Fabiola’s Stage 2BX Relapsed Hodgkin’s Lymphoma Story

Fabiola shares her Hodgkin’s lymphoma story, which includes getting staged at 2BX (bulky disease), undergoing 6 cycles of ABVD chemo, relapsing, going through more chemo (IGEV), a bone marrow transplant (BMT), BEAM chemo and then immunotherapy.

She also highlights the importance of getting good support, self-advocacy and survivorship.

---

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

---

Diagnosis

What were your first symptoms?

For several months, I had shortness of breath and a dry cough. I dismissed these signs because I believed it was a cold or a flu.

»MORE: Hodgkin’s lymphoma patients share common first symptoms

What led you to go to the doctor’s?

In the summer, I had a motorcycle accident. I decided to go to urgent care, where they did an ultrasound of my chest, neck and abdomen.

My healthcare provider decided to follow up with an MRI that showed extensive disease progress. At this time, I was unaware of what was going on. I thought it was routine work-ups.

List the tests and biopsies you had to undergo before diagnosis

In August, I had my first MRI. This was one of the worst tests I had to have done. I did not know how small an MRI machine was. I felt like I was suffocating and became very scared.

After a 45-minute exam, my eyes could not stop running, I kept crying and prayed I never had to have another MRI in my life.

Because the MRI showed a 16 cm by 18 cm mass in my chest and several smaller masses in my neck, my healthcare provider sent me in for a needle biopsy of my neck in October.

This was a simple outpatient procedure where they used lidocaine and inserted a needle with a guided ultrasound. This exam allowed them to take several samples of the lymph nodes that showed disease.

At this point, I was still unaware of what was occurring. On November 6, I was diagnosed with Hodgkin’s lymphoma, bulky disease.

Describe the moment you were diagnosed

In November, both of my grandparents passed away. I was in class doing a biology lab when I got an unknown phone call.

I decided to answer the call, believing it was my mom telling me she was going to fly out to Mexico for the funeral. This was not the case.

It was my healthcare provider calling me to tell me I had lymphoma, a cancer, and tried to explain to me how lucky I was. That this was the best cancer to have.

I remember not being able to breathe. I sat outside of my classroom, and my eyes just teared up. I was so heartbroken.

I was studying hard to be part of the medical profession, and now I had become a patient.

I remember being so afraid to sleep, so I stayed in school until 2 a.m. in the library working on my senior thesis. The moment of my diagnosis felt like I was in a complete standstill. I continued to work on homework, but I have never been the same since my diagnosis.

»MORE: Patients share how they processed a cancer diagnosis

How did you break the news to your loved ones?

After the call, a professor of mine saw me and asked what was wrong. I told her, and she quickly offered to take me home, but I decided I couldn’t break my parents’ heart anymore. They had suffered enough pain from losing their parents.

I decided to call my sister, who has always been my best friend. Within minutes of talking to her, my entire family called me asking me if it was true. I was a marathoner; I ate the healthiest. This was the worst news anyone could have received.

»MORE: Breaking the news of a diagnosis to loved ones

Describe that first meeting with the oncologist

My first meeting with my oncologist was difficult. It occurred a few days before Thanksgiving. He quickly ordered a PET scan and ordered a port placement.

The visit made my diagnosis real.

He explained to me that without treatment I would only live 2 months and would pass in my sleep because the tumors were engulfing my my trachea and lungs. It was hard hearing this. I decided that I couldn’t be with a doctor who was so cold and had a poor prognosis.

Getting a second opinion

I decided to get a second opinion from Dr. Stewart at City of Hope. On December 26, I met with her, and she changed my whole perspective about my disease.

She reassured me. She gave me so much hope and allowed me to believe that I would be okay.

What did you like about being at a smaller or bigger place for treatment?

With my initial treatment, which consisted of 6 months of ABVD chemo treatment, the facility was small. It was 4 floors, and the infusion room had about 18 chemo chairs.

I loved being here. It felt like family. I went in for chemo every other week for 8 hours, and the nurses always provided me with comfort.

When I relapsed, I was inpatient at a large facility. With my first admission, I was overwhelmed, nervous and scared. I had never been hospitalized.

1st-Line Treatment & Side Effects

1st ABVD chemo cycle

With my initial treatment, I underwent 6 months of ABVD chemotherapy, which was done biweekly and took about 6 to 8 hours.

»MORE: Read our comprehensive ABVD chemotherapy info page

ABVD chemo side effects

The side effects of ABVD were tolerable. Reglan and Zofran (anti-nausea medication) allowed me to eat. Reglan was my best friend. Zofran helped, but it gave me headaches. However, the steroids made me gain about 20 pounds.

Recovering from ABVD chemo

After chemo was over, I was overwhelmed with emotions. I was so happy but also so nervous that the cancer would come back. I struggled emotionally to return to a “normal state.”

»VIDEO: The Patient Story Video: How to Cope with Hair Loss

Describe the first follow-up scan

I had several follow-up scans during my chemotherapies, which all showed stable disease or slight reduction. In July 2014, I was told I was in complete remission.

Temporary remission

This remission lasted 6 months. I went in for a follow-up scan and blood work 2 days after my graduation that showed new tumors in my body.

This follow-up was hard. I could not believe it. I continued working until we had more answers about my scan.

How did you approach the issue of fertility preservation?

Before starting high-dose chemo, my oncologist scheduled several biopsies and lung function tests. She also sent me to a fertility clinic because I would (likely) become infertile with these lines of treatments.

She called her friend who was a fertility specialist, and within a few weeks we began the egg retrieval process. I could not have survived all of this without the support of my doctor.

»MORE: Fertility preservation and cancer treatment

What helped prevent the side effects?

I ate small meals and always made sure I was not in crowded places when my blood counts were low.

Recovering from IGEV chemo

During this chemo, I knew I still had a long process to go. I just wanted to rest before the “real fight” began.

Bone Marrow Transplant

When did your oncologist talk about the bone marrow transplant (BMT)?

My oncologist knew right away after I relapsed that I would need to do a bone marrow transplant. She told me that without a transplant, I had a 95% chance of relapsing. With a bone marrow transplant, my chances of a relapse decreased to 50%.

A bone marrow transplant was my real chance at a cure.

I had to have Mozobil, which is an injection to stimulate your bone marrow to produce stem cells, every night before I went in for collections. These injections cause severe bone pain.

After collecting enough stem cells, I had to receive the okay from the cardiology, respiratory, nephrology team to ensure my vital organs were healthy enough for the transplant.

»MORE: Hear from a Bone Marrow Transplant specialist

What additional chemo did you have to undergo?

I was admitted on November 22, two days before Thanksgiving, where I began BEAM chemotherapy.

Describe the high-dose BEAM chemotherapy

BEAM chemotherapy was done for 7 days. Sometimes I received chemotherapy 3 times a day. This was emotionally and physically hard.

I remember telling my nurse, “You are hanging another bag of chemo? Why?” When my nurse left, I could not stop crying.

The chemo made me feel so sick. I had never experienced such high levels of pain when I swallowed, when I moved, and the exhaustion is indescribable.

I remember I had to shower every day, and it felt like I had run a marathon. My muscles were sore, my legs felt weak, and oftentimes I had to sit on the restroom floor to change because standing up was too difficult.

After the Transplant

When did you learn you were in complete remission?

I was told I was in complete remission on October 15th. I was so happy and overwhelmed with emotions. I returned to work and continued school; I graduated May 2nd the next year!

How often do you have follow-up appointments and scans?

After finishing my treatments, I now see my oncologist every 3 months, where she does blood work. Every 6 months, we do a PET scan to ensure the cancer is still in remission.

Advice on “scanxiety”

Scanxiety is the worst experience anyone can have. I have been in remission for 2 years, and the weeks leading up to a scan paralyze me.

I become so scared because I do not want to fight this disease a third time. I fear losing my job, my hair, my school. I fear losing the sense of control. Scanxiety has become better over the years, but after relapsing they are hard.

I now run. I remind myself that I have enough strength to keep going even if the results are not what we hope. That has empowered me to face scans head-on.

»MORE: Dealing with scanxiety and waiting for results

Finances & Support

Financial toxicity: paying for cancer treatment

The financial aspect was difficult. I had to stop working, and school was expensive. I was fortunate to have some support from my sister.

I was very fortunate to be covered under my dad’s health plan, which covered every treatment, biopsy, surgery and scan.

Could you study or work through treatment?

I was able to study, although my doctor was reluctant to the idea until I told her I couldn’t lose another thing. She agreed and realized how strong school kept me.

Did you have help in preparing for issues outside of treatment?

My family took care of me. My sisters brought groceries over. My dad made sure I had the best health insurance through his employer. Eating was difficult, so my mom made simple soups or salads (if I was not neutropenic).

What type of support was most helpful?

The best support I had was friends just listening to me — not saying anything, just listening. I had so many friends who left my side because it became overwhelming.

I had friends tell me I was not the picture of cancer. I have to say I just needed someone by my side not saying anything, just being fully present.

»MORE:  What kind of support cancer patients say helped the most

How important is it to have caregivers?

Caregivers get the cancer, too. They suffer so much because they want to take away the pain, and they want to do everything to ensure we are okay.

Caregivers are the heart. They keep us going, they fight for us when we are too weak to fight, they advocate for us, and they mend our brokenness.

Reflections

What surprised you most about the experience?

What surprised me the most was the inner strength that I discovered in myself. Cancer is such a scary and lonesome disease, but through social media, I was able to find a support system of survivors that empowered me to move forward every day.

When I thought I would be unable to move forward, I kept going. When my cancer came back, I felt robbed and couldn’t breathe.

But when I got into my car after being told it had returned, I drove to the mountains and did a 10-mile hike to remind myself that there was more life to me, that I was more than just cancer.

Did you use alternative or holistic medicine?

Yes, we tried alkaline water, expensive juices. The cancer never improved, so I stopped spending the money. I put all my trust in my chemo and my doctors.

I do believe cancer survivors suffer from PTSD. To this day, my heart races when I drive past my hospital. So many things trigger such vivid memories.

How do you handle the anxiety around follow-up scans and your health?

Running is my escape. It allows me to believe that I can overcome the fear because I know that I will continue to place one foot in front of the other.

I also try to schedule next-day appointments so that I am not waiting to see if I get calls from my oncologist.

---

---

Hodgkin’s Lymphoma Stories