Moe’s Hodgkin’s Lymphoma Story: Stage 2B, Relapse, Transplant
Moe was diagnosed with classical Hodgkin’s lymphoma at just 19, as a medical school student. He went through 12 cycles of ABVD chemotherapy before he unfortunately, the cancer was refractory, meaning it did not respond to first line treatment.
He then underwent four cycles of DHAP chemotherapy, a splenectomy, MINE-R chemotherapy, and autologous bone marrow transplant before reaching remission. Thank you for sharing your story, Moe!
- First Symptoms and Scans
- When did you realize something was wrong
- What happened at the first doctor visit
- Your family kept you in the dark about the possibility of cancer
- Describe the CT scan
- Describe the bone marrow biopsy
- That’s when you first heard “cancer”
- Describe the excisional biopsies (two)
- Describe the tuberculin skin test
- When did you get the biopsy and scan results back
- Hodgkin’s Lymphoma Diagnosis
- How did you learn the diagnosis
- How did you process news of the cancer diagnosis
- How did you break the news to loved ones
- Treatment Decisions
- How did you decide where to get treatment
- The issue of fertility preservation came up
- Did you get a second opinion
- How was your medical team
- First Line Chemotherapy and Side Effects
- Did you get a port or a PICC line
- Describe the ABVD chemotherapy cycle
- Describe the ABVD chemo side effects
- Did you lose your hair
- How was the post-ABVD PET scan
- Second Line Treatment: DHAP Chemotherapy
- Describe your experience with DHAP salvage chemotherapy
- What did you do after losing hair
- How did you start the process for the bone marrow transplant
- Describe the stem cell collection procedure
- After DHAP and stem cell collection, you were found to be in remission
- Relapse & Bone Marrow Transplant
- When did you learn you had relapsed
- Describe the MINE-R chemo before the bone marrow transplantation
- Describe the bone marrow transplant preparation
- How was the bone marrow transplant recovery
- What’s been your follow-up protocol since the BMT
You will have bad days but please make sure that you are not alone. A family member, a friend, a spouse, a son, or even a neighbor can provide you with help and support when needed.
You do not have to fight this battle alone. So stay strong, keep your head up high and I will be one of the many survivors waiting for you at the end of the tunnel.Dr. Moe C., Hodgkin’s Lymphoma
First Symptoms and Scans
When did you realize something was wrong
My story begins in October 2007. I was a second-year medical student when I started to have a loss of appetite. One of my favorite foods at that time was a double cheeseburger from McDonald’s and I was not able to bear the smell of it at that time.
I did not pay attention to what was going on, especially that some exams were approaching. I was living alone at that time and my family was away.
Things started to get worse with fatigue and night sweats. I remember waking up at night with my sheets drenched in sweat.
I went to my family for a visit, that’s when I noticed that I had an almost six kilograms (13 pounds) weight loss in a month’s period.
What happened at the first doctor visit
We went to a family doctor who recommended a CT scan after he found some enlarged lymph nodes in my armpit and neck.
Your family kept you in the dark about the possibility of cancer
Since I’m of Middle-Eastern descent, it is unfortunately common for family members to hide bad news from the one affected. So I had no idea what was going behind the scenes, especially since I was 19 years old and had zero experience with cancer.
Describe the CT scan
The first thing that I had was a whole body CT scan and I can still remember the heat you feel inside when they inject the contrast material. This was followed by a brain MRI and the annoying sounds it makes.
Describe the bone marrow biopsy
One of the most horrible experiences in my life was the bone marrow biopsy. It was performed in a clinic with local anesthesia and I had no clue what was going on.
It was November 2007. I was taken to another doctor. I later found out he was a hematologist, who told me that he wanted to give me an injection in my buttocks area and I must not move while he was doing that.
It turned out that he was going to perform a bone marrow biopsy. He only administrated local anesthesia and then he advanced the thick needle of the biopsy.
It was one of the most severe pains I had in my entire life. I started to scream and shout simultaneously while my dad and uncle held me in position.
At that time I didn’t even know I had lymphoma. I was instructed to face a wall, laying down on a cold clinic bed and to bend my knees. I screamed a lot that day and I cried a lot, and I still remember the doctor telling me not to move and to “man up.”
That’s when you first heard “cancer”
When I came back home, I demanded to know what was going on and why am I undergoing all of these extensive tests. That is when my family told me that they suspected cancer.
I started my search online about lymphoma since it was at the top of differential diagnosis.
Describe the excisional biopsies (two)
I had a mediastinal biopsy (the area between the two lungs) and due to bad processing, this biopsy was insignificant. The procedure was done under general anesthesia.
When I woke up, I found all of my family members there. It is such a blessing to have an amazing family by your side.
The second biopsy was taken from my neck, and it was done under local anesthesia. It was quite uncomfortable to be awake while someone was poking in my neck, but it was painless and the result came back with a diagnosis.
Describe the tuberculin skin test
After this biopsy, I had a tuberculin test, the skin test that they do in order to know if you had tuberculosis or not, which is not accurate. My result was borderline and a family physician decided to start me on anti-TB medications.
When I started to have red urine, I got very scared, but then I was told it was just a side effect from the medication. At that time, I was back in medical school in Jordan away from my family, so it was a weird experience.
When did you get the biopsy and scan results back
The biopsy and the scan results came back very fast before diagnosis, around the day after. Since I had no idea I had cancer at that time and I was 19, I did not have any anxiety or fear. I believe the scanxiety kicked in after starting treatments.
Hodgkin’s Lymphoma Diagnosis
How did you learn the diagnosis
After the bone marrow biopsy, I asked my mother what was going on and what they know. She sat down with me, tearful, and told me about the diagnosis.
Being a second year medical student, I searched for the disease and I educated myself enough but nothing can prepare you for what’s to come.
How did you process news of the cancer diagnosis
I was pretty calm. No crying. I sat down and googled what Hodgkin’s lymphoma was. It was a self-defense mechanism I believe is called “intellectualization.”
How did you break the news to loved ones
They were the one who broke the news to me. Then I told my close friends. Again, I was young with zero life experience at that time, so it was not as traumatic as it was expected.
How did you decide where to get treatment
After the biopsy was definitive, an immediate decision was made to start the treatment in the same dreadful clinic that I had the bone marrow biopsy at.
The issue of fertility preservation came up
They were preparing the first dose when my dad asked about infertility and if they could offer sperm banking.
At that moment, the doctor said that it was unethical since I was not married and he did not approve.
Later we found out that he was making those decisions based on some personal religious point of views. My dad told him to stop the process and we left the clinic.s
Did you get a second opinion
We sought out a second opinion after the sperm banking issue and we went to Lebanon. They re-examined the pathology slides and I had my first PET-CT scan.
I was also introduced to “The Red Room,” which is utilized to give a semen sample in order to complete the sperm banking process.
How was your medical team
It was the best team I could ever pray for, including my oncologist and his colleague, his assistant, and the nursing staff. I am still friends with all of them. They are the reason I am still here talking and breathing.
They are the real heroes in my story.
First Line Chemotherapy and Side Effects
Did you get a port or a PICC line
I had a port inserted. Over the span of all my treatments, I had three ports inserted and removed. I insisted on removing it every time a treatment was done and then they inserted a new one when I had a relapse and so on. I was young and foolish.
Describe the ABVD chemotherapy cycle
ABVD was a breeze, compared to what came after. One of the things that I was mostly worried about was my family, especially my mother.
I pushed myself to the limit in order to stay strong and maybe that is what made the first line of treatment less hard on me.
Describe the ABVD chemo side effects
The only side effect that I had from ABVD was the nausea which was controlled by Ondansetron.
Did you lose your hair
I did not lose my hair and surprisingly, my hair’s texture changed from frizzy and coarse to smooth and silky, which was so weird.
How was the post-ABVD PET scan
I remember that time that my sister was undergoing scans suspecting she had cancer, as well. Thankfully, all her tests came back negative.
After getting the news, we were in the car together and I remember hugging her and saying, “Thank God it wasn’t you,” while crying.
After the ABVD, I had a feeling that my cancer story wasn’t over. I had a feeling that there would be a second battle. When we got the news my cancer was still there, I was with my mother and sister.
Second Line Treatment: DHAP Chemotherapy
Describe your experience with DHAP salvage chemotherapy
Everything went downhill when I started DHAP.
The nausea was very poorly controlled with all medications available and my hair started to fall in chunks on the second cycle.
We were in France at that time and I couldn’t believe how fast things were deteriorating. I was medically doing okay, but it was too much to process I believe.
They prescribed DHAP chemotherapy and to start the process of preparation for a bone marrow transplant, including stem cell collection.
What did you do after losing hair
My mother helped me shave my hair at that time and I had the idea to start my own YouTube channel to document what was going on. The idea that saw the light when I started the actual bone marrow transplant procedure.
How did you start the process for the bone marrow transplant
The only problem with being in France was the fact that I didn’t speak the language at that time, so it was very difficult to communicate. The stem cell collection happened during my hospital stays in France while taking a cycle of DHAP.
Describe the stem cell collection procedure
I was taken by an ambulance with my mother to another facility for collection. I was asked to spread my arms while laying on a bed and they inserted two large needles in my veins which were hooked to a processing machine.
It was the longest six to eight hours of my life. I was not able to bend my arms at all, and my mother provided help when my nose itched or I was in need of water or something else.
After stem cell collection was completed, I was taken back to the hospital and soon after, we went to Paris in order to have a change of scenery before heading back home.
After DHAP and stem cell collection, you were found to be in remission
I was declared in remission after four cycles of DHAP and it was decided to keep me under close observation. The second round of DHAP happened a couple months after in November that year.
Relapse & Bone Marrow Transplant
When did you learn you had relapsed
In February 2010, problem areas in the spleen got larger in size and I was considered to be having a relapse. I underwent splenectomy which confirmed the diagnosis of a relapse.
I was started on a second line salvage-chemotherapy of MINE-R in preparation for an autologous bone marrow transplantation.
Describe the MINE-R chemo before the bone marrow transplantation
The MINE-R was really difficult. I never had vomiting during my previous two regimens but this time, I started to have a yellow vomit coming out every now and then. It was never controlled by any medication.
The hair did not return by the time we started MINE-R so I have no clue how fast would it have fallen.
Describe the bone marrow transplant preparation
I was first admitted in the hospital and started on the highest dose of MINE-R. Then the bone marrow transplant began. I had facial swelling that was expected to be an abscess but it wasn’t. I was informed that at any moment, I might be transferred to the ICU in case I deteriorated, which did not happen.
Some of the most horrible side effects were the oral thrushes and ulcers. They started to appear during the first week and I was unable to swallow. I was instructed to use carbonated drinks as a mouthwash which was helpful, in addition to other medications.
Throughout the BMT, I had a continuous feeding machine hooked to my port in order to provide me with the needed nutrients.
How was the bone marrow transplant recovery
My mother, and father were with me on a daily basis. They were not allowed to sleep over so it was worse at nights, being alone. I had my friends on Facebook at that time. My sisters and brother were sending emails.
When we got close to the end (Day 35), a nurse rapidly lowered the morphine dose that I was on. That resulted in withdrawal symptoms. I started to twitch all over and I was not able to sleep at all. A
At that time, we asked for my mother to stay with me during the nights because I needed someone to be by my side. Then I started to have diarrhea which was super annoying and they refused to discharge me until it was resolved.
What’s been your follow-up protocol since the BMT
Follow-ups started with PET-CTs every year. The last one happened in about eight years after diagnosis.
What helped you get through the hardest times
During and after my treatments, I was started on low-dose Xanax based on my oncologist’s recommendation. But I believe my family, nurses, and my friends were the true supporters during my darkest times.
The first few years after the BMT were hard on me and I had to go to a psychiatrist in order to just have someone to talk to about my fears and concerns. I wanted to give my family a break from the cancer horrors. Besides, they suffered enough.
How important is it to have caregivers
I wouldn’t be here if it wasn’t for them. It is one of the most crucial elements during a treatment process.
Were you able to ask people for support
I was lucky enough to find people around me all the time. During my hospital stays in Lebanon, when I was in good shape, nurses used to take me for a walk and pretend we were going for a trip or something which made me crack up in laughter.
I believe that God knows that we, cancer patients, are in need of support during our treatments and he blesses us with kind people.
How has cancer impacted your life
Cancer helped me to become a new person. It changed my whole life perspective. I became more compassionate as a person and I valued life more than ever.
One of the things that people do not talk about is the “chemo brain” after effect, which I personally suffer from. I believe a lot of people suffer from that and it is not addressed properly.
This is why we are starting a new program in our region to spread awareness about this side effect.
How has your experience as a patient helped you now as a doctor
Working in a cancer center after my own experience was a challenge for me. I applied for the position in order to help other patients and ease their pain, but I was afraid that I would crumble with all the flashbacks that I would have.
Thankfully, I was able to support my patients and to establish strong bonds with each and every single one of my fellow cancer patients, trying my best to be there for them and their families.
Whenever I see a patient who gave up on life and is ready to raise his or her white flag, I share some of my story which provides them with that extra dose of hope knowing that people do survive from that vicious disease.
Last message to other patients
The word cancer is scary and you have every right to be frightened, but do not let that fear take over you. Use this fear to harness the needed power to overcome this illness and rise stronger and tougher than ever before.
You will have bad days but please make sure that you are not alone. A family member, a friend, a spouse, a son, or even a neighbor can provide you with help and support when needed.
You are strong and you will make it out of this nightmare but do not be afraid to ask for help and support from those who you love. They will provide you with hope and strength and they will ease your pains. You do not have to fight this battle alone.
So stay strong, keep your head up high and I will be one of the many survivors waiting for you at the end of the tunnel.
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Hodgkin’s Lymphoma Stories
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)
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
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)
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
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
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)
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
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)
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)