What Do You Need to Know About Follicular Lymphoma?

What Do You Need to Know About Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

What should you and your loved ones know after a follicular lymphoma diagnosis? This animated video provides an overview of follicular lymphoma, current treatment options, and important steps for engaging in your care.

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Transcript:

What do you need to know if you or a loved one has been diagnosed with follicular lymphoma? 

Follicular lymphoma is a type of B-cell non-Hodgkin lymphoma. It is typically slow-growing and can begin in the lymph nodes, bone marrow, or other organs. The disease does not always cause symptoms. But if symptoms are present, they can include swollen lymph nodes, fever, unintentional weight loss, and night sweats.  

Follicular lymphoma is classified as “low grade” if the disease is slow-growing, or “high grade,” if the disease is more aggressive and growing more rapidly. 

Follicular lymphoma is staged to understand where the lymphoma is in the body and to help determine which treatment options are best. There are four stages – 

  • Stage I, in which the lymphoma is localized in one single lymph node area or one non-lymph node site. When there is a non-lymph node site involved, an “E” is added to the stage, meaning “extra nodal.” 
  • In stage II, the lymphoma is in two or more areas on one side of the diaphragm. Again, “E” designation means that there is a non-lymph node site involved. 
  • Stage III means the lymphoma is in two or more lymph node areas above and below the diaphragm. 
  • And finally, stage IV is when the lymphoma is widespread, with involvement above and below the diaphragm, including at least one non-lymph node site. 

Unlike in many other types of tumors, stage IV follicular lymphoma is often very treatable, because lymphomas tend to be sensitive to many different therapies. 

Treatment recommendations are based on a variety of factors, including: 

  • Disease stage 
  • Tumor size and tumor grade 
  • Disease symptoms 
  • And a patient’s age and overall health 

For some patients, treatment doesn’t begin right away, and an approach called “watchful waiting,” “observation,” or “active surveillance” is used to monitor the progression of the disease. This usually involves regular oncology clinic visits and lab checks – and sometimes repeat imaging scans. 

When it is time to treat, options may include: 

  • Radiation therapy 
  • Chemotherapy 
  • Targeted therapy 
  • Immunotherapy 
  • Or cellular therapy, such as CAR T-cell therapy or a bone marrow transplant. 

Your physician may also recommend clinical trial options. 

Now that you understand more about follicular lymphoma, how can you take an active role in your care?  

  • First, continue to educate yourself about your condition. Ask your healthcare team to recommend credible resources of information.  
  • Next, understand the goals of treatment and speak up about your personal preferences.
  • Consider a second opinion or a consult with a specialist following a diagnosis to confirm your treatment approach.
  • And, write down your questions before and during your appointments. Visit powerfulpatients.org/FL to access office visit planners to help you organize your thoughts. Bring loved ones to your appointments to help you recall information and to keep track of important details.
  • Ask your doctor whether a clinical trial might be right for you.
  • Finally, remember that you have a voice in your care. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate. 

To learn more about follicular lymphoma and to access tools for self-advocacy, visit powerfulpatients.org/Follicular. 

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients from Patient Empowerment Network on Vimeo.

Once a patient has been diagnosed with follicular lymphoma, what’s next? Lymphoma expert Dr. Matthew Matasar shares his expert advice on key next steps for newly diagnosed patients.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

What three key pieces of advice would you have for a patient who has just been diagnosed with follicular lymphoma?  

Dr. Matasar:

The first thing I would say is that everybody should have access to a second opinion pathology review.  

This is independent of what the doctors are giving you advice in taking care of the illness, but just making sure that the diagnosis itself is correct. We know that the diagnosis of lymphoma is a tricky one for pathologists, particularly if they’re not pathologists that are seeing lymphoma under the microscope every day of the week. And when you go for a second opinion pathology review by having the slides sent to a major academic center, there’s a possibility that the diagnosis will be changed or revised in a way that’s meaningful meaning that it would lead to different recommendations for how to take care of your illness.  

The second is that you’re entitled to a second opinion medical review as well and going to see an expert in lymphoma if your first opinion was with a community oncologist or somebody referred by your primary care doctor who may not have singular expertise in these illnesses, can be helpful. It can be reassuring if that doctor says, “You know what? I agree with your local oncologist, and I’m happy to collaborate with their care.” 

Or they may say, “You know, we have a different perspective. There’s newer data. There’s newer options. There’s clinical trials. There’s other resources to bring to bear,” and maybe your choices are broader than you may have originally believed.  

And the third is just to be that advocate for yourself, to take charge, and to participate in your care. Let your doctors know who you are, how you view things, how you like to receive your healthcare information. Are you a big picture or a detail person, and what are your priorities so that they can best match their recommendations to who you are as an individual, as a person, as a member of a family in the community so that they can give you the most personalized and appropriate recommendations possible.  

Katherine Banwell:

Why should patients consider seeing a follicular lymphoma specialist?  

Dr. Matasar:

I think that it’s increasingly important when you’re looking at a diagnosis of follicular lymphoma to consider seeking an expert second opinion from a lymphoma specialist. And this is because our understanding of this disease is changing very rapidly. The therapeutic armamentarium is changing very rapidly with new treatments becoming available every year. And sometimes a community oncologist who is required to be expert in many different diseases may not have access to the same body of information or the same insights that somebody who specializes in this disease may have at their fingertips.  

What Is Follicular Lymphoma? What Are the Symptoms?

What Is Follicular Lymphoma? What Are the Symptoms? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar defines follicular lymphoma and provides an overview of common disease symptoms.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

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Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

Follicular Lymphoma Research and Treatment Updates

Follicular Lymphoma Research and Treatment Updates


Transcript:

Katherine Banwell:

What is follicular lymphoma? 

Dr. Matasar:

Good question. So, follicular lymphoma, the first thing to say is that it’s a type of lymphoma. And lymphomas are cancers of lymphocytes, of immune cells. So, these illnesses are all cancers that come from and are of the immune system. There’s a tremendous variety of lymphomas, more than 100 different types, and these range from the slowest-growing to the fastest-growing things, and everything in between. But follicular lymphoma is one of the more common of these 100 plus diseases.  

It’s actually the second most common in America, and the most common of what we call the indolent, or naturally slow-growing, B-cell lymphomas. It’s called follicular lymphoma, because the stage of lymphocyte growing up at which we think the cells went wrong was when they normally live inside of these little nests, or follicles, inside of lymph nodes. People get confused. They’re like follicular, is that like hair follicles? It’s not that I have that many left. But no, it’s really about the lymph node follicles. And that’s sort of the stage at which we think that the cells went wrong.  

Katherine Banwell:

What are the symptoms of follicular lymphoma?  

Dr. Matasar:

So, it’s a very variable illness. Sometimes, this is a disease that presents with symptoms. People have swollen lymph nodes, swollen glands that they feel or that their doctors felt, or they have lymph nodes or other growths in the body that are causing pain or discomfort. More typically, however, this will be found accidentally doing testing for other purposes.  

You have a kidney stone, and your doctors do a CAT scan to look at the kidney stone. And they say, “Oh, what are those lymph nodes swollen about? What’s that about? We should probably figure out what’s going on there.” And then, there’s the third group which sort of present with what we all vague or constitutional symptoms, which is stuff like progressive fatigue, or maybe even fevers, or night sweats. But fatigue is a very common symptom that sometimes don’t even realize was there until sort of hindsight when they’re feeling better. And they’re like, “Wow, I didn’t know I could feel this good. I guess I’ve been tired for these last years. And I feel so much better. Thanks, doc.” 

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips answers a patient question regarding relapsed follicular lymphoma and discusses available treatment approaches for relapsed patients.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

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Dr. Tycel Phillips reviews how follicular lymphoma patients are monitored during remission, including frequency of office visits.

Monitoring Follicular Lymphoma Patients During Remission

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

We received this question from an audience member prior to the program. Angela asks, “What if I relapse after treatment? What are my options then?”

Dr. Phillips:                 

So, a lot of that, again, depends on the timing. If you relapse early, obviously whatever we gave you in the frontline we would not repeat. And again, if it’s within the 24-month period, again, that takes you on the road of POD24. Wherein patients who are fit enough, it would take you to a route where you would actually probably get a transplant. It’s consolidation to extend our true progression sabbatical.

If you relapse after 24 months, that would really depend on what you received in the frontline because some of these agents can be repeated. If we don’t repeat what you’ve had in a frontline setting – so again, if you’ve got R chemo, then a second line setting, normally what we would do now, based on published data from the augment study, is we would typically treat these patients with Rituximab and lenalidomide, which is that oral medication.

That’s typically if you did receive lenalidomide in the frontline setting and you would not want to repeat that, then we would typically give you R chemo in a second line setting. Again, in most of those situations, it would be RCP or Bendamustine and Rituximab.

Monitoring Follicular Lymphoma Patients During Remission

Monitoring Follicular Lymphoma Patients During Remission from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips reviews how follicular lymphoma patients are monitored during remission, including frequency of office visits. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

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What are the stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

If someone receives treatment and then goes into remission, how are they monitored?

Dr. Phillips:                 

So, there’s a couple of different ways you can go about it.

Historically, what we would do is we would actually sometimes get CAT scans. But we’ve sort of pulled back from that in recent years. So, as of right now, the recommendation is really just clinical observation, meaning what I call well baby visits. Meaning I will see you in clinic at least every three months for the first year after completion of therapy. We do a system assessment, we’ll do a physical exam, we’ll do labs. Unless there is really something that at the completion of therapy that I’m concerned about, we won’t typically do any imaging.

We reserve imaging until there is a concern at some point, whether you have symptoms, there’s a lab issue, or there’s some other finding that comes up that means that we have to repeat pictures. So those visits I’ll do typically every three months for the first year, spaced out that every four months for the second year, post treatment. And then every six months up until about year four. And then it’ll become a yearly visit thereafter, as long as you continue to remain well without symptoms and nothing on an exam that’s concerning.