, I have been able to live my life, hike, and work.
I spoke to my husband and as weird as it is to say this as a stage 4 cancer patient, chemotherapy and immunotherapy can do wonders.There’s a horrible misconception that chemo and immunotherapy are awful and they don’t do anything. I get very upset about that because it has changed my life and has done amazing things for my body. I haven’t felt this well in years.
Looking back, even though I didn’t have very apparent symptoms, I was tired all the time.I would take naps during the day. I would be exhausted after 10 hours of sleep. I lost five pounds when I’ve never lost weight in my life. There were very subtle signs and if you look at pictures of me, I didn’t look well.
I’m feeling great right now. It’s like a double-edged sword because I have stage 4 cancer,but the chemo and immunotherapy are reducing my cancer burden so much that I feel like normal Samantha again.
Having Hope with a HER2 Biomarker
There’s a lot of hope. A HER2 mutation is not an immediate death sentence by any means. We don’t have a targeted therapy right now but that doesn’t mean it’s the end of the line. There are options out there.
Knowing that there are targeted therapies coming out very soon through clinical trials with statistics that show that they work exceptionally well is invaluable.
There’s a lot of hope. A HER2 mutation is not an immediate death sentence by any means.
Words of Advice
You see online that if you eat healthy and you exercise, there’s a very low chance you’re going to get cancer and I don’t like that at all. It makes me very angry and very upset because that makes people who are fit and healthy and doing all the right things think that they’re notgoing to be touched by cancer.
People must be aware that cancer does not discriminate. It doesn’t care if you’re fit and healthy. It will be in whoever it wants to be and that’s a fact.
Listen to your body. Be in touch with changes. If you have a lump, if you have a weird cough that has continued for months, if you have a weird mole that you’re not sure about, don’t wait.
If your gut is telling you something is wrong and your doctor says it’s fine and not to worry about it, get a second opinion. Push and be that person and getthe answers you need to get. You have to advocate for yourself.
Special thanks again to Bayer for its support of our independent patient education content. The Patient Story retains full editorial control.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
