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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.

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Categories
CAR T-Cell Therapy Chemotherapy Continuing the Dream Diffuse Large B-Cell (DLBCL) Diversity, Equity, & Inclusion Immunotherapy Non-Hodgkin Lymphoma Patient Stories R-CHOP

Tony’s Relapsed/Refractory Diffuse Large B-Cell Lymphoma (DLBCL) Story

Tony’s Relapsed/Refractory Diffuse Large B-cell Lymphoma (DLBCL) Story

Tony was in peak physical condition, working out several times a day when he suddenly began to struggle with fatigue.

After undergoing scans and tests, he was diagnosed with diffuse large B-cell lymphoma (DLBCL), the most common adult form of non-Hodgkin’s lymphoma. He would later learn that his specific subtype is known as T-cell/histiocyte-rich large B-cell lymphoma (THRLBCL).

Before his diagnosis, Tony was an avid cyclist and fitness enthusiast. He noticed a decline in his physical performance despite his extensive training routine, as well as swelling in his leg. After consulting with his chiropractor and internal specialist, a CAT scan revealed that he had cancer.

Although his blood tests did not indicate lymphoma, the cancer had spread extensively throughout his body, leading his doctor to believe that he may have had it for years without knowing.

Tony made a conscious decision to keep a mindset of strength and perseverance that allowed him to face his diagnosis.

He voices how he processed his diagnosis, how he dealt with the side effects of R-CHOP chemotherapy and CAR T-cell therapy, and what he did to stay mentally and physically strong.


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Thank you to Genmab & AbbVie 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 and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Tony W.
  • Diagnosis:
    • Relapsed T-cell/histiocyte-rich large B-cell lymphoma (THRBCL)
  • Initial Symptoms:
    • A lot of effort needed cycling; body wasn’t responding the same
    • Leg swelling
  • Treatment:
    • Chemotherapy: R-CHOP
    • CAR T-cell therapy


Introduction

I’m an igniter. I have started several businesses in my career.

I went to North Carolina State University and majored in civil engineering and pre-med. I wanted to be a doctor at some point.

I’m an avid cyclist. I love to work out.

I’m a go-getter. I can’t sit still. I like to initiate things and see things come to fruition.

I’ve always been that person that didn’t need someone else to motivate me. I’ve been highly self-motivated [throughout] my 51 years on this planet. I just love learning new things.

I play the organ, the bass guitar, [and] the saxophone. I love music. I sing [and] write music.

Anything that I put my mind to, I try to do the best that I can do.

Tony W. cycling
Tony W. lifting weights
My T-cell histiocyte-rich large B-cell lymphoma story

If you ask anyone who knows me, they would say, “No, not him. Can’t be Tony. No, you’re joking.” I lost a lot because COVID hit exactly at the same time. It was rampant when I got sick.

At the time, I had about 200 employees working for me. We lost a lot of contracts and things were just out of my hands. I couldn’t do anything about it because I had to focus 100% on my health.

Cancer doesn’t care [about] your economic background, what race you are. [or] your social status. When it comes for you, it will come for you no matter what you thought you had built up in life.

I thought I was leaving some legacy behind and it came for me. What am I going to do after it comes for me? I never asked myself why. I said, “Okay, why not?” And that was my approach. Why not?

I’m a guy that works hard, does a lot in the community, [and is] active in the church. There’s no discrimination. It can happen to anybody.

Pre-diagnosis

Initial symptoms

I’m an avid cyclist. We ride a lot of miles. At that point, I was doing about 350 miles a week. Being in an endurance sport, you learn [about] your body.

I have this reputation on the team of being pretty fast and pretty fit. I wasn’t giving the guys the business like I normally would be doing. It was just a lot of effort. Something wasn’t right.

They couldn’t really tell any difference because I just won’t stop. I give everything I have, but my body was not responding the same. If I wanted to go an extra five miles an hour, it was a struggle. Coming out the curb or the corner trying to chase somebody down was a struggle.

Then I started noticing that my leg was swelling. I lift weights a lot. I do spin class a lot. I said, “Maybe I hurt my back.” My chiropractor worked on it and she said, “This isn’t getting better. Your leg is swelling.” We thought it was sciatica nerve, but it wasn’t. She said, “Maybe you need to go see your internal specialist.”

I went to the internal specialist. We were thinking maybe I had kidney stones or something bacterial was causing me to experience this. When she checked me out, she said, “You look healthy. There’s nothing wrong. Your blood looks fine. But how about we just do a CAT scan?”

That’s when we had that “Oh my!” moment.

I was 49 going into 50 years old that year. I thought I was going to have this great 50th celebration. I was sitting in a chemo chair on my birthday.

Tony W. team flow cycling
Tony W. cycling

When I first saw my oncologist, the first words that came out of his mouth [were], “If you were not as fit as you are, we would be having a different conversation.” All those miles, all that training, spin class, and gym work, whatever small percentage that was, gave me a jump start and it might have saved my life.

I’ve been an athlete all my life. You develop this push-through-no-matter-what mentality. We push past the threshold. That’s not a good thing all the time.

Think about professional athletes [and] collegiate athletes. Everybody pushes through but they pay for it [in] the end. That’s the mentality that you develop. No matter how you feel, you just push through.

“This hurts.” Push through. “I feel a sore here.” Push through. You develop that mentality that I’m going to beat whatever how I’m feeling and I’m going to still push through. That’s simply what I was doing.

Diagnosis

My blood wasn’t giving them anything. They would run my blood and it would come back good. No signs of lymphoma.

I look at it as if it was the perfect storm. If your body was going to operate in its most perfect form, my lymph nodes did exactly what they were supposed to do.

My cancer was so prevalent that my doctor thought I might have had it for years and didn’t even know it. It had completely taken over my stomach, my lung, everywhere.

I could see the fright in my doctor’s eyes when he saw [the scan], but he could see the tenacity in my eyes. When he told me what it was, [he went] over options.

I had to make a conscious decision. What are you going to do about it? There [wasn’t] any time for tears. I didn’t cry at all. I sat there and made a decision. I looked him in the face and said, “Okay, game on. Let’s go.”

I cried later but [at] that moment, I made a decision. I had to let the cancer in my body know: I’m not giving you victory in my mind this quickly.

I created this alternate reality. I created this warrior mentality. “You coming for me? I’m going to come for you.” No matter what my doctor said, I already told myself that [I’m] going to beat this. I’m going to do whatever I have to do to overcome this.

Tony W. in the hospital
Tony W. cycling
Breaking the news to family & friends

Initially, I didn’t let anyone know. I’m very methodical and I like to see things through before I bring attention to something. I want to have control of the situation. I wanted to know exactly what was happening because people are going to have a lot of questions.

Going through a chiropractor and my initial doctor locally and even once my oncologist told me, I still didn’t tell them about it. I waited.

I went for a walk. We have a pond in my neighborhood so I sat out there on the pond bench and that’s when I had my moment.

I called my mom. I’m the first child, the oldest grandchild. I remember telling my mom, “I don’t want to die.” She said, “What are you talking about?” I started crying and that’s when I told her.

My wife was there so she knew, but she was frightened. She didn’t know what to say or what to do. Then I told one of my best friends.

It hit me when I was talking to my mom. That’s the person that birthed me. It was devastating.

After that conversation, I zipped those tears up. I said, “It’s not a crying situation. It’s time to go. Time to go to work.”

Drawing boundaries

I said that I will not let family and friends imprint on me. We’re going through enough as is. We know our odds. We know the percentages. We know what we’re facing. Sometimes, [because of] their mere concern for you and all the emotions they bring to the situation, loved ones will compound your situation.

You have to put them at arm’s length. You can’t take on what they’re saying because sometimes, out of love, they will give you bad information or will remind you, “Only 1% of people live from this?” They don’t mean any harm but their words will hurt you.

This is what I did. Love your loved ones, but guard yourself. At the end of the day, it’s a one-on-one thing. You’re battling that cancer. You’re battling everything that comes with it. They’re not doing that with you. They will stand with you, but they’re not here. That’s where your battle is.

The crying was symbolic of accepting what was happening. It’s real. We can create all the alter egos we want, but accept that it’s real. The crying just released that in me.

I felt free. A freeness came over me. It was a calm and peace that came over me. I felt like it was necessary.

Tony W. in the hospital

A lot of times, men are providers. We like to take care of things. We have our egos. We want to feel important. We validate ourselves by what we can do for you, what we can give you, or how we can protect you.

We’re not conditioned to be as emotional. Women are more emotional incubators and that’s a good thing because you need to have that balance. We need to have that also as men and sometimes we don’t. If you hold that in, [it’s] just adding more stress to your situation.

Crying and releasing helped me further along in my process versus me doing it at a time that wouldn’t be optimal. I was doing soul-searching, too. I thought, “Tony, you have done this. You came through this. You have broken through this ceiling. You have done all of these things. You can do that, too.” That’s how I approached it and it helped me.

Tony W. treatment

Treatment

I had R-CHOP, which was pretty nasty.

I left my local doctor and went to [the] UNC hospital system. That’s where I met Dr. Boles, my oncologist. We talked about my treatment plan. He gave me all the options and encouraged me to get a second opinion.

But I already knew. When you know, you know.

When I look that man in the eyes, I see a caring, compassionate person [who’s] concerned for me. And that’s important because sometimes, a lot of us will get someone [who] doesn’t have [a] good bedside manner, just matter of fact, or [will] bring gloom to your situation and you already know it’s gloomy.

He talked to me almost like the big brother going to the little brother who’s a doctor. You’re putting your trust in the little brother now because he has [the] skill set you don’t have. That’s [the] kind of relationship he and I have. I was the big brother who was relying on him as my little brother to take care of me.

One thing he told me [was], “Tony, by nature, you’re not a selfish person. You employed people, started a cycling club, and you did all these things. You give a lot to people. But I need you to be selfish. This is the one time you will have to be the most selfish in your life.

“You have to block out all the background noise, all the chatter. Stay off of Google. Inundate yourself enough that you understand what’s going on with you, but don’t deep dive to the point that it causes hysteria.”

Keeping physically active during treatment

[During] certain rounds of my chemo, I was walking five miles a day every day and doing my spin trainer 30 minutes a day.

Finally, Dr. Boles said, “Tony, you got to pick one. You can’t keep doing both.” I already made a determination that I wasn’t going to let those chemicals run roughshod in my body and not do something about it.

I’m out there walking when I was feeling sick, made my other body systems kick in, and it made me feel better than just sitting there. Doing pushups gave me something to look forward to. It made me feel defiant. The more I became defiant, the more I start seeing victories.

Instead of losing weight, I was gaining weight. I was gaining muscle when I shouldn’t have been gaining muscle.

When I look sick, it affected everybody around me. They didn’t know how to handle me. They were very cautious because it was just so unnerving. Not only did I have cancer, which was evoking something in them, I now physically looked the part.

When I first got diagnosed, I got down to 167 pounds. I went to my doctor after chemo and one of my PAs said, “Tony, you’re losing too much weight.”

Tony W. cycling
Tony W. in the hospital

I basically starved cancer. I stopped eating bread [and] sugar. I only ate green greens like spinach and kale. I said, “I’m not giving you anything that you can live off of.” I was losing 6-7 pounds a week. She said, “You can’t do that. You’re losing way too much weight.”

The next time she saw me two weeks later, I was at 190 pounds. When she saw me the next week, I was at 205. I never stopped. I started doing pushups. I start physically challenging myself.

You don’t have to be that extreme, but I didn’t have anything else to do. I do believe that if you’re not physically fit or capable of that, do something. Don’t sit there. Show cancer that you will be defiant.

Dr. Boles told me, “Tony, one of my biggest challenges with my patients is me looking at them and saying, ‘Maybe just walk.’ But I’m looking at a person that never walked in their life so I have to be realistic and say if they weren’t walking before, it’s going to be hard for them to walk afterward. If everybody would just physically move their body, you’re going to move those processes along in your body.”

Chemo is designed to fight cancer, but it wreaks havoc on your organs. That’s a problem for a lot of people. I said to myself, “I need a healthy lung, I need a healthy spleen, I need a healthy heart,” and the only way I knew to keep those things active was to move. That’s what I chose to do.

I’m not trying to be anybody’s superhero. You have a baseline and then you have an extreme. All of us still want the same thing, to be cured and healed. I did, too. I chose the extreme. At the end of the day, we all want to get to the same place. Choose what motivates you to get to that place.

Side effects of R-CHOP chemotherapy

R-CHOP was funny. I’m just an enigma. Because I was doing those things, I’m just breaking all the rules.

I was going every 21 days. After my first R-CHOP session, Dr. Boles and the team would say “How are you feeling? You feel any chills?” No. “Sweats?” No. “Your hair? Well, obviously, your hair is not falling out.” Mm-mm. “You feel nauseous?” Nope.

I had no symptoms that first week. I really believe they didn’t believe me because he dragged me back in there right after the next R-CHOP session to test me. I didn’t feel anything. I was saying, “Oh, this is going to be easy.”

[The] second week, [I] got really sick. I was going into this pattern. [The] first week, I was good. [The] second week, didn’t feel so good. [The] third week, the light came on and I felt like I was back. That was my process all the way throughout like clockwork.

My body is responding pretty well. I had the Red Devil. I’m doing fine.

Tony W. in the hospital
Tony W. scan

The right-hand side [of] my initial scan [was] what it looked like when I first walked into the door. A couple of weeks later, on the left side, was my scan after and that was a premature scan because he wanted to see what was going on. You could see how much of that cancer was eradicated just like that.

On my second round of R-CHOP, I see a bunch of needles. I said, “Whoa! Where are the bags?” They started giving me injections in the stomach.

Dr. Boles said, “You responded so well we’re going to go with some direct shots,” and they [were] putting half of my chemo directly in my stomach because I could handle it. That’s how strong my body was.

I have a port. I recommend getting a port because it saves your veins in the long run.

Hair loss from chemotherapy

Hair loss kicked in on my third session. I went to the bathroom, cut my hair, and it just start coming out in globs. It went just like that.

Your hair’s like your badge of honor. You take honor in that until you have that recessive gene and you lose it and can do nothing about it. But that hadn’t hit me so I still had mine.

You’re not going to get through this with no [side effects] at all and hair was one of them. To lose that, I felt like this is real. Cancer is still fighting. The chemo is doing what it’s supposed to do. It just was a reality check for me.

I would cover my head a lot. I didn’t like the bald look so I don’t have a lot of pictures from that. I don’t want to be reminded of that. I started wearing beanies and look more stylish, but there was no hair.

Tony W. beanie
Tony W. in the hospital
Savoring the small wins

When I started getting little stubble back, I felt good again. It’s funny how that works. You defeat it when you lose your hair, but when it starts growing back, you are so excited. Even if I didn’t have a lot of it, I was happy that it was coming back. It was like a victory.

It’s these small victories you have that you start thinking, I’m getting better. Cherish those moments because any moment that you can have and savor is a win for you.

Post-chemotherapy PET/CT scan

At the end of R-CHOP, Dr. Boles gave me a couple of months off. When I started feeling well, I jumped right back on the bike again. I was feeling good about myself. I thought, “Maybe we won.”

When I had that PET scan, he brought me back in and said, “Well…” I knew. He said, “We’ve got a couple of concerning areas.” I said, “Maybe they’re dead cells, just not giving up.” He said, “No, I don’t think so.”

At that point, I said, “Okay. I got to re-engage.” Dealing with cancer is a battle of engaging and re-engaging. For that brief month or two, I disengaged. But when he told me I had some trouble spots, I had to re-engage all over.

Tony W. CT scan
Tony W. in the hospital

Relapse

Mentally, that was challenging. You have to have a counselor or someone to talk to. I started journaling and I would talk to myself a lot. I would talk to my body and my cells.

He said, “I’m going to send you to the big house, UNC Chapel Hill,” that’s where the teaching hospital is. “I’m going to send you to specialists there.”

He said, “I’ve taken you as far as I can take you, Tony.” [Do] you know how humbling that was to hear a man of his stature saying that? He’s pretty credible. He said, “I’ve got to send you somewhere else, someone that’s better than me.”

So impressed with UNC, so impressed with them. Again, he gave me options. I said, “You know what? The UNC family has been really good to me.”

When I met Dr. Grover, she was just like him. She was amazing. Later on, she said he told her, “When you meet Tony, he’s not going to look like you think he looks. He’s not going to respond like you think he’s going to respond. Just be ready because he’s going to be the opposite of anything that you’ve ever seen.”

CAR T-cell therapy

Early on, I had mentioned to Dr. Boles, “What about CAR T?” I had done a lot of research. He said, “That’s not available at the time,” cause it wasn’t available to my specific type so it wasn’t an option.

In December 2021, CAR T came online for my specific type. When I got to Dr. Grover, she said, “Tony, I have great news. You qualify for it,” so that’s what pushed us into CAR T.

» MORE: What is CAR T-cell Therapy?

The appeal of CAR T-cell therapy

I knew my body needs a break from chemo. That was not going to be an option.

I was very interested in CAR T from a scientific standpoint — taking your cells and modifying them to specifically attack cancer. That’s pretty ingenious.

Cancer is a very smart cell itself. It can change and evolve. Initially, your T cells will jump on it and eradicate it, but cancer will evolve and say, “We’re going to trick you. We’re going to change our makeup so you don’t recognize us,” so the T cells just come cruising right on by it and cancer can still proliferate. I thought it was interesting how they would reprogram ourselves to recognize the tip [of] the cancer.

I said, “This is if insurance would pay for it.” That’s the main thing. They said yes and that’s how we did CAR T. No other options. I wanted to do that one.

Tony W. CAR T-cell therapy
Tony W. in the hospital
Doing research to help with treatment decisions

You have to do an honest assessment of how you’re feeling coming out of this. Chemo can be rough. If you feel like your body can’t handle that, seek second opinions. If your body’s telling you it can’t handle any more of this, it can’t. You may need a break if you can afford to have a break. But if there [are] other opportunities, make sure you understand what they are.

If you don’t feel right and you don’t feel good, you can’t continue down that path. You have to have time where your body can gather itself. That’s what I encourage more so than anything.

Understand your body and understand how much more of this you can take. Pay attention to what your levels are and how your organs are responding and that will tell you what your course of action should be. You have to make sure everything is at a place [where] it could handle another round or another series of chemo.

You have to ask yourself: how am I feeling physically? If your doctors say you’re at a point [where] we’re not as concerned with it spreading rapidly, pause a little bit just to get your mind and body back together so you can engage again. That’s what I would encourage, more so than what treatment you’re seeking.

Don’t be so quick to rush into one treatment, into the next, into the next because that degradation would take place in your body at some point.

Just the word practicing medicine is exactly what it is. It’s practice, unfortunately. They do the best they can through what they’re dealing with, their education, and what they’ve been exposed to, but it’s still practicing medicine.

Holistic care in conjunction with cancer treatment

I found a holistic doctor so I was doing holistic medicine in conjunction with chemo. I was researching holistic doctors in other countries that may not have the scientific approach as developed countries. Some of them rely on Mother Nature who provides us with everything that we need, too. I started looking at plants and herbs that can help me detox.

As quickly as you can detox chemo and chemicals out [of] your body, the more readily your body will be if you have to do it again. I was looking at different options to detox myself outside of traditional medicine.

You don’t want to just keep adding chemicals to your body. They give us chemo then they give us these other pills to help with this and that. But sometimes, Mother Nature gives you that and your body is readily absorbing that versus the tablet.

I would tell them what I’m taking because some of that may affect chemo. Chemo is strong and designed to do what it does. Sometimes you can alter how it works by taking some of these things.

Don’t be a renegade. Do these things in conjunction. Make sure you let them know what you’re taking and then they can tell you. Some things he would say, “I don’t recommend that,” then he will tell me why and it would make sense. Seek other opinions but also validate that versus what you’re already doing. You got to have that balance.

When I would throw all these things at him and he didn’t dismiss me, that’s when I knew he was the doctor for me. Your physician and your team matter. You have to feel good about them. If you don’t feel good about them, find someone that you do. They affect everything about your situation.

If you don’t feel loved or feel like they care, then with the treatment that they’re giving you, you’re not going to have confidence in that. Make sure you feel good about them.

Tony W. in the hospital
Tony W. in the hospital

Preparing for CAR T-cell therapy

CAR T was my most difficult time simply because I was just so uncertain. I was saying to myself, “Okay, I went through R-CHOP. What if CAR T doesn’t work? What’s better than that?” For a moment, my mind would go dancing.

The chemo depletion was very hard for me. They take you to the edge. I had three days worth of chemo depletion.

When you’re sitting there, you can be full of life and your eyes could be all bright and bubbly. But when that chemo starts coursing through your veins, it’s almost like a dimness comes over your body and you can feel an extraction of life just coming out of you. It’s like getting close to death.

Chemo depletion is exactly how it sounds. They depleted my body to the point that there was nothing [so] that it would accept those CAR T cells.

The first day hit me so hard. I went through six rounds of R-CHOP and I didn’t feel like that because they would always give me something to try to bring me back. They would give me the white blood cell shot and help me boost myself back. But this time, [there] was none of that. I could feel like my essence leaving me after that first day.

You had to be within 15 minutes of the hospital. I live an hour and something away so I had to move up there. I stayed in a SECU House, which is like a Ronald McDonald House for grown-ups.

They took me through the back entrances of the hospital to get to the CAR T center because you had to be away from people. You had no immune system at that point.

I always would pass the chapel going up. [On] the second day, I went in and broke down crying. I said, “Lord, I can’t do this.” It drained me so bad I felt like I couldn’t do anymore.

I sat in that chapel [for] about 5-10 minutes. Then I got up, dried my tears, sat in that chair, and had my second day. I did the same thing [on] the third day.

I stayed at the SECU House and started my rehab and recovery. The people there were great. They cook for you, you meet other cancer patients in [the] same situation, and you realize that there [are] a lot of people in worse situations than you.

Nurses call me Zeus at the hospital. At the SECU House, I saw people fighting for their life and I’m walking around like I’m going to a training camp somewhere.

Typically, you have to be there [for] 30 days depending on how you respond and you have to go to the hospital every day for labs. [In] my first seven days, I had no symptoms. I was feeling great.

Tony W. in the hospital
Tony W. in the hospital

I was sitting there talking to my CAR T cells and said, “You guys are my special forces.” Every night, every day, I would check in with them and say, “Hey, what [are] you guys doing?” They’ll say, “Executing. Executing, boss.”

I would talk to myself like that literally. I thought, “Execute. Go into the highway and the byways in my body and find cancer and kill it.” I was just talking to my body.

After the seventh day, my head nurse said, “You’re doing so well. We’re going to let you go home.” This was a Wednesday. That Friday, I got super sick, wound back [in] the hospital, and stayed for 10 days. My doctor was joking, she said, “You [were] my little superstar and you wound up back in here.”

I didn’t have any other side effects. I was lethargic for a while. The fever was the only thing that showed up. After they determined how to get that down and I actually broke it, they let me go back home and I’ve been home ever since.

Post-treatment scan

I finished the CAR T in December 2022 and had another PET scan [in] January 2023.

We found some cells, but I told Dr. Grover the same thing. I said, “Maybe they’re dead.” She was the same way, “I don’t think so.”

I was very discouraged because I put a lot of faith in the process. But all hope wasn’t lost because we were unsure.

The spot that I still had resonating was in the original area. It was very difficult to get to so she wanted to do a biopsy. They went through my hip to get to it. They took 16 to 18 samples and they were decent samples that we could tell what’s what.

Tony W. CT scan
Tony W. CT in the car
Miracle moment

If you believe in miracles, I would say this is a miracle moment. When I met with Dr. Grover [about] the results, she said, “Tony, it looked like someone had pinched it.”

If you can imagine pinching your cell, smashing it, and just excreting everything in it, like you squeezing something really, really tight, that’s how that cell looked. She said, “The report said no lymphoma found.” I thought, “That’s a miracle, right? That’s a miracle.”

But doctors don’t deal in those terms so they’re not going to say certain things. They’re not going to give you certainty or anything because they don’t know. But we both were smiling. No lymphoma found. It was inconclusive.

I have another PET scan to prove whether or not those cells were active, dead, or whatever they were. We will know more.

I had another moment of victory. Typically, when they give you that report, it’s a whole page. When the radiologist gave the report, it was only five lines. That’s all he said. It looked like this and no lymphoma found so that was a win for me.

At that moment, I didn’t want to talk about the what-ifs because now, my faith is renewed again. I’m engaged.

I’m telling myself, “When we have this next PET scan, it’s going to reinforce what we already thought. Those cells are going to be dead.” That’s what I’m saying to myself.

Now, what if it’s still there, right? But it’s the same what-if that we had before. We never did targeted radiation, stem cell transplant is still on the table… A whole lot of stuff is on the table because of how my body responded. My organs are super healthy so they feel confident that I could withstand something if we had to.

I ask my body to respond every time I get knocked down. I think that’s just my faith. That’s the promise that I believe, that I hold on to.

A lot of times, it [doesn’t] have to make sense to a lot of people. It just has to make sense to you because that’s what’s keeping you going. If you’re putting your faith in that, that’s what’s keeping you going. I don’t care what nobody else thinks. Eliminate the background noise.

Tony W. CT in the car
Tony W. in the gym

Words of advice

You have to cry. Go somewhere alone. I was alone, out in nature, crying, [and] talking to my mom. You can’t do that amongst other people. There are moments for that.

You need to have that alone time so you can get yourself prepared for what’s to come. It’s going to help you because it makes them stronger.

Listen to what your body is telling you

Get checked. Do your yearly checkups. Go beyond that. Get your blood analysis done. Take more control of your health.

Sometimes if you feel pain, it’s for a reason. Just go get checked out. I was one of those ones that, “I don’t need to go do that. I know what to do. I’m just going to put some ice on it. I’m going to get a massage. I’m going to do this.”

Go get checked because sometimes, there are things going on in your body that you can’t see that need to get checked. For all the athletes, for mom and dad sitting on the couch, your kids, get checked out and go a little further.

Sometimes the basic check is not enough. Add extra to that. Get your prostate checked if you’re a man. Get [a] mammogram if you’re a woman. Get the blood test done so you can see what’s going on in your body. Those things matter. I would definitely do that over because I didn’t do a great job of that at all.

Make the most of your hospital stay

I made a lot of friends in the hospital. Try to make the most out of it. The nurses and I would have fun. I used to tease them all the time.

You would think, I’m here for my care. They’re giving me chemo. They’re taking care of me. Then they ask you if you’re hungry and they give you some cookies. Like, “What? Cookies? Where [are] the oranges and apples?” They give you all this stuff that you shouldn’t be eating.

I had a good time. I bonded with my team doing R-CHOP. I am thankful for every nurse because they are doing God’s work. It goes unappreciated [and] devalued sometimes, but they work long hours and they legitimately care for you.

That is your frontline. You’re not going to see your oncologist in there with you. You’re going to see the nurse and you’re going to see them all the way through the end. Don’t be nasty and bad to your nurses. Love them. Encourage them.

I would do little things for them just to give them a ray of cheer because they’re taking care of me and they’re breathing life into my situation. They’re making sure I’m taken care of and I appreciate that. You got to appreciate that.

Tony W. CT with care team
Tony W. in the hospital
Cancer is bigger than you

This is bigger than you. Why are you in it? It’s not all about you. It’s bigger than us. When you help other people and pour into other people, it will come back to you. The more you give, the more you will receive.

You have to be selfish to protect yourself while you’re going through this, but you also have to accept that maybe [you] can help somebody. Maybe I can do something. Maybe I can [make] a difference in somebody else’s life while they’re going through this. Maybe I can volunteer at the cancer ward.

Keep yourself engaged not so much on your situation but think about someone who’s doing worse than you.

My biggest impact was when I stayed at the SECU House and I saw so many people that were worse than me; that encouraged me. People that could barely move were cooking breakfast for us, making lunch and dinner for us. They were giving back. In spite of their situation and no matter how they felt, they were willing to give back.

I said, “My life will not be the same. I’m going to give back. I can’t wait till I get some clearance runway.” We’re at the hospital a lot dealing with this. I can’t wait till my doctor says, “You don’t have to come as often. We’ll do it every quarter.” That gives me more time to get activated and start doing stuff because people need that.

Have faith

Sometimes, you just take [the] faith that you have. Faith is something that you really can’t see, so you’ve got to put it in something. Either you’re going to believe in a doctor or you’re going to rely on your faith in God. I chose to rely on that and held on to that

As a result, every time I get low [and] feel like I can’t make it, I just recall that. I’m hoping and believing in the outcome that I want to see happen.

I encourage everybody [to] grab faith and believe because that’s where the battle starts. It starts right [in the mind]. Physically, you can do all you can, but if you lose the battle [in the mind from] the very beginning, you’re fighting an uphill battle. Now you’re battling your belief that you can even be healed from this or that you can be cured from this.

When you can look beyond your situation and into somebody else’s life and try to help them, it will help your situation. It’s that faith — believing in something strong enough that you know the outcome of this end will be for you.

My wing is being fixed so I can fix somebody else’s wing and say, “You know what? At one point in time, I had a broken wing, too.”

We have our tribe. When we move and make an assault on this, together is so much better than going lone wolf. You got an army behind you so it’s not over.

Stay steadfast, everybody. It may seem difficult. It may seem bleak at times, but stay steadfast. Don’t let outside sources influence you. Stay steadfast even in your darkest moments.

Tony W. cycling

Listen to The Patient Story. That’s what I did. One of my favorite stories was Nina. Those are the things that get you by.

We all have our faith, but sometimes you got to put your hands on something. You have to put your eyes on something so guard what you see [and] protect what you hear.


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