Author: Chris Sanchez

From Shock to Strength: A Young Mom’s Follicular Lymphoma Story

Post author By Chris Sanchez
Post date January 31, 2025
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January 31, 2025

From Shock to Strength: A Young Mom’s Follicular Lymphoma Story

Courtney shares her journey facing grade 3B follicular lymphoma, diagnosed in 2022, and her subsequent treatment and ongoing battle with the disease. Initially, she experienced severe back pain, sinus issues, and fatigue, which led to her diagnosis of follicular lymphoma after a visit to urgent care revealed a large mass in her chest. That diagnosis was a shock to her and her husband, with Courtney feeling overwhelmed while her husband took charge of scheduling appointments and managing logistics.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Courtney started chemotherapy soon after her diagnosis, enduring 6 rounds of treatment. The process was grueling, and she vividly recalls the emotional and physical toll it took, including the distress of losing her hair. Despite the hardships, she acknowledges the critical role her care team played, particularly her oncologist and the doctor from urgent care, both of whom provided essential support.

After treatment, Courtney reached remission, but the high-risk nature of her disease requires her to be vigilant about her health. She has regular check-ups and contemplates possible future treatments like CAR T-cell therapy. Throughout this journey, she emphasizes the importance of community support, expressing deep gratitude for her family and friends who have been there for her, and who have provided welcome emotional and practical assistance.

Courtney also discusses the psychological impact of her diagnosis, sharing her need to talk about cancer as a way to cope and bring awareness. She hopes that by sharing her story, others will understand that cancer can happen to anyone and stresses the significance of early detection.

Looking forward, Courtney remains hopeful, drawing strength from advancements in medical research and the support of her loved ones. She advises others in similar situations to document their journey, capturing every moment, because it becomes an integral part of their identity. Her message to others is one of resilience and hope: while cancer is challenging, it is not insurmountable, and individuals can find a way through it with the right support and mindset.

Name:
- Courtney L.
Diagnosis:
- Follicular lymphoma
Grade:
- Grade 3B
Initial Symptoms:
- Intermittent back pain
- Sinus issues
- Hearing loss
- Swollen lymph node in neck
- Difficulty breathing
Treatment:
- Chemotherapy

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

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

Table of Contents

Introduction
Pre-diagnosis
- Initial symptoms
Diagnosis
Reaction to the follicular lymphoma diagnosis
Treatment for follicular lymphoma
- Loss of hair
Post-treatment
The importance of community
Advice Courtney offers
More Follicular Lymphoma Stories

Follicular lymphoma is not the end of the world.
It might feel like it, but it isn’t.

Introduction

My name is Courtney and I currently live in Wisconsin.

I was diagnosed in 2022 with grade 3B follicular lymphoma. I also have a triplet mutation.

Pre-diagnosis

Initial symptoms

I really didn’t start feeling sick or off for too long. My first sign that something wasn’t right was just 2 months before my diagnosis, in December 2021. I started having really bad back pain. It wasn’t present all the time, but when I did have it, it was severe — sharp, stabbing pain in the shoulder area.

I also started having shortness of breath and a lot of sinus issues. My nose was draining constantly. No amount of blowing would stop it. I also began to lose hearing in my left ear. I’d wake up in the morning and would be basically deaf in my ear. And then it would take a couple of hours to get the hearing back. And then that cycle would just repeat.

I also started to feel very tired, and talked about it to one of my coworkers at one point. I said, really wish I knew what was going on, because I shouldn’t be this tired.

One night in January, I woke up out of a deep sleep, and I can’t recall what woke me up, but I remember thinking, oh my gosh, I think I had a stroke. The next morning, I told my colleagues about it, and one of them took me to the emergency room. There, they scanned my brain and head, and they diagnosed me with a complex migraine and a panic attack. Because I have a history of anxiety and migraines.

Some time after that, I took a trip to Mexico. I woke up one morning, and I had a huge swollen lump on my neck, and nobody knew what it was. And I spent that whole week Googling “swollen neck” and trying to find out what it could possibly be. Plenty of what I found online said it could be cancer. But I convinced myself that it wasn’t, because the internet is going to tell you the worst thing.

But then I began to struggle to take the stairs — even just one flight of stairs was a challenge. And then even when I got back to Chicago, the pain continued to be a concern. I told myself, I’m going to go to urgent care because I go back to work on Monday. If I don’t go now, I’m not going to go. So I went to urgent care.

Diagnosis

When I was at urgent care, the doctor did some lab tests, and then sent me to the hospital. She told me, you should just go get a scan so we can just see what it is. She added, I will call you personally in a couple of hours to give you an update. So my labs came back while I was waiting for the scan. My platelets were slightly high, and everything else was fine.

But she called me a couple hours later — and she said that there was a large mass in my chest. She didn’t even tell me about my neck. You have to go back to the hospital, she said. At that point, I still didn’t know that meant cancer.

So, on February 12, 2022, I went to a different hospital to be admitted. The radiologist met me in the lobby and brought me directly to my room. And there he told me, you have follicular lymphoma.

I went, I don’t know what that means. He explained it, and then tried to reassure me by saying that I met the criteria for Hodgkin’s lymphoma, “the good kind”, thanks to my age and gender, and he said that I could have the mass biopsied in the morning. So I had some sense of hope.

But as it turned out, none of that was accurate, and I ended up with a kind of non-Hodgkin’s lymphoma instead. Mine is an aggressive, rare, incurable kind of cancer.

I can’t not talk about cancer.
It’s a part of me now. It’s a part of who I am.

Reaction to the follicular lymphoma diagnosis

When we received the diagnosis, my husband and I were just in shock. But between the two of us, he’s the one who rallies when he receives tough news, and I’m the one that falls apart. I might not feel like getting out of bed or the shower, I might say that I’m down, I’m done, I need some time.

So rally he did. He was at the counter scheduling the appointments. He was taking time off from work to drive me around. I didn’t have to worry about any of that, which was good because I couldn’t do it at the time. So that was great. That was everything that I needed.

As for my kids, I hate that for basically their whole lives, I will be sick. They’re not going to know any differently. But it will be all they know because they were so young when this all began. To look at it like in a good light, they were so young at the outset that they didn’t really know the difference.

Treatment for follicular lymphoma

After my diagnosis, there was no time to waste. They told me I needed chemotherapy right away. And I didn’t really have a choice — I mean, of course I could say no, but if I did, I was going to die. Within the 2 months that they thought that I had cancer, it had spread over my entire body.

I only remember a couple of things about the initial appointment at the cancer center, because I was still on pain mediciness back then. I couldn’t retain anything from that time because of my meds. I’m so thankful for my care team, my oncologist and the doctor who initially saved my life in urgent care. She’s now my primary care doctor. They are my people, they are everything to me.

I had surgery on the 13th of February. I had my PET scan, my port placed, and my bone marrow biopsy done, all within days. And then I started chemotherapy within a week.

I did a total of 6 rounds of chemotherapy. And although it was okay at first, after that, it wasn’t fun. It didn’t feel good. I would go home after my treatment, and that’s where I would get pretty sick afterwards. If I wasn’t at the cancer center, I wasn’t getting out of bed. But I think everybody who takes chemo responds to it differently.

Looking back at it, I wish they could have given me a checklist, some sort of record that I can refer to, because you want to remember experiences like that, you want to go back and know what you went through. But I do recall looking back and realizing how distraught I was. I was a wreck. And I also remember saying — am I going to die? I do know now that cancer is not a death sentence if you catch it early enough.

I did ask for statistics, numbers, but the doctor didn’t have them. She did say, though, that I would lose my hair. And that made it worse.

Why me? And why at this age? I don’t think I’ll ever stop thinking and asking that.
But it’s not just about me.

Loss of hair

The nurse practitioner I spoke with did the cancer 1-on-1 with me. She said, you will lose your hair with this. And that’s exactly what happened.

I woke up one morning after the first cycle, and my hair was just coming out. All I needed to do was touch it and it would come out in clumps, just clumps at a time. And that was really difficult for me because I have a lot of long hair.

We ended up just shaving it off. If I didn’t, it would hurt like crazy.

It was one of the worst days. But the hair does grow back.

Post-treatment

After my 6 chemotherapy rounds ended, I was thankfully in remission. But my follicular lymphoma is extremely high-risk, and this has affected my life even after my chemotherapy has concluded.

My last appointment or couple of appointments would have been 2 years out from the initial chemo session. My oncologist seemed to be on the verge of saying that we could start to space out the appointments since I was already at the 2-year mark, which is a big thing for us cancer patients, and maybe we could start seeing each other less. But then he checked himself and said, we can’t change your treatment schedule, because you really are too high-risk.

So now I’m 2 and a half years out from chemo, and that’s just great. But it does take a toll on me. Some days I feel that at my next check I’ll find that I’ve relapsed. Other days I’m more positive and I think, look, I’ve made it this far, I’ve beat all the odds.

It’s hard, it just depends.

Coping with her situation and helping others

When I’m having a really bad day, I let myself have a bad day. I know when my situation is overwhelming me. And when it comes to that, I just talk about it.

I can’t not talk about cancer. It’s a part of me now. It’s a part of who I am. And I don’t know if my need to talk about it is due to fear for other people or fear for myself.

The research out there says that it’s devastating for people my age. It’s a matter of catching it before it gets too late. So I want to bring awareness to the people around me who don’t think that cancer can touch them.

I used to not know what cancer was. Cancer is cancer, I thought, there’s no differentiation between the different sorts. Boy, was I wrong. There’s so much I don’t know about it yet.

So I try to talk about it in a way that can help other people, not just myself.

I have so many people around me whenever I need them.
I couldn’t ever have done this by myself.

Being diagnosed with cancer at a young age — and looking forward

Why me? And why at this age? I don’t think I’ll ever stop thinking and asking that.

But it’s not just about me. I also want to know why lots of people around me have been diagnosed with cancer recently, all different kinds of cancers. And none of them are better or worse than the other one. Some of my friends who have been diagnosed with different kinds of cancer have gone through worse treatments than I have. And hopefully, they will be cured.

I end up thinking, at least I don’t have to go through all those treatments like they are. But my case is different. The next step for me is a transplant, not more chemotherapy. I did ask about maintenance chemo and they said it wouldn’t be any more beneficial. I asked about genetic testing, too, because I’d also like to know if my kids need to be worried about this.

I’m young and I think my youth has helped me a great deal. My age has been on my side in this struggle. I also do know that grade 3B follicular lymphoma itself is extremely rare and is not treated as a normal lymphoma. And that’s where the difficulty lies. Determining the next steps and even navigating life itself now.

You don’t get many 30 year olds who have gone through this before. At my halfway chemo point, some people might have been clean at that point, and we were shocked that I hadn’t made progress. But I have hope that things will change. I see lots of research happening all the time across different areas. And though it is such a small percentage of people that have this, and the research isn’t being funneled my way, I hope that my time will come.

For example, I recently learned about CAR T-cell therapy. I got excited at the thought that maybe this would be my next step if I did relapse. It’s FDA-approved worldwide. It could work for me. So I have hope.

The importance of community

I have so many people around me whenever I need them; I couldn’t have ever done this by myself. I don’t think anybody can, so I just feel very lucky for all of it.

You can’t do this alone. And I am very lucky for everybody that I have around me, that listens to me, that lets me talk, lets me cry. That gives me a hug when I need it. That drops everything for me, takes me to appointments. My husband, my kids, my family, my friends, everybody.

I just I get emotional thinking about thinking about them all. I really am very lucky.

I don’t want to discount the things that I’ve gone through.
Because my experience wasn’t pleasant, but I’m all the better for it.

Advice Courtney offers

Record everything, including the first appointment, because you’re not going to remember it. Record yourself. Take photos. Even now, my brain doesn’t remember everything, so I keep on recording.

I don’t want to forget this part of my life, because it’s who I am now. I don’t want to discount the things that I’ve gone through. Because my experience with follicular lymphoma wasn’t pleasant, but I’m all the better for it.

I just hope that even 1 person hears me eventually and understands that it can happen to you, even if you don’t know what follicular lymphoma is and that there are different kinds of lymphoma, or even if you’re not aware of the basics of cancer.

Follicular lymphoma is not the end of the world. It might feel like it, but it isn’t. Yeah, you can be okay.

Special thanks again to Genmab for their support of our patient education program! The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Courtney!

Inspired by Courtney's story?

Share your story, too!

Initially, Nicola experienced rectal bleeding. Doctors thought it was nothing more than hemorrhoids, but eventually, they conducted a colonoscopy. The surgeon found a 4-cm tumor and performed surgery just before Christmas, and also discovered that 4 of her lymph nodes tested positive for cancer cells. She then underwent adjuvant chemotherapy, which is treatment to keep cancer from returning.

With no significant family history of cancer, although her father also had bowel cancer, Nicola’s case involved a non-BRAF, wild-type adenocarcinoma. Her chemotherapy initially made her very sick, leading to weight loss and hospitalization. Eventually, she switched treatments and completed 5 rounds before doctors declared her NED (No Evidence of Disease) for her stage 4 colorectal cancer.

Months later, Nicola began to experience symptoms such as profound migraines and vision changes. These led to the discovery of a large brain tumor; her original cancer had metastasized to her brain. She promptly underwent a craniotomy, which was deemed successful. Afterward, she received targeted radiation therapy, which thankfully did not significantly affect her vision.

Nicola remains under high-risk monitoring. She advocates for personal vigilance and early testing, sharing that she might have pushed for a colonoscopy sooner despite her age, had she known that younger people can get colorectal cancer. Now, she focuses on being present with her family and friends, and cherishes each day with gratitude.

Name:
- Nicola H.
Diagnosis:
- Colorectal cancer 2020
- brain cancer
Staging:
- Initial stage 3 in 2020
- Metastasized to her brain in 2021 (stage 4)
Initial Symptoms:
- Bleeding, pain (Colorectal cancer)
- Focal migraines (Brain cancer)
Treatments:
- Chemotherapy (Colorectal cancer)
- Radiation (Brain cancer)

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

Thank you for sharing your story, Nicola!

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Scott’s Stage 3 Rectal Cancer Story

Scott’s stage 3 rectal cancer diagnosis stemmed from an annual physical where his doctor discovered blood in his stool. A follow-up colonoscopy revealed a tumor, even though he showed no other symptoms. This marked his second battle with cancer, having previously overcome testicular cancer in 1988 through surgery and radiation.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Scott emphasizes the importance of trusting his medical team and their treatment strategies. During his second cancer journey, the COVID-19 pandemic added complications. Despite initial fears about visiting healthcare facilities, he felt safer at his treatment center, the White Plains Cancer Center, due to the strict precautions in place due to the pandemic. His treatment began with chemotherapy, which eliminated the tumor before surgery became necessary. Though he managed chemotherapy with minimal side effects, radiation in 2021 proved more challenging, causing significant weight loss.

In April 2023, scans revealed lingering rectal cancer cells, requiring surgery. Scott underwent ileostomy surgery, lived with an ostomy bag for three months, and later had a reversal. Despite these challenges, he maintained an active social life, attending live music events even with the ostomy bag. He shares practical advice about handling the bag, emphasizing the importance of not letting it restrict one’s life.

Scott credits his positive mindset as being crucial to his resilience. He utilized visiting nurse services early in his recovery to gain confidence in managing his care independently. By staying focused on treatments and continuing activities he loves, he manages to find joy amidst adversity. His healthcare team, friends, and love for live music have been vital in keeping him motivated.

As a proud 2-time cancer survivor, Scott openly shares his experiences to inspire others. His closing message underscores the mantra that has guided him through both cancer battles: “Trust your team and trust the treatment.”

Name:
- Scott M.
Diagnosis:
- Rectal cancer
Staging:
- Stage 3
Age at Diagnosis:
- 63
Initial Symptoms:
- Blood in stool
Treatment:
- Chemotherapy
- Surgery (ileostomy)
- Radiation

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

Thank you for sharing your story, Scott!

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Diagnosed with Kidney Cancer—Then I Became My Mom’s Cancer Caregiver

Sonia shares her journey of being diagnosed with kidney cancer and the ensuing challenges she faced. She endured fatigue and persistent symptoms before her gastroenterologist finally ordered a CT scan. In December 2021, doctors discovered a suspicious tumor, and by January 2022, Duke Cancer Institute confirmed it as renal cell carcinoma. Despite significant complications, she underwent a successful partial nephrectomy in April 2022.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

As a cancer survivor, Sonia struggled to identify as one, feeling that her experience was possibly not severe enough. Her mom’s stage 4B ovarian cancer diagnosis shifted her role to both survivor and caregiver. Sonia highlights the importance of hope in fighting cancer and believes that it significantly impacts one’s ability to cope with challenges.

Sonia emphasizes the importance of advocacy and not hesitating to seek different medical opinions when necessary. She expresses gratitude for her supportive employer and highlights her youth, as kidney cancer typically affects older individuals.

Sonia advises others to prioritize finding the best care available, noting that the level of care directly affects cancer outcomes. She stresses the importance of support, both from healthcare providers and charitable organizations. Financial concerns also emerged, as her mother’s cancer fight led Sonia to temporarily leave her job, prioritizing her mother’s care over bills.

Sonia encourages focusing on what one can control and letting go of the rest, emphasizing the need to be proactive in seeking the best possible cancer care and support.

Name:
- Sonia B.
Age at Diagnosis:
- 41
Diagnosis:
- Kidney cancer (renal cell carcinoma, clear cell)
Staging:
- Stage 1
Symptoms:
- Fatigue
- Abdominal discomfort
- Constipation
- Flank pain
- Constantly abnormal lab work
Treatment:
- Surgery: partial nephrectomy, ileostomy

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

Thank you for sharing your story, Sonia!

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Rashawn advises others to trust their instincts, know their bodies, and seek timely medical care. By doing so, she believes more lives can be saved, and individuals can live fuller lives despite adversity.

Name:
- Rashawn M.
Diagnosis:
- Colorectal cancer
Staging:
- Stage 1
Age at Diagnosis:
- 37
Initial Symptoms:
- Extreme fatigue
- Blood in stool
Treatment:
- Surgery

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

Thank you for sharing your story, Rashawn!

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Emily’s Stage 4 Colon Cancer Story

Emily, a 32-year-old from Alabama, was diagnosed with stage 4 colon cancer at age 27, despite having led an active and healthy lifestyle since her youth. Initially, she experienced abdominal pain and blood in her stool, which led to a life-changing ER visit. Doctors found a tumor in her colon, determined that it was cancerous, and also found that it had already spread to her lymph nodes. This discovery began a grueling series of surgeries, chemotherapy, and setbacks, including bowel obstructions and pancreatitis.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Emily endured multiple chemotherapy regimens with debilitating side effects like neuropathy, nausea, fatigue, and early menopause. Despite these challenges, her faith and determination kept her strong. When standard treatments failed, she turned to immunotherapy and clinical trials at Dana-Farber Cancer Institute. Although some therapies stopped working, she found hope in a clinical trial medicine that reduced her lung tumors by 20%. Despite the trial’s discontinuation, the treatment remains available to her, for which she feels immense gratitude.

Throughout her stage 4 colon cancer journey, Emily and her husband have relied on their faith, community, and a desire to help others. Recognizing the emotional and physical toll of cancer, they founded Fighting with Hope, a nonprofit that sends free chemo care boxes to patients worldwide. These boxes contain over 20 thoughtfully chosen items, such as blankets, ginger candies, and other sweets to help with port flushes, alongside handwritten notes of encouragement. With support from volunteers and media coverage, the organization has delivered just over 1,000 boxes to date.

Emily’s advocacy also emphasizes the importance of early detection. Reflecting on her missed diagnosis due to her young age, she urges healthcare professionals and patients alike to remain vigilant.

Despite ongoing treatments and the unpredictable nature of cancer, Emily remains a beacon of hope. Her faith provides her with peace and strength, enabling her to inspire others through her story and nonprofit work. She advises fellow patients to fight relentlessly, embrace their support systems, and accept help when needed.

Emily’s mission goes beyond her personal battle. She hopes her journey demonstrates the power of resilience, community, and faith in facing life’s greatest challenges. Through her advocacy, she continues to bring light and support to countless individuals navigating the trials of cancer.

Name:
- Emily K.
Diagnosis:
- Colon cancer
Staging:
- Stage 4
Age at Diagnosis:
- 27
Initial Symptoms:
- Abdominal pain
- Blood in stool
Treatment:
- Surgery
- Immunotherapy
- Targeted therapy
- Clinical trials

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

Thank you for sharing your story, Emily!

Inspired by Emily's story?

Share your story, too!

Thank you to Johnson & Johnson for their 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.

Table of Contents

Introduction
Pre-diagnosis
Reaction to the diagnosis
Finding the best care
The importance of self-advocacy
Treatment plan for IgM kappa multiple myeloma
Her motivation
Her mindset
Creating community
Her life right now
What Krystal wants to share
More Multiple Myeloma Stories

… as hard as myeloma is, you can still come out of it and still rock it.

Introduction

Hi, my name is Krystal. I currently reside in Georgia. I am 42 years old. I was diagnosed with IgM kappa Multiple Myeloma in June 2022.

I am a mother of two beautiful young adult daughters. I am an accountant. I love light hiking, walking on trails, parks, painting, and just spending time with family when I can.

Pre-diagnosis

Before I got diagnosed with multiple myeloma, I was having tachycardia, shoulder pains, heart palpitations, shortness of breath, nausea, loss of appetite, and back pain. My resting heart rate was at 130 beats per minute, which is not normal at all. And these things were not getting better with over-the-counter medicine.

I was also experiencing some weird pop-like sensations. After I felt the first pop, which was on the right side of my chest area, I went to the doctor and they told me that I had probably pulled a muscle. They did do a chest x ray, but that was clear. And after that, the shortness of breath progressively got worse, as well as the heart palpitations.

I went to the doctor again in probably the second week of June 2022, and I got an EKG done. It was normal sinus. And then the next day, I felt another pop, this time on the left side of my chest area. I didn’t go to the doctor because of the diagnosis last time.

About a week after that, I felt and heard a really loud pop in my back and fell to the ground in excruciating pain. Later on that evening, I ended up going to urgent care and they did a bunch of tests and scans. That’s when they told me that it looked like cancer. I was finally diagnosed with multiple myeloma in June 2022.

I just couldn’t put my finger on what was happening to me. I would blame it on things like my age, the fact that I had gained weight, and so on. It was just extremely frustrating because I didn’t have any answers and I couldn’t figure it out. But never in a million years would I have thought it was cancer.

Reaction to the diagnosis

When I heard that, looking back, the first word that comes to mind is devastation. We cried so hard that day. It was just unbelievable. And it really felt surreal — this can’t be happening. There is no way that I have cancer.

My daughters were with me at that time. We were just heartbroken. I think I blanked out at that point, and I don’t really remember anything else until one of the days I was in the hospital.

There was so much I had to learn. I have extensive bone damage, including lesions literally all over my body from the skull, all the way down. So I was confused — how is it a blood cancer? You’re talking about my bones all the time. They did explain it, but there was just a lot going on.

But the doctors really did educate me. And then I was overly consumed with trying to learn about multiple myeloma and read and do my own research.

Finding the best care

I saw a doctor while I was in the hospital, and she is still currently my oncologist. I did also see a multiple myeloma specialist, which is something that other multiple myeloma patients should also consider doing. So I had that team of doctors to support me.

However, that team was not the best. I just feel like the communication wasn’t there, and I really feel like they dropped the ball with me. I also don’t think they were monitoring me as closely as I needed them to.

So now I see another specialist, and this team is awesome. They are really on top of things. I’m getting blood work, bone marrow biopsies, and bone surveys, which are X-rays.

Also, the communication is great. They have different numbers that I can call anytime and I can ask them as many questions as I want. They will call me back. I’m always going to get an answer. If they don’t know something, they’re going to figure it out.

They’re also making sure to monitor me. Right now, it’s not as often as before, when it was as often as every day, even on weekends and holidays.

The importance of self-advocacy

I think self-advocacy is one of the most important things that you can have when you’re dealing with cancer. In the beginning, I was so scared. I didn’t know what was going on. And so I was just going with the flow. But I’ve been in the game for a couple of years now, and so I’m asking all the questions.

You just have to speak up. I mean, let the doctors know how you feel. If you don’t want to do something, let them know and discuss it with them. And maybe there are other options. They should be talking to you about those things.

It’s your body and it’s your life, and you deserve the best. I mean, it is so hard going through this, and you need to have a team that you feel like is for you, and who’s going to support you no matter what.

I’ve talked to my specialist about getting the vaccines again. I’m on the fence about that. And she said, that’s okay. If you don’t want to, you don’t have to. She explained to me, it’s about exposure and you might have to do some lifestyle changes, but if you don’t want to, you don’t have to. And I love that.

Definitely speak up. I know, sometimes it can be intimidating, but you just have to. You’ll get used to it.

I keep going and fighting because I love life and I want to be here.

Treatment plan for IgM kappa multiple myeloma

Chemotherapy

I first started intravenous chemotherapy in August 2022. Initially, I would have to go twice a week for that IV chemo, and each session took about 4 hours or so. I wasn’t doing well in the beginning, so I did pills as well, daily for 21 days and then off for a week.

I didn’t feel really bad. I mean, I was sleepy because I had pre meds. And then after the second treatment, I was starting to feel better. And so then after that, I just got better and better.

However, I ended up relapsing at least 2 or 3 times. And usually when I relapse, I know something’s going on. My body just feels prickly and I get a little achy. And the fatigue gets a lot worse. That’s how I know — oh, something’s happening.

Bone marrow transplant

I had my bone marrow transplant on February 28th, 2023. I would say that the procedure itself is simple; everything before the transplant, as well as the recovery, is all the work.

So beforehand, I got a large dose of chemo and that made me really fatigued. I also experienced nausea, mild vomiting, and diarrhea. And then I got my transplant, which took just 10 minutes and I felt fine immediately afterwards.

After the procedure, you just build up strength. You go through a basement period where you really, really feel bad, where your immune system plummets down to nothing. And then it ramps up.

It took me about 2 weeks before I felt better. And then that’s how long you’re usually in the hospital, or at least it was for me.

But after my bone marrow transplant, I quickly relapsed. The bone marrow transplant ended up lasting me maybe 2 or 3 months at the most. And the old specialist that I had didn’t have a plan, and so my oncologist was trying to figure out what to do next. That’s where I feel they dropped the ball. The myeloma had gotten out of control, and then finally I started another chemo regimen.

And that is when I started seeing the new specialist, and she told me, since the bone marrow transplant did not work for you, you need to do CAR T if you relapse again. And so we had a plan. So when I was in the hospital for that month, it was so I would stabilize in order to get CAR T.

CAR T-cell therapy

Just like with a bone marrow transplant, there’s a lot of stuff that you have to do prior to getting CAR T. There are so many appointments and so many tests. And then finally you get to the CAR T procedure itself.

I had my CAR T procedure on September 3, 2024. It took me maybe only 15 minutes. As an aside, it tasted and smelled like tomatoes to me, and they say it can taste like tomatoes or creamed corn for some people.

After CAR T, my body would feel sore, but other than that I would be feeling fine.

I’m done now with CAR T and I’m feeling good.

It’s not my time to go yet. I am too young.
So I have to fight and get through it.

Her motivation

I keep going and fighting because I love life and I want to be here.

I have 2 beautiful daughters that I want to be here with. It’s not my time to go yet. I am too young. So I have to fight and get through it.

People probably wouldn’t believe me if I were I tell them all the things that have happened. But yeah, I’ve gone through them. I’m a resilient person, and I’m truly blessed. And I’m thankful that I’m here and I’m going to keep fighting.

My daughters are amazing. They have taken care of me throughout this whole time. They literally stopped their lives to take care of me, and I just appreciate them so much. We’ve gotten a lot closer, and we were already close. But, you know, this brings a better bond. Because they are with me every step of the way. And they’re my cheerleaders.

My girls have gone through a lot. It’s [a parent’s IgM kappa Multiple Myeloma diagnosis] mentally draining on them as well. But they handle it well. They rely and lean on each other a lot. We definitely keep the communication going. I’ve had them in therapy. We just keep praying and just try to keep positive.

Her mindset

I haven’t been diagnosed with multiple myeloma that long, I’m going on 3 years. Having relapses as often as I have had is tough, but I have to keep going.

Mental health, I think, is a huge factor. I don’t think it gets discussed enough. I think anybody that has a cancer diagnosis, and maybe their family too, would need to speak with somebody. I will be honest. I haven’t talked to a therapist as much as I would like to, but I have seen one, and it absolutely helps.

I also try not to stay in a negative mindset. I mean, I allow myself to feel all the feelings. They are valid. I’m frustrated, angry, sad, and I do get depressed sometimes. Though I allow myself to be in those feelings, I try not to stay there that long. You have to come up out of it and just get through it. And, really, it’s a day by day thing.

I’m never going to be the same person I was before all this happened. Not ever again.
But it’s okay.

Creating community

Community is so important. You need to have a support system, or you would just be a mess.

I have lots of support from my daughters, my mother, my friends, my family, my coworkers. Without that support system, I don’t know how I would have survived.

People want to help, and there are a lot of good people out there in the world. The little things count so much and are so helpful. I’ve had people bring us groceries or just bring us a meal, come down to visit and clean the house or whatever. That is super helpful.

Coworkers have given me leave donations, and that has been such a blessing, to be able to still pay the bills even though I’ve been in and out of work.

I’ve done online chats and connected with people on Tiktok. That helps. Because just meeting people living with the same thing as you is just really heartening. It really has been almost therapeutic. Because it felt like I found my people.

Her life right now

I’m never going to be the same person I was before all this happened. Not ever again. But it’s okay.

It is hard. You know, you think back sometimes — oh, man, I used to be able to do this or that, or, I used to be so lively — that’s no longer the case. It’s hard and it’s definitely challenging. It takes time to get used to.

But I feel like you’ll be fine once you get to that point where you realize and accept that you’re no longer that person you used to be, but you’re just a different version of that person. I’m still the old Krystal, but I’ve just had to tweak some things.

It did take me a while, though, you know? And even now, I’m kind of hard on myself, so just giving myself grace, learning how to do that.

My biggest piece of advice is to stay encouraged.

I always feel like multiple myeloma has taken literally everything from me.

It’s taken my vision. At one point, I couldn’t walk. I was using a wheelchair. I was in excruciating pain. I’ve had strokes. I’ve had everything. But I’ve come out of it like nothing ever happened.

Hope is a good word. Yes, I hope for the best. And I think I go more towards faith. My faith has gotten stronger during all of this. And that is really what I hold on to.

My biggest piece of advice is to stay encouraged. It is going to be so rough at times. You’re going to feel waves of emotions. It will be like a rollercoaster. But just stay encouraged. Speak up and ask all the questions. Be your own advocate. Accept help. You’re going to need that support from others, and you will be surprised at how many people really want to help you and will support you throughout all of this.

So as hard as IgM kappa multiple myeloma is, you can still come out of it and still rock it.

Special thanks again to Johnson & Johnson for their support of our patient education program! The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Krystal!

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Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Emily’s journey began with unexplained symptoms, including prolonged sickness, speech changes, and an inability to stick her tongue out straight. Initially, doctors misdiagnosed her with Eagle syndrome and anxiety. She also experienced night sweats, petechiae, and severe weakness, but struggled to find a diagnosis until an ENT referred her to palliative care, urging immediate action.

Emily visited the ER, where specialists quickly recognized the severity of her condition. A lymph node biopsy confirmed stage 4 Burkitt lymphoma, affecting her bone marrow, spleen, and central nervous system. She was also found to have hemophagocytic lymphohistiocytosis (HLH).

Emily began aggressive treatment involving 6 rounds of chemotherapy. Chemotherapy caused severe side effects, including mucositis, rapid weight loss, and extreme fatigue. Despite the challenges, Emily remained determined, knowing the transplant could cure both her cancer and HLH.

In May 2023, Emily underwent an autologous stem cell transplant. Afterwards, she endured an intense isolation period, followed by extensive physical therapy to regain strength and mobility. By August, scans confirmed remission, yet Emily found survivorship mentally and emotionally taxing. Returning to her job in special education only 4-5 months post-transplant proved difficult, as her immune system remained compromised. She continues to manage her health with frequent medical appointments, immunotherapy, and physical recovery.

Emily’s journey was not without complications. For instance, she suffered a small stroke during treatment, caused by an oversight in managing her blood thinners. Despite the challenges she faced, she emphasizes the crucial role of self-advocacy, community support, and compassionate medical professionals, particularly her nurses, who provided emotional and practical support during her hospitalization.

Emily actively raises awareness about young adults facing late or misdiagnoses, stressing the need for better medical attention for this demographic. She also highlights the impact of genetic factors and Epstein-Barr virus on her cancer, urging the importance of thorough family history and testing.

Now, Emily finds healing through therapy, volunteering at an animal shelter, and reintroducing physical activity. She plans to explore trauma-focused therapies like eye movement desensitization and reprocessing (EMDR) therapy and continues to engage with online communities for support, including on Instagram. While the fear of relapse lingers, Emily focuses on building a new normal and empowering others to advocate for their health and seek community connections during and after treatment.

Name:
- Emily S.
Age at Diagnosis:
- 28
Diagnosis:
- Burkitt non-Hodgkin lymphoma
Staging:
- Stage 4
Initial Symptoms:
- Constant fatigue
- Tongue deviated to the left
- Abscess in right breast
- Petechiae on legs
- Night sweats
- Nausea and vomiting
- Persistent cough
Treatment:
- Chemotherapy
- Stem cell transplant
- Immunotherapy

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

Thank you for sharing your story, Emily!

Inspired by Emily's story?

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Whether you’re a patient, care partner/giver, or someone interested in learning about bladder cancer, our goal is that these stories of bravery and resolve of those facing bladder cancer will increase awareness and break down myths. Most importantly, we hope you learn the importance of self-advocacy in your own healthcare.

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

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

Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fights, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.

From Recurrent UTIs to Bladder Cancer: Monica’s Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Table of Contents

Introduction
Initial Symptoms
What the UTIs Felt Like
Getting a Bladder Cancer Diagnosis
Finding the Right Doctor
Multiple Recurrences and Successful Treatment
Follow-ups
How Bladder Cancer Changed Her Life
What Support Looks Like to Her
Redefining Her Identity
Raising Awareness: What Monica Wants People to Know About Bladder Cancer
Words of Advice

Introduction

Monica began her battle with bladder cancer in 2004 after experiencing recurrent UTIs and finding a lump during a routine checkup. Her proactive gynecologist referred her for an ultrasound, leading to a diagnosis of non-invasive bladder cancer. She faced emotional challenges with initial medical communication, but found a supportive urologist who helped her understand her condition. Rigorous treatment eventually stopped the cancer’s recurrence. She now undergoes annual checkups, managing anxiety and her weakened bladder.

Monica receives immense support from loved ones and the cancer community, which empowers her to share her story and inspire others. Her experience taught her to live fully, shifting from survival to thriving with purpose and resilience. She advises engaging with healthcare providers and staying positive, emphasizing the importance of being proactive and resilient in navigating cancer, thus offering hope and encouragement to others facing similar challenges.

I was getting recurrent urinary tract infections (UTIs) and those were the only times I would see blood in my urine

I was diagnosed with non-invasive bladder cancer in 2004.

I currently reside in Virginia. I enjoy spending time with my husband. We celebrated our 25th wedding anniversary in June 2024. We love to travel, go to the beach, and enjoy living life every day to its fullest.

Initial Symptoms

At the time, I had no symptoms that raised a red flag. I was getting recurrent urinary tract infections (UTIs) and those were the only times I would see blood in my urine, which is one of the signs of bladder cancer to be on the lookout for. I would get an infection, take an antibiotic, and it would go away, but it would come back again.

On one particular year though, I was going in to have my annual pap smear and doing that examination. The gynecologist felt something that she thought was over my reproductive area. She said, “I feel a lump or something there. I’m going to send you to get an ultrasound.” When I got the results, she told me that there was something in my bladder and referred me to a urologist.

I went to the urologist. The appointments and follow-up, getting a diagnosis, and getting the results back probably took a month and a half to two months. The urologist did a cystoscope and said there was something there, so they had to do TURBT, which is a transurethral resection of a bladder tumor. After the procedure, they told me that I had bladder cancer.

I like knowing more of the signs and symptoms and being more cognitive. If you see some of those things, it doesn’t necessarily mean that you have bladder cancer, but it will raise a red flag to say you need to have further testing to know what’s going on. Build your awareness and be proactive.

Pay attention if you have urinary urgency, burning sensation, pain, or if you see any hint of blood… Those are symptoms that should raise a red flag.

What the UTIs Felt Like

My UTIs were very, very painful. Almost indescribably so. The pain would go away with antibiotics, but a few months later, it would come back again. Pay attention if you have urinary urgency, burning sensation, pain, or if you see any hint of blood. I’ve heard people say they saw a drop and that was it, and they didn’t pay attention to it. Those are symptoms that should raise a red flag.

I thought, “What’s going on? What’s wrong with me? Why does this keep happening?” I was drinking water, trying to flush my system out, and I didn’t understand. Nothing was adding up. I was relieved when the doctor said something was in my bladder, even though I never thought it would be cancer. It was a relief to finally find out what was going on and the reason behind what was happening leading up to the diagnosis. I’m forever thankful to the gynecologist for taking the extra step to do the ultrasound.

Getting a Bladder Cancer Diagnosis

The day I learned I had cancer was an emotional roller coaster. It taught me the importance of advocating for myself.

My urologist at the time came in, told me that I had bladder cancer, and walked out of the room with no explanation. I sat there crying because I was very emotional. His nurse then came in and said, “We need to schedule you to have this done and that done.” I was shocked. It took me a while to gather myself to even drive home. I ended up getting another urologist because we were not on the same page.

I went online because I had never heard of this type of cancer. I found a lot of information, which was overwhelming. I didn’t fit any of the criteria of someone who would typically get bladder cancer.

I also didn’t see a lot of support groups in my area, which was a little concerning. We kept researching until I found an organization that specifically dealt with bladder cancer, bladder cancer patients, and caregivers. I linked up with that organization and continued to educate myself, my family, and my community.

He talked to my husband and explained in great detail what would happen, the treatment plan, and what we would do for surveillance. I was so happy to find the right doctor for me.

Finding the Right Doctor

I was undergoing checkups every 3 months, but when it would get close to that point, the nurse would call and say, “Oh, he’s not available on your scheduled appointment. Can you come next week?” This started happening repetitively. Every 3 months when I went back, the bladder cancer was back, so I didn’t want to go every 4 to 6 months. I wanted to stick to the 3-month schedule and not a day over.

I called the urology center and said, “I need someone else who’s going to be more attentive, on schedule, and has my best interests at heart.” They directed me to someone else and he’s who I’ve had since then.

We fit. He has a great bedside manner. He draws pictures to help me better understand the terms they throw out. He talked to my husband and explained in great detail what would happen, the treatment plan, and what we would do for surveillance. I was so happy to find the right doctor for me.

Multiple Recurrences and Successful Treatment

I would get a recurrence probably every 3 months between the first and the fifth year. Even though it was low-grade, non-invasive, and didn’t penetrate through my bladder, it was very aggressive.

They started a different type of treatment for which I had to go in every Thursday. I would get a catheter, get the drug injected into the catheter, and then I had to hold it in my bladder for 2 hours. When I went home, I had to rotate every 15 minutes for up to 2 hours and then let it out. I never understood this, but those were the instructions, so I followed them.

I did a series of those treatments for a couple of months. I never had a recurrence after that, thankfully.

My bladder is very weak and I’m not able to hold my urine, so when I go anywhere, I scope out every location to make sure there’s a bathroom nearby.

Follow-ups

I’m on annual surveillance so I go in for a check-up once a year. The doctor does a scan from my waist down and a cystoscope. Then we go from there. That’s pretty much what it’s been like for the last several years.

It’s still nerve-wracking. They call it scanxiety. You’re sitting there wondering if he will find anything or if something will show up. I still get a little anxious when I go to those appointments. But this is something that I have to deal with because I have to be under surveillance for the rest of my life.

How Bladder Cancer Changed Her Life

The biggest thing for me is not having a fully functioning bladder. My bladder is very weak and I’m not able to hold my urine, so when I go anywhere, I scope out every location to make sure there’s a bathroom nearby.

For everyone else on this journey, it’s the same thing for all of us. We’re always looking for the restrooms. I’m very cautious about what I drink. I tend to avoid things that will make me go more frequently, like caffeine. I mostly drink water or green tea.

I was in survival mode but I shifted to “thrival” mode. I learned to not only survive but also to thrive, even with a bladder cancer journey.

What Support Looks Like to Her

I’m so thankful for my husband. He’s been there the whole time. He’s walked with me every step of the way. My family, friends, and church family have been so supportive as well.

I also have a cancer support group with women of all different types of cancer. I also belong to an advocacy network that focuses on bladder cancer awareness. All of those sources of support keep me well-rounded. It helps me to share my story and, my journey with bladder cancer with the hope that it will help someone else in this situation.

Redefining Her Identity

There was definitely a shift due to my experience. I’ve always enjoyed traveling and relaxing but that wasn’t a priority. Now, I take advantage of that, whether meeting up with my family for the holidays or getting together to talk. I cherish and take advantage of those moments.

I try to live every day to its fullest and not take anything for granted. I still live life, but it was a shift. Now, my mindset is, “Let’s do this.” I was in survival mode but I shifted to “thrival” mode. I learned to not only survive but also to thrive, even with a bladder cancer journey.

Even though you’re going to go through some hills and valleys, continue to stay positive, keep the faith, and trust the process.

Raising Awareness: What Monica Wants People to Know About Bladder Cancer

Before, I thought that hearing “cancer” was a death sentence. It’s going to be over. But you need to change your mindset and believe that everything’s going to be okay, even though you might have those times when you feel that it isn’t.

Keep moving forward, stay positive, and do things that make you happy. I love to walk. I like to journal to clear my head. When things were getting a little difficult for me to handle, I sought therapy to help me get through those tough times. It’s a lot to deal with and it can be overwhelming. Sometimes you need to reach out to get additional help.

In the beginning, I did ask: why me? Then it shifted to: why not me? I feel like we all have a plan and purpose for our lives, and this was the plan and purpose for me, even though no one wants to be a part of that club and be diagnosed with cancer.

There have been a lot of silver linings with being diagnosed, like meeting some wonderful people who have become my extended family. We’ve walked through these journeys, cried, and supported one another. I continue to share my story. I hope to give somebody the hope that they’re not alone, that there is help out there, and that they can get through it.

Words of Advice

Sometimes, I think people are afraid to ask their doctors questions. But it’s your life and your body. Be more confident and bold to ask what you need to ask. Bring up your concerns about whatever treatment plan or information that you may have.

If you are unfortunately diagnosed with bladder cancer, you’re not alone. Find a support group. Find a doctor who matches what you’re looking for. Even though you’re going to go through some hills and valleys, continue to stay positive, keep the faith, and trust the process.

Special thanks again to Pfizer and Astellas for supporting our patient education program! The Patient Story retains full editorial control over all content.

Bladder Cancer Resources

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Understand common bladder cancer causes, urine color, symptoms, and treatments as described by real patients.
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Bladder cancer patients Ebony & LaSonya talk about their cancer journey, including their first symptoms, how they processed their diagnosis, treatment options, and how they found support. Dr. Samuel Washington, a urologic surgeon, also gives an overview of bladder cancer and its treatments.
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Diagnosis and Treatment for Bladder Cancer

Learn about the diagnosis and treatment process from bladder cancer survivors and medical experts. Discover diagnosis and treatment options./p>

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Tiffany’s Stage 4 Liver Cancer Story

Post author By Chris Sanchez
Post date January 16, 2025
No Comments on Tiffany’s Stage 4 Liver Cancer Story

January 16, 2025

Tiffany’s Stage 4 Liver Cancer Story

Tiffany, a 38-year-old mother of 4, has stage 4 bile duct cancer or cholangiocarcinoma, also known as liver cancer. In April 2024, she experienced severe left flank pain, which led her to seek medical attention. A CT scan at the hospital revealed a mass on her liver, initially suspected to be colon cancer. Further tests, including an MRI, PET scan, and liver biopsy, confirmed the diagnosis of cholangiocarcinoma that had spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Following the diagnosis, Tiffany began receiving treatment. Her oncologist initiated a combination of chemotherapy and immunotherapy, alternating between therapies weekly, with a rest period every 3 weeks. Despite initial radiation treatments failing to shrink the tumor on her spine, targeted radiation was applied to her liver, followed by spine surgery to remove most of the tumor. Recovery was challenging, requiring a week-long hospital stay, physical therapy, and the use of a walker and cane at home.

Subsequent treatment involved ablation surgery to address new lesions on her liver. Tiffany resumed chemotherapy and immunotherapy, experiencing side effects such as back pain, headaches, and nausea. As her treatment continued, she received support from her medical team, including a liver specialist in Baltimore.

Mentally, Tiffany struggles with anxiety and the fear of leaving her family. She takes anxiety medication to help cope, though the emotional toll remains significant. She stresses the importance of self-advocacy, sharing her story to raise awareness about cholangiocarcinoma and stressing the importance of regular medical check-ups.

The ongoing battle with cancer challenges Tiffany physically and emotionally, but she remains determined to see her children grow up. Her story serves as a reminder to pay attention to one’s health and advocate strongly for oneself in the face of medical challenges.

Name:
- Tiffany J.
Age at Diagnosis:
- 38
Diagnosis:
- Liver cancer (cholangiocarcinoma)
Staging:
- Stage 4
Initial Symptoms:
- Left flank pain
Treatment:
- Radiation
- Chemotherapy
- Surgery

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

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From Shock to Strength: A Young Mom’s Follicular Lymphoma Story

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Pre-diagnosis

Initial symptoms

Diagnosis

Reaction to the follicular lymphoma diagnosis

Treatment for follicular lymphoma

Loss of hair

Post-treatment

Coping with her situation and helping others

Being diagnosed with cancer at a young age — and looking forward

The importance of community

Advice Courtney offers

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Krystal’s Stage 4 IgM kappa Multiple Myeloma Story

Introduction

Pre-diagnosis

Reaction to the diagnosis

Finding the best care

The importance of self-advocacy

Treatment plan for IgM kappa multiple myeloma

Chemotherapy

Bone marrow transplant

CAR T-cell therapy

Her motivation

Her mindset

Creating community

Her life right now

What Krystal wants to share

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From Recurrent UTIs to Bladder Cancer: Monica’s Story

Introduction

Initial Symptoms

What the UTIs Felt Like

Getting a Bladder Cancer Diagnosis

Finding the Right Doctor

Multiple Recurrences and Successful Treatment

Follow-ups

How Bladder Cancer Changed Her Life

What Support Looks Like to Her

Redefining Her Identity

Raising Awareness: What Monica Wants People to Know About Bladder Cancer

Words of Advice

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Tiffany’s Stage 4 Liver Cancer Story

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