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Mike’s Stage 4 Diffuse Large B-cell Lymphoma (DLBCL) Story

Mike’s Stage 4 Diffuse Large B-cell Lymphoma (DLBCL) Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Mike got through stage 4 non-Hodgkin diffuse large B-cell lymphoma (DLBCL). He has been in remission for 3 years now.

Mike did not experience any initial symptoms at all. His cancer was uncovered quite by accident. In the process of setting up his new house, Mike supposedly hurt his back and began to experience profound, persistent pain. His back pain got so bad that at one point he thought he was experiencing a heart attack. A visit to a chiropractor worsened the situation; a chest adjustment led to Mike experiencing a shock throughout his entire body, and a few hours later, he could barely walk.

An MRI revealed the cause of Mike’s pain: a spinal tumor. His surgeon removed the tumor, and it was found to be cancerous. Mike’s oncologist also put him on chemotherapy; he was treated with R-CHOP (cylophosphamide, doxorubicin, vincristine, rituximab, and prednisone).

Mike responded well to his treatments, despite struggling with side effects like intense leg pain, hair loss and, strangely, weight gain; he was still able to work while undergoing chemo.

Aside from his treatments, Mike also credits the steadfast care and constant attention provided by his wife, a nurse, and his family, as well as the comfort and stability provided by his faith and his friends, for his recovery. His story underscores the importance of finding care–not only medical care, but also emotional support, given the toll cancer can take on one’s emotions–as well as how crucial faith can be during treatment and afterwards as well.


  • Name: Mike E.
  • Diagnosis:
    • Diffuse Large B-cell Lymphoma (DLBCL) (Non-Hodgkin Lymphoma)
  • Staging:
    • Stage 4
  • Symptoms:
    • No noticeable initial symptoms
    • Persistent, significant back pain which led him to have the MRI that exposed his spinal tumor
  • Treatments:
    • Surgery: removal of spinal tumor
    • Chemotherapy: R-CHOP (cylophosphamide, doxorubicin, vincristine, rituximab, prednisone)

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



Everybody has a different journey.

It is your game… play it the way that you need to. You will know when to do it.

You know it is your game to play.

Introduction

My name is Mike.

I live in Rincon, GA, which is about 20 minutes outside of Savannah, GA. I’m originally from Savannah.

I had non-Hodgkin diffuse large B-cell lymphoma. I have been in remission now for 3 years.

Pre-diagnosis

My symptoms, well, I did not have any symptoms. I guess I may have, but I didn’t notice, and it was all found by chance.

We moved into a new house. I bought some big pots to put out in front, and you must bear hug them to get them off the truck, and that is what I did. I thought that I had pulled a muscle in my back.

So, for about two weeks, I dealt with the pain of it, and it just kept getting worse and worse. The week that I was diagnosed, the pain got so intense that I had thought I was having a heart attack.

We called the ambulance and took a little ride to the hospital. It turned out that my heart was fine, but I still had pain, so a couple of days later, on a Thursday, I went to a chiropractor.

When he adjusted me in the chest area, I had a shock go from the tip of my head to the bottom of my feet. By the time I had left his office, drove a mile down the road to Walmart, and got out to walk in, I could barely walk. I went back to him that afternoon, and he just did not know what was going on. That evening, when I got home, I had to use a walker.

On Friday, the day afterwards, we set up an MRI with the neurosurgeon that I had used before. But I could not do it, because I could not lie down.

Saturday rolled around, and my wife, who is a cardiac nurse, set up for me to go to the local hospital here in Effingham County, where I successfully got an MRI.

Discovery, Diagnosis and Treatment

Surgery

Well, in the MRI, I did not know it then and there because no one told me, but they saw a tumor on my spinal cord.

On Monday, December 21, 2020, I checked into the hospital. On Tuesday, I had surgery, and stayed in the hospital overnight.

Then we went down to Tybee because we had rented a house down there for Christmas.

When we were down there, the tumor was sent off so they could check it to see if it was cancerous. However, the surgeon had already known that it was; I guess he had done so many surgeries like that, that he could already tell if it was cancerous or not.

A couple of days later, we had a meeting with an oncologist to discuss my treatment. The combination of drugs I would be taking is known as R-CHOP.

It turned out to be a pretty rough treatment.

Chemotherapy

The first treatment was on that infamous day of January 6, 2021, and everything was going on in Washington, D.C.

Not only that, but Covid was going strong, so no one could go with me to have chemo, and so I was kind of on an island by yourself. I got used to it–and as you’ll see, I wasn’t actually left alone.

The people in the hospital who administer the drugs are wonderful. They have a big heart for people like us and they made it easy. Of course, wearing a mask the whole time you are there is no fun, but they did make it very easy.

I had 6 rounds of R-CHOP every 3 weeks.

Effects of the treatment regimen

During the first round of chemo of R-CHOP, I was told that it was so important to stay hydrated. So when I would get home after treatment, I felt like I would almost drown myself because I had drunk so much.

I had been told that one of the side effects of my treatment regimen would be nausea, but it was a pleasant surprise that that was not the case for me. I think I had needed to take only 2 nausea pills the entire time, which was awesome.

Another thing too that was a bit unusual was that I actually gained weight during my treatment. People normally lose a lot of weight, but I actually gained 30 pounds.

I also lost all my hair after the first rounds of chemo. That was a big thing for me.

Additionally, I had intense leg pain after my infusions. They gave me Neulasta for that, and that is something that I still struggle with today because of the neurological damage done to my system.

I was also informed that I needed to watch out for the third round of chemo. I go to church with a guy who said to me, “Wait until your third round.” But it was not the third round that kicked me in the behind; it was the fourth round. It just wiped me out.

I would have a treatment on a Friday afternoon, and it lasted about six hours. I would get home, and I would be wired that whole afternoon and all night. Then I would not go to sleep until about noon on Saturday. I would just be wired, not hungry but we did have somebody at the church that would make me some vegetable soup and banana bread, and that helped me out tremendously for a bunch of days after I had my treatment. The part of being wired, that was always the worst part of it. Then, by Tuesday, I would be able to go back to work. 

I am in sales, and I do not see how anybody in a factory job or anything like that could go through it and keep a job. That being said, I was still able to function for the most part while I was on chemo.

As a matter of fact, I continued to work the whole time I was being administered R-CHOP. On days that I did work, sometimes it was a pain, and on the whole I felt like I was in a cloud. I was still able to work, though, which is great.

I complained one day to the neurosurgeon about why I was not walking better, and he commented that I should feel blessed that I was even walking.

Remission

After I had finished my treatments, I went for a PET scan.

It showed 2 lumps in my stomach that were lit up. My oncologist said, feel free to search for a second opinion. So we did that.

My wife, the nurse that she is, spoke with my sister and a good friend of hers whose brother is an oncologist in Atlanta, and he suggested going to Moffit Cancer Center down in Tampa.

We went down there, and he did some tests that my oncologist here did not do.

All the tests determined that the lumps were not growing at all.

So this means that the treatments were successful and my cancer was in remission.

I have been in remission now for 3 years. I go every 6 months to have a check-up.

PTSD

I may be cancer-free now, but there are moments that I have PTSD. I experience some triggers that remind me of things that were not so pleasant during my treatment time.

Just as an example, I have some photos of the Red Devils, part of the chemo that they call the Red Devils. Those are potent. Anytime I look back and see the pictures of those, I can almost taste them. They were that bad.

That being said, though, I can say that I’ve come away stronger.

Before all this happened, I could not take an MRI, PET scan or CT scan or anything like that without being sedated. Now I have learned how to deal with everything like that. 

I think the last MRI I had lasted about an hour and 30 minutes, and it was not bad at all. Getting my port taken out was easy. I am not afraid of needles. I am not afraid of MRI machines, PET scans, or CT scans, either. Not any more.

Looking forward after remission

My experience has changed my life.

You start to think more about your family than about material things that do not really mean a whole lot. The shoes, the watches, the shirts, you know—they do not mean that much.

I am semi-retired now, and cannot wait for the time that my wife will retire, too. As I mentioned earlier, we had built a house about six months before I was diagnosed. We had just moved into the house and were getting things done around the house, and then I was diagnosed with cancer. So, there were a lot of things put on hold, but a lot of those things just do not mean anything to me any longer.

The only thing I want to do now is buy a motorhome and travel. Have a smaller house and travel back and forth. My wife is not quite on the same page with me, but she is getting there, and so I am hoping that that dream will come true. All she wants to do is spend time with our 3 grandkids, which of course is wonderful also.

We have done a lot in our life together. We’ve been to the Caribbean a few times and rented boats and sailboats. We spent time out, about ten days, on a sailboat sailing around the British Virgin Islands, which was nice.

What helped Mike during his treatment

Wife and family

I have nothing but praise for my wife, who is a terrific nurse, and she took such good care of me while I was in the thick of treatment.

She was my rock when I needed a rock, gave me my pills, set my appointments, cooked supper. She was beside herself because she could not go to me for my treatments. But she was still able to drive me to them and drive me home.

With her being a nurse it just came naturally. I did not have a bell to ring, but she was always there for me and was willing to do anything that I needed. She took over.

It’s so important to have somebody to talk to; there were a lot of times that I would get upset, it is an emotional time, and when you are diagnosed with cancer, it tugs at your emotions. So, there were many times that my wife and I would sit there and talk about things. 

Anytime that I was uncomfortable, and there were a lot of times my back was hurting from the surgery, I have a 12-inch scar in the middle of my back where they took the tumor out. So, to make me more comfortable, she rubbed my back, her and the grandkids too. They would get a rolling pin and roll it up and down my back, and that always felt good.

I’m well aware that it was no walk in the park for her. She had to take care of the house and its day-to-day concerns. That right there is a huge burden, paying bills and things like that. That weighs heavy on those people and the caregivers. 

Faith and friends

My faith and our church family have also really risen to the occasion and have really helped me through this whole thing. A big part of how I have been able to deal with the last three years is because of my faith.

Our faith in God got us through these tough times. I talked to God a lot during those days, and I had peace. I would not say that I was worried because I looked at it this way: If I go first, I win.

You know, sometimes people say it takes a village, and it really does. I just thank the Lord.

I would not say that I was worried because I looked at it this way:

If I go first, I win.

Lessons Mike wants to share

Be mindful of the caregivers too

When I know that somebody has cancer, it is not only “How is that person doing?”, but also “How are the caregivers doing?”

You know, because it is tough on them, and you can see it if you are around people enough. They need prayer, too. They need just as much prayer as the sick person.

My advice to the patient would be to be patient with the caregiver. You are both walking down a road that you have never been down before, and they are going to think one way, and you are going to think another way, but always remember to be patient. 

You know, we all run out of patience from time to time, but for me, as a patient, getting upset with my caregiver, I did not like that, and I apologized because, yes, it is a tough thing to go through, and I am the one going through it, but they are going through it also.

They need their time, and they need their respect, and as patients, we have got to give it to them and love them because they love you the best way that they can. We have got to love them the best way that we know how. 

Without them, it would be a lot harder. It is hard enough, but going through that time without my wife as my caregiver… I do not know if I would have made it.

We are all on different journeys

My final message would be: everybody has a different journey. 

You can ask a question about how you get through chemo and all that, but I think everybody is going to have a different answer. My answer would be: it is your game; play it the way that you need to. 

If you feel like doing something, do it. If you are tired, and that is another thing, fatigue, good grief, the fatigue is just unbelievable, and if you do not feel like doing something, do not do it. 

Eventually, you will have to get up and do something, but you will know when to do it.

You know it is your game to play.

Thank you for sharing your story, Mike!

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More Non-Hodgkin Diffuse Large B-cell Lymphoma (DLBCL) Stories


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



Symptoms: No noticeable initial symptoms; persistent, significant back pain
Treatments:Surgery (removal of spinal tumor) chemotherapy (R-CHOP)
Don S. feature profile

Don S., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Weight loss, fatigue, enlarged lymph nodes
Treatments: Chemotherapy, radiation, immunotherapy (epcoritamab)
Michael E. feature profile

Michael E., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss
Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)
Lena V. feature profile

Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1



Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation
Cindy M. feature profile

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



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
Categories
Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Patient Stories Targeted Therapies

Michael’s Relapsed Diffuse Large B-Cell Lymphoma (DLBCL) Story

Michael’s Relapsed Diffuse Large B-Cell Lymphoma (DLBCL) Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Michael E. feature profile

Michael recounts his journey with diffuse large B-cell lymphoma (DLBCL) alongside his wife and care partner, Kimberly. He was initially diagnosed in 2016 but after experiencing pain in his lower back and leg coupled with severe itching, it led to a diagnosis of a relapse.

After undergoing chemotherapy, he faced severe side effects including weight loss, itching, and pneumonia. He then underwent CAR T-cell therapy, experiencing a brief remission. Michael tried a drug through a clinical trial but saw limited success. Eventually, he turned to epcoritamab (EPKINLY), which has brought about significant improvement without notable side effects and improved his quality of life.

Michael emphasizes the importance of advocacy, seeking multiple opinions, and maintaining hope throughout the challenging journey. His wife Kimberly stresses the crucial role of care partners in managing and supporting treatment and well-being. She emphasizes the significance of self-care for caregivers and persistence in seeking answers and treatment options.


Genmab

Thank you to Genmab for its support of our patient education program! The Patient Story retains full editorial control over all content.

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


  • Name: Michael E.
  • Diagnosis:
    • Relapsed Diffuse Large B-cell Lymphoma (DLBCL)
  • Initial Symptoms:
    • Back & leg pain
    • Rash
    • Severe itching
    • Decreased appetite
    • Weight loss
  • Treatment:
    • Chemotherapy
    • CAR T-cell therapy
    • Clinical trial (no improvement from study drug)
    • Immunotherapy: epcoritamab
Michael E.
Michael E. timeline
Michael E. timeline


I was having lower back pain and an incredible amount of pain down the front of my right leg.

Michael

We knew two issues were going on, but we had no idea that they were pointing to the same thing.

Kimberly

Introduction

Michael: I was born and raised in Ravenna, Ohio. My wife Kimberly and I have six daughters and 10 grandchildren.

Kimberly: I didn’t know I would be a care partner when we got married, but it was a role I took on. I did it willingly, but it was a rough road.

Michael E.
Michael E.

Pre-diagnosis

Initial Symptoms

Michael: I was having lower back pain and an incredible amount of pain down the front of my right leg. I thought it was a pinched nerve or I’d done something wrong while working out.

Kimberly: We thought it was back trouble. That was coupled with severe rashes and itching. At that time, the two didn’t seem related. We knew two issues were going on, but we had no idea that they were pointing to the same thing.

Testing

Kimberly: The back and leg pain started around Labor Day and the rash started in October. By November, we noticed weight loss.

The Friday after Thanksgiving, he consulted with an orthopedic surgeon since we presumed it was back trouble and the surgeon ordered an MRI.

Michael: My wife pushed, so we got in sooner than scheduled.

Michael E.

They began treatment with the inclination that it probably was going to be diffuse large B-cell lymphoma.

Kimberly
Michael E.

Diagnosis

Kimberly: Based on Michael’s previous history, the doctor said, “We’re seeing enlarged lymph nodes. You have a lot of tumors pressing on your spine and that’s why you have this pain. We’re pretty sure your cancer is back.”

After the MRI, we saw the oncologist he had previously worked with.

Michael: I was diagnosed with DLBCL in 2016.

Kimberly: They ordered a biopsy, but because it was so severe, they began treatment with the inclination that it probably was going to be diffuse large B-cell lymphoma. They didn’t want to hold off on treatment. He had two rounds of chemo when the results of the biopsy came back and confirmed that it was DLBCL.

Michael: We didn’t find out what was going on until we went to Columbus. I will always be grateful to the oncologist in Akron because he had the wherewithal to say, “This is beyond me and I don’t know what to do with this.” He put us in contact with the hospital in Columbus and we met Dr. Voorhees, who took the ball and started running with it.

Kimberly: He was malnourished and dehydrated because of severe weight loss. The majority of the weight loss happened within three weeks.

Michael E.
Michael E.
Reaction to the Diagnosis

Michael: We were not expecting to hear that. When you hear something like that, it sets you back on your heels.

It’s scary because you don’t know what’s going on. Most people who get a cancer diagnosis start by looking for answers and don’t expect it to be serious. Most people think, I’ll get this taken care of and then we’ll move on the next day. Our next day turned into a 2 ½-year journey.

Kimberly: In the beginning, you don’t process because you’re on autopilot and doing everything you can for your loved one, like getting them to treatments and making sure they’re comfortable. Oftentimes, the reality of what’s happening doesn’t sink in.

An example is when we spent Christmas Day in the hospital. That was his initial stay from being dehydrated and malnourished and when he received his first round of chemo. I cooked him a quasi-Christmas dinner in the visitors’ lounge of the hospital.

Looking back at pictures of him, he was on the edge, but because I was so in the moment and going through everything a day at a time, I didn’t realize it then. A lot of the processing didn’t happen until later on.

One of the side effects I had was some of the worst itching of my life.

Michael

Treatment

Chemotherapy

Michael: We started with chemotherapy. I received a high amount of chemotherapy and I about died twice from it. Looking back, it was necessary to save my life.

I wasn’t in very good shape at all. I started at around 240 lbs. By the time we got to Columbus, I was down to 150 lbs. Being in that state physically is not a good place to start.

Michael E.
Michael E.
Side Effects of Chemotherapy

Michael: One of the side effects I had was some of the worst itching of my life to the point where it was causing me to have a different outlook on things. It was horrible. I’ve never experienced anything like that in my life.

Kimberly: When they started a second round, the reactions got worse. That’s when his skin started to blister and he was treated as a burn patient.

At that point, his doctor said, “This is way more than I can handle. I want you to go to the James Cancer Center.”

Michael: They had to come up with other treatment options. Thankfully, they got us through. It was like going through stages. Everything we went through got us to the next step. Then from there, we’d go to the next step. It went on down the line like that for a while. They kept me alive and kept me moving.

CAR T-cell Therapy

Michael: Our main goal was to get to CAR T-cell therapy, but we had to choose interim treatments in order to keep the cancer at bay long enough.

I asked Dr. Voorhees, “What do I have to do to be eligible for CAR T-cell therapy?” He said, “You have to be able to walk into my office.” Ten days later, by the grace of God, I was able to walk into his office. I went from being flat on my back to walking into his office.

I didn’t know anything about CAR T-cell therapy. We learned quickly, especially my wife. She’s a detail-oriented person and because of who she is, we learned quite a bit about how CAR T-cell therapy works. She has a curious mind and doesn’t accept not knowing things whereas I’m more of a big-picture guy. Tell me where we’re going and I’ll be there to do my part.

Michael E.

At the 100-day mark, I had a PET scan and they told us that my cancer had returned.

Michael
Michael E.
Post-CAR T-cell Therapy Monitoring

Michael: At that time, we thought CAR T-cell therapy was our cure-all. We believed that. But it turned out to be another step to get us to where we needed to be.

Relapse

Michael: At the 100-day mark, I had a PET scan and they told us that my cancer had returned. I didn’t feel any symptoms. My energy level was starting to increase. My weight was starting to come back. I was feeling good.

Reaction to the Relapse

Michael: When I receive information like that, I go quiet. I’m an internal processor and I think things through before I comment. I felt angry and frustrated. That was a bad day.

We believed that CAR T-cell therapy was a cure-all. We didn’t know that it only had a 47% success rate. Nobody told us. I don’t know if it was an oversight or nobody thought about it, but to be honest, there was some bitterness on my part because no one told us. But there comes a point where you have to accept things, move forward, and start looking at other options.

The next time we met with Dr. Voorhees, the first thing I asked him was, “Why didn’t somebody tell us that the success rate was less than 50%?” He said, “I don’t know why that didn’t happen.” He didn’t dodge the question. He was very honest with us about it. You don’t want to hear bad news, but you need to hear everything so that you can make good decisions.

I never allowed myself to think that there would be anything negative coming from that. We did everything that’s been asked of us. We trusted it and believed it would work. For 100 days, it was great.

Michael E.
Michael E.

Joining a Clinical Trial

Immunotherapy

Kimberly: We’re thankful that in today’s world, multiple options are available. His oncologist, who we started working with prior to and after CAR T-cell therapy, is always great at providing options. He felt that our best chance for controlling the lymphoma and giving Michael a quality of life would be to go on a trial.

There was a trial that he was aware of, which had some results, and he thought that would be best. We’re very adventurous and very aggressive, so we said, “All right, let’s do the trial.”

He was trying to keep my cancer under control until we could get to the point where we could find something that would work well.

Michael

Michael: I took eight pills a day and had to be monitored. Thankfully, I didn’t have any side effects.

Kimberly: Every day, I’d say, “Oh, you look a little better,” or, “Oh, you gained a little weight.” After several months, it was obvious that it wasn’t having an effect.

Michael: A PET scan showed that the disease progression slowed down but not to the degree that they had hoped. He was trying to keep my cancer under control until we could get to the point where we could find something that would work well. He said, “We’re going to try to move on to some other things because that wasn’t working.”

Kimberly: The good news is that it wasn’t necessarily worse, but there was no change, and there definitely still was active disease so we had to do something else.

Michael E.
Michael E.

Bispecific Antibody

Kimberly: Dr. Voorhees presented us with three options, but he felt that two of them were not viable.

His number one option—and the one I wanted Michael to pick—was another round of chemo because that’s a sure thing. We knew that it would control the lymphoma but not sure how it would play out.

A second option was to have a round of immunotherapy, which he responded to before but wasn’t a sure thing. Michael chose immunotherapy because he said, “Why would I want to be alive if I can’t have a quality of life and actually live?”

That was hard for me as a care partner because I wanted the sure thing. We knew that chemotherapy would knock out the lymphoma and keep it under control, but as a care partner, I also had to respect his wishes.

Michael: I love Dr. Voorhees dearly. He’s a good man. He makes you part of the process. If you start getting off the path a little bit, he’ll gently steer you back on, which I’ve always been grateful for and appreciated.

Kimberly: Based on Michael’s previous response to CAR T-cell therapy and the information from ongoing trials, epcoritamab seemed like it would be our best hope. Dr. Voorhees was confident that we would see at least some response.

Michael: He laid out the options. It was my choice. The choice I made was something that I thought would work best for me because of how my body handled CAR T-cell therapy. Bispecific antibodies were very similar so we went in that direction.

Kimberly: I read about the trial on epcoritamab and I felt that everyone who participated was identical to Michael. They had been through very similar things and that was very encouraging at that point.

We had to apply for compassionate use from the FDA because it was still waiting for approval. Michael had to have some additional treatment.

Michael E.

I thank God every day for the people who came up with the medication that saved my life.

Michael
Michael E.

Michael: I’m on epcoritamab (EPKINLY). One of my greatest hopes and prayers is that people have the opportunity to continue on to tomorrow, to enjoy life, and to enjoy their families.

Right now, I take epcoritamab once a month. I started with one a week and that went on for a while, then it went down to one every two weeks, and then we got to the point where I’m at now. The process takes 30 minutes. I used to take a couple of pills before I received the injection, but I don’t have to do that anymore. I go there, they give me my injection, then I go home.

From where we live, it takes between 2 ¼ to 2 ½ hours each way to drive to Columbus for a five-minute injection. It’s a very small price to pay for the results that we’re getting. Compared to everything else that we’ve been through, that is a very easy solution.

I thank God every day for the people who came up with the medication that saved my life. It was a very long ordeal for us and, thankfully, because of a lot of very intelligent people, epcoritamab was developed, is working for us, and makes a big difference.

Response to Epcoritamab

Michael: Within a month of receiving epcoritamab, my weight started coming back. My strength returned and I was able to do things that I hadn’t been able to do in quite a while. I’m back to 238 lbs and getting to do things that I never used to do.

I’m back to working out a lot, which I enjoy. My wife and I ride bikes, kayak, and play with the grandkids. We love to ride roller coasters and we like to travel. We live life and that’s something that was taken from us.

A lot of things were stripped from me when we went through cancer. I like to have the right to make my own choices and that was very hard for me to accept. To this day, when I think back on what happened, it doesn’t sit well with me. You have to learn to deal with it and get to the point where you find the goodness in things.

Michael E.
Michael E.

Kimberly: The immunotherapy did its job. It was almost as if I could see him transforming weekly. His energy level was up. He was able to resume his activities.

The day that I knew that we had hit a turning point was when he worked for about 10 hours in our yard. He loves landscaping. He’s an arborist by trade. He came inside and said, “I’m exhausted.” The red flags went up and I said, “Oh, no, here we go.” And he said, “No, I’m not cancer fatigued. I’m exhausted from working hard in our yard.” That was the moment I knew that we had turned a corner.

Side Effects of Epcoritamab

Michael: There were supposed to be some side effects, but I didn’t have any. It operates in a similar way as some of the medications that worked well for me, so I thought, If that worked really well, we’ll go ahead and have a go at this. It was a medication that my body accepted and that worked well. I have been at full tilt ever since. It’s a true blessing for us.

Don’t be afraid to ask all the questions that you want to ask. Make sure that you’re getting the information that you need.

Michael

Words of Advice

Michael: Part of the reason why my wife and I are doing what we’re doing is to help. We don’t want anybody to go through what we did. If there’s anything that we can do to help somebody look in another direction, hang on one more day, or give them a little hope that there is a better tomorrow out there, then that’s what we’re doing. We want to help and this is one of the ways that we’re doing it.

Don’t wait. Go see a doctor. If the physician that you are seeing now is not the right one for you, don’t be afraid to switch. At the end of the day, it wasn’t just about me. It was about my family and continuing on to be with them.

When you get to a hurdle that you need to cross, be your own advocate. Be involved in your own care. Find a doctor who will talk to you, not at you. Find a physician who will work with you.

Michael E.
Michael E.

The oncologist that we were seeing in Akron said that this was beyond him and what he was accustomed to dealing with. Once he got the PET scans, the test results, and the first attempt at chemotherapy, he said this was beyond him. I admire him for that because he could have said, “We can try this, this, or this,” but he cared enough about us to say, “This is beyond me.” I have always appreciated that about him.

I’ve always been grateful that he had the courage to say that he wasn’t the person who could do this for me. He could have been prideful and said, “I can handle this,” but he didn’t. He had my best interest at heart. We got pointed in the direction we needed to go, so I’ll always be grateful to him.

Before going to the James in Columbus, we did some research and, for us, it’s one of the premier centers in the United States for cancer treatment so we were very comfortable with that decision.

Everybody we met at the James was wonderful—the doctors, the nurses, the people who make the food, the people who clean the rooms. They were all wonderful people, very kind, very loving, very patient, and not afraid to answer questions. I can’t tell you what a really good organization they have down there so I have no regrets going there. Because they took care of me, I’m here today and I get to enjoy my wife, my family, and my friends. I get to enjoy life. Two years ago, that was not the case.

Don’t be afraid to ask all the questions that you want to ask. Make sure that you’re getting the information that you need. You owe yourself that much.

Don’t be afraid to change. Don’t be afraid to try things. Rely on your family and friends because they want to help. They may not always know how, but they want to help. Allow them to be part of the healing process. It makes a big difference.

There has been some goodness that came out of all this and we’re trying to focus on that now. I’ve tried to forget some of the things that happened because they were so bad. I’m trying to look toward the future and enjoy life the best way I know how.

Have things to hold on to, whatever it takes for you to hang on for one more day. For me, it was religion. If you’re a religious person, God is your rock. We’re a religious family and that was something that helped us get to the next day.

Have hope. I know that’s going to be hard at times, especially if you’re getting bad news after bad news after bad news. Sometimes that happens. Don’t give up. Everything that we did that didn’t work was a stepping point for us to get to the next step, to the next day, and to where we are today. Do everything in your power to not give up.

Michael E.

You and the people around you are a lot stronger than you realize.

Michael
Michael E.

There’s nothing to be ashamed of when it comes to talking to a mental health professional. They can help make a big difference. Sometimes you need to talk things out. You and your family are under a lot of pressure and stress.You have a lot of questions and maybe wondering if you’re going to have tomorrow. That is another avenue that you can take to help you clarify and focus on what you have to do to get to the next day. Being prideful that you don’t show your emotions is not a good thing. No one can do that. Sometimes things come out and that’s okay.

Value your family, the day that you have, and the life that God has given you. Be glad to get up in the morning and see the sun come up. Be happy with small things.

You and the people around you are a lot stronger than you realize. I learned that about my children. You try to protect your children by keeping things from them because you don’t want them to feel pain, but I learned that you don’t have to keep things from them to protect them. They’re there to help you and they will help you in ways that you never thought would happen.

My grandkids would always write me little notes and tell me, “You can do this!” They were right. Family is everything and everything like that matters. The things that used to matter to me are not very important anymore. It helps you focus on what matters.

Michael E.
Michael E.

It has been an experience, but at the end of the day, it’s been a good one. I’m grateful for everything that everybody has done for us and for where we are in life right now. It’s good to be alive, so I’ll do the best I can to enjoy life every day and be happy.

We want to help and that’s why we do what we’re doing. If this makes one person’s day a little better, then we’ve accomplished our goal.

Figure out a way to take care of yourself. It may look different to you than it does for other people, but it’s important and it’s okay to think of yourself.

Kimberly

Kimberly: Advocate for yourself and for the person who you’re going through this with. We all assume that medical providers know everything. They know a lot and we’re thankful for them. However, they’re not with our loved ones day in and day out. They don’t see the subtle changes that happen day in and day out. There are things that you can bring to their attention that they may not catch. It’s not that they don’t know their job. It’s not that they don’t care or that they’re in a hurry. They’re just not with them.

Ask questions. If something doesn’t seem right, ask. The worst thing that’s going to happen is the doctor is going to say, “No, this is correct,” or, “I’ve already taken that into consideration.” The best thing that’s going to happen is you’re going to bring up something that they were unaware of and that could make a difference in care.

Michael E.
Michael E.

I encourage care partners, whether you’re a spouse, a family member, or a friend, to figure out a way to take care of themselves. They say to get rest and ask for help because you can’t give if your tank is empty. All of those things are true, but no one tells you how to go about that.

It’s different for each person. Oftentimes, it’s difficult to think of yourself because you’re healthy and not the one going through treatment or constantly wondering what’s going to happen tomorrow. It’s important that you figure out a way to take care of yourself. It may look different to you than it does for other people, but it’s important and it’s okay to think of yourself.

We were dealing with a recurrence so there were things that we needed to be aware of that someone who is getting a first diagnosis may not.

All the little things matter. If something is persistent, you might think it will go away and it might, but it’s better to find out. If something is persistent and you can’t get any answers, keep asking and keep looking. Don’t defer to, “This is the best we can do,” “We’re not sure,” or, “Try this.” Keep asking.

On this side, it’s easy to say, “You have to have hope. Hope is what got us through.” It’s true. Having hope keeps you going. However, when your husband’s glucose levels are so low that he shouldn’t be able to open his eyes or breathe and you’re not sure how many more breaths he has, hope is hard, but you have to find something to hold on to.

With a terminal diagnosis, that hope may be that you get to spend five more minutes with that person. It might be that you get to spend one more day with that person. Our mantra through the whole thing is that life is good as long as we’re breathing the same air. It didn’t matter if it was hospital air, Hawaii air, bedridden air in our home, but as long as we were breathing the same air, there was hope and that’s what got us through. Find whatever hope is for you.

Michael E.

Genmab

Special thanks again to Genmab for its support of our independent patient education content. The Patient Story retains full editorial control.


Michael E. feature profile
Thank you for sharing your story, Michael!

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Categories
Non-Hodgkin Lymphoma

New Options for Non-Hodgkin Lymphoma

New Options for Non-Hodgkin Lymphoma

What to Know in NHL Care in 2024

Watch an empowering patient event and discover the latest advancements in non-Hodgkin lymphoma care, including Diffuse Large B-Cell Lymphoma (DLBCL) and Follicular lymphoma.

Watch Dr. Kulsum Bano and Dr. Nilanjan Ghosh from Atrium Health Levine Cancer Center, along with Dr. Justin Favaro from Oncology Specialists of Charlotte, discuss the latest advances with 3 times DLBCL survivor and patient advocate Dr. Robyn Stacy-Humphries.

Video Chapters

  • 00:00 – Doctor + Patient Introductions
  • 07:34 – DLBCL Current Treatment Options
  • 10:07 – Follicular Lymphoma Current Treatment Options
  • 15:39 – R/R Treatment Options (Follicular Lymphoma)
  • 17:39 – Bispecific Antibodies
  • 21:42 – Bispecific Antibodies Side Effects
  • 30:00 – DLBCL Bispecific Antibody Clinical Trials
  • 35:43 – CAR T-Cell Therapy
  • 41:39 – CAR T-Cell Therapy Side Effects
  • 53:40 – FL Bispecific Antibody Clinical Trials
  • 1:01:30 – Can We Have Chemo Free Treatments?
  • 1:04:06 – Access to CAR T-Cell Therapy
  • 1:16:11 – Defining Medical Roles
  • 1:22:53 – Questions & Answers
  • 1:22:55 – Getting a Second Opinion
  • 1:24:40 – Bispecifics vs. CAR T-Cell Therapy
  • 1:43:45 – Monoclonal antibodies as options

Genmab
AbbVie
Incyte

Thank you to Genmab, AbbVie, and Incyte for their support of our patient education program! The Patient Story retains full editorial control over all content.

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


Learn Through Non-Hodgkin Lymphoma Patient Stories


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



Symptoms: No noticeable initial symptoms; persistent, significant back pain
Treatments:Surgery (removal of spinal tumor) chemotherapy (R-CHOP)
Don S. feature profile

Don S., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Weight loss, fatigue, enlarged lymph nodes
Treatments: Chemotherapy, radiation, immunotherapy (epcoritamab)
Michael E. feature profile

Michael E., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss
Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)
Lena V. feature profile

Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1



Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation
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Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



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Treatment: Chemotherapy (R-CHOP)
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Kim S., Follicular Lymphoma, Stage 4



Symptom: Stomach pain
Treatments: Chemotherapy (rituximab & bendamustine), immunotherapy (rituximab for 2 additional years)
Categories
FAQ Hodgkin Lymphoma Non-Hodgkin Lymphoma

Types of Lymphoma

Types of Lymphoma, Symptoms and Diagnosis, and Treatment Options

Lymphomas refer to a broad class of blood cancers that affect blood cells, bone marrow, lymph nodes, and the lymphatic system in general. Leukemiamyeloma and myelodysplastic syndromes (MDS) are other common types of blood cancers, and there are more than 70 different types of lymphoma.

Learn more about the types of lymphoma, signs and symptoms, treatment options, and patient stories.

lymphoma

What is lymphoma?

Lymphoma is a type of blood cancer that affects the lymphatic system. The lymphatic system, or lymph system, refers to the circulatory and immune system organs and tissues that help support your body’s immune functions.

There are many different types of lymphomas, some of which are aggressive and others that are very slow growing. The more than 70 types of lymphoma are broadly put into one of two classes: Hodgkin lymphoma or non-Hodgkin lymphoma.

Both Hodgkin and non-Hodgkin lymphomas can occur in children and adults, and they generally develop from white blood cells called lymphocytes. Cancer develops in B lymphocytes and T lymphocytes (B cells and T cells, respectively) and can then travel to other parts of the lymphatic system and beyond.

Cancer cells can eventually form tumors in lymph nodes, bone marrow, the bloodstream, and other organs.

Hodgkin lymphoma

According to the Lymphoma and Leukemia Society, approximately 8,000 – 9,000 people are diagnosed with Hodgkin lymphoma (Hodgkin’s disease) annually.

Hodgkin lymphoma’s cellular hallmark is the presence of a particular type of tumor cells called Hodgkin Reed-Sternberg cells, a mutation of B lymphocytes. These abnormally large cells are confirmed through biopsy samples.

Hodgkin lymphoma is more common in young adulthood, particularly in adults in their early 20s. Hodgkin lymphoma may also present in late adulthood (55+). It affects both males and females.

Hodgkin lymphoma types

There are two main subtypes of Hodgkin lymphoma: classical and nodular lymphocyte predominant. Ninety percent of Hodgkin patients present with classical Hodgkin lymphoma.

Classical Hodgkin lymphoma can be broken into four subtypes:

  • Nodular sclerosis
  • Mixed cellularity
  • Lymphocyte-rich
  • Lymphocyte-depleted
Wade looking out over a lawn

In person I was told that it wasn’t cancer, that it was some sort of infection that was causing the lymph nodes to be inflamed, but they sent it in to a different place for a second opinion.

That came back as Hodgkin’s.

Wade W., classical Hodgkin lymphoma

Non-Hodgkin lymphoma

Non-Hodgkin lymphoma, sometimes abbreviated as NHL, is the more common class of lymphoma. It can occur at any age, though it is more common in older adults.

There are two major divisions of NHL: B cell lymphoma and T cell lymphoma.

B cell lymphoma

Approximately 80% of NHL diagnoses are B cell lymphomas. This can include:

T cell lymphoma

Although there are some rare T cell NHL cases, the more common T cell lymphomas account for approximately 15% of non-Hodgkin lymphomas, including:

  • Peripheral T cell lymphoma not otherwise specified 
  • Anaplastic large cell lymphoma
  • Angioimmunoblastic lymphoma
  • Autaneous T cell lymphoma

Lymphoma signs & symptoms

Lymphoma symptoms will vary based on the individual, but many patients report painless swelling of lymph nodes in the neck, armpits, or groin. Some other common symptoms include:

  • Fever
  • Rapid weight loss
  • Night sweats
  • Fatigue
  • Body itching

However, these symptoms may not necessarily mean cancer. Swollen lymph nodes are common when fighting infection or when you have a cold. If any symptoms persist without change (or they get worse), you should see a doctor so they can determine the root problem.

I think a lot of the cancer websites really get it right when they describe cancer fatigue as the fatigue that doesn’t go away when you sleep or you rest.

Luis V., diffuse large B cell lymphoma

I had an incredible hard time breathing through my nose (near 90 to 100%) blockage which led me to seek the ear, nose, throat (ENT) doctor to take a look.

As a result, I had the ENT in Santa Barbara diagnose the issue and help by having a simple procedure to remove the tissue. When they removed the tissue, he found some of the tissue suspicious and as a result, sent it in for a biopsy.

It was through this surgery that they first discovered Hodgkin lymphoma cells in the tissue removed from my adenoids. Before that, I had no idea that I had Hodgkin’s lymphoma.

Helicon K., Hodgkin lymphoma

Lymphoma Diagnosis

Because there are so many types of lymphoma and treatment varies based on type, making the correct diagnosis is critical. Your doctor will review your physical symptoms, but diagnosis is determined through a biopsy.

A biopsy is a procedure where a doctor removes a small piece of tissue for examination. A surgical biopsy is an outpatient procedure where the lymph node or diseased tissue is removed partially or in full.

A core needle biopsy involves using a hollow needle to remove a core tissue or fluid sample.

In addition to a biopsy, your medical team will order imaging tests to determine where the lymphoma is located and how far it has spread. Your doctor will also order a bone marrow biopsy to determine if the lymphoma has spread further.

Imaging and bone marrow biopsy will help determine staging, which will help inform and guide treatment.

In the following three weeks I had a needle biopsy, bone marrow biopsy, a port placed, a surgical biopsy because the cells from needle biopsy had dried up by the time they reached the Mayo Clinic, and a PET scan. 

I’ll be honest, the bone marrow biopsy hurt, but that was probably because she couldn’t get enough fluid so she had to do it four times. I don’t think that normally happens, but the surgical biopsy was probably the worst.  It hurt for weeks after and I’m now left with a decent sized dent on the right side of my chest where the scar is. 

Keyla S., Non-Hodgkin lymphoma

Lymphoma Staging

The Ann Arbor classification system was originally developed for Hodgkin lymphoma diagnosis but is now used to diagnose disease severity for all types of lymphoma.

  • Stage I – Stage I is localized to a single lymph node region or single organ.
  • Stage II – Stage II defines disease that has spread to two or more lymph node regions on the same side of the diaphragm.
  • Stage III – Stage III involves disease on both sides of the diaphragm and may or may not involve the spleen.
  • Stage IV – Disease has spread to multiple organs outside the lymphatic system.

Some hospitals consider Stage III and Stage IV as the same stage because treatment approaches are similar.

Lymphoma treatment

Treatment will vary based on the type of lymphoma, the staging, and how aggressive the disease is. Broadly speaking, these treatments are the most common:

Hodgkin lymphoma treatment

Hodgkin lymphoma is usually treated with chemotherapy and radiation therapy. The most common chemotherapy course is known as ABVD, named after the four drugs used in treatment:

The “red devil” was push chemo. That typically went by pretty fast. That one didn’t do a whole lot to me during the infusions. I only had two infusions of the bleomycin because it was destroying my lung function so bad. They had to cut it out.

Once I got to the vinblastine, I was just so exhausted. I pretty much slept through that and had the dacarbazine. That was light-sensitive, and it was wintertime thankfully, but any time I would go out in the sun, it was so sensitive. I had to wear long sleeves and hats. 

Madi J., Hodgkin lymphoma

I got ABVD chemo for the first two cycles, which was four rounds. For the rest of the eight treatments, it was just the AVD.

They took out the B drug (bleomycin) because my PET scan after the first four treatments showed that I had no evidence of disease. They were able to take out the bleomycin since it can be hard on your lungs.

Lia S., Hodgkin lymphoma

Once I got to the vinblastine, I was just so exhausted. I pretty much slept through that and had the dacarbazine. That was light-sensitive, and it was wintertime thankfully, but any time I would go out in the sun, it was so sensitive. I had to wear long sleeves and hats.

Madi J., Hodgkin lymphoma

Non-Hodgkin lymphoma treatment

Non-Hodgkin lymphoma is also often treated with chemotherapy, with R-CHOP being the most common chemotherapy course for B cell lymphomas:

The first round, the first week I just felt headache-y. I wouldn’t say I felt 100-percent but I felt fine, which is really weird. That was good, the first round, until about the third week. My hair started falling out.

I think in my third round, my doctor said rounds three, four, and five are the hardest. She was 100-percent right. Round two was okay, I felt gross the first week but nothing major. I felt nauseous but it was controllable.

Round three I felt really awful. Headache-y, so nauseous, everything tastes awful. I did get really bad mouth sores every round after that. It really hurt to swallow. Brushing my teeth was incredibly painful so that was really hard.

Emily G., Non-Hodgkin lymphoma

Lymphoma survival statistics

Since 1960, when data first became available, 5-year survival rates for Hodgkin lymphoma have doubled from 40% in the 1960s to almost 90% in 2016.

For people age 45 or younger at diagnosis, the 5-year survival rate is around 95%.

For non-Hodgkin lymphoma cases, the 5-year survival rate is around 75% as of 2016. In people with NHL diagnosed younger than 45, the 5-year survival rate is 84.7%.

And it’s not perfect, right? Because here I am. I’ll be six months in remission in a few days. Gee, that’s great, right? What does it mean? Well, it doesn’t really mean anything in and of itself. Doesn’t mean I’m cured, doesn’t mean that I’m going to be alive in 10 years, it doesn’t mean I’m going to be alive 20. What it means is that I’m six months in remission, and I’ve got today.

What am I going to do today? I’m going to help somebody today. How am I going to be seen today? How am I going to see other people today? That’s really important. And I would encourage people, when others say, “Live every day as if it was your last,” to really shut that message down. Because to me, that message works best when you cut it in half, and you just leave it at “Live every day.”

Luis V., Non-Hodgkin lymphoma

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