Capecitabine (Xeloda) Side Effects | The Patient Story

Capecitabine (Xeloda) Side Effects & Patient Stories

What Is Capecitabine (Xeloda)?

Capecitabine (Xeloda) belongs to the class of chemotherapy drugs and is used in the treatment of various cancer types including breast cancer, colorectal cancer, and others.

Explore below for more on what capecitabine is, its mechanism of action, what you may encounter after taking it, and reading our patient stories detailing their experiences with capecitabine (Xeloda) and its side effects.

chemo pills

What is the Capecitabine Mechanism of Action?

Also known as an antimetabolite or cytotoxic treatment, capecitabine is taken as an oral pill. As the term anti-metabolite suggests, capecitabine fights cancer by interrupting the the process of metabolism in cells.

How to Take Capecitabine

Patients are usually instructed to take capecitabine pills orally twice a day, once in the morning and once at night. The cycle is typically three weeks long, with the daily pills taken for the first two weeks before a one-week “break.”

Most importantly, always follow your doctor or pharmacist’s instructions about dosage.

What to Expect After Capecitabine Treatment

If you or a loved one wants to prepare and learn about side effects of capecitabine, many patients often receive the drug in combination with other chemo drugs. Some of the most commonly reported side effects include, but are not limited to:

  • appetite loss
  • gastrointestinal problems, including upset stomach and constipation
  • fatigue
  • weakness
  • headaches
  • changes in taste
  • hair loss

Capecitabine Patient Experiences

Here’s what cancer patients in our TPS community had to say about their experiences with capecitabine:

Allison

It was called Xeloda. It was regimented. It was quite a long time ago but I think I took it once a day and I took it throughout the whole time I was doing my radiation. They might have ended it a week earlier than the radiation because of the side effects I was having.

My neuropathy got quite bad. Nausea was really bad. You go in often to see your doctors, to see if you need to continue on, to see if the side effects and quality of how you’re living are worse.

At that point, while I had been diagnosed and started my chemotherapy and radiation, I was gradually losing a lot of weight. 

In order to really do well during any sort of cancer treatment, you have to have some weight on you to be able to fight the effects of all the drugs that you’re having to take. 

Sometimes it’s hard to lessen side effects. They can give you medicine for some of the side effects, but then there are side effects to those side effects. So trying to figure out what worked best for me.

Gloves to help me with the cold and hot sensitivity, I was taking anti-nausea meds, meds to help me sleep because sleep would help. It was one day at a time. 

Allison R.(Colorectal Cancer, Stage 2C)

→ Read more on Allison’s story

Lindsay

So during that time, I would go off for treatment and she had offered to do a maintenance chemo. There’s a chemo pill called Xeloda and you take it orally.

Typically someone that has been diagnosed at my stage and with this cancer, even when you’re not doing the major chemo, if things are going good, they do what they call maintenance chemo.

You just consistently stay on chemotherapy, but for me, again, I’m someone who needs a balance and I was like, I’m gonna take a break. 

I’m sorry, as much as chemotherapy helps, it’s killing everything. Like it kills the cancer cells, but it’s also doing damage to everything else in your body. I just felt like I needed to take a full break from that but I always did really well.

I got seven months out of the second time before the same thing. Tumors came back and then I’d go back on the chemo. And again.

But then this last time that it had come back, I decided maybe we could try because there is a treatment where you can do the Xeloda pills with the Oxaliplatin, so instead of bringing home a pump, I would just come home and take a pill and replace the pump.

That really wiped me out. I had never experienced chemo like that where I couldn’t get out of bed and I was just like, I can’t do this, like I have two kids. I need to be able to function and so we ended up switching back to the FOLFOX.

Lindsay D. (Metastatic Colon Cancer, Stage 4, Relapse)

→ Read more on Lindsay’s story

Jelena

I was on Xeloda. I was taking that on days I went in for radiation in the morning and afternoon. The tricky part is I don’t know how much of my side effects were from radiation and how much were from chemo. 

Obviously, the burning and pain in the rectal area was from radiation. I don’t know if the fatigue and nausea I had was radiation or chemo though. I didn’t have terrible nausea, but towards the end, I lost my appetite some. Taking the anti-nausea pills helped quite a bit. 

I took 12 weeks off after the first five weeks of treatment to let the tumor keep shrinking and to let my body heal. The surgeon wanted to let the chemo and radiation do as much as they could before surgery as well as let me rest.

Jelena T. (Rectal Cancer, Stage 3A)

→ Read more on Jelena’s story

Barbara

I was on oxaliplatin which was my infusion. I started on one regimen, FOLFOX, then went to capecitabine. This was a while ago and chemo does a number on your brain. I believe I went every two weeks for my infusions. I had 12 rounds of infusions – six months, every two weeks. I would only go in for one infusion for several hours. 

I had to do seven days of an oral pill and they were horrible. Everything was horrible. I hated chemo. I thought I had delusional expectations. I had seen people who had lost their hair in other treatments do yoga, SoulCycle, and I couldn’t even drive a car.

Neuropathy in my fingers, you had this thing with shards of glass when you drink something. It’s the worst. You drink something and then you feel the shards of glass. It’s the worst. I actually don’t drink cold water anymore. I don’t like cold anything. 

I remember I tried going for a walk with my friend and it was two days after my chemo treatments. I could feel like there was something in my body, almost like the neuropathy you have in your fingers but it was all through my thighs, legs, my whole body. It was like the poison was going everywhere. My body felt so gross. 

Toward the end I couldn’t string two thoughts together. I couldn’t drive a car. I couldn’t focus after my infusion.

I could walk. I did a lot of walking through my chemo. There’s no bad weather, only bad clothing. I walked in the snow. It was my healing. It was my therapy. It was my everything.

Everybody would ask me, ‘Can we drop a casserole off? What can we do?’ I said if you want to help me, I walk twice a day. People would come over once after drop-off and another time in the afternoon and I’d go through these long walks. I got a Fitbit. I did a ton of stuff.

It was the only time that I felt like I was playing an active role in my recovery. It helped me in my mind.

Barbara M. (Colon Cancer, Stage 3)

→ Read more on Barbara’s story

Catherine

I started chemo and radiation on the same day, July 8th. It was oral chemo, so it made it a little easier. 

The reasoning behind doing chemotherapy at the same time is it makes you more sensitive to the radiation, so I took Xeloda twice a day every day for those same five weeks.

I think the side effects I had were mostly from radiation. I physically tolerated it really well, but towards the end I got extreme fatigue and diarrhea.

The fatigue was hard because I’ve never experienced something like that before. I just needed to lay down a lot.

Otherwise, physically, I handled it really well. I had a small burn on my tailbone, but that was manageable, and it healed really well.

I filled a prescription for whatever it was they recommended, but it really just healed on its own. It felt more like a sunburn than anything else. 

Catherine P. (Rectal Cancer, Adenocarcinoma, Stage 3)

→ Read more on Catherine’s story

All Capecitabine Patient Stories

Prostate Cancer Treatment Options | Jeffrey G.

Jeffrey P., Gleason Score 7



Cancer Details: Diagnosed at 59, biopsy had not detected it
1st Symptoms:None, routine PSA test, then IsoPSA test
Treatment:Laparoscopic prostatectomy
Acute Myeloid Leukemia Patient Stories on AML Diagnosis, Treatment & Side Effects Acute myeloid leukemia or AML is one type of leukemia, a cancer of the blood and bone marrow that happens when the bone marrow makes an abnormal type of white blood cell called myeloblasts, red blood cells, or platelets. It’s the most common
Acute Myeloid Leukemia  | Michele G.

Michele G., Acute Myeloid Leukemia (AML)



1st symptoms: Bruising, tiredness, shortness of breath, itching



Treatment: IV chemo, 2 stem cell transplants, targeted chemo pill
Lung Cancer Patient Stories | Ashley’s Story

Ashley R.



Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)
Refractory Multiple Myeloma | Elise’s Story

Elise D.



Diagnosis:Multiple myeloma, refractory
1st Symptoms:Lower back pain, fractured sacrum
Treatment: CyBorD, Clinial trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
Relapsed Refractory Multiple Myeloma | Beth’s Story

Beth A.



Diagnosis:Multiple myeloma, relapsed/refractory
Subtype: Non-secretory (1-5% of myelomas)
1st Symptoms:Extreme pain between shoulder blades, sternum, head, burning sensation
1st Line Treatment:VAD chemo, radiation, stem cell transplant
RR Treatment: 8 chemo regimens, successful combo→selinexor+bortezomib+dexamethasone
CLL Diagnosis Stories | Stephen’s Story

Stephen B., Chronic Lymphocytic Leukemia (CLL)



1st symptoms: difficulty swallowing and fatigue
Treatment: Rituxan, Bendamustine, targeted therapy BTK inhibitor (ibrutinib)
Newest Treatment for Multiple Myeloma  | Dr. Rafael Fonseca

Rafael Fonseca, MD



Role:Interim executive director, hematologist-oncologist
Focus:Multiple myeloma, new drug development
Institution:Mayo Clinic
Leanne Burnham, PhD Prostate Cancer | The Patient Story

Leanne Burnham, PhD



Role: Project Coordinator for Community Work, Assistant Research Professor
Focus: Prostate cancer
Provider: City of Hope
Dr. Nina Shah, Multiple Myeloma | The Patient Story

Nina Shah, MD



Role:Hematologist-oncologist, researcher
Focus:Multiple Myeloma
Institution:University of California, San Francisco (UCSF)
Dr. Kerry Rogers, CLL | The Patient Story

Kerry Rogers, MD



Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), Hairy Cell Leukemia (HCL)
Institution: OSUCCC-The James
Hodgkin’s Lymphoma Diagnosis Stories| The Patient Story

Delishea A., Hodgkin's, Stage 4B



1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, immunotherapy (Adcetris)
Topics: Finding community & support, self-advocacy
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell Lymphoma | The Patient Story

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



1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP
Lymphoma Diagnosis Stories | The Patient Story

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor
How to Help Someone with Cancer | The Patient Story
Read 10 acts of service and emotional support to help a loved one who's been diagnosed with cancer. These are suggestions from real former cancer patients who share what was most helpful for them.
Shared Decision Making: Dr. Mark Lewis | The Patient Story

Mark Lewis, MD



Role:Director of Gastrointestinal Cancer, also cancer patient, himself
Focus:Gastrointestinal (GI) cancers (colorectal, liver, pancreatic, stomach, etc.)
Provider:Intermountain Healthcare (Utah)
Farrukh Awan | The Patient Story

Farrukh Awan, MD



Role:Hematologist-oncologist, associate professor
Focus:Leukemias, Lymphomas, BMT
Institution:UT Southwestern
Ovarian Cancer Stories: Clear Cell, High Grade Serous, Stage 3A | Sara’s Patient Story

Sara I., Clear-Cell, Stage 3A



Cancer details: Account for ~ 5-10% of ovarian cancer cases
1st Symptoms: Random sharp pains, unrelated scan showed ovarian cyst
Treatment: Debulking surgery, chemotherapy (carboplatin & paclitaxel/Taxol), clinical trial of PARP inhibitors
Rectal Cancer Stories: Stage 3B to Stage 4 | Justine’s Story

Justine L., Rectal Cancer, Stage 3B/ 4



Cancer Details: Metastasized to stage 4
1st symptoms: Increasing bowel movements (up to 20/day), some rectal bleeding
Treatment: Chemoradiation (oral pill capecitabine + radiation), colectomy, FOLFOX chemo, SBRT radiation, cancer ablation, Y90 (radioembolization)
Follicular Lymphoma Stories: Non-Hodgkin’s Lymphoma, B-Cell, Stage 4 | Kim’s Story

Kim S., Follicular Lymphoma, Stage 4



1st Symptoms: Stomach pain
Treatment:Chemotherapy (rituximab & bendamustine), rituximab for 2 additional years
Fertility After Cancer Diagnosis, Egg Retrieval & Egg Freezing
From egg harvesting to retrieval, making the decision between freezing eggs or embryos, the process of giving herself shots daily, paying for the procedures, and the paperwork that brought up so many unanticipated questions, Kimberly shares every part of this intimate journey.
Egg Retrieval, Egg Freezing Before Chemotherapy & Cancer Treatment
Explore the egg harvesting, retrieval and freezing journey of a cancer patient who journals her daily schedule and the entire process.
Non-Hodgkin’s Lymphoma Stories: Marginal Zone Lymphoma (MZL) | Kimberly’s Story

Kimberly O., Marginal Zone Lymphoma



1st Symptoms:None at first, routine blood work showed suspicious results, bad nosebleed
Treatment: Chemotherapy (bendamustine & rituximab)
The White Ribbon Project | Heidi’s Lung Cancer Story

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation
Lung Cancer Stories: Small Cell Lung Cancer (SCLC) | Montessa’s Story

Montessa L., Small Cell Lung Cancer



Cancer details: Small cell lung cancer
1st Symptoms: Chest pain, lingering cough
Treatment: Chemotherapy (Cisplatin switched to carboplatin, etoposide), chest radiation, brain radiation (prophylactic)
Lung Cancer Stories: Stage 3A, KRAS+, Recurrence | Terri Conneran

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)
Al Roker | Prostate Cancer Story

Al Roker, Gleason 7+, Aggressive



Cancer Details: Aggressive but caught early
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment: Radical prostatectomy (surgery)
Chef Ryan Scott’s Cancer Story | The Patient Story
Chef Ryan Scott Shares Pediatric Cancer Story You may have seen him compete on Top Chef or on network TV morning shows like The Today Show, but in this special clip, Chef Ryan Scott does more than share a recipe. He shares his own personal colon cancer story, describing how he was just a kid
Lung Cancer Stories: Stage 4, EGFR+, Adenocarcinoma, Targeted Therapies | Ivy Elkins

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)
Mantle Cell Lymphoma Stories: Stage 4 MCL, Non-Hodgkin’s Lymphoma | Candy’s Story

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



1st Symptoms: Bump in back of head, extreme fatigue, acute weight loss
Treatment: 6 cycles bendamustine & rituximab (Rituxan), BEAM chemo before autologous stem cell transplant, 2 years maintenance chemo (Rituxan)
Testicular Cancer Stories: Stage 3C, Non-Seminoma | Matthew’s Patient Story

Matthew O., Non-Seminoma, Stage 3C



Age Diagnosed: 24
1st Symptoms: Fatigue, one swollen testicle
Treatment: BEP chemotherapy, surgeries (including complications)
Hodgkin’s Lymphoma Stories: Stage 4 | Nicole’s Patient Story

Nicole M., Hodgkin's, Stage 4



Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)
Lung Cancer Stories: Stage 1B, Neuroendocrine Tumor | Dave Bjork

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)
Colorectal Cancer Expert: Dr. Kimmie Ng, Gastrointestinal Oncologist | The Patient Story

Kimmie Ng, MD, MPH



Role: Gastrointestinal oncologist
Focus: Young-onset colorectal cancer, microbiome
Provider: Dana-Farber Cancer Institute (Boston)
Hodgkin’s Lymphoma Stories: Stage 2A | Jason’s Story

Jason F., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions
Thyroid Cancer Stories: Papillary, Stage 2 | Nancy’s Story

Nancy, Metastatic Papillary Thyroid Cancer, Stage 2



Cancer details: Spread to lymph nodes
1st Symptoms: Lump in neck
Treatment: Thyroidectomy (entire removal of thyroid), radioactive iodine treatment 
Hodgkin’s Lymphoma Stories: Stage 2B, Relapse, Transplant| Moe’s Patient Story

Moe C., Hodgkin's, 2B, Relapse



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Cancer Caregiver Stories:  Prostate Cancer, Spouse | Lisa’s Story

Lisa Matthews, Spouse to Prostate Cancer Patient



"It’s just that tough. It’s scary and difficult, and you need to give each other some space, but also give each other that support and love."
Lung Cancer Stories: Stage 4 Non-Small Cell Lung Cancer (NSCLC), ALK+ Mutation | Stephen’s Story

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)
Prostate Cancer Stories: Gleason Score 9, Surgery, Radiation | Dennis’ Patient Story

Dennis G., Gleason 9 (Contained)



Cancer Details: Staged Gleason score 9
1st Symptoms: Urinating more frequently middle of night, slower urine flow
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)
Prostate Cancer Stories: Low Gleason Score, Early Stage | Clarence’s Story

Clarence S., Early Stage



Cancer Details: PSA levels fluctuated but were never extremely elevated, cancer contained to prostate
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment:Radical prostatectomy (surgery)
Prostate Cancer Stories: Stage 4A, Gleason Score 8/9 | Bruce’s Patient Story

Bruce M., Gleason 8/9, Stage 4A



Cancer Details: Staged Gleason 6/7 pre-surgery, post-surgery changed to 8/9, PSA level at 27
1st Symptoms: Urination changes, brother's prostate cancer diagnosis
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma, Clinical Trial | Bobby’s Story

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



1st Symptoms: Fatigue, enlarged lymph nodes
Treatment: Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD
Clinical Trials, CAR T, BMT: Dr. David Miklos | The Patient Story

David Miklos, MD



Role: Chief of BMT & Cell Therapy, Clinical Director of immunotherapy program
Focus: Blood cancers (lymphoma, leukemia, myeloma), CAR T-cell therapy, blood and marrow transplantation
Provider: Stanford Medical
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma | Shari’s Patient Story

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



1st Symptoms: None, lymphoma discovered at unrelated doctor appointment
Treatment: 6 cycles R-CHOP, 5 cycles Phase 3 trial of Velcade + Rituxan (normally for multiple myeloma), allogeneic bone marrow transplant (BMT)
Non-Hodgkin Lymphoma Stories: Stage 4 Skin Lymphoma, Subcutaneous Panniculitis-Like T-Cell Lymphoma

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



1st Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatment: 12 cycles high-dose chemotherapy, allogeneic stem cell transplant
Mantle Cell Lymphoma Treatments, Relapsed/Refractory, CAR T Therapy, Clinical Trials | David Miklos

Dr. David Miklos, Clinical Director, Cancer Cell Therapy Program



Workplace: Stanford Medical Center
Specialties: Bone and Marrow Transplant, hematology, GVHD, leukemia, lymphoma, multiple myeloma,
Mantle Cell Lymphoma Stories: MCL, Stage 2, Non-Hodgkin’s Lymphoma | Tim’s Story

Tim H., Mantle Cell Lymphoma (MCL), Stage 3/2



1st Symptoms: Lump on left-side of neck that grew bigger over a couple years, new lump on right side
Treatment: 6 cycles Nordic chemo protocol, alternating cycles of R-CHOP and rituximab + high-dose cytarabine, autologous stem cell transplant
Kidney Cancer Stories: Chromophobe Renal Cell Carcinoma, Stage 2 | Nina’s Story

Nina N., Chromophome Renal Cell Carcinoma, Stage 2



Cancer details: Rare, 5% of malignant kidney tumors
1st symptoms: Blood in urine, blood clots, intense abdominal pain
Treatment: Partial nephrectomy (surgical removal of right kidney)
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma| Sheryl’s Story

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



1st 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
Waldenstrom Macroglobulinemia (WM)Stories

Sheree N., Waldenstrom Macroglobulinemia



Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Feeling anemic
Treatment: Chemotherapy (bendamustine and rituximab)
Colon Cancer Stoies: Stage 3B, Colorectal | Shelley’s Story

Shelley B., Colon Cancer, Stage 3B



Cancer Details: Had no usual first symptoms, found as a result of routine colonoscopy and endoscopy
1st Symptoms: None
Treatment:Partial colectomy, chemotherapy (FOLFOX)
Ovarian Cancer Stories: High-Grade Serous, Stage 1C | Randalynn’s Story

Randalynn V., High-Grade, Stage 1C



Cancer details:Account for up to 70% of cases
1st Symptoms:Pulling sensation when emptying bladder; abdominal pain
Treatment:Chemotherapy (Carboplatin & Paclitaxel) & surgery
Metastatic Colon Cancer Stories: Stage 4, Recurrence | Lee’s Story

Lee J., Colon Cancer, Stage 4, Recurrence



Cancer Details: Recurrence then remission
1st Symptoms: Discovered stage 4 cancer from unrelated CT scan
Treatment: Neoadjuvant chemo (FOLFOX), hemicolectomy (partial colon surgery), adjuvant chemo (FOLFOX), chemo post-recurrence (FOLFIRI), liver surgery
Non-Hodgkin’s Lymphoma Stories, PMBCL| Mags’ Story

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



1st Symptoms: Exhaustion, migraines, persistent coughs, swelling and discoloration in left arm
Treatment:(1st Line) R-CHOP chemotherapy, 6 cycles
Hodgkin’s Lymphoma Stories: Stage 4B | Ava’s Patient Story

Ava O., Stage 4B



1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma, Relapsed, CAR T-Cell Therapy

Sonia S., Primary Mediastinal (PMBCL), Relapse, CAR T-Cell Therapy



1st Symptoms: Chest pain, superior vena cava syndrome (SVCS); persistent, dry coughs, headaches
Treatment: (1st Line) R-CHOP chemotherapy, 6 cycles (2nd Line) R-ICE Chemotherapy (3rd Line) CAR T-cell therapy
Hodgkin’s Lymphoma Stories: Stage 2BX | Mara’s Patient Story

Mara T., Stage 2BX (Bulky)



1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health
Colorectal Cancer Stories: Stage 2C | Allison’s Story

Allison R., Colorectal Cancer, Stage 2C



Age at Diagnosis: 32
1st Symptoms: Extreme fatigue, unexplained weight loss, blood in stool, "blockage" feeling after eating
Treatment: Concurrent adjuvant (oral) chemotherapy + radiation, colectomy, oral chemotherapy
Leukemia Stories: Acute Lymphoblastic Leukemia (ALL) | Lauren’s Patient Story

Lauren J., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, easily bruised
Treatment: Chemo pills, chemotherapy, spinal taps, total body radiation, bone marrow transplant
Sarcoma Stories:  Synovial Sarcoma, Stage 1B, Soft Tissue Sarcoma

Kara L., Synovial Sarcoma, Stage 1B



1st Symptoms: Pain behind left knee, needle-like sensation in left foot
Treatment: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions)
Hodgkin’s Lymphoma Stories: Stage 3B | Erica’s Patient Story

Erica H., Hodgkin's, Stage 3B



Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)
Linfoma no Hodgkin: Mediastínico Primario, 1era Etapa | Historia de Arielle

Arielle Rosen, Mediastínico Primario de Células B Grandes



Primeros Síntomas: Ganglios linfáticos inflamados, fiebre, pérdida del apetito, pérdida de peso, fatiga, tos, sudor al dormir, comezón en la piel y dificultad al respirar
Tratamiento: Quimioterapia, R-EPOCH (Dosis Ajustada)
Estado: Remisión
Cáncer de Mama: Carcinoma Ductal Invasivo, Etapa 2B, Triple Negativo | Historia de Melissa

Melissa Humphrey



Primeros síntomas: Bulto en el seno izquierdo, Mastitis (inflamación del tejido del seno) al amamantar
Tratamiento: Mastectomía en el seno izquierdo, Reconstrucción del D-Flap, Mastectomía en el seno derecho tras encontrar el gen NBN, Quimioterapia
Linfoma no Hodgkin: Leucemia Linfocítica Crónica | Historia de Tony

Tony Donk, Leucemia Linfocítica Crónica



Detalles del cáncer: Linfoma no Hodgkin de crecimiento lento
Primeros síntomas: Bultito en la parte posterior del cuello que se hizo más grande en un par de semanas
Tratamiento: Píldora de quimioterapia (Imbruvica), toma 3 pastillas por noche.
Estado: Quimioterapia de mantenimiento en curso
Cáncer de Mama: Carcinoma Ductal Invasivo, Etapa 1B | Historia de Rachel

Rachel Yasui, Carcinoma Ductal Invasivo



Detalles del cáncer: Carcinoma ductal invasivo, seno derecho, Etapa 1B
Primeros síntomas: No habían síntomas, una mamografía atrasada mostró un bulto
Tratamiento: Doble Mastectomía, Quimioterapia: AC-T por seis semanas
Linfoma no Hodgkin: Mediastínico Primario de 3ra Etapa | Historia de Stephanie

Stephanie Chuang, Mediastínico Primario



Detalles del cáncer: Etapa 3
Primeros Síntomas: Hinchazón en el área del cuello y la mandíbula, fatiga y tos gutural poco frecuente
Tratamiento: Quimioterapia, R-EPOCH (Dosis Ajustada)
Estado: Remisión
Efectos Secundarios del Tratamiento Contra el Cáncer

Efectos Secundarios del Tratamiento Contra el Cáncer



Cada quien tiene una experiencia diferente con los efectos secundarios. Aquí les compartimos las experiencias de varios pacientes que compartieron sus historias con La Historia del Paciente.
Fertilidad y Embarazo Después del Tratamiento Contra el Cáncer

Fertilidad y Embarazo Después del Tratamiento Contra el Cáncer



Al enfrentarse por primera vez a un diagnóstico de cáncer, el embarazo no parece ser importante. Pero para muchos pacientes es algo que consideran, aún si no tienen planes inmediatos de tener hijos.
Tratamiento de Cáncer y Pérdida del Cabello

Tratamiento de Cáncer y Pérdida del Cabello



Perder el cabello debido a la quimioterapia no es sencillo, pero si se tiene una idea de qué esperar puede ser un poco más fácil lidiar con ello. La Historia del Paciente habló con doctores y sobrevivientes para preguntarles sobre el tema. Aquí presentamos lo que compartieron.
Organizaciones Contra el Cáncer

Organizaciones Contra el Cáncer



Navegar la vida tras un diagnóstico puede ser complejo tanto para el paciente como para el cuidador. Aquí les presentamos organizaciones que pueden ser de uso para aquellos que buscan ayuda para sí mismos, seres queridos e incluso para aquellos que desean donar tiempo o dinero en servicio de los demás. Muchas de estas organizaciones han sido recomendadas por los mismos miembros de la comunidad The Patient Story.
Cáncer de Pulmón:  ROS1 Positivo (ROS1+), Etapa 4 | Historia de Lisa

Lisa Goldman
Historias de Cáncer de Pulmón
ROS1 Positivo (ROS1+), Etapa 4




Detalles del Cáncer: ROS1+ tiende a ser bastante agresivo y se puede extender a los huesos y al cerebro
Primeros Síntomas: Tos persistente, sangrado al toser, fiebre alta y sudor al dormir
Tratamiento: Quimioterapia (4 ciclos), Mantenimiento (4 ciclos) y Píldoras de Terapia Dirigida
Estado: Continúa con las píldoras
Cáncer de Mama: Carcinoma Ductal Invasivo, Triple Positivo, Etapa IIA | Historia de Doreen

Doreen DiSalvo, Carcinoma Ductal Invasivo



Detalles del cáncer: Etapa 2B, Triple Positivo
Primeros síntomas: Bulto en el seno izquierdo
Tratamiento: Quimioterapia Neoadyuvante de TCHP, Lumpectomía, Radiación
Cáncer de Riñón: Carcinoma de Células Transicionales Invasivo | Historia de Kevin

Kevin Reamy, Carcinoma de Células Transicionales



Detalles del Cáncer: También conocido como carcinoma urotelial (invasivo), 5-10% de los cánceres de riñón
1ros Síntomas: Sangre en la orina
Tratamiento: Nefrectomía (extirpación quirúrgica del riñón y el uréter)

Estado: Remisión
Cáncer de Mama: HER2-Positivo, de Tercera Etapa | Historia de Genoa

Genoa Martell, HER2-Positivo



Detalles del cáncer: HER2-positivo, Etapa 3, (suelen ser más agresivos que HER2-negativo)
Primeros síntomas: Náusea
Tratamiento: Quimioterapia, radiación
Cáncer de Mama: Carcinoma Ductal Invasivo y Carcinoma In Situ , Etapa 2B | Historia de Margaret

Margaret Abe Koga, Carcinoma Ductal Invasivo y Carcinoma In Situ



Detalles del Cáncer: Etapa 2B
Primeros Síntomas: Dolor en el seno izquierdo e inversión del pezón izquierdo
Tratamiento: Doble Mastectomía y Quimioterapia AC-T
Cáncer Cervical: Carcinoma de Células Escamosas, Etapa 1B1 | Historia de Mila

Mila Lazarevsky, Escamoso, Etapa 1B1



Primeros Síntomas: bulto anormal en el área del cérvix, sangrado después de tener sexo
Tratamiento: Quimioterapia (Cisplatin), radiación, quimioterapia adyuvante (Carboplatin + Paclitaxel)
Estatus: Remisión
Oncólogo Especialista en Cánceres en la Sangre | Dr. Babis Andreadis

Dr. Babis Andreadis, Oncólogo Especialista en Cánceres en la Sangre



Nombre: Dr. Babis Andreadis
Papel: Oncólogo
Especialidad: cánceres de sangre.
Experiencia: 20 años.
UCSF (actual)
Universidad de Pennsylvania
Enfoque con los pacientes: Comunicación directa y clara sobre todo, desde el plan de tratamiento hasta los problemas de calidad de vida, incluida la fertilidad.
Linfoma no Hodgkin: Mediastínico Primario de 2da Etapa | Historia de Donna

Donna Sadeghi, Mediastínico Primario de Células B Grandes



Detalles del cáncer: Etapa 1-2
Primeros síntomas: Bulto visible en el centro de la garganta, comezón en las piernas, dolor al tragar (ocasional)
Tratamiento: Quimioterapia, EPOCH-R (Dosis ajustada)
Estado: Remisión

Primeros síntomas: Tos fuerte, leves problemas al respirar
Tratamiento: Quimioterapia, EPOCH-R (Dosis ajustada)
Linfoma no Hodgkin: Mediastínico Primario, 1era Etapa | Historia de Keyla

Keyla Scrogham, Mediastínico Primario de Células B Grandes, Etapa 1



Primeros síntomas: Tos fuerte, leves problemas al respirar
Tratamiento: Quimioterapia, EPOCH-R (Dosis ajustada)
Naturopathic Doctor, Cancer | The Patient Story

Yelena Deshko, N.D.



Naturopathic Doctor: Part of integrative cancer care, help with complementary therapies
Experience: 10+ years
Treatment Center: Integrative Clinic
Stomach Cancer Stories: Gastric Cancer, CDH1 Genetic Mutation | Lauren’s Story

Lauren C., Stomach Cancer Stage 1, CDH1 Mutation



Cancer details: CDH1 mutation led to “hereditary diffuse gastric cancer” (HDGC)
HDCG cancer risks: 
“Frequently, HDGC-related cancers develop in individuals before the age of 50” (NIH)
Treatments: 
Total gastrectomy (surgery to remove whole stomach)
Anal Cancer Stories: Squamous Cell Carcinoma, Stage 2 | Daniel’s Story

Daniel Garza, Stage 2



Cancer Details: Squamous cell carcinoma
1st Symptoms: Bloating, difficulty relieving himself
Treatment: Chemo, Radiation, Hyperbaric Chamber
Leukemia Stories: Acute Promyelocytic Leukemia (APL) | McKenzie’s Patient Story

McKenzie R. Acute Promyelocytic Leukemia (APL)




1st symptoms: Repeat sinus infections, abnormally heavy menstrual cycle
Treatment: Chemotherapy (ATRA oral pill & Arsenic trioxide infusions)
Rectal Cancer Stories: Stage 3, Colorectal Cancer | Joanna’s Story

Joanna H., Rectal Cancer, Stage 3



Cancer Details: Rectal adenocarcinoma



1st symptoms: Rectal bleeding, bloating, stomach aches



Treatment: FOLFOX chemo, radiation
Kidney Cancer Stories: Renal Cell Carcinoma, Stage 4 | Laura’s Story

Laura F., Renal Cell Carcinoma (Clear Cell), Stage 4



1st Symptoms: Severe headaches



Treatment: Partial nefrectomy (surgical removal of one kidney), Gamma Knife brain radiation, stereotactic body radiation therapy (SBRT), nivolumab (Opdivo), Avastin, cabozantinib
CAR T-Cell Therapy Stories: Refractory Non-Hodgkin Lymphoma, Diffuse Large B-Cell Lymphoma

Shahzad's CAR T Story



Cancer details: Refractory non-Hodgkin lymphoma, stage 4
1st Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
FDA approved: October 2017
Cancer Caregiver Stories | The Patient Story

Kris Curl Johnston, Program Manager



Program Manager: primary contact for area oncologists and patients needing a phase I trial.
Experience: ~20 years
Hospital size: Large teaching institution
Oncology Social Worker Q&A: Supporting Cancer Patients and Hospitals

Lia Akhilanda, Social Worker



Social worker: help cancer patients & caregivers on issues like insurance coverage, disability, and housing during treatment.
Experience: 10 years
Hospital size: Large teaching institution
Certified Licensed Genetic Counselor, Oncology

Angela Brickle, Genetic Counselor



Genetic counselor: helps cancer patients and their families with genetic testing
Experience: ~5 years
Hospital size: Mid-sized edu
Cancer Nurse | Oncology, Bone Marrow Transplant, Stem Cell Transplant

Jennifer Hagerty, Cancer Clinic Nurse



Clinic nurse: works mostly outpatient
Experience: 12 years
Hospital size: Large teaching institution
Ask A Cancer Nurse | Former Cancer Survivor

Brianna Banachoski, Hem-Onc Nurse



Nurse: works 12-hour shifts on blood oncology floor
Experience: was a lymphoma patient, became a nurse in early 2019
Hospital size: mid-range
Cancer Nurse Navigator: What Questions to Ask Nurses

Bernadette Lucas-Burch, Nurse Navigator



Nurse Navigator: help cancer patients and caregivers at diagnosis through treatment.
Experience: 35+ years
Hospital size: Mid-range but largest in the region
CLL Treatment: Dr. Tim Fenske | The Patient Story

Tim Fenske, MD, MS



Role: Hematologist-Oncologist
Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy
Provider: Medical College of Wisconsin
Dr. Irene Ghobrial, Multiple Myeloma | The Patient Story

Irene Ghobrial, MD



Role: Clinical investigator and professor of hematological oncology
Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials
Provider:Dana-Farber Cancer Institute (Boston)
Hematologist, Dr. Edmund Tai | The Patient Story

Edmund Tai, M.D.



Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)
Lung Cancer (Thoracic) Oncologist, Immunotherapy: Dr. D. Ross Camidge | The Patient Story

Dr. D. Ross Camidge, M.D., Ph.D.



Role: Thoracic oncologist, Director of the Thoracic Oncology Clinical Research Programs
Focus: Lung cancer, small cell (Immunotherapy), EGFR (Osimertinib), ALK (Alectinib), ROS1 (Crizotinib), BRAF (Dabrafenib & Trametinib), NTRK
Provider: Univ. of Colorado
Dr. Jacqueline Barrientos, CLL | The Patient Story

Jacqueline Barrientos, MD



Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), lymphoma, 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Provider: Northwell Health (NYC)
Dr. James Berenson, Multiple Myeloma| The Patient Story

James Berenson, MD



Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center
Radiation Oncologist, Dr. Kenneth Biehl: Brachytherapy, External Beam Radiation Treatment, IMRT | The Patient Story

Dr. Kenneth Biehl, M.D.



Role: Radiation oncologist
Focus: Specializing in radiation therapy treatment for all cancers | Brachytherapy, External Beam Radiation Treatment, IMRT
Provider: Salinas Valley Memorial Health
Doug Blayney, Breast Cancer | The Patient Story

Doug Blayney, MD



Oncologist: Specializing in breast cancer | HER2, Estrogen+, Triple Negative, Lumpectomy vs. Mastectomy
Experience: 30+ years
Institution: Stanford Medical
Dr. Babis Andreadis, Leukemia, Lymphoma | The Patient Story

Babis Andreadis, MD



Oncologist: Specializing in blood cancers like lymphoma, leukemia, and multiple myeloma
Experience: 20+ years
Institution: Univ. of California, San Francisco (UCSF)
Caregivers: Daughter of  Cancer Patient | Beth’s Story
Beth Pauvlinch, Daughter of Breast Cancer Patient
“Cancer can make you really angry. It’s okay to be mad. It’s okay to have feelings. I chose to get my anger out in positive ways.“
Caregivers: Expert Perspective | Barbara Kivowitz
Barbara Kivowitz, Caregiver Expert & Author
“A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”
Cancer Caregiver: Non-Hodgkin Lymphoma (Refractory) Patient, Spouse | Nicole’s Story, CAR T-Cell Therapy
Nicole Bhat, Spouse of Non-Hodgkin Lymphoma Patient (Refractory)
“If you can't take care of yourself, you can't take are of anyone else.”
Cancer Naturopathic Doctor & Caregiver of Lymphoma Patient

Dr. Heather Paulson



Naturopathic Doctor: Part of integrative cancer care, help with complementary therapies
Experience: 15 years
Treatment Center: Integrative Clinic
Caregiver: Spouse of a Metastatic Cancer Patient | Willie’s Story
Willie Williams, Spouse of Thyroid Cancer Patient (Metastatic)
“If you volunteer, just make sure you can be there. Be whatever they need you to be, but don’t force yourself into a situation because that can be really frustrating.”
Thyroid Cancer Stories: Papillary, Stage 2| The Patient Story

Jenna C., Metastatic Papillary Thyroid Cancer, Stage 2



Cancer details: Spread to lymph nodes
1st Symptoms: Hoarse voice, painful talking, lump in neck
Treatment: Thyroidectomy (entire removal of thyroid), radioactive iodine treatment
Thyroid Cancer Stories: Papillary, Stage 2 | The Patient Story

Greg S., Metastatic Papillary Thyroid Cancer, Stage 2



Cancer details: Spread to lymph nodes
1st Symptoms: Fatigue, lump in neck near Adam’s apple
Treatment: Thyroidectomy (entire removal of thyroid), radioactive iodine treatment
Thyroid Cancer Stories: Papillary, Stage 1 | The Patient Story

Sarah J., Papillary Thyroid Cancer, Stage 1



Cancer details: Spread to lymph nodes
1st Symptoms: Enlarged thyroid
Treatment: Thyroidectomy (entire removal of thyroid), partial neck dissection, radioactive iodine treatment
Thyroid Cancer Stories: Papillary, Stage 1 | The Patient Story

Jamie K., Papillary Thyroid Cancer



Cancer details: Most common kind of thyroid cancer
1st Symptoms: Difficulty swallowing, lump on neck
Treatment: Thyroidectomy (entire removal of thyroid), radioactive iodine treatment
Thyroid Cancer Stories: Papillary, Stage 1 | The Patient Story

Carmen Y., Papillary Thyroid Cancer



Cancer details: Most common kind of thyroid cancer
1st Symptoms: Swollen neck
Treatment: Thyroidectomy (entire removal of thyroid), radioactive iodine treatment
Testicular Cancer Stories: Embryonal Carcinoma, Non-Seminoma, Stage 2B | Hugo Toovey

Hugo T., Non-Seminoma, Stage 2B



Age at Diagnosis: 21
1st Symptoms:
Pea-sized lump on right testicle
Treatment: Surgical removal of right testicle, lymph node resection, chemotherapy

Testicular Cancer Stories: Non-Seminoma Germ Cell, Stage 3C

Steve L., Non-Seminoma, Stage 4



Age at Diagnosis: 25
1st Symptoms:
Grape-sized tumor on neck; hip and pelvis pain; ultrasound revealed tumor on right testicle
Treatment:
Chemotherapy (BEP), removal of right testicle, lymph node resection (RPLND), and tumor dissection in the neck
Testicular Cancer Stories: Non-Seminoma, Stage 1 | Mikael’s Patient Story

Mikael H., Non-Seminoma, Stage 1



Age at Diagnosis: 32
1st Symptoms: Fatigue, one swollen testicle
Treatment: Surgery (removal and reconstruction), radiation, hormone therapy
Testicular Cancer Stories: Seminoma, Stage 1 | Rick’s Patient Story

Rick H., Seminoma, Stage 1



Age at Diagnosis: 34
1st Symptoms: Noticed one testicle larger than the other, dull pain
Treatment: Orchiectomy (surgical removal of one testicle), neoadjuvant chemo (1 infusion of Carboplatin)
Skin Cancer Stories: Melanoma, Stage 3A | Ellis’ Story

Ellis E., Melanoma, Stage 3A



Cancer details: Accounts for 1% of all skin cancers
1st Symptoms:
Changing mole on arm
Treatment:
Lymph node resection, immunotherapy (Opdivo), targeted therapy (BRAF inhibitor)
Sarcoma Stories: Gastrointestinal Stromal Tumor (GIST) | Louis’ Story

Louis D., Gastrointestinal Stromal Tumor (GIST)



Cancer details: Tumors that start in wall of digestive tract or gastrointestinal (GI) tract
1st Symptoms: Feeling the need for constant urination
Treatment: Surgery to take out the tumor, maintenance chemotherapy (3 years)
Sarcoma Stories: Ewing Sarcoma, Stage 1B | Brandi’s Story

Brandi B.,
Ewing Sarcoma,
Stage 1B (Soft Tissue)




Cancer Details: Adult case of soft tissue Ewing sarcoma, not bone sarcoma
1st Symptoms: Extreme fatigue, lump in pelvic area
Treatment: 17 cycles of chemotherapy in-patient at hospital with (leg-sparing) surgery in between
Sarcoma Stories:  Ewing Sarcoma (Bone)| Ariane’s Story

Ariane B., Ewing Sarcoma (Bone)



Cancer details: Most common in kids, young adults (teens through mid-20s)
1st Symptoms: Aching in arm, lump in forearm
Treatment: Chemo (14 rounds), surgery (of radius), radiation (36 sessions)
Sarcoma Stories: Soft Tissue Sarcoma, Desmoid Tumor, Stage 4, AYA Cancer

Alicia B., Desmoid Tumor, Stage 4



Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: lump found in right armpit
Treatment: Chemo, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation
Sarcoma Stories: Soft Tissue Sarcoma, Desmoid Tumor, AYA Cancer

Demi D., Desmoid Tumor



Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: fatigue, lump in hip
Treatment: Surgery, radiation, chemo
Sarcoma Stories: Soft Tissue Sarcoma, Desmoid Tumor | Ashley’s Patient Story

Ashley W., Desmoid Tumor



Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: leg tightness, increased swelling in leg
Treatment: Chemo infusion (Methotrexate, Navelbene), oral chemo (Nexovar)
Sarcoma Stories: Soft Tissue Sarcoma, Stage 3, Undifferentiated Pleomorphic Sarcoma

Nicole B., Undifferentiated Pleomorphic Sarcoma, Stage 3



Cancer Details: <5% of adult sarcomas
1st Symptoms: severe intolerance to food, nausea
Treatment: Cholecystectomy, Chemo (Gemcitabine and Taxotere), Whipple surgery
Sarcoma Stories:  Synovial Sarcoma, Soft Tissue Sarcoma, Stage 3

Jillian J., Synovial Sarcoma, Stage 3



Cancer Details: 5% to 10% of sarcomas
1st Symptoms: pain in leg over 15 years
Treatment: Tumor resection, thoracotomy
Rare Cancers: Gestational Trophoblastic Neoplasia, Grade 3 | Caroline’s Story

Caroline Chisolm, Gestational Trophoblastic Neoplasia, Grade 3



Cancer Details: As a result of a molar pregnancy
1st Symptoms:
Morning sickness and an unusually high beta hCG
Treatment:
EMACO chemotherapy
Rare Cancer Stories: Neuroendocrine Tumor, Stage 4 | The Patient Story

Jennifer Petersen, Neuroendocrine Tumor, Stage IV



Cancer details: Unknown site of origin, metastasis
1st Symptoms: Pain in upper back
Treatment: Chemotherapy, immunotherapy
Prostate Cancer Stories: Gleason Score 6, Stage 2 to Stage 4, Metastatic | Steve’s Story

Steve R., Stage 2



Cancer Details: Started at stage 2 and gradually progressed to stage 3, and then to stage 4 with metastasis to lymph nodes
1st Symptoms: Rising PSA score
Treatment: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177
Ovarian Cancer Stories: Germ Cell Tumor,  Stage 3B, Pediatric Treatment | Gautami’s Story

Gautami M., Germ Cell, Stage 3B



Cancer details: Pediatric case, diagnosed at 13
1st Symptoms:Swollen abdomen
Treatment: Surgery (to remove cyst and ovary), chemotherapy (Bleomycin, Carboplatin)
Ovarian Cancer Stories: High Grade, Stage 4, Metastatic | Susan’s Story

Susan R., High-Grade, Metastatic



Cancer details:Account for up to 70% of cases
1st Symptoms:Pulling sensation when emptying bladder; abdominal pain
Treatment: Chemotherapy (Carboplatin & Paclitaxel) & surgery
Ovarian Cancer Stories: High-Grade Serous Carcinoma, Stage 3C, BRCA1+ | Shirley’s Story

Shirley P., High-Grade Serous Carcinoma, Stage 3C, BRCA1+



Cancer details:Account for up to 70% of cases
1st Symptoms:Pulling sensation when emptying bladder; abdominal pain
Treatment: Chemotherapy (Carboplatin & Taxol), de-bulking surgery & PARP inhibitors
Ovarian Cancer Stories: Stage 3C, BRCA1+ | Suzann’s Story

Suzann B., High-Grade Serous Carcinoma, Stage 3C, BRCA1+



Cancer details:Account for up to 70% of cases
1st Symptoms:Inability to urinate
Treatment: Chemotherapy, de-bulking surgery & total hysterectomy
Ovarian Cancer Stories: Low Grade Serous Carcinoma, Stage 4B | Cheyann Shaw

Cheyann S., Low-Grade Serous Carcinoma, Stage 4B



Cancer details: Makes up approximately 10% of cases of serous ovarian cancer.
1st Symptoms:
Stomach pain, constipation, lump on right side above pubic area
Treatments:
Cancer debulking surgery, chemotherapy (Carboplatin & Taxol, then Doxil & Avastin)
Ovarian Cancer Stories: Low Grade Serous, Stage 3C | Alisa’s Story

Alisa M., Low-Grade Serous Ovarian Cancer



Cancer details:Makes up approximately 10% of cases of serous ovarian cancer
1st Symptoms:Occasional rectal pain, acid reflux, bloating, night sweats
Treatment: Debulking surgies, chemotherapy, immunotherapy
Ovarian Cancer Stories: Low Grade Serous, Stage 3 | Maurissa’s Story

Maurissa M., Low-Grade Serous Ovarian Cancer



Cancer details:Makes up approximately 10% of cases of serous ovarian cancer
1st Symptoms:Pressure on bladder, throbbing pain, could feel growth on right side of abdominal area
Treatment:5 surgeries (official diagnosis after 3rd)
Ovarian Cancer Stories: Epithelial, Stage 4, Metastatic | Jodi’s Story

Jodi S., Epithelial Ovarian Cancer, Stage 4 (IV)



Cancer Details: Metastatic
1st Symptoms: Extreme bloating, extremely tight skin, changes in digestive tract, significant pelvic pain, sharp-shooting pains down inner thighs, extreme fatigue
Treatment: 4 rounds of chemotherapy, hysterectomy, 3 rounds of additional chemotherapy
Ovarian Cancer Stories: Epithelial, Stage 2C & Uterine Cancer, Stage 1A | Heather’s Story

Heather M., Epithelial Ovarian Cancer, Stage 2



Cancer Details: Also diagnosed w/uterine cancer 1A same time.
1st Symptoms: Extreme bloating, pinching pain in right side of abdomen, extreme fatigue
Treatment: Surgery (total hysterectomy), chemo (Taxol once a week for 18 week, Carboplatin every 3 weeks), concurrent clinical trial (Avastin) every 3 weeks
Multiple Myeloma Stories: Smoldering Multiple Myeloma (SMM) | Maui Bigelow

Maui B.



Diagnosis: Smoldering myeloma
Cancer Details:
Smoldering myeloma is pre-symptomatic or pre-treatment multiple myeloma
1st Symptoms:
Inflammatory eye disease, uterine bleeding
Treatment:
N/A
Multiple Myeloma Stories: IgG Lambda |  Scott’s Patient Story

Scott C.



Diagnosis: Multiple myeloma, relapsed/refractorySubtype:IgG lambda (majorityof myelomas)
1st Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Treatment:
Clinical trial, chemo, kyphoplasty, stem cell transplant
Multiple Myeloma Stories: Stage 3 | Melissa’s Patient Story

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
Multiple Myeloma Stories, IgG Stage 3 | Jude’s Patient Story

Jude A.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Pain in back, hips and ribs; difficulty walking
Treatment:
Bilateral femoral osteotomy, reversal due to infection; chemotherapy
Light Chain Multiple Myeloma| Carlos’ Patient Story

Carlos C.



Diagnosis: Multiple myeloma, Light Chain, Stage 2
1st Symptoms:
Back pain and spasms
Treatment:
Back surgery to fuse T1 and T2, chemotherapy (RVD) and stem cell transplant
Relapsed Refractory Multiple Myeloma | Clay’s Story

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
Lung Cancer Stories: Non-Small Cell Lung Cancer (NSCLC), ROS1+, Stage 4 | Lisa’s Story

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)
Lung Cancer Stories: Non-Small Cell Lung Cancer (NSCLC), ALK+, Stage 4, Metastatic | Tara’s Story

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)
Lung Cancer Stories: Non-Small Cell Lung Cancer, Invasive Mucinous Adenocarcinoma, Stage 1B

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung
Leukemia Story: Acute Promyelocytic Leukemia (APL) | Leslie’s Patient Story

Leslie T., Acute Promyelocytic Leukemia (APL)



Cancer details:A sub-type of AML
1st symptoms:Fatigue, joint paint, migraines, bruising easily, trouble breathing
Treatment:Chemotherapy (Atra & arsenic)
Leukemia Stories: Acute Myeloid Leukemia (AML), Relapse, Clinical Trial | Mary Clare’s Story

Mary Clare B., Acute Myeloid Leukemia (AML)



Cancer details: Relapsed but in remission after 2nd transplant
1st symptoms: Extreme fatigue, upset stomach, bad & persistent headaches
Treatment: Chemotherapy, radiation, 2 bone marrow transplants
AML MDS | The Patient Story

Nicole T., Acute Myeloid Leukemia (AML)



1st symptoms: Severe itchiness, night sweats, fatigue
Treatment: Chemotherapy, bone marrow transplant
Leukemia Stories: Acute Monocytic Leukemia, AML M5 | Hayley’s Story

Hayley A., Acute Myeloid Leukemia (AML), M5



Cancer details: Most common type of acute leukemia in adults
1st symptoms: Severe fatigue and excessive bleeding after oral surgery
Treatment: Chemotherapy, bone marrow transplant
Leukemia Stories: Acute Myeloid Leukemia (AML), FLT3 Mutation | Luisa’s Patient Story

Luisa L., Acute Myeloid Leukemia (AML)



Cancer details: Most common type of acute leukemia in adults
1st symptoms: Painful hives on legs & migraines
Treatment: 3 cycles of chemo, total body radiation & stem cell transplant
Leukemia Stories: Acute Myeloid  Leukemia (AML)  | Sasha’s Patient Story

Sasha T., Acute Myeloid Leukemia (AML)



1st symptoms: Easily bruised and swollen, painful hip
Treatment: 4 chemo infusions, bone marrow transplant
Leukemia Stories: Acute Lymphoblastic Leukemia (ALL), Childhood Leukemia | William’s Story

William Y., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, achey hands
Treatment: Chemotherapy, CAR T-Cell therapy
Leukemia Stories: Acute Lymphoblastic Leukemia (ALL) | Ciara’s Patient Story

Ciara T., Acute Lymphoblastic Leukemia (ALL)



Cancer details: Treatment without blood tranfusions
1st symptoms: Fatigue, shortness of breath, night sweats, petechiae
Treatment: Chemotherapy
Leukemia Stories: Acute Lymphoblastic Leukemia (ALL), T-Cell, Relapse | Christine’s Story

Christine M., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Enlarged lymph nodes, pain in abdomen, nausea
Treatment: Chemotherapy, bone marrow transplant
Leukemia Stories: Acute Lymphoblastic Leukemia (ALL), B-Cell, PH- | Veronica’s Story

Veronica B., Acute Lymphoblastic Leukemia (ALL)




1st symptoms: Mild shortness of breath and palpitations
Treatment: Chemo, targeted therapy, double cord transplant
Leukemia Story: Acute Lymphoblastic Leukemia (ALL), Relapse | Casey’s Story

Casey H., Acute Lymphoblastic Leukemia (ALL)




1st symptoms:
Lump on throat, extreme fatigue, shortness of breath, bruising easily
Treatment:
Chemo, immunotherapy, radiation, stem cell transplant
Leukemia Stories: Acute Lymphoblastic Leukemia (ALL)  | Evan’s Patient Story

Evan L., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, easily bruised
Treatment: Chemo infusions, chemo pills, spinal taps, cranial radiation
Dr. Christopher Weight | Urological Oncologist

Dr. Christopher Weight, M.D.



Role: Center Director Urologic Oncology
Focus: Urological oncology, including kidney, prostate, bladder cancers
Provider: Cleveland Clinic
Kidney Cancer Stories: Papillary Renal Cell Carcinoma (pRCC) | Bill’s Story

Bill P., Papillary Renal Cell Carcinoma, Stage 3, Type 1



Cancer details: < 10% of kidney cancers
1st Symptoms: Kidney stone, lower back pain, sore/stiff leg, deep vein thrombosis (DVT) blood clot
Treatment: Nephrectomy (surgical removal of kidney and ureter)
Kidney Cancer Stories: Transitional Cell Carcinoma, Urothelial, Invasive | Kevin’s Story

Kevin R., Transitional Cell Carcinoma



Cancer details: Also known as urothelial (invasive), 5-10% of kidney cancers
1st Symptoms: Blood in urine
Treatment: Nephrectomy (surgical removal of kidney and ureter)
Kidney Cancer Stories: Renal Cell Carcinoma, Stage 2 | Rachel’s Story

Rachel R., Renal Cell Carcinoma, Stage 2



Cancer details: > 90% of malignant kidney tumors
1st symptoms: Excessive fatigue, blood in urine, sharp abdominal, back pain
Treatment: Laparoscopic nephrectomy (surgical removal of kidney)
Hodgkin’s Lymphoma Stories: Nodular Sclerosis, Stage 4A | Lia’s Story

Lia S., Nodular Sclerosis, Stage 4A



Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
Treatment:
ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Stage 4, Classical | CC’s Story

CC W., Hodgkin's, Stage 4



Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
Hodgkin’s Lymphoma Stories: Stage 3A, Refractory to Gray Zone Lymphoma | Kayla’s Story

Kayla T., Hodgkin's, Stage 3A



Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant
Hodgkin’s Lymphoma Stories: Classical, Stage 3, Relapse | Tylere’s Story

Tylere P., Hodgkin, Stage 3



Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Hodgkin’s Lymphoma Stories: Classical, Stage 2X| Jade’s Patient Story

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Hodgkin’s Lymphoma Stories: Classical, Stage 2B | Katee’s Patient Story

Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: AAVD chemo, clinical trial w/brentuximab (Adcetris) + nivolumab (Opdivo) immunotherapy
Hodgkin’s Lymphoma Stories: Stage 2B | The Patient Story

Charlie B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Classical, Stage 2BX | Stephanie’s Story

Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)
Hodgkin’s Lymphoma Stories: Stage 2BX, Relapse | Fabiola’s Patient Story

Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Hodgkin’s Lymphoma Stories: Classical, Stage 2A, AYA Cancer | Wade’s Patient Story

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)
Hodgkin’s Lymphoma Stories: Stage 2A, Relapse, Nodular Sclerosis | Lauren’s Patient Story

Lauren C., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Hodgkin’s Lymphoma Stories: Classical, Stage 2A | Helicon’s Patient Story

Helicon K., Hodgkin's, Stage 2A



Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Hodgkin’s Lymphoma Stories: Stage 2A, Adolescent (AYA) Cancer | Logan’s Patient Story

Logan A., Hodgkin's, Stage 2A



Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
Treatment:
4 cycles of ABVE-PC chemo
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Lani’s Patient Story

Lani S., Hodgkin's, Stage 2



Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Danielle’s Patient Story

Danielle D., Hodgkin's, Stage 2



Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Hodgkin’s Lymphoma Stories: Nodular Sclerosis, Stage 1B | Madi’s Story

Madi J., Hodgkin's, Stage 1B



Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
Treatment:
3 rounds (6 infusions) of ABVD chemo
Rectal Cancer Stories: Adenocarcinoma, Stage 3C | Maria’s Story

Maria A., Rectal Cancer, Stage 3C



Cancer Details: 7cm mass found
1st Symptoms: Fatigue, weight loss, fast heart rate, bladder infection
Treatment: Chemo, radiation, surgery for tumor removal
Rectal Cancer Stories: Stage 3A, Colorectal | Jelena’s Story

Jelena T., Rectal Cancer, Stage 3A



Cancer Details: 7cm mass found
1st Symptoms: Gas changes, rectal bleeding
Treatment: Chemo, radiation, surgery for tumor removal, ileostomy reversal
Rectal Cancer Stories: Adenocarcinoma, Stage 3B to Stage 4, Lynch Syndrome | Jackie’s Story

Jackie S., Rectal Adenocarcinoma, Stage 3B, Lynch Syndrome



Cancer Details: Rectal adenocarcinoma; 98% of rectal and colon cancers are adenocarcinomas
1st Symptoms: Blood in stool, constipation
Treatment: Chemo, radiation, surgery, immunotherapy
Rectal Cancer Stories: Adenocarcinoma, Stage 3, Colorectal | Catherine’s  Story

Catherine P., Rectal Cancer, Stage 3



Cancer Details: Rectal adenocarcinoma; 98% of rectal and colon cancers are adenocarcinomas
1st Symptoms: Rectal bleeding, constipation, bloating
Treatment: Fertility treatments, chemo, radiation, tumor resection surgery
Metastatic Colon Cancer Stories: Stage 4, Relapse, Colorectal | Lindsay’s Story

Lindsay D., Colon Cancer, Stage 4



Cancer Details: Diagnosed at 32, cancer spread to ovary and lung
1st Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)
Colon Cancer Stories: Stage 3, Colorectal | Barbara’s Story

Barbara M., Colon Cancer, Stage 3



Cancer Details: Family history wasn’t flagged, should have had colonoscopy earlier
1st Symptoms: Stomach discomfort, difficult to process food
Treatment: Colectomy, Chemo (FOLFOX, CAPOX)
Colon Cancer Stories, Stage 2, Colorectal Cancer, Lynch Syndrome | Shannon’s Story

Shannon C., Colon Cancer, Stage 2A



Cancer Details: Diagnosed at 29, tested positive for Lynch Syndrome
1st Symptoms: Severe pains after eating
Treatment: Partial colectomy
Colon Cancer Story, Stage 2, Colorectal Cancer, Lynch Syndrome | Chris’ Story

Chris T., Colon Cancer, Stage 2



Cancer Details: Discovered Lynch Syndrome after genetic testing
1st Symptoms: Found the cancer as a result of family history, early colonoscopy
Treatment: Partial colectomy
Colon Cancer Stories: Sigmoid, Stage 1, Colorectal Cancer | Rachel’s Story

Rachel B., Sigmoid Colon Cancer, Stage 1



Cancer Details: The sigmoid colon (or pelvic colon) is the part of the large intestine that is closest to the rectum
1st Symptoms: Stomach discomfort, nausea, bloating, blood in stool
Treatment: Colectomy
Colon Cancer Stories: Stage 1, Colorectal Cancer | Hugo’s Story

Hugo T., Colon Cancer, Stage 1



Cancer Details: Diagnosed 2 weeks after 5 years remission from testicular cancer
1st Symptoms: Inflamed bowel
Treatment: Subtotal colectomy, immunotherapy
Colon Cancer Stories: Stage 1 Diagnosis, Lynch Syndrome | Shannon’s Story

Shannon M., Colon Cancer, Stage 1




Cancer Details:
Found the cancer as a result of her Lynch Syndrome
1st Symptoms: Routine colonoscopy found polyp
Treatment: Partial colectomy
Cervical Cancer Stories: Adenocarcinoma, Stage 2B | Kristine’s Story

Kristine M., Adenocarcinoma, Stage 2B



1st Symptoms: Tumor found during postpartum pap smear
Treatment:
Colposcopy with endocervical curettage, cone biopsy, total abdominal radical open hysterectomy with lymph node removal
Metastatic Cervical Cancer Stories: Squamous Cell, Stage 4B | Brittany’s Story

Brittany W., Squamous Cell, Stage 4B



1st Symptoms: Spotting after sex, eventual significant bleeding at random
Treatment: Chemotherapy (Cisplatin) concurrent with radiation, 6 rounds adjuvant chemo, 2nd round radiation, immunotherapy trial, targeted therapy
Cervical Cancer Stories: Squamous Cell, Stage 3B | Marissa’s Story

Marissa, Squamous, Stage 3B



1st Symptoms: Excessive and prolonged vaginal bleeding
Treatment:
Chemotherapy (Cisplatin), radiation, brachytherapy
Cervical Cancer Stories: Squamous Cell, Stage 1B1 | Mila’s Story

Mila L., Squamous, Stage 1B



1st Symptoms: Abnormal lump in cervix area, bleeding after sex
Treatment: Chemotherapy (Cisplatin), radiation, adjuvant chemotherapy (Carboplatin + Paclitaxel
Breast Cancer Stories: BRCA 2 Previvor | Erika’s Story

Erika S., BRCA2 Mutation



Cancer Details: Previvor
1st Symptoms: Family history of breast cancer, no physical symptoms
Treatment: Preventative double mastectomy, direct implant reconstruction
Breast Cancer Stories: IDC & DCIS, Stage 2B, ER+ | Cat’s Story

Cat L., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast radiating from lump
Treatment: Bilateral mastectomy, chemotherapy
Breast Cancer Stories: Invasive & Lobular, Stage 3A,  ER+ | Tina’s Story
Tina C., Ductal & Lobular Carcinoma in Situ, Stage 3A, ER+



Cancer details: Both ductal and lobular, estrogen receptor positive. Different than breast cancer Tina’s mom was diagnosed w/ twice.
1st Symptoms: Sunken in nipple of right breast
Treatment: Double mastectomy, chemotherapy, radiation, hormone therapy
Breast Cancer Stories: IDC & DCIS, Stage 2 | Margaret’s Story

Margaret A., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast, left nipple inverting
Treatment: Double mastectomy, chemo (AC-T), Radiation
Breast Cancer Stories: DCIS, Stage 0, ER+, Paget’s Disease | Natalie’s Story
Natalie W., Ductal Carcinoma In Situ, Stage 0, ER+; Paget’s Disease



Cancer Details: Only 1-4% of breast cancer cases also includes Paget’s
1st Symptoms: 2cm lump found in right breast
Treatment: Lumpectomy, double subcutaneous mastectomy, hormone therapy
Breast Cancer Stories: DCIS, Stage 4, Metastatic, Triple Positive, Grade 2, Relapse Twice | Alison’s Story

Alison R., Partially Differentiated DCIS, Stage 4 Metastatic



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in underarm/breast
Treatment: Chemotherapy, surgery, radiation, targeted therapy
Metastatic Breast Cancer Story: IDC, TNBC (Triple Negative), Stage 2B, Relapse, Stage 4 | Erin’s Story

Erin C., IDC, Triple Negative, Stage 2B/4 Metastatic



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Pain in breast
Treatment: Surgery, chemotherapy, radiation
Metastatic Breast Cancer Stories: IDC, Stage 4, Triple Positive | Shari’s Story

Shari S., Stage 4, Metastatic, Triple Positive



Cancer details: Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in breast
Treatment: Surgery, chemotherapy, radiation
Metastatic Breast Cancer Stories: IDC, HER2+, Stage 3, Relapse, Stage 4 | Renee’s Story

Renee N., IDC, Stage 3, HER2+



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump in breast
Treatment: chemotherapy, bilateral mastectomy, radiation
Breast Cancer Stories: IDC, Stage 3, Grade 3, Triple Negative (TNBC), BRCA1+ | Stephanie’s  Story

Stephanie J., Stage 3, Triple Negative, BRCA1+



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer
1st Symptoms: Lump in left breast
Treatment: Chemotherapy, surgery
Breast Cancer Story: Pregnant with Cancer, IDC, Stage 2B to Stage 3 | Andrea’s Story

Andrea A., IDC, Stage 2B/3, ER+



Cancer details: Found cancer while pregnant
1st Symptoms: Divot in breast
Treatment: Chemotherapy, radiation, surgery
Breast Cancer Stories: IDC, Stage 3, HER2+ | Genoa’s Story

Genoa M., Stage 2, HER2-Positive



Cancer details: HER2-positive tends to be more aggressive than HER2-negative cases
1st Symptoms: Nausea
Treatment: Chemotherapy, radiation
Breast Cancer Stories: IDC, Stage 2B, TNBC, Pregnant with Cancer | Melissa’s Story

Melissa H., Stage 2B, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Lump in left breast
Treatment: Mastectomy, chemotherapy, 2nd mastectomy
Breast Cancer Stories: IDC, Stage 2A,Triple+ | Doreen’s Story

Doreen D., IDC, Stage 2A, Triple Positive



Cancer details: IDC is most common kind of breast cancer. Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in left breast
Treatment: Neoadjuvant chemotherapy (TCHP), lumpectomy, radiation
Breast Cancer Stories: IDC, Triple +, Stage 3 | Stefanie’s Story

Stefanie H., IDC, Triple Positive, Stage 3



Cancer details: IDC is most common kind of breast cancer. Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in breast
Treatment: chemotherapy, lumpectomy, radiation
Breast Cancer Stories: IDC, Stage 2B, Soft Tissue Sarcoma as 2nd Cancer | Monica’s Story

Monica H., IDC, Stage 2B



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Tightness and lump in left breast
Treatment: Chemotherapy, radiation, surgery
IDC, Stage 2B, ER+ | Breast Cancer Story

Callie M., IDC, Stage 2B, Grade 2, ER+



Cancer Details: ER positive = estrogen receptor positive
1st Symptoms:
Dimpling/lump found on breast
Treatment:
Mastectomy, AC/T chemotherapy, hysterectomy, reconstruction
Breast Cancer Stories: Triple Negative (TNBC), IDC,Stage 2, Grade 3, BRCA1+ | Joy’s Story

Joy R., IDC, Stage 2, Triple Negative



Cancer details: Triple negative doesn’t have any receptors commonly found in breast cancer making it harder to treat
1st Symptoms: Lump in breast
Treatment: Chemo, double mastectomy, hysterectomy
Breast Cancer Stories: IDC, Stage 2B, ER+, PR+| Caitlin’s Story

Caitlin J., IDC, Stage 2B, ER/PR Positive



Cancer Details: ER/PR positive = estrogen and progesterone receptor positive
1st Symptoms:
Lump found on breast
Treatment:
Lumpectomy, AC/T chemotherapy, radiation, and hormone therapy (Lupron and Anastrozole)
Breast Cancer Stories:  IDC, Stage 2, Triple Positive (Triple+) | Rach’s Story

Rach D., IDC, Stage 2, Triple Positive



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump in right breast
Treatment: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Breast Cancer Stories: Invasive Ductal Carcinoma (IDC), Stage 1B | Rachel’s Story

Rachel Y., IDC, Stage 1B



Cancer details: IDC is most common kind of breast cancer. Stage 1B.
1st Symptoms: None, caught by delayed mammogram
Treatment: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Breast Cancer Stories: IDC, Stage 1, ER+, PR+, HER2- | Amelia’s Story

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump found during self breast exam
Treatment: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen
Coronavirus Stories: Tina Baker (Recovery) | Remdesivir

Tina Baker’s Story Pt. 2 (Recovery)



Infection: Work trip to London
Home: Palo Alto, CA
1st Symptoms: Sore throat, major fatigue
COVID-19 Test: Positive
Case: Moderate to severe
Treatment: Clinical Drug Trial (Remdesivir)
Status: Recovered, back to work (from home)
Coronavirus Stories: Tina Baker (Diagnosis & Treatment)

Tina Baker’s Story Pt. 1 (Diagnosis & Treatment)



Infection: Work trip to London
Home: Palo Alto, CA
1st Symptoms: Sore throat, major fatigue
COVID-19 Test: Positive
Case: Moderate to severe
Treatment: Clinical Drug Trial (Remdesivir)
Status: Recovered, back to work (from home)
Coronavirus: Justin Wilhite, Moderate, T1 Diabetic

Justin Wilhite



Infection: Community spread
Home: Sacramento Area
1st Symptoms: Persistent headache (resistent to Tylenol + OTC medications), chest pains
COVID-19 Test: Not taken
Case: Moderate
Treatment: Tamiflu, OTC medications
Status: Recovered
Non-Hodgkin’s Lymphoma Stories: Waldenstrom Macroglobulinemia (WM)| Cindy’s Story

Cindy S., Waldenstrom Macroglobulinemia



Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Hyperproteinemia
Treatment: Chemotherapy
Non-Hodgkin’s Lymphoma Stories: Chronic Lymphocytic Leukemia (CLL), Clinical Trial

Sean R., Chronic Lymphocytic Leukemia (CLL)



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax
Chronic Lymphocytic Leukemia (CLL) Stories | Lacey’s Story

Lacey B., Chronic Lymphocytic Leukemia (CLL)




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R
Chronic Lymphocytic Leukemia (CLL) Stories: Non-Hodgkin’s Lymphoma| Tony’s Patient Story

Tony D., Chronic Lymphocytic Leukemia (CLL)



Cancer details: ~25% of new cases of leukemia, also classified as non-Hodgkin lymphoma (slow-growing)
1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Chemo pill (Imbruvica), takes 3 pills a night
Non-Hodgkin’s Lymphoma Stories: Marginal Zone Lymphoma (MZL), Gastric MALT

Rachel P., Marginal Zone Lymphoma, Gastric MALT



1st Symptoms: Fatigue, bloating, stomach pain
Treatment:
Chemotherapy, targeted therapy, surgery
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell & Burkitt Lymphoma, High-Grade B-Cell Lymphoma, Stage 4

Erin R., DLBCL & Burkitt Lymphoma, Stage 4



Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
Non-Hodgkin’s Lymphoma Stories: Anaplastic Large Cell Lymphoma, T-Cell, ALK+, Stage 2

Brianna B., Anaplastic Large Cell Lymphoma (ALCL)



1st Symptoms: Infections, inflammation, high fever, swelling, abdominal pain
Treatment: Chemo, radiation
Non-Hodgkin’s Lymphoma Stories: PMBCL, Double Expressor | Stephanie Chuang

Stephanie C., Primary Mediastinal (PMBCL), Stage 3

1st Symptoms: Visible swelling around the jaw and neck area, major fatigue
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell (PMBCL), Stage 2

Crystal Z., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 2

Patrick M., Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Bump pushing up into sternum
Treatment: 6 cycles of DA-EPOCH-R (dose-adjusted) chemotherapy at 100+ hours each
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal (PMBCL), Stage 1 to 2

Donna S., Primary Mediastinal (PMBCL), Stage 1-2



1st Symptoms: Visible lump in center of throat, itchy legs, trouble swallowing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell (DLBCL), Stage 4

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



1st Symptoms: Pain in left knee
Treatment: R-CHOP chemo (6 cycles), high-dose methotrexate chemo (3 cycles)
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 1

Keyla S., Primary Mediastinal (PMBCL), Stage 1



1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal (PMBCL)

Arielle R., Primary Mediastinal (PMBCL)



1st Symptoms: Swollen neck lymph nodes, fever, appetite loss, weight loss, fatigue, night sweats, coughing, itchy skin, trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Warrriors’ Klay Thompson!
Warriors’ Klay Thompson gives a shoutout to cancer survivor and OneDavid founder Stephanie Chuang.
Fertility and Pregnancy After Cancer Treatment
Hear how cancer patients took steps to increase their chances of fertility and pregnancy after undergoing chemotherapy or other cancer treatments.
Clinical Trials in Cancer: A Guide to the FDA Approval Process
If you want to look into newer treatment options, it can be hard to know where to start. The FDA has several different approval processes. Here’s a guide for you to help you know what questions you can ask your doctor.
Multiple Myeloma & Treatment Options
Multiple myeloma is a rare form of cancer that occurs in the plasma cells. Read real experts talk about what myeloma is, its diagnosis and treatment options including new CAR-T cell therapy, proteasome inhibitors and more.
What is Chronic Lymphocytic Leukemia?
Chronic Lymphocytic Leukemia affects 15,000 new patients in the US alone each year. Hear from a leukemia expert about what CLL is, how its diagnosed, and the most important thing you can do during your treatment.
Newest CLL Treatments: Targeted Therapy Drugs
Treatment of Chronic Lymphocytic Leukemia is moving towards targeted agents. Chemo and transplants are becoming less common. Hear about the newest treatments from real experts.
Medicaid Updates and Cancer
Medicaid is a federal and state-run program that assists its patients with healthcare costs. Read how updates to the program in many states might make it easier to receive Medicaid coverage for your cancer.
Health Literacy Definition and Assessment
October is Health Literacy Awareness. Health literacy is when the information and health services you need align with your ability to process, understand, and use that information and those services. Why does it matter?
What is Leukemia? What is Lymphoma?
Leukemia is a cancer of the white blood cells. Lymphoma affects lymphocytes–a type of white blood cell. What are the similarities and differences of leukemia and lymphoma? How are they diagnosed? How are they treated?
Cancer Organizations and Nonprofit Services
Choose from over 40 cancer organizations and nonprofits for any cancer type and location Find where to get help for financial, housing, transportation and more.
Genetic Testing For Cancer
Read real genetic counselors and patients explain how genetic testing works, how it affects treatment and outcomes, and other important information to know.
Yoga and Cancer, Meditation for Cancer
Wondering how a yoga or meditation practice can help in cancer treatment? Read the benefits of starting a practice, both for your mental and physical health, and get tips on how to start.
CBD Oil for Cancer & Treatment Side Effects
Unlike THC, CBD does not make a person feel “high.” Read on to learn more about CBD, its potential uses for cancer patients, and tips on finding the right product.
Top Cancer Blogs | The Patient Story
Sometimes the content we need is to read journals from patients and caregivers, themselves. Here’s a list of wonderful blogs by cancer type curated by The Patient Story.
Chemo Diet: Eating Healthy During Cancer Treatment | The Patient Story
It can be hard to stay healthy and in balance when you're going through chemotherapy. Here are some ways you can optimize your eating habits to alleviate some common chemotherapy side effects.
Leaving the Hospital: Emotions and Support
Leaving the hospital after a surgery or course of treatment can evoke a variety of emotions. Hear from real cancer patients about how they were feeling when they went home and the support that’s available when you leave the hospital.
How to Tell Kids About Cancer | Parenting with Cancer
Hear how patients facing cancer navigated diagnosis and treatment while balancing their role as a parent. Hear their advice from how to talk to your kids about cancer to when to ask for help with childcare.
Working During Cancer Treatment
Whether you continue working or take time off during treatment, there are many questions new cancer patients face when it comes to their job. Here's what survivors had to say about dealing with work during chemo, radiation, and more.
Gifts for Cancer Patients | The Patient Story
Gifts can be a great way to show your support for a loved one with cancer, but it can be tough to know what to give. Here are gift ideas from real-life cancer survivors - from physical gifts to volunteering your time.
How Does Medicare Cover Cancer?
Cancer affects people of all ages. What can Medicare do for older cancer patients? How is Medicare changing in 2020? Guest writer Danielle K Roberts shares her expertise.
Hair Loss and Regrowth After Chemotherapy
Hear how cancer patients dealt with hair loss after chemotherapy and what some of them used to help growth after that loss.
Cancer Treatment Side Effects: Chemotherapy, Radiation, Surgery | The Patient Story
Cancer treatments save lives, but they also come with side effects. Hear straight from patients who’ve been treated for cancer - what they experienced and what helped them get through it.
Coping With Scanxiety: Advice From Cancer Patients
Scanxiety is the you have about any scans that will update you on your current status as a cancer patient or survivor. Most patients report feeling this particular kind of anxiety at least once. Find out how real cancer patients and survivors cope with scanxiety.
My Spouse Was Diagnosed With Cancer | The Patient Story
Marriage is wonderful, but a cancer diagnosis can create a disconnect for some couples. Here are three things to keep in mind in order to keep your relationship healthy after a diagnosis.
How To Tell Your Family and Friends You Have Cancer
If you’ve been diagnosed with cancer and are unsure how to go about telling your friends and family, read stories from real cancer survivors who share their experiences on how they broke the news.
What to Say to Someone With Cancer | The Patient Story
There’s no clear way to know what is best to say to someone with cancer, but there are some basic guidelines to help make your words and actions matter. Hear what helped and what didn’t from the patients themselves.
How To Be Your Own Advocate as a Cancer Patient | The Patient Story
Read advice from real cancer survivors about how to advocate for yourself during your cancer treatment.
What Does Cancer Feel Like?
Hear from cancer patients in their own words about what cancer felt like - from diagnosis to treatment to recovery.
Reacting to a Cancer Diagnosis: How Patients Feel in the Moment
It’s cancer. How should you be feeling? That’s a complex question without a single answer. Hear from real cancer survivors about how they reacted to their diagnoses.