Living with Diffuse Large B-cell Lymphoma:
Resources, support, and how to handle relapse.

There are a few basic things you can do to help manage the process when you first learn of your cancer diagnosis.  Dr. Heather Yeo, a colorectal surgeon at Weill Cornell and an advisor to SurvivorNet, has these tips for patients:

• Have someone come with you to the doctor
• Take notes
• Don’t be afraid to get a second opinion

While life is filled with uncertainties, people living with cancer may feel this at a more extreme level. Dr. William Breitbart, the chair of the Department of Psychology and Behavioral Sciences at Memorial Sloan Kettering Cancer Center, explained that learning to embrace that uncertainty is a part of living … not just for those fighting cancer, but for everyone.

“What the task becomes is having the courage to live in the face of uncertainty, realizing that you cannot necessarily control the uncertainty in life … the suffering that occurs, challenges both good and bad,” Dr. Breitbart said. “You may not be able to control those but you have control over how you choose to respond.”

Many people choose to work through cancer treatment as it can provide a sense of normalcy and a welcome distraction. However, others are not able to continue working and may need to take either paid or unpaid time off from work.

There are protections that require employers to provide “reasonable accommodations” to people with cancer and that provide job security should a patient need to take significant time off (even if that time off is unpaid).

When you are diagnosed, consider speaking to a social worker and/or your job’s HR department for guidance on what your options are when it comes to work.

You can also speak directly to your oncologists or other providers as they can typically help with any paperwork that may be needed from your employer.

Apart from other cancers developing later, patients may also experience other side effects. Some may appear a long time after the end of their treatment for non-Hodgkin lymphoma.

One possibility is that patients may experience some amount of peripheral neuropathy, which is “sort of a numbness or tingling in the hands and feet, or perhaps a bit of pain,” medical oncologist Dr. Michael Jain, of the Moffitt Cancer Center, explained.

If you experience numbness, tingling, or prickling sensations, speak to your doctor. Neuropathy can be managed with medications and other therapies, including surgery.

Another possible side effect that survivors may experience is a phenomenon colloquially known as “chemo brain.” This is a mental fogginess or cloudiness that prevents you from focusing or finishing tasks.

Over time, these symptoms tend to improve, but it’s still important to speak to your doctor when they appear.

When undergoing chemotherapy, the main diet goal is to maintain weight.

Krista Maruschak, a registered dietician at the Cleveland Clinic, says that eating six smaller meals a day and packing some extra calories and proteins into these meals when possible can make a big difference.

Extra calories doesn’t mean you should have a bag of potato chips with every meal. Things like nuts, dairy products, olive oil, avocados, and hummus are all healthy fats that will do the trick.

If you have questions ask your treatment team to connect you with a dietician.

The vitamin and supplements industry is massive — but there’s not a whole lot of clear data showing that many of these products are effective, particularly when it comes to cancer.

“A very important issue to remember…is that they are not FDA-controlled, which means that you don’t really know what you’re getting,” said Dr. Marleen Meyers, a medical oncologist and Director of the Cancer Survivorship Program at NYU Perlmutter Cancer Center.

Dr. Meyers recommends her patients focus on a healthy diet instead of relying on a capsule for their vitamins or nutritional needs.

Also, make sure you inform your treatment team of every supplement you are taking as some may interfere with therapy. It is best to get your doctors advice before taking or continuing supplements during cancer treatments.

To be clear: the experts we have spoken with have all made it clear that there is no “cancer diet,” meaning there are no guidelines that are recommended for every person with cancer.

The general recommendations for a healthy lifestyle are the same whether you have cancer or not. But Dr. Ken Miller, the Director of Outpatient Oncology at the University of Maryland Greenebaum Cancer Center, has some guidelines for cancer survivors who are concerned about a recurrence:

1. Exercise at least two hours a week (and walking counts!)
2. Aim for a low fat diet
3. Eat a colorful diet full of fruits and veggies
4. Maintain a healthy weight

People who have cancer may wonder if diet and exercise is still a priority for their health. The short answer is: absolutely. In fact, it may be more important than ever for patients’ well-being.

“In terms of cancer, oftentimes patients feel that they don’t have any control over any part of their life and that’s not true,” Dr. Sairah Ahmed, associate professor in the division of cancer medicine at the University of Texas MD Anderson Cancer Center, told SurvivorNet.

On the contrary, she said, diet, exercise, and stress control are extremely important when going through cancer therapy, as well as once you’re done treating your cancer and are working on recovery.

The period immediately after treatment can be a confusing time. Don’t be afraid or embarrassed to ask questions if there’s anything you don’t fully understand.

Non-Hodgkin lymphoma is a very complex cancer that has many different types and components. It’s important that you understand what needs to happen both during the treatment process and afterwards.

It’s natural to feel continuing mental health effects, such as depression and anxiety, even after your treatment ends. This is where you can benefit from a supportive community. Look to strengthen your relationships with friends and family, faith groups, support groups, and mental health professionals to buoy you as you move on from treatment.

In addition to caring for their mental health, people who finish treatment and are in complete remission will want to move on from cancer with a physically healthy lifestyle. Eating nutritious foods, exercising regularly, staying at a healthy weight, and not smoking are all lifestyle practices that generally contribute to a healthy quality of life.

Indeed, the cancer and its treatment might naturally point survivors in the direction of such practices.

“Mostly [we’re] trying to maximize the quality of life that people have, because once you have a cancer diagnosis, I think it is an important time in someone’s life where they can take stock and really understand what’s important,” Dr. Jain told SurvivorNet.

Your oncologist will continue to monitor you for a few years after your treatment ends. During these regular follow-up visits, your doctor will give you physical exams that include an assessment of your lymph nodes, questions about any symptoms, blood tests to check for signs of cancer, and possibly imaging scans.

Polatuzumab vedotin (Polivy) is a new kind of drug called an antibody-drug conjugate. Unlike chemotherapy, which destroys all kinds of quickly-dividing cells, both healthy ones and cancer, Polivy finds and targets your cancer cells specifically. Once it attaches to these cells, it releases an anti-cancer drug. Doctors give Polivy together with the chemotherapy drug bendamustine, and Rituxan. You may be a good candidate for this treatment if your lymphoma has come back after you’ve tried at least two other therapies.

Tafasitamab (Monjuvi) is a monoclonal antibody. It targets the protein CD19 on the surface of cancer cells. You may get Monjuvi, together with lenalidomide (Revlimid), if your cancer has come back and you’re not a good candidate for a stem cell transplant.

Selinexor (Xpovio) is a first-of-its-kind treatment called a nuclear export inhibitor. It prevents cancer cells from protecting themselves. The FDA approved Xpovio in June 2020 for people with diffuse large B-cell lymphoma who’ve tried at least two other treatments.

CAR T-cell therapy is “effective, even in patients who had no response to chemotherapy in the past,” Dr. Jennifer Crombie, medical oncologist at Dana-Farber Cancer Institute, told SurvivorNet. “We’re glad to have a novel approach for those patients.”

While CAR T-cell therapy is the main immune therapy that is currently approved for relapsed lymphoma, many other immune therapies are in clinical trials.

Sarah Kelly, an Oncology Social Worker at Cancer Care, said that the shock of hearing you have cancer for the first time sets off a fight or flight or freeze response in a lot of people — freeze being an especially common reaction. Doctors tend to throw a lot of information at people when they tell them they have cancer, it can be really hard to sift through that information and pick out what’s important.

“Your mind can go completely blank,” Kelly said. “If we think of fight or flight or freeze, freeze is a big one that happens where people feel like ‘Oh my God, I have no idea what to do.’ We can help people figure that out.”

Social workers can help with a variety of issues that arise during cancer treatment, from mental health issues to financial issues. It’s really helpful to have someone in your court when you need them.

After a cancer diagnosis, it’s important to ensure you get the support you need mentally. Psychiatrist Dr. Lori Plutchik recommends the following three steps:

Step #1: Seek additional support if you need it. This could mean speaking to a mental health professional or seeking out a support group.

Step #2: Look for a mental health professional who has experience helping people in your situation (perhaps they specialize in helping people experiencing anxiety after a diagnosis).

Step #3: Keep your care team connected. This may include your friends and loved ones, your therapist, and the doctors who are treating your cancer.

Enduring cancer treatment isn’t just a physical challenge. It also involves emotional exertion.
Many people with cancer experience extreme anxiety as they wait for scan results, a phenomenon informally dubbed “scan-xiety.”

The uncertainty of waiting for information about the progress of your disease can be overwhelming.

Speaking with SurvivorNet, psychiatrist and author Dr. Samantha Boardman discussed strategies for managing the stress of this uncertainty, and how the experience of “flow” can give patients a break from scan-related anxiety.

One is a simple exercise Dr. Boardman uses involves drawing four columns on a piece of paper.

“I’ll ask patients to write down what I don’t know, what I do know, what I can’t control, and what I can control,” she said. From there, “a helpful way to dial down their anxiety” involves “trying to move as many items as possible into what they do know and what they can control.”

“It’s really important when you’re starting treatment to speak with someone, and a social worker is a good place to start,” Sarah Stapleton, a licensed clinical social worker at Montefiore Medical Center in New York, told SurvivorNet.

Stapleton says that hospitals and clinics have social workers who are there to help you handle all the issues that might come up around treatment, including financial concerns. She added that social workers can help navigate insurance coverage, financial assistance and even determine whether grant funding might be available for your treatment.

Another option is antibody-drug conjugates, which are made up of a monoclonal antibody attached to a drug. The antibody binds to the protein on the cancer cell, before releasing the drug near or into that cell.

Currently, there are three new antibody-drug conjugates approved by the FDA in relapsed/refractory DLBCL.

They are used  as bridging therapy when a patient is waiting for CAR-T cell therapy. The drugs include:

• Polatuzumab vedotin
• Loncastuximab
• Tafasitamab

“Find a way” are words former NFL running back Merril Hoge, who played for the Pittsburg Steelers and the Chicago Bears before moving on to a broadcast career with ESPN, has lived by for nearly his whole life. It’s the title of his first book, it motivated him to do whatever it took to make it to the NFL and it helped him through his battle with non-Hodgkin’s lymphoma.

In a wide-ranging interview with SurvivorNet, Hoge says it was actually his daughter, who was 9 at the time the former footballer was diagnosed in 2003, who reminded him that he would, indeed, have to find a way to get through treatment and get back to living.

“I’ve always used that as a parenting tool,” Hoge tells SurvivorNet. “Everybody has issues.

Everybody has circumstances that need to change. It became a parenting tool for me in that, when they have a problem, or they’re dealing with something or want to accomplish something, I’m not going to sit there and tell them what to do. I’m going to get them to think about it and then inspire action. I didn’t realize it would be reversed on me.”

“When she did that, it transformed me. Dying wasn’t an option. Being sick and tired, feeling sorry for myself, laying on the couch — not an option,” he adds. “I knew going bald was gonna still be an option. But the energy that changed in me, the way my mind started to work — how can I beat this? What am I dealing with first?”

Marc Silverman, best known as “Silvy” from his ESPN Radio show “Waddle & Silvy” on WMVP 1000-AM in Chicago, announced in 2020 that he had been diagnosed with stage 3 non-Hodgkin lymphoma.

Shortly after, he told SurvivorNet that when he was diagnosed with the disease, he didn’t feel sick. He admits feeling a “little tired,” after noticing swelling in his lymph nodes in his neck. He eventually discovered a groin lymph node was swollen and was not receding — which ultimately led to the diagnosis.

On sharing his diagnosis publicly, the radio host told SurvivorNet “I share everything in my life.”

“We’ve been on the air for 13 years and thankfully it’s mainly been good stuff. I started as a single 34-year-old broadcaster — a young broadcaster relatively speaking for hosting a talk show — and I lived in the city and Waddle (his radio co-host and former Chicago Bears wide receiver Tom Waddle) lived in the suburbs. He had the kids and I was single and through these 13 years we’ve evolved into different things. Now I have a four-year old and a six-year old,” he explained.

“You know, I announced when I got engaged, everyone at the radio station was at my wedding, when we announced that we were pregnant, when we had our first child. Everything throughout my life we’ve always opened up the door to go through these milestones and big moments.”

One of those big moments was the diagnosis—and the response he got shocked Silverman.

“I thought I would get a few messages wishing me well. I didn’t realize the impact that it would have on some people and that the impact that people have made on me. The phrase I keep going back to is ‘You have an army behind you.’ Do you know how many people have either fought cancer or are survivors? I truly didn’t know what that meant.”

A lot of people dealing with pain and other side effects of cancer have already tried more traditional methods before they decide to give medical marijuana a try, according to integrative cannabis physician Dr. Junella Chin.

“When you take plant-based cannabis, marijuana, you’re decreasing inflammation, and you’re relieving pain at the same time,” Dr. Chin explained.

But how can pot do this, and why? Dr. Chin explains that humans have a natural cannabis system, or an endocannabinoid system, that our bodies create. When a person is in chronic pain though, these natural pain relievers aren’t enough.

“So when we utilize phytocannabinoids from the cannabis plant, we are actually replenishing our body’s own cannabinoid system. By doing so, it helps us deal with pain and inflammation much more effectively,” she said.

A lot of survivors tell us that they’re incorporating mindfulness into their cancer recovery experiences.

Shannon Masur, who took on colon cancer and Lynch Syndrome, said she had never meditated before she was diagnosed.

“I thought it would be such a challenge,” she said. “But it really wasn’t because [my guide] has taught me how to … when a thought comes in, to feel it, feel the fear, but let it go after a few seconds.”

Getting negative thoughts and energy out of your mind can make a real difference during a cancer journey.