Hodgkin Lymphoma Stories
Stage 2B, Relapse
“The time will pass, you will get through treatments, you will ring the bell at the end of your chemo or radiation. The most important thing is to heal. You need to heal emotionally, spiritually, mentally, and physically. We are often so concerned about the physical aspect of the disease that we forget how important our mental health is.
I suppressed my emotions and at the end I was very depressed. I have healed but it was not an easy road. Take care of yourself, every aspect. Be kind to your body and nurture your mind.”
Name: Fabiola Lopez
B = Bulky disease (site of disease >10 cm)
Relapsed after first chemo
Complete response after bone marrow transplant
Shortness of breath
ABVD chemotherapy (1st Line)
Bi-weekly for 6 months
Tota: 12 infusions
IGEV high-dose chemotherapy (2nd Line)
Each cycle = 4 days in hospital
Duration: 3 months
Bone marrow transplant (BMT)
Cyclophosphamide chemo before stem cell collection
Slow collection: 2.7 million stem cells over a week
Up to 3x/day
1x every 3 weeks
Table of Contents
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What were your first symptoms and what led you to go to the doctor’s?
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.
In the summer of 2013, 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
On August 2013, 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 16cm x 18cm mass in my chest and several smaller masses in my neck, my health care provider sent me in for a needle biopsy of my neck (on October 21, 2013).
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 sample of the lymph nodes that showed disease. At this point, I was still unaware of what was occurring. On November 6, 2013, I was diagnosed with Hodgkin’s Lymphoma Bulky Disease.
Describe the moment you were diagnosed
On November 6, 2013, 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.
I remember being so afraid to sleep so I stayed in school until 2 AM 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.
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.
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 two months and would pass in my sleep because the tumors were engulfing my my trachea/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.
Did you get a second opinion?
I decided to get a second opinion from Dr. Stewart at City of Hope. On December 26, 2013, 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 treatment, the facility was small. It was four 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 frist admission I was overwhelmed, nervous, and scared. I had never been hospitalized.
How was your medical team?
My entire healthcare team was extraordinary!
The volunteers guided me through the facility, my doctor was my greatest cheerleader. She kept pushing me, believing in me, and always encouraged me when I was down.
She wanted me to stop going to school but when I refused she always kept pushing me to do better and feel better.
II. 1st Treatment & Side Effects
Please describe the first chemo cycle
With my initial treatment I underwent 6 months of ABVD chemotherapy, which was done bi-weekly and took about 6 to 8 hours.
What were the side effects
The side effects of ABVD were tolerable. Reglan and zofran (anti-nausea medication) allowed me to eat. However the steroids made me gain about 20 pounds.
What helped you recover or prevent them?
Reglan was my best friend. Zofran helped but it gave me headaches.
How did you do after 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.”
Your hair loss
Were you surprised by your reaction to losing hair?
I was at a restaurant where I felt my hair just fall. When I removed my hair tie, about 90% of my hair fell off. It was painful and hard. There are no words to describe the way I felt about this.
What helped with the hair loss?
I only wore cotton beanies. It kept my head warm, protected me from the sun and made me feel better. I hated wigs!
When was your first follow-up scan and what happened?
I had several follow-up scans during my chemotherapies which all showed stable disease or slight reduction. On July 2014, I was told I was in complete remission.
This remission lasted 6 months. I went in for a follow-up scan and blood work two 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.
What did your oncologist tell you about the plans moving forward?
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 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.
III. Post-Relapse Treatment
Describe the second chemo regimen
When I relapsed I received high-dose chemotherapy that was done inpatient. This treatment was called IGEV and was done four times over the course of three months. I received this from July 2015 to September 2015. Each hospitalization was four days and each day included a mixture of the chemotherapies. IGEV chemotherapy was hard my hemoglobin fell to 5.0 (normal is 12 to 14) so I was fatigued, had weakness, and was unable to eat at times.
What were the side effects
Loss of appetite
Low blood counts. I had to inject myself everyday for a week with Neupogen to make sure my white blood cell counts (WBC) were high and I was not at risk for infections.
What helped you recover or prevent them?
I ate small meals and always made sure I was not in crowded places when my blood counts were low.
How did you do after chemo?
During this chemo I knew I still had a long process to go. I just wanted to rest before the “real fight” began.
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 but with a BMT my chances of a relapse decreased to 50%. A BMT was my real chance at a cure.
Describe the preparation process before the bone marrow transplant (BMT)
After completing IGEV, I was sent to the bone marrow transplant team where I received Cyclophosphamide chemotherapy prior to stem cell collection. Because I had received so much chemotherapy, stem cell collection took very long. I was only able to collect 2.7 million over a week. Typically people take two days to collect that amount.
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.
What additional chemo did you have to undergo?
I was admitted on November 22, 2015, two days before Thanksgiving, where I began BEAM chemotherapy.
Describe the high-dose BEAM chemotherapy
BEAM chemotherapy was done for seven days. Sometimes I received chemotherapy three 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 everyday and it felt like I had run a marathon. My muscles were sore, my legs felt weak, and often times I had to sit on the restroom floor to change because standing up was too difficult.
How was the brentuximab infusion?
Brentuximab was the “easiest” treatment. It was done within hour - 30-minute infusion and 30 minutes of premedications. I received this treatment every three weeks for a year for a total of 18 rounds.
What were the side effects?
There was no hair loss. My hair actually grew. Slowly, but it grew. I had severe muscle pains and a year later I still have peripheral neuropathy that the treatment caused. My walking is a lot better but for over a year I walked with a limp.
What helped you recover or prevent the side effects?
I was on Reglan for nausea and took Gabapentin everyday for almost two years to improve my nerve damage that the drug caused.
How many scans did you have to undergo?
I had a PET scan every two to six months for the last five years.
Any advice on “scanxiety”?
Scanxiety is the worst experience anyone can have. I have been in remission for two 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.”
When did you learn you were in complete remission?
I was told I was in complete remission on October 15, 2014. I was so happy and overwhelmed with emotions. I returned to work and continued school, I graduated May 2, 2015.
How often do you have follow-up appointments and scans?
After finishing my treatments, I now see my oncologist every three months where she does blood work. Every six months we do a PET scan to ensure the cancer is still in remission.
IV. Finances & Support
How was the financial aspect of dealing with 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.
What do you wish you had known to help with the financial process
I was able to get unemployment. When I relapsed and required a bone marrow transplant, my doctor suggested disability for me. I had no idea I was eligible for disability until I was undergoing the bone marrow transplant process. My boss never explained to me what I was eligible for, she just signed the paperwork stating my leave of absence had been approved.
Did you have help in preparing for all 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?
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, they mend our brokenness.
V. Quality of Life
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.
What helped you manage your emotions and thoughts?
Running helped. Being busy with schoolwork. Going to Disneyland every Friday with my little sister, running half-marathons, and listening to music that inspired me.
What got you through the toughest times?
My sister decided to sign me up for a marathon that I did two months after my transplant. The transplant was the hard. I would pray because I wanted to die, the pain was unbearable, the nausea was draining and the constant throwing up brought me to my knees.
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.
Self-advocate: Were there moments you had to advocate for yourself in & out of treatment?
My doctors did not want me to go to school. I advocated for myself. I told them that school was all I had and I couldn’t lose something else because of cancer. I asked them to let me walk around the units because I felt isolated and depressed when I did my transplant.
Survivorship: how has it been?
It has been 1.5 years since my last treatment and there are certain days when things are just hard. I just want to breakdown and cry, some days I just want to lie down.
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.
What’s your advice to others who are just now getting diagnosed with the same cancer and will have to undergo the same or similar treatment?