Categories
Chemotherapy External Beam Radiation Therapy (EBRT) Head and Neck Cancer Nasal Squamous Cell Carcinoma Orbital exenteration Patient Stories Proton therapy Radiation Therapy Reconstruction Surgery Treatments

Young Mom Melanie’s Stage 4 Nasal Squamous Cell Cancer

Facing Cancer as a Young Mom: Melanie’s Stage 4 Nasal Squamous Cell Carcinoma Story

Despite the excitement of expecting her first child, Melanie faced a life-altering diagnosis at 30 weeks pregnant: nasal squamous cell carcinoma. Her symptoms began subtly, with nosebleeds, sinus pressure, and congestion, all of which she attributed to pregnancy. However, when Melanie’s left eye started to protrude, she sought medical attention. An ENT attempted to examine her nasal cavity but found a mass blocking the scope. Urged to seek emergency care, she underwent an MRI and biopsy, confirming the presence of cancer.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

The stage 4 nasal squamous cell carcinoma diagnosis brought overwhelming fear and uncertainty. Melanie worried about being there for her child and the possibility of someone else raising her. She had to make treatment decisions quickly. Because the tumor had grown into critical areas, immediate surgery was not an option. Instead, doctors recommended chemotherapy, which she would begin after giving birth. Melanie’s hopes for a natural birth shifted when complications led to an emergency C-section. The moment her daughter was born brought a mix of relief and profound love. She held her baby for a day before beginning chemotherapy in the hospital.

Melanie S. feature profile

Chemotherapy provided initial success, shrinking the tumor in her nasal cavity and allowing Melanie to breathe more easily. However, the tumor in her eye orbit remained unchanged due to poor blood flow in that area. With no clear margins for radiation, doctors advised surgical removal of her left eye and surrounding structures before proceeding with further treatment. The first surgery replaced lost tissue using a skin flap from her arm, followed by radiation therapy. Radiation, unexpectedly, was more physically challenging than chemotherapy, leaving her exhausted and struggling to eat. Despite this, she avoided a feeding tube and completed treatment.

Beyond the physical toll, cancer reshaped Melanie’s mental and emotional well-being. The loss of breastfeeding and the shift in parental roles meant that her husband had to take on responsibilities that they hadn’t anticipated. He became the primary caregiver, ensuring she had the rest needed for recovery. Melanie found solace in therapy, initially struggling to connect with traditional therapists who lacked medical experience. A hospital-based therapist and support groups provided better understanding, though finding peers in similar circumstances proved difficult due to her young age.

Motherhood took an unexpected form, but Melanie embraced every moment with gratitude. Nasal squamous cell carcinoma altered her body, but she is focused on regaining strength and adjusting to her new normal. Regular check-ups and hyperbaric oxygen therapy support her ongoing healing. Though life will be different, Melanie remains hopeful, emphasizing that even in the darkest moments, happiness can be found. Her experience underscores the importance of mental health support, a strong community, and finding purpose beyond the diagnosis.


  • Name: Melanie S.
  • Diagnosis:
    • Nasal Squamous Cell Carcinoma
  • Staging:
    • Stage 4
  • Mutation:
    • p16 positive (HPV-related)
  • Symptoms:
    • Nosebleeds
    • Sinus pressure
    • Congestion
    • Eye protrusion
  • Treatments:
    • Chemotherapy
    • Surgeries: orbital exenteration (left eye removal) & reconstructive flap surgery
    • Radiation therapy: external beam radiation therapy & proton therapy
    • Hyperbaric oxygen therapy
Melanie S.
Melanie S.
Melanie S.
Melanie S.
Melanie S.
Melanie S.
Melanie S.

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.


Melanie S. feature profile
Thank you for sharing your story, Melanie!

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More Head and Neck Cancer Stories

Alyssa N. feature profile

Alyssa N., Adenoid Cystic Carcinoma



Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals

Treatments: Surgery (tumor removal), radiation
...
Eva G. feature profile

Eva G., Oral Cancer, Stage 4



Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...
Teresa B. breast cancer survivor experience

Teresa B., Recurrent Breast Cancer (Hormone-Positive), Oral Cancer (Lip Cancer), and Skin Cancer (Melanoma)



Symptoms: Lip cancer: chapped lips and appearance of a persistent pimple-like growth on lip, breast cancer: swollen and enlarged left breast and appearance of lump, recurrent breast cancer: appearance of another lump, melanoma: none

Treatments: Surgeries (bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs, surgery, wide local excision), hormone therapy, radiation therapy
...
Kandi B.

Kandi B., Adenoid Cystic Carcinoma, Stage 3



Symptoms: Fatigue, headaches, depression, occasional feeling of tongue being on fire or inflamed, appearance of tumor on salivary gland on tongue

Treatment: Surgery
...
Larry W. stage 4 neck cancer

Larry W., Neck Cancer (Malignant Neoplasm of the Neck), Stage 4



Symptom: Lumps on the right side of the neck

Treatments: Surgery (tonsillectomy, lymphadenectomy), chemotherapy, radiation, clinical trial

...

Categories
Neuroendocrine Tumors Paraganglioma Patient Stories Radiation Therapy Rare Targeted Therapy Treatments

Stage 4 Mediastinal Paraganglioma Can’t Stop Jonathan

Stage 4 Mediastinal Paraganglioma Can’t Stop Jonathan from Living His Life

Jonathan has stage 4 mediastinal paraganglioma, a rare neuroendocrine cancer. His experience is a testament to resilience, purpose, and the power of living fully, even with metastatic cancer. A dedicated lung transplant nurse practitioner, devoted husband, and proud father, he never let his diagnosis define him. Instead, he’s turned it into a mission to inspire, educate, and give back.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

In 2021, while training for the Ironman World Championships, Jonathan started experiencing troubling symptoms — shortness of breath, facial swelling, and dizzy spells. As an experienced healthcare professional, he suspected something serious. A trip to the emergency room confirmed his fears: stage 4 mediastinal paraganglioma, a rare cancer that had already spread throughout his body.

Jonathan P.

But Jonathan didn’t crumble under the weight of his diagnosis. Instead, he approached it with the mindset of a clinician and an athlete — problem-solving, strategizing, and pushing forward. His stage 4 mediastinal paraganglioma treatment plan included radiation to shrink the primary tumor near his heart, targeted therapy to slow the cancer’s spread, and surgeries to stabilize his spine after painful fractures. Despite the challenges, he remained active, racing in marathons and triathlons and even completing the Ironman World Championship in 2023, an achievement that proved that stage 4 cancer is not a death sentence.

Jonathan refuses to let stage 4 mediastinal paraganglioma dictate his life. He returned to his work in lung transplantation, finding deeper connections with his patients who also face mortality. His focus on sports helps him stay mentally strong in the face of his challenges. He also started giving back by fundraising for cancer patients and their families, hosting JP’s Backyard Ultra, an annual ultra-marathon that has raised thousands for those in need.

Through it all, Jonathan has embraced gratitude, acceptance, and purpose. His message is clear: cancer is not the end — it’s a call to live with intention, advocate for oneself, and find ways to give back. For him, being a “force for good” starts with kindness to oneself and extends to uplifting others. His story is not just about surviving but about thriving, making an impact, and redefining what it means to live with cancer.

Watch the video to learn from Jonathan about:

  • How he crossed the Ironman finish line after his stage 4 diagnosis.
  • Why he says stage 4 cancer is not a death sentence.
  • How he turned a rare cancer diagnosis into a mission to help others.
  • From marathons to fundraising, how he’s proving life doesn’t stop at stage 4.

  • Name: 
    • Jonathan P.
  • Age at Diagnosis:
    • 47
  • Diagnosis:
    • Mediastinal Paraganglioma
  • Staging:
    • Stage 4
  • Symptoms:
    • Shortness of breath
    • Facial and neck swelling
    • Vein distension
    • Dizziness and fainting
    • Blacking out after standing up
  • Treatments:
    • Radiation: external beam radiation therapy
    • Targeted therapy
    • Surgery: cement injection for spinal stabilization
Jonathan P.
Jonathan P.
Jonathan P.
Jonathan P.
Jonathan P.
Jonathan P.

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


Jonathan P.
Thank you for sharing your story, Jonathan!

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More Rare Neuroendocrine Cancer Stories

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Categories
Abraxane (paclitaxel) Carboplatin Chemotherapy Ovarian Patient Stories Surgery Taxol (paclitaxel) Treatments

Support & Advocacy in Michaela’s Stage 4B Ovarian Cancer

Michaela’s High-Grade Stage 4B Ovarian Cancer Highlights the Power of Advocacy and Support

Michaela was diagnosed with high-grade stage 4B ovarian cancer in March 2024 after experiencing a range of symptoms including persistent side and abdominal pain that were initially overlooked by multiple doctors. She leaned on her daughter, Sonia, during this difficult time. Michaela and Sonia sought medical attention after Michaela’s pain intensified, which pushed them to consult a gynecologist and a gastroenterologist. These efforts led to the discovery of Michaela’s cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Sonia, having dealt with cancer herself, was deeply involved in advocating for her mother’s needs. She drew from her own experience and the advocacy skills she learned while caring for her grandmother who had dementia. Michaela and Sonia decided to go to MD Anderson in Houston. They quickly moved forward with a treatment plan that included chemotherapy and surgery. Although the biopsy results were inconclusive, Michaela was treated with neoadjuvant therapy, involving rounds of chemotherapy before and after surgery.

Michaela E.

Despite facing an aggressive cancer stage, Michaela’s surgery was successful, removing all visible tumors. However, Michaela then had to deal with the anxiety and panic attacks that emerged post-treatment and with the fear of recurrence, too.

Michaela and Sonia emphasize the importance of self-advocacy in healthcare, stressing the need for women to insist on thorough examinations and tests when they feel something is wrong. They also highlight the limitations of standard procedures, like Pap smears, in diagnosing ovarian cancer. They urge a more comprehensive approach that includes CT scans and CA125 blood tests.

Throughout Michaela’s story, Sonia’s unwavering support and Michaela’s determination shine through. They advocate awareness and proactive health checks for early detection, emphasizing the strength found in family and medical teams. Their experience underscores the silent threat cancer poses and the need for vigilance and resilience in facing it.

Watch the video to learn about:

  • How Michaela’s courage helped her face an overlooked “silent killer” and its emotional toll.
  • How advocacy skills proved crucial in seeking treatment.
  • The importance of thorough medical checks.
  • Michaela’s and Sonia’s takeaways from this experience.

  • Name: 
    • Michaela E.
  • Age at Diagnosis:
    • 67
  • Diagnosis:
    • Ovarian Cancer (High-Grade)
  • Staging:
    • Stage 4B
  • Symptoms:
    • Bloating and mild swelling
    • Occasional discomfort and pain in abdominal/pelvic region
    • Noisier digestion than usual
    • Fatigue
    • Pressure/pain after emptying bladder
  • Treatments:
    • Surgery
    • Chemotherapy: neoadjuvant and post-surgery
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.

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


Michaela E.
Thank you for sharing your story, Michaela!

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More Ovarian Cancer Stories


Cheyann S., Low-Grade Serous Ovarian Cancer, Stage 4B



Symptoms: Stomach pain, constipation, lump on the right side above pubic area

Treatments: Cancer debulking surgery, chemotherapy (carboplatin & Taxol, then Doxil & Avastin)
...

Susan R., High-Grade Serous Ovarian Cancer, Stage 4



Symptoms: Pulling sensation when emptying bladder, abdominal pain

Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...

Jodi S., Epithelial Ovarian Cancer, Stage 4



Symptoms: Extreme bloating, extremely tight skin, changes in digestive tract, significant pelvic pain, sharp-shooting pains down inner thighs, extreme fatigue

Treatments: Chemotherapy (pre- & post-surgery), surgery (hysterectomy)
...

Categories
Chemotherapy Head and Neck Cancer Oral Cancer Patient Stories Radiation Therapy Squamous Cell Carcinoma Surgery Tongue Cancer Treatments

Spenser’s Experience with Stage 4 Oral Cancer

Spenser’s Stage 4 Oral Cancer Story: Turning Trauma into Triumph Against All Odds

Spenser was diagnosed with stage 4 oral cancer. He had always been athletic and was training to be a professional bodybuilder. But in 2022, he experienced an excruciating toothache, which led him to visit the ER. Although he had the tooth removed, he still felt something was off.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

As time progressed, Spenser started to feel very tired and kept having canker sores. He powered through and continued his rigorous workout routines. By January 2024, though, he could no longer dismiss his symptoms. A dental visit revealed a jarring sight in his mouth, leading to a referral to an oral surgeon, who immediately suspected cancer.

The surgeon’s suspicions proved true when Spenser was diagnosed with stage 4 oral cancer (squamous cell carcinoma of the tongue), which had spread to his neck and throat lymph nodes. To deal with a massive tumor, he underwent a grueling seven-hour surgery. The surgeon removed part of his tongue and numerous lymph nodes. The surgery was life-threatening, and his communication abilities were seriously jeopardized.

Recovering from surgery, Spenser next had to consider undergoing chemotherapy and radiation. He initially refused, but his doctors ultimately won him over. His treatment and its side effects were grueling, but Spenser’s resilience shone through. He defied expectations and refused to let his cancer defeat him.

Although Spenser survived stage 4 oral cancer, he experienced permanent kidney damage from chemotherapy and psychological scars, including PTSD and severe depression. Work became difficult, and he struggled under the pressure of his thoughts.

But Spenser rose to the occasion yet again. He found solace in boxing and embraced a new perspective on life. His story is about fighting against the odds, transforming trauma into strength, and never giving up.

Watch Spenser’s story for more about:

  • The importance of health and nutrition in cancer recovery.
  • How he remained resilient even during the hardest moments.
  • Listening to one’s body and seeking medical help if something feels wrong.
  • What he’d like other people to learn from his experience.

  • Name: 
    • Spenser S.
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • Oral Cancer (Squamous Cell Carcinoma of the Tongue)
  • Staging:
    • Stage 4
  • Symptoms:
    • Severe toothache
    • Excessive fatigue
    • Persistent canker sores
    • Appearance of a large cyst in the mouth
  • Treatments:
    • Surgery: partial removal of tongue, neck dissection with flap
    • Chemotherapy
    • Radiation
Spenser S.
Spenser S.
Spenser S.
Spenser S.
Spenser S.
Spenser S.

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, Spenser!

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More Head and Neck Cancer Stories

Alyssa N. feature profile

Alyssa N., Adenoid Cystic Carcinoma



Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals

Treatments: Surgery (tumor removal), radiation
...
Eva G. feature profile

Eva G., Oral Cancer, Stage 4



Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...
Teresa B. breast cancer survivor experience

Teresa B., Recurrent Breast Cancer (Hormone-Positive), Oral Cancer (Lip Cancer), and Skin Cancer (Melanoma)



Symptoms: Lip cancer: chapped lips and appearance of a persistent pimple-like growth on lip, breast cancer: swollen and enlarged left breast and appearance of lump, recurrent breast cancer: appearance of another lump, melanoma: none

Treatments: Surgeries (bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs, surgery, wide local excision), hormone therapy, radiation therapy
...
Kandi B.

Kandi B., Adenoid Cystic Carcinoma, Stage 3



Symptoms: Fatigue, headaches, depression, occasional feeling of tongue being on fire or inflamed, appearance of tumor on salivary gland on tongue

Treatment: Surgery
...
Larry W. stage 4 neck cancer

Larry W., Neck Cancer (Malignant Neoplasm of the Neck), Stage 4



Symptom: Lumps on the right side of the neck

Treatments: Surgery (tonsillectomy, lymphadenectomy), chemotherapy, radiation, clinical trial

...

Categories
Chemotherapy Neuroendocrine Carcinoma Neuroendocrine Tumors Patient Stories Rare Surgery Treatments

Amanda’s Terminal Stage 4 Neuroendocrine Carcinoma

Beyond the Diagnosis: How Amanda Embraces Life with Terminal High-Grade Stage 4 Neuroendocrine Carcinoma

In January 2025, Amanda found out she had high-grade stage 4 neuroendocrine carcinoma. Her story began in 2023 with a persistent UTI and cough. Initially, she was misdiagnosed with an autoimmune disease and treated with immunosuppressants and cortisone. However, her original symptoms persisted, and she also started to experience other symptoms like coughing up blood and having difficulty breathing even while walking.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

An ultrasound finally revealed a rapidly growing tumor on one ovary. Amanda immediately had both the tumor and ovary removed. Afterward, pathology results determined it was stage 4 neuroendocrine carcinoma. Although it wasn’t the primary tumor, it had already metastasized to various parts of her body.

Amanda and her family grappled with the reality of terminal cancer. Clinical trials weren’t an option because she has an autoimmune disease and had previously taken cortisone. She struggled with whether or not to undergo chemotherapy, and after consulting with doctors and her family, she decided to try a cycle of chemotherapy. It initially improved her condition. But her fears came true when she soon began to experience serious side effects like throat sores and hair loss.

Despite the prognosis, Amanda remains hopeful. She plans to continue chemotherapy for six to eight months. She’s also exploring alternative and integrative therapies to support her body and potentially extend her life. At the same time, by openly sharing her stage 4 neuroendocrine carcinoma story, Amanda wants to inspire others to maintain hope.

Learn more about the following topics by watching Amanda’s story:

  • Learning to embrace life and being hopeful in the face of a terminal cancer diagnosis.
  • Finding strength in activities like yoga and meditation.
  • Exploring all possibilities for well-being.
  • Drawing solace from a strong support system.

  • Name:
    • Amanda S.
  • Age at Diagnosis:
    • 32
  • Diagnosis:
    • High-Grade Neuroendocrine Carcinoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Breathing problems, especially during activities like walking
    • Persistent cough
    • Coughing up blood
    • Urinary tract infections
    • Pain in belly
  • Treatments:
    • Chemotherapy
    • Surgery

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

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


Thank you for sharing your story, Amanda!

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Categories
Chemotherapy Metastatic Non-Hodgkin Lymphoma Patient Stories Treatments

Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Sandy was diagnosed with stage 4 non-Hodgkin lymphoma in 2024. Her initial symptoms included persistent coughing, weakness, and shortness of breath. After weeks of worsening symptoms and ineffective treatments, an MRI revealed a large mass in her chest, which eventually led to the collapse of her left lung due to a massive tumor. A biopsy confirmed the diagnosis of lymphoma, a cancer that Sandy later described as a blessing in disguise due to its responsiveness to chemotherapy.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Treatment began immediately, consisting of six intense rounds of chemotherapy, each lasting five days in the hospital followed by two weeks of recovery at home. The process was physically and emotionally grueling, marked by extreme fatigue, weight loss, and hair loss. Despite these challenges, Sandy focused on mental resilience, which she believes was critical to her survival. She emphasized the importance of maintaining movement, even during the most debilitating moments.

Sandy D. feature profile

To cope mentally with stage 4 non-Hodgkin lymphoma, Sandy turned to spirituality, meditation, and writing. She frequented a meditation garden where she found solace. Writing became a therapeutic outlet, leading to the creation of her book, Cancer Ramblings. Writing helped her process her experience and turn her pain into purpose.

Sandy celebrated her remission as a profound moment of liberation and gratitude, describing it as a second chance at life. She plans to monitor her health closely while maintaining a conscious lifestyle. She views sharing her story as a way to inspire others, providing hope and comfort to those facing similar challenges. Her key advice is to visualize a positive outcome and hold onto it as a guiding light through the darkest moments. Sandy’s enduring image was of herself running on the beach—a vision she ultimately realized.


  • Name: Sandy D.
  • Age at Diagnosis:
    • 45
  • Diagnosis:
    • Non-Hodgkin lymphoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Persistent coughing
    • Weakness
    • Shortness of breath
  • Treatment:
    • Chemotherapy (six rounds)
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.

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.


Sandy D. feature profile
Thank you for sharing your story, Sandy!

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More Metastatic Non-Hodgkin Lymphoma Stories

Stephanie V.

Stephanie V., Primary Mediastinal (PMBCL), Stage 4

Symptoms: Asthma/allergy-like symptoms, lungs felt itchy, shortness of breath, persistent coughing
Treatments: Pigtail catheter for pleural drainage, video-assisted thoracoscopic surgery (VATS), R-EPOCH chemotherapy (6 cycles)
...


Stephanie R., Mantle Cell Lymphoma (MCL), Stage 4



Symptom: Elevated white blood cell count



Treatments: 6 months of rituximab + ibrutinib, 4 cycles of hyper-CVAD chemotherapy
...

Sheryl B., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: (Over 15 years) Skin irritation from temperature changes, rising WBC levels, unexplained fatigue, retinal hemorrhage, hardened abdomen (from enlarged spleen)
Treatment: 6 cycles Hyper-CVAD chemotherapy
...

Shari B., Mantle Cell Lymphoma (MCL), Stage 4



Symptom: None; lymphoma discovered at unrelated doctor appointment
Treatments: 6 cycles R-CHOP, 5 cycles phase 3 trial of Velcade + Rituxan (normally for multiple myeloma), allogeneic bone marrow transplant (BMT)
...

Shahzad B., Refractory Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Extreme fatigue
Treatments: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
...
Sandy D. feature profile

Sandy D., Non-Hodgkin’s Lymphoma, Stage 4



Symptoms: Persistent coughing, weakness, shortness of breath

Treatment: Chemotherapy
...
Sammie shares her non-hodgkin's lymphoma story
Sammie F., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Chest pain, back pain, bump on neck, night sweats Treatments: Chemotherapy, CAR T-cell therapy...

Richard P., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Relapse Symptoms: Swelling in leg, leg edema Treatments: R-CHOP chemotherapy, clinical trial (venetoclax-selinexor)
...
Paige C.

Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy
...
Nolan W. feature profile

Nolan W., T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL), Stage 4



Symptoms: Debilitating fatigue, flu-like symptoms without a fever, swollen lymph node under the left arm

Treatments: Chemotherapy (R-EPOCH & RICE), bone marrow transplant
...

Nina L., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy (R-CHOP)
...
Headshot of Nicky, who's living with stage 4 follicular lymphoma
Nicky G., Follicular Lymphoma, Stage 4
Symptoms: Fatigue, weight loss, lumps in the neck and groin

Treatments: Chemotherapy, radiation, platelet transfusion...

Mike E., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Persistent, significant back pain

Treatments: Surgery, chemotherapy
...

Mags B., Primary Mediastinal (PMBCL), Stage 4



Symptoms: Exhaustion, migraines, persistent coughs, swelling and discoloration in left arm
Treatment: Chemotherapy (R-CHOP, 6 cycles)
...

Luis V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Persistent cough, fatigue, unexplained weight loss



Treatment: Chemotherapy (R-CHOP and methotrexate)
...

Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4



Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen

Treatments: Chemotherapy, targeted therapy, radioimmunotherapy
...
Kris W.

Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
...
Kim

Kim S., Follicular Lymphoma, Stage 4



Symptom: Stomach pain
Treatments: Chemotherapy (rituximab & bendamustine), immunotherapy (rituximab for 2 additional years)
...

Jonathan S., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Severe shoulder pain

Treatments: R-CHOP chemotherapy, methotrexate, focal radiation, autologous stem cell transplant
...

John S., Follicular Lymphoma, Stage 4



Symptom: Swollen lymph nodes

Treatments: Clinical trial, chemotherapy
...

Jason W., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: Hives, inflamed arms



Treatments: Calabrutinib, Lenalidomide, Rituxan
...

Harjeet K., Subcutaneous Panniculitis-like T-Cell-Lymphoma (SPTCL), Stage 4



Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatments: High-dose chemotherapy, allogeneic stem cell transplant
...

Erin R., Diffuse Large B-Cell Lymphoma (DLBCL) & Burkitt Lymphoma, Stage 4



Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatments: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
...

Emily G., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Pain in left knee

Treatments: Chemotherapy (R-CHOP and high-dose methotrexate)
...

Emily S., Burkitt Non-Hodgkin Lymphoma, Stage 4



Symptoms: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough

Treatments: Chemotherapy, stem cell transplant, immunotherapy
...
David shares his stage 4 follicular lymphoma diagnosis
David K., Follicular Lymphoma, Stage 4 Symptoms: Sharp abdominal pains, frequently sick, less stamina Treatments: Chemotherapy, immunotherapy, radiation, clinical trial, autologous stem cell transplant...
Cindy M. feature profile

Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
...

Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4



Symptom: None



Treatments: R-CHOP chemotherapy, rituximab
...

Bobby J., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: Fatigue, enlarged lymph nodes
Treatments: Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD
...

Barbara R., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Abdominal and gastric pain



Treatments: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851
...
Ashlee K. feature profile

Ashlee K., Burkitt Lymphoma, Stage 4



Symptoms: Abdominal pain, night sweats, visible mass in the abdomen

Treatments: Surgery (partial colectomy to removed 14 inches of intestine), chemotherapy
...

Categories
bendamustine (Bendeka) Bexxar CAR T-Cell Therapy Chemotherapy Follicular Lymphoma Gazyva Immunotherapy Metastatic Non-Hodgkin Lymphoma Patient Stories R-CHOP Treatments Vorinostat Zydelig (idelalisib)

Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

Laurie, a Los Angeles resident, was diagnosed with stage 4 follicular non-Hodgkin lymphoma in 2006, when she was 46. Her journey to diagnosis began years earlier with vague symptoms—frequent sinus infections, a tendency for her right eye to dry out, fatigue, and a lump in her abdomen. Multiple doctors dismissed her concerns, with one attributing the lump to a hernia. But a diagnostician ordered a CT scan, and it revealed a grapefruit-sized tumor and spots on her lungs.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After undergoing a series of tests, including biopsies, Laurie learned she had follicular non-Hodgkin lymphoma, a type of cancer affecting the lymphatic system. Her initial response to the cancer diagnosis was shock, followed by depression and uncertainty about how to explain the situation to her young son and husband.

Laurie’s treatment regimen started with chemotherapy and a monoclonal antibody, which successfully reduced the tumors after 6 rounds. However, her cancer relapsed, and she explored additional treatment options, including a clinical trial using an HDAC inhibitor (therapy that helps control how cancer cells grow and divide by affecting the cancer cell DNA). It initially stabilized the cancer but ultimately failed after 11 months. Consequently, Laurie turned to alternative therapies, including radioimmunotherapy (delivering high dose radiation directly to the tumor cells) and a more aggressive chemotherapy regimen, but these also proved unsuccessful.

In 2011, Laurie enrolled in a clinical trial for a Pi3 kinase inhibitor (a treatment that works to block a pathway cancer cells use to grow and survive that can slow a cancer’s growth and help keep it under control), which kept her cancer stable for over 5 years, albeit not fully eliminating it. During this time, she learned about CAR T-cell therapy, a cutting-edge treatment using a patient’s own T cells to target cancer cells. While initially not available for follicular lymphoma, CAR T-cell therapy became an option for Laurie in 2018. She consequently underwent the procedure — a remarkable 7th line of cancer treatment. As a result, she achieved remission for the first time in 12 years. As of 2024, Laurie has remained cancer-free. Her oncologist considers her cured, as her CAR T-cells continue to be detectable in her system.

Throughout her treatment journey, Laurie faced numerous challenges, including the side effects of chemotherapy, radiation, and steroids. She developed avascular necrosis, which required hip surgery, a consequence of long-term steroid use. However, despite these struggles, Laurie’s battle with cancer transformed her into a passionate patient advocate. She now works with 3 nonprofits, helping others navigate cancer treatment and advocating for more accessible and less potentially toxic therapies like CAR T-cell therapy. Laurie emphasizes the importance of finding a specialized oncologist, self-advocacy, and the value of second opinions and clinical trials in managing cancer.

Laurie’s story underscores the evolving landscape of cancer treatment, particularly in the context of immunotherapy. She highlights the importance of staying informed and advocating for oneself or having someone advocate on their behalf, especially as new therapies emerge. Through persistence, resilience, and research, Laurie continues to support others facing similar battles. She shares her journey to inspire hope and grow awareness.


  • Name:
    • Laurie A.
  • Age at Diagnosis:
    • 46
  • Diagnosis:
    • Follicular lymphoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Frequent sinus infections
    • Dry right eye
    • Fatigue
    • Lump in abdomen
  • Treatments:
    • Chemotherapy
    • Targeted therapy
    • Radioimmunotherapy

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.


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Chemotherapy Colorectal Patient Stories Radiation Therapy Treatments

Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs

Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs

Nicola is a mother and anesthetic technician who loves traveling and spending time with her dogs, cat, and 2 children. In 2020, doctors diagnosed her with colorectal cancer. By the end of 2021, she learned that her colorectal cancer had become stage 4 and had metastasized to her brain. After undergoing a craniotomy, she has been in remission for 9 months.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

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.


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Lindsay

Lindsay D., Colon Cancer, Stage 4



Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)

Categories
Immunotherapy Melanoma Patient Stories Skin Cancer Treatments

Meridith’s Stage 4 Melanoma Story

Meridith’s Stage 4 Melanoma Story

Meridith, a fitness trainer and mother of three, was diagnosed with stage 4 melanoma in September 2023. Despite being physically fit and vigilant about her skin health, she experienced no warning signs until a sudden seizure led to her diagnosis.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Doctors discovered two brain metastases connected to her stage 4 melanoma, one of which was operable. She underwent a craniotomy that successfully removed one tumor, but the second, inoperable tumor presented ongoing challenges. Seeking alternatives to radiation, Meredith’s network led her to an expert at MD Anderson who proposed immunotherapy, which effectively attacked the tumor. However, the treatment triggered severe side effects, including seizures and encephalitis, leading to a prolonged recovery.

Meridith B. feature profile

Meridith’s year-long recovery has been marked by physical, mental, and emotional challenges. After seven more seizures in 2024, she focused on lifestyle changes to support brain health. While returning to her previous fitness activities has been slow, she finds healing in nature, spirituality, and spending time with family. Her experiences have brought a new perspective on life, emphasizing gratitude, faith, and the importance of close relationships.

Meridith continues to navigate survivorship with regular scans and a profound sense of purpose, offering encouragement to others facing similar struggles. She believes in the power of hope, community, and finding joy in life’s small moments, even amidst adversity. Her message is one of resilience, emphasizing that light and support can overcome even the darkest times.


  • Name: Meridith B.
  • Age at Diagnosis:
    • 43
  • Diagnosis:
    • Melanoma
  • Staging:
    • Stage 4
  • Symptom:
    • Seizure
  • Treatment:
    • Surgery: craniotomy (to remove a brain metastasis)
    • Immunotherapy
Meridith B.
Meridith B.
Meridith B.
Meridith B.
Meridith B.
Meridith B.
Meridith B.

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.


Meridith B. feature profile
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More Melanoma Stories


Ellis E., Melanoma, Stage 3A



Symptom: Changing mole on arm

Treatments: Lymph node resection, immunotherapy, targeted therapy (BRAF inhibitor)
...

Rich B., Melanoma, Stage 3B



Symptom: Appearance of suspicious dark spots
Treatment: Immunotherapy
...
Jenn shares her recurrent melanoma cancer story

Jenn S., Melanoma, Recurrent (Stage 0 & Stage 3B)



Symptom: Appearance of asymmetrical, multi-colored, large mole on the shoulder

Treatments: Surgery, skin checks
...
Chris shares his stage 4 mucosal melanoma story
Chris W., Mucosal Melanoma, Stage 4 Symptoms: Sweaty rectum, pimple-sized lump in rectum that grew, lump that developed in right groin

Treatments: Surgery, chemotherapy, radiation, immunotherapy, tumor-infiltrating lymphocytes (TILs)...
Caitlyn M. feature profile

Caitlyn M., Melanoma, Stage 4



Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek
Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw)
...

Categories
Chemotherapy Clinical Trials Colon Colorectal Eloxatin (oxaliplatin) FOLFIRI (folinic acid, fluorouracil, irinotecan) FOLFOX (folinic acid, fluorouracil, oxaliplatin) Immunotherapy Patient Stories Targeted Therapy Treatments

Emily’s Stage 4 Colon Cancer Story

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
  • Symptoms:
    • Abdominal pain
    • Blood in stool
  • Treatments:
    • Surgery
    • Immunotherapy
    • Targeted therapy
    • Clinical trials

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.


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Raquel A. feature profile

Raquel A., Colorectal Cancer, Stage 4



Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatment: Chemotherapy

Steve S., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, changes in bowel habits, feeling gassy and bloated

Treatments: Surgery, chemotherapy, monoclonal antibody, liver transplant
Jessica T. feature profile

Jessica T., BRAF Mutation Colon Cancer, Stage 4



Symptoms: Severe stomach cramps, diarrhea, vomiting, anemia (discovered later)

Treatments: Surgery (hemicolectomy), chemotherapy

Jennifer T. feature profile

Jennifer T., Colon Cancer, Stage 4



Symptoms: Weight loss, coughing, vomiting, sciatica pain, fatigue

Treatments: Surgeries (colectomy, lung wedge resection on both lungs), chemotherapy, immunotherapy
Kasey S. feature profile

Kasey S., Colon Cancer, Stage 4



Symptoms: Extreme abdominal cramping, mucus in stool, rectal bleeding, black stool, fatigue, weight fluctuations, skin issues (guttate psoriasis)
Treatments: Surgeries (colectomy & salpingectomy), chemotherapy