Living with Diffuse Large B-cell Lymphoma
Resources, expertise, and survivor support to help in the months & years after diagnosis

To help you along the way during your fight against diffuse large B-cell lymphoma (DLBCL), SurvivorNet has developed a series called Living with Diffuse Large B-cell Lymphoma.

This series is designed to help you navigate some of the challenges that may pop up during treatment and beyond.

General Information

General information to help along the way

We know that you’ve likely already made many tough decisions and are preparing to begin the next step in your journey, which may be treatment or simply adjusting to a new normal.

While you let the medical information set in, you may find yourself second-guessing decisions. This is common and experienced by many people going through this process. Here, we cover some often-overlooked topics, including connecting with others, information about your job, and the financial cost of treatment.

Getting the news about cancer: practical guidance

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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

Learning to Live With Uncertainty

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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.”

Will disclosing my diagnosis get me fired?

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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.

Living With Cancer

Making a survivorship plan

After treatment for Diffuse large B-cell  lymphoma, you will need to be monitored for cancer recurrence as well as any additional health problems that may pop up.

If you have not experienced many complications from therapy, you may be able to go back to doing many of the things you did before treatment. However, you and your doctor will need to schedule follow-up visits and tests to monitor for any sign of disease in the future.

Monitoring after treatment

A survivorship plan will include a schedule for follow-up exams and tests to check for any long-term health impacts from your cancer or treatment—and screening for any new cancers.

You may be at higher risk for cancers including additional blood cancer (leukemia) and solid tumors (lung cancer, melanoma, sarcomas, breast cancers, and mesothelioma). Some of these risks will depend on what specific treatments you had during therapy.

Your doctor will likely tell you what to look out for in terms of side effects that could show up late or over the long term. Your care team will provide you with diet and physical activity recommendations as part of your survivorship plan.

Non-Hodgkin lymphoma treatment, side effects — and beyond

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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.

Understanding Side Effects

Dealing with treatment side effects

You may experience a slew of different side effects during and after treatment for diffuse large B-cell lymphoma. Here, we will outline some common side effects from different treatments and what can be done to manage them.

R-CHOP side effects

Most people who are diagnosed with DLBCL will hear the acronym R-CHOP at some point — usually at the beginning of their treatment. As you may already know, R-CHOP is the shorthand term for a five-drug chemotherapy cocktail.

Some common side effects from the chemo cocktail include:

  • Fever
  • Bruising/bleeding
  • Fatigue
  • Shortness of breath
  • Nausea/vomiting
  • Hair loss
  • Diarrhea
  • Weight loss

There are interventions your doctor can prescribe to deal with side effects, but make sure you are keeping your doctor in the loop about any new symptoms, particularly fever as that can indicate a low white blood cell count.

R-CHOP side effects

Radiation side effects

Most non-Hodgkin lymphoma patients who get radiation tolerate it quite well, according to our experts. However, some people may experience some redness under the skin, mouth sores, trouble swallowing, hair loss in the treated area, nausea, and diarrhea. Side effects from radiation only happen in the radiation treatment field and typically take several weeks to occur.

These side effects typically resolve over several weeks after completing treatments. Although almost all of these side effects are short lived some may pose a risk several years down the road. To understand these side effects in more detail talk to your radiation oncologist and other providers in your treatment team.

What's it like to undergo radiation?

Diet & Exercise

Diet & exercise advice for non-Hodgkin lymphoma patients

While doctors are always going to recommend that you stick to a healthy and balanced diet, it is perhaps more important during treatment to ensure you are eating in general. Maintaining a healthy diet after treatment is important as well to aid with recovery.

Make sure you let your doctor know if you are experiencing side effects, like nausea, that are affecting your ability to take in nutrients and could be affecting your weight. To stay healthy, it’s important to keep your weight up when going through treatment such as chemotherapy.

Nutrition goals during treatment

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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.

What about vitamins, minerals, and supplements?

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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.

Eating right & staying active after cancer

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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

When it comes to diet and exercise, balance and moderation is key. You may not feel up to your old workout routine after finishing cancer treatment, but that doesn’t mean you can’t maintain an active lifestyle; it may just look different.

Diet, exercise & maintaining a sense of normalcy

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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.

Monitoring After Treatment

Monitoring after treatment

Diffuse large B-cell  lymphoma is the most common type of non-Hodgkin lymphoma in the U.S. Though it is often a fast-growing cancer, treatment has very high success rates if the disease is caught early.

With the current standard treatment, the success rate for people with stage I or II diffuse large B-cell lymphoma is around 70-80%.

What to know about life after treatment

As previously discussed, after successful treatment, patients and their teams will turn their sites to a “survivorship plan.”

Your doctor will tell you what to look out for in terms of side effects and provide you with diet and physical activity recommendations as part of this plan.

If the cancer does return at some point, any future treatment you get will depend on:

  • The type of lymphoma you had
  • The type of treatment you received for it
  • How long it has been since you finished treatment
  • Your overall health

For people with more advanced disease, meaning stage III or IV, the treatment process could be longer.

You may be given the same combination of chemotherapy drugs and the targeted drug rituximab (Rituxan), but you may have more treatments than you would if you had an early-stage cancer.

Generally, it takes more than four months of therapy to treat later-stage lymphomas.

Moving on after treatment

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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.

Finding Support

Where can I turn for help with mental health? What about paying for treatment? Finding the support you need

The shock of hearing you have cancer for the first time can be a lot to handle. The stress of putting together a treatment plan and going through the ups and down can feel like a huge burden.

The important thing to know is you are not alone. No matter what kind of support you are looking for, whether that’s a group of fellow survivors to talk to, professional mental health resources, or a social worker to help navigate paying for treatment—there are many resources available to you.

How can a social worker help?

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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.

Seeking mental health support: 3 steps to take after a diagnosis

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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.

Struggling with scan-xiety? Steps for cancer survivors to manage stress

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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.”

Navigating the cost of treatment

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“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.

Relapse

Understanding the risk of relapse

People with diffuse large B-cell lymphoma who have already undergone treatment may be optimistic about the future, while still wondering about the possibility of relapse.

Each patient’s risk profile for relapse is different and based on multiple factors, which we’ve broken down for you in the videos included below.

What is the risk of relapse?

Factors contributing to the risk of DLBCL relapsing include:

  • Biology of the tumor
  • Genetics of the tumor
  • Older age
  • Cancer stage/aggressiveness
  • Response to chemotherapy

Depending on these factors, the risk of relapse could range from 20% to 50%.

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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.

The important thing to remember here is that if you do relapse, there are still treatment options available to you.

What are the treatment options after relapse?

One new therapeutic option if your cancer has returned is immunotherapy — harnessing the power of your immune system to go after your cancer. “[Immunotherapy is] frequently discussed in the popular scientific literature,” Dr. Stephen Schuster, medical oncologist at Penn Medicine, told SurvivorNet. “Some of it sounds like science fiction. It’s very cool stuff.”

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One group of immunotherapy drugs, collectively known as the monoclonal antibodies, use a protein called an antibody to hone in on a target on the surface of cancer cells. Rituxan is one such drug.

Chimeric antigen receptor (CAR) T-cell therapy is one of the newest high-tech cancer treatments. During this therapy, your treatment team will take your own immune cells, called T cells, and genetically modify and multiply them in a lab so that they attach to proteins on the surface of your lymphoma cells and attack them.

These treatments each work in a slightly different way. And they can be effective for people who’ve tried and failed previous treatments.

How do innovative options like CAR T-Cell therapy work?

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CAR T-cell therapy takes your own immune cells and re-engineers them to find and attack your cancer.

Two of these therapies are FDA-approved to treat relapsed large B-cell lymphoma:

  • Axicabtagene ciloleucel (Yescarta)
  • Lisocabtagene maraleucel (Breyanzi)

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.

New Treatment Options

Bispecific antibodies and the future of non-Hodgkin lymphoma treatment

A promising new therapy called bispecific antibodies could deliver a one-two punch to non-Hodgkin lymphoma. However, this type of treatment is not being studied for everyone with this particular type of lymphoma right now.

Bispecific antibodies are being tested in studies with people whose non-Hodgkin lymphoma hasn’t responded to other treatments or has come back after treatment (relapsed).

Bispecific therapies are a bit different from other approaches because they can bind to two antigens at once. One arm of the treatment binds to the lymphoma cell and attacks it directly. Meanwhile, the other arm attaches to a “killer” immune cell called a T-cell and pulls it toward the lymphoma cell. Ultimately, the lymphoma gets attacked on two fronts.

How do bispecific antibodies work?

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Antibodies are proteins that find and stick to another type of protein called an antigen on the surface of germs or abnormal cells. Rituxan is a monoclonal antibody. It’s a man-made version of the antibodies your immune system uses as scouts to circulate throughout your body and find foreign invaders. Rituxan sticks to a protein called CD20 on the surface of cancer cells. Then it helps your immune system destroy those cells.

Bispecific therapies are different, in that they can bind to two antigens at once. One arm of the treatment binds to the cancer cell and attacks it directly. Meanwhile, the other arm attaches to a “killer” immune cell called a T-cell, and pulls it toward the lymphoma cell. Ultimately, the cancer gets attacked on two fronts.

Two of these newer therapies are FDA-approved to treat relapsed diffuse large B-cell lymphoma and can be effective for people who’ve tried and failed two previous treatments. These include:

  • Glofitamab (Columvi)
  • Epcoritamab (Eplinky)

Eplinky was recently approved (May 2023) by the FDA to treat DLBCL patients who had already undergone two previous therapies and required additional treatment.

The approval was based on results from the EPCORE NHL-1 trial, which found that 61% of 148 patients achieved a partial response (a reduction in their disease burden) and 38% achieved a complete response (complete disappearance of their disease). The duration of the response was 15.6 months on average.

The exciting new approval adds a new treatment tool for a type of disease that had previously been difficult to treat.

The future of non-Hodgkin lymphoma treatment

Could New Non-Hodgkin Lymphoma Drugs Mean Less Chemo in the Future?

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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

Survivor Stories

Inspiring survivor stories

After—or during—the cancer treatment process, it can be really helpful to hear the stories of people who have been through the same struggles and how they coped and learned to live with, and move on from, the disease.

In this chapter of Living with Diffuse Large B-cell Lymphoma, we’re sharing the stories of three incredible non-Hodgkin lymphoma survivors—some of whom you may recognize!

SoulCycle master instructor talks ‘settling the mind’ after non-Hodgkin lymphoma

Former NFL running back Merril Hoge talks ‘finding a way’ through non-Hodgkin lymphoma

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“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?”

ESPN host Marc Silverman on facing non-Hodgkin lymphoma during height of Covid-19 pandemic

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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.”

Integrative Medicine

Meditation? Medical marijuana? Integrative medicine can help you cope

Integrative medicine can be really helpful both during and after cancer treatment, but it’s important to understand the difference between integrative medicine and alternative medicine.

These days many cancer doctors actually support integrating other methods into care, as long as patients understand the difference between “integrative,” or holistic medicine, and “alternative medicine,” which seeks to replace approved treatments, and often has little or no serious science to support it.

The difference between ‘integrative’ and ‘alternative’ medicine

Integrative medicine blends things—like diet and stress management—with conventional medicine.

Your doctor may also suggest things like acupuncture or even medical marijuana to ease pain and other side effects.

Understanding how medical marijuana alleviates pain

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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.

Meditation

Many cancer survivors have found solace in meditation during or after the treatment process. When dealing with a journey that can be nerve-wracking and very emotional, it can really help to take some time to quiet the mind.

In this chapter of Living with Diffuse Large B-cell Lymphoma, we’ve included a guided meditation for beginners and some testimony from cancer survivors about how helpful and therapeutic it can be.

A guided meditation for beginners

'Feel the fear and let it go' — meditation for cancer survivors

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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.

More Resources

Living with diffuse large B-cell non-Hodgkin lymphoma

We have made it to the end of the Living with Diffuse Large B-cell Lymphoma series. We hope that you were able to find some helpful information and some of the support you are looking for as you embark on your journey as a cancer survivor.

Be sure to check out SurvivorNet’s designated non-Hodgkin lymphoma section for a breakdown of the basics of the disease, treatment options, and what you can expect as a survivor.

We also provide regular updates on any new treatment options and inspiring stories from survivors like you.

At SurvivorNet, we’re here to help survivors navigate the complex world of living with cancer. Thank you for being part of the family!

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