Non-Hodgkin’s Lymphoma Archives
Non-Hodgkin’s lymphoma is a cancer that starts in cells called lymphocytes, which are part of the body’s immune system. Lymphocytes are in the lymph nodes and other lymphoid tissues (such as the spleen and bone marrow).
More resources for Non-Hodgkin Lymphoma (NHL) from Patient Empowerment Network.
How Is Relapsed or Transformed Follicular Lymphoma Treated?
How Is Relapsed or Transformed Follicular Lymphoma Treated? from Patient Empowerment Network on Vimeo.
Follicular lymphoma (FL) expert Dr. Jane Winter explains relapsed or transformed follicular lymphoma and outlines treatment approaches for these FL types.
Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.
See More from The Pro-Active Follicular Lymphoma Patient Toolkit
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What Treatment Options Are Available for Relapsed Follicular Lymphoma? |
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Transcript:
Laura Beth:
Dr. Winter, what happens if a patient’s follicular lymphoma relapses? What is the approach to treatment?
Dr. Winter:
And so, generally, it’s probably one in five patients whose disease sort of comes back and becomes somewhat problematic requiring repeated therapies where many, many patients have a very kind of indolent course that may require treatment intermittently, but tends to be very amenable to treatment. And then the other point to be made about follicular lymphoma is indeed that a fraction of patients every year will go on to what we call transform. That means their disease acquires and changes biologically or at least a clone of their disease changes and becomes a much more aggressive process similar to a newly diagnosed diffuse large B-cell lymphoma, an aggressive lymphoma.
And these transformations then require treatment as if they were an aggressive lymphoma. And they also, despite being somewhat frightening because of the sense of changing from a low-grade to a more aggressive process, in very many cases, these are well treated with standard, especially in patients who haven’t had prior therapy for follicular lymphoma, which is rituximab (Rituxan), these patients are well treated with our standard treatment for aggressive lymphoma Rituxan CHOP chemotherapy, and do very well. So, even though that sounds like a frightening occurrence, for the vast majority, it’s very treatable.
And patients go into remission and stay in remission for the most part, so it’s not as frightening as it might sound. And how many patients and when do they transform? There’s lots of confusing data. Basically, there’s some data that suggests that the majority of patients transform early in the first five years, whereas other data suggests that it’s sort of every year, patients are at risk so that the longer you have follicular lymphoma, perhaps, the greater the risk overall of this kind of change in the biology. But, as I said, for a good significant number of patients, this is relatively easily treated with standard chemotherapy.
Just another point in terms of potentially curative therapies these days, we’re afraid to use that term in follicular lymphoma because it does have this tendency to sort of keep coming back over time. So, whether any treatment is truly curative remains to be seen. Perhaps a very, very small fraction of patients might be eligible, young patients, for an allogeneic stem cell transplant from someone else. But, this is not commonly pursued these days, as well as a new therapy called CAR T-cell therapy, which is a form of immunotherapy and may indeed be curative.
But at this point, it’s really too early to make a claim of cure with that strategy. But, a very exciting new immunotherapy as well as some other new immunotherapy is something called “bite cells,” which harness our own immune system, much like the CAR-T cells do. So, lots of new things. So, these are exciting times for us as treating physicians and hematologists, but they are exciting times for patients because we have so much to offer.
An Expert’s Perspective on Emerging Follicular Lymphoma Research
An Expert’s Perspective on Emerging Follicular Lymphoma Research from Patient Empowerment Network on Vimeo.
What’s the latest on emerging follicular lymphoma research? Dr. Jane Winter shares how follicular lymphoma treatment has advanced and provides an overview of treatment options.
Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.
See More from The Pro-Active Follicular Lymphoma Patient Toolkit
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Transcript:
Laura Beth:
Dr. Winter, is there emerging follicular lymphoma research that you are excited about?
Dr. Winter:
So, first of all, I think it’s very important to underscore the fact that for a newly diagnosed patient with follicular lymphoma today, survival is measured in decades with an “S,” so, 10, 20-plus years. And that’s based on data that’s already becoming outdated such that it’s the likelihood with some of the newer treatment options is there’s never been a more exciting time, I often say, to be a hematologist because of all the exciting new tools we have to our trade.
So, lots of new treatments. But, even with the old treatments, and I mean rituximab-based treatments, the outcome is excellent. We have new treatments. We have all kinds of new treatments these days for follicular lymphoma such that it’s a veritable buffet of treatment options to choose from. Nonetheless, often times the first treatment is just either a monoclonal antibody, meaning rituximab, an anti-CD20, which is a protein or marker on the surface of the lymphoma cell. This is immunotherapy, been around now for 30 years and approved for 22 years for the treatment of follicular lymphoma as well as other B-cell lymphomas.
Other therapies that are typically used frontline include rituximab plus chemotherapy, most commonly a drug called bendamustine, which wasn’t always available, was something that was being developed in East Germany that came to the attention of the Europeans and North Americans only after German unification. And, this has become, along with Rituxan, one of the most commonly used first-line treatments for follicular lymphoma. Other options include a combination of Rituxan and an oral medication called lenalidomide (Revlimid), and this is given three weeks in a row out of every four weeks with Rituxan. Again, this anti-CD20 immunotherapy or antibody.
And, it’s a very effective but requires some monitoring of blood counts and so on, so it is perhaps not as commonly used as Rituxan and bendamustine as a first-line therapy. But, there are so many additional new options that are either approved or coming along for all of our B-cell lymphomas, and they include many new what we call “targeted agents” as well as immunotherapy including a very new therapy called CAR T-cell therapy. But, one thing I just wanted to say, in addition to the very long anticipated survival of newly diagnosed patients today, it’s really only a small fraction of patients who get into trouble with follicular lymphoma, at least in the short term.
When Is It Time to Treat Follicular Lymphoma?
When Is It Time to Treat Follicular Lymphoma? from Patient Empowerment Network on Vimeo.
What symptoms might follicular lymphoma patients experience as a trigger for treatment? Dr. Jane Winter shares insight about common symptoms that indicate treatment should begin for optimal patient care.
Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.
See More from The Pro-Active Follicular Lymphoma Patient Toolkit
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Transcript:
Laura Beth:
Dr. Winter, what are signs that it is time to treat a patient’s follicular lymphoma?
Dr. Winter:
Symptoms are the trigger, most often.
Sometimes, the trigger for treatment is a big enough mass that it’s pushing on something important, for example, the ureter, which is the tube from the kidney to the bladder. And if we have a large mass that either wraps around that ureter or just pushes on it sufficiently to block drainage, it’ll result in a decline in kidney function. So, a rising creatinine may be the signal that things are progressing and it’s time for treatment. Sometimes, the follicular lymphoma involving the lining around the lung can lead to what we call a pleural effusion, fluid in that space. It’s a potential space between the lung and the chest wall.
So, an accumulation of fluid there restricts the ability to take a deep breath, and that may be an indication for treatment, or just the overall total mass of disease is becoming such that it results in fatigue and is beginning to impair the quality of life and what we call performance status. So, those are triggers for treatment. Decline in blood counts is another. So, follicular lymphoma very commonly involves the bone marrow, and as it progresses and replaces the normal blood cells, it will result in a decline in the red cell count, the hemoglobin that carries oxygen. So, it results in tiredness or shortness of breath, or a low white count such that the numbers of infection fighting cells is compromised.
Or also at the same time, often the platelet count. And platelets are those little flecks in the blood smear that help to clot blood and prevent bleeding. And so, as they decline, we sometimes see little red spots called petechiae on the lower extremities. But, that’s a pretty uncommon sign in follicular lymphoma. Most often, it would be just a mild anemia that flags progression and bone marrow involvement. So, all of those. So, multi-disease, disease that causes symptoms, disease that causes fluid accumulation around the lung or obstruction of some important organ.
These are all the signs that it’s time to think about treatment.
How Is Follicular Lymphoma Diagnosed and How Does It Progress?
How Is Follicular Lymphoma Diagnosed and How Does It Progress? from Patient Empowerment Network on Vimeo.
Follicular lymphoma expert Dr. Jane Winter explains common symptoms, tests involved in diagnosis, and how the disease may progress over time.
Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.
See More from The Pro-Active Follicular Lymphoma Patient Toolkit
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Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients |
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Transcript:
Laura Beth:
Dr. Winter, how is follicular lymphoma typically diagnosed?
Dr. Winter:
So, most often, it’s because of a new lump or bump that a patient notes, perhaps a lump in the neck, but also increasingly these days, many individuals wind up getting CT scans. Belly pain for which they go to the emergency room or something to evaluate another diagnosis, maybe some blood in the urine related to a totally different issue. But CT scans often reveal, enlarged lymph nodes or lymph nodes that are borderline and of concern.
And this will lead to investigation, ultimately, a biopsy, and a diagnosis of follicular lymphoma.
Laura Beth:
How does follicular lymphoma typically progress?
Dr. Winter:
So, to start with, most commonly, patients have low burden disease these days, but some adverse diagnosis will have very extensive disease, a big mass in the abdomen, disease in the chest, so, highly variable. For patients who begin with low burden disease, small lymph nodes that are not bothersome, we generally observe these patients.
And over time, these lymph nodes may begin to grow, and sometimes slowly, sometimes more rapidly to the point where they cause symptoms or are of concern because they’re cosmetically unattractive. There are occasional times where it’s a lump in the neck that just results in too many inquiries from others. So, that’s when we start thinking about maybe it’s time to start some treatment. So, progression, enlargement, sometimes it’ll be the beginning of symptoms. So, most patients with follicular lymphoma, at least in North America, don’t generally have symptoms at presentation, but B symptoms.
So, fevers, drenching night sweats, and by that, I mean sweats at night that lead to changing your T-shirt, changing the sheets or the nightgown, not the typical middle-aged woman with a hot flash. But, by drenching night sweats, we mean drenching. Unintentional weight loss. So, these are some of the symptoms that one can see, we call them B symptoms, we can see in patients with follicular lymphoma and other lymphomas as well that may signal progression.
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.
Lymphoma Rashes: Symptoms and Treatments
Editor’s Note: This resource, Lymphoma Rashes: Symptoms and Treatments, was originally published by MyHealthTeam.
When most people think of lymphoma symptoms, a rash isn’t usually something that comes to mind. For some types of lymphoma rashes aren’t an issue, but rashes are a symptom in several different lymphomas.
Cutaneous T-cell and B-cell lymphomas often manifest as a rash in their early stages. “When I first was diagnosed with cancer, I had a rash all over my abdominal area,” one MyLymphomaTeam member said. These conditions are a subset of non-Hodgkin lymphoma and are commonly slow growing. Many people with cutaneous lymphomas go years without a correct diagnosis. Unlike many other types of lymphomas, the lymph nodes are rarely affected until late into the condition and are not raised or swollen. Cutaneous T-cell lymphomas make up around 75 percent to 80 percent of all cutaneous lymphomas.
What Does a Lymphoma Rash Feel Like?
Lymphoma rashes can be localized or occur all over the body (also referred to as erythroderma). A cutaneous T-cell lymphoma called mycosis fungoides is responsible for around half of all skin lymphomas. In its early stages, mycosis fungoides is sometimes mistaken for psoriasis or eczema. “I was itching very bad from my neck to my feet. I went to nine different doctors [and] they all misdiagnosed me,” one member reported.
Lymphoma rashes are also called lesions. They are divided into three categories: patches, plaques, and tumors. Patches are flat, smooth, or scaly to the touch and look like a typical rash. Plaques are harder, thicker, and scaly to the touch. Tumors are raised bumps or nodules.
Sézary syndrome (Dermnet NZ)
Erythrodermic (full-body) rashes are sometimes caused by Sezary syndrome, which makes up 15 percent of cutaneous lymphomas. The rash can feel hot, sore, and itchy. It is usually much more aggressive than mycosis fungoides. Cancerous lymphocytes are present in the blood in Sezary syndrome, but not with mycosis fungoides.
How Does a Rash Affect People With Lymphoma?
Members of MyLymphomaTeam described a variety of ways rashes have affected their lives. “This rash and itching is getting so frustrating. I can’t sleep well,” one MyLymphomaTeam member said. Another mentioned the difficulty a family member had with a rash. “I am always searching for information and ways to ease his pain and itching.” A third member who was reportedly in remission mentioned frustration with a possible recurrence. “I’m so irritated; I have new spots and went to a dermatologist and they tried to tell me that it’s eczema.”
What Causes a Lymphoma Rash?
Cutaneous lymphoma forms in the small number of lymphocytes that are present in the skin. A rash occurs when those lymphocytes mutate, become cancer cells, and grow uncontrollably. It is not considered a skin cancer because the initial source of cancer cells come from the lymphocytes instead of the skin cells themselves.
Skin Treatments for Lymphoma Rashes
Treatment options depend on what type of lymphoma is causing the rash. Most types of cutaneous lymphoma are slow progressing, and some cases never progress past the skin. Because of this, the American Cancer Society’s recommended treatments first target the skin. There are several different types of skin-directed therapies.
Topical Corticosteroids
Topical corticosteroids are the first line of treatment, like with many other skin conditions. The anti-inflammatory agents in them also kill lymphoma cells. They can be creams or ointments applied directly to the skin or injections given directly into affected areas. In addition to treating the rash, topical corticosteroids can decrease itching. Side effects can include skin thinning and hair growth. When used over a long period of time, they can affect the adrenal glands.
Topical Chemotherapy
Topical chemotherapy agents are usually given along with corticosteroids. Mechlorethamine is the most commonly used, and it works by blocking DNA replication in cancer cells. It is applied as a gel to the affected area. When used as a topical solution, it is not known to enter the blood. About 10 percent of those who are treated with Mechlorethamine develop contact dermatitis, a localized allergic reaction.
Another drug, Carmustine, is occasionally used as a supplement to Mechlorethamine. Unlike Mechlorethamine, it can be absorbed into the blood. Monitoring by a dermatologist is needed at higher doses.
Topical Immunotherapy
One commonly used drug is Imiquimod. When it is applied to the skin, it has been shown to clear cutaneous lymphoma lesions.
Retinoids
Retinoids are synthetic vitamin A medications that can cause certain types of cells to die. Retinoids are usually used when topical corticosteroids and chemotherapy agents are not effective. Since they can cause birth defects, women using the drug should not become pregnant.
Phototherapy
Phototherapy uses two types of UV light (A and B) to destroy cancer cells. If UVA light is used in treatment, Psoralen drugs are used in conjunction with it. Psoralens make the skin more sensitive to UV light. UVB does not require any drug administration before treatment, but it is used on thinner lesions only. “I am getting UVB light therapy every Wednesday, but every time I get it, more rashes come out,” a MyLymphomaTeam member said.
Radiation Therapy
Two different types of radiation therapy are commonly used. Total skin electron beam (TSEB) therapy penetrates only a few layers of skin and does not have the severe effects of more invasive radiotherapy. Brachytherapy places radioactive isotopes under the skin for a period of time.
Systemic Treatments for Lymphoma Rashes
If Sezary syndrome is present, skin-based treatments are not used because the condition also affects the blood. Instead, systemic treatments target the whole body. Many of these treatments are similar to skin-based ones.
Interferon
Interferons are cytokine compounds normally produced by cells as a response to disease. Interferons are typically injected three times a week for three to six months.
Retinoids
These are taken as an oral medication and not applied to the skin, but they work the same way as topical ones.
Histone Deacetylase (HDAC) Inhibitors
Histone deacetylase inhibitors work by targeting cells’ DNA in a way that allows cancer cells to die. The most commonly used drugs are vorinostat (Zolinza) and romidepsin (Istodax). Both are given intravenously. One MyLymphomaTeam member described a family member’s treatment with romidepsin, “She went for her initial treatment last Thursday and it seems to be working. Her itching has subsided significantly. Very slight side effects.”
Extracorporeal Photopheresis
Extracorporeal photopheresis takes white blood cells out of a sample of a person’s blood, exposes them to UV light, and puts them back into the bloodstream. The treated cells then act against the cancerous ones.
Antibodies
The most commonly used biologics to treat cutaneous T-cell lymphoma are monoclonal antibodies, which are developed to recognize specific types of cancer cells. Brentuximab vedotin (Adcetris) has been used to treat advanced cutaneous T-cell lymphoma. It works by targeting an antigen found on cancerous T cells.
Chemotherapy
While often used in combination to treat other cancers, chemotherapy agents are often used as “single agents” — one at a time — to treat cutaneous T-cell lymphoma.
Stem Cell Transplant
The only known cure for cutaneous lymphoma is a bone marrow transplant, also known as a stem cell transplant. Since this is a risky procedure, it is typically only done when the condition is very advanced or has come back repeatedly after other treatments.
MyLymphomaTeam Members’ Tips for a Lymphoma Rash
MyLymphomaTeam members have shared a variety of ways of dealing with rash. “You need treatment and creams to deal with the overwhelming itching,” one advised.
Specific topical treatments were mentioned by others:
- “Use a good skin cream, a steroid cream of 0.05 percent.”
- “I use a script from my dermatologist: 0.05 steroid cream, and every day I also use a good skin cream.”
- “Using aloe vera now helps with inflammation and itching.”
- “Try cannabis oil or cream.”
- “My doctors at UC Davis in Sacramento and University of California, Sacramento, gave me a prescription of triamcinolone acetonide ointment USP, 0.1 percent. … This medicine took care of the rash.”
Nutritional measures helped ease the rash symptoms for one member. “I juice at times. (I mix carrots, celery, kale/spinach, apple, orange and lemon juices, mixed with berries like blueberries, raspberries, and strawberries; and add some ginger and turmeric). I walk daily (get out in the fresh air) and use an elliptical and weight machines.”
Find Your Team
You are not alone. When you join MyLymphomaTeam, you gain a support network of more than 12,000 people who understand what you’re going through.
Have any questions about rash and lymphoma? Do you have any tips for dealing with a rash? Comment below or start a conversation on MyLymphomaTeam.
Follicular Lymphoma Research and Treatment Updates
Follicular Lymphoma Research and Treatment Updates from Patient Empowerment Network on Vimeo.
Dr. Matthew Matasar shares follicular lymphoma treatment and research highlights from the 2022 American Society of Clinical Oncology (ASCO) meeting.
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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Transcript:
Katherine Banwell:
Cancer researchers recently came together to share findings at the annual American Society of Clinical Oncology meeting also known as ASCO. Are there highlights from the meeting that follicular patients need to know about?
Dr. Matasar:
The pace of innovation in follicular lymphoma is absolutely breathtaking. And the treatment options that are being explored and coming available to us now are really extraordinary. And they’re extraordinary because they offer this unparalleled possibility of very highly effective and less toxic, fewer less long-term and short-term side effects than prior options may have afforded us.
This is particularly true in two general areas of investigation. The first is what we call immunotherapy or treatments that are designed to leverage your own immune system’s ability to kill cancer cells. And the second is what we would call targeted therapies, treatments that are designed to attack a specific enzyme, or protein, or pathway that is relied upon by follicular lymphoma cells to survive and to grow.
Immunotherapy for follicular lymphoma is perhaps the most exciting of everything right now. And there’s a class of agents that are called bispecific antibodies. These are antibodies or proteins that have two specific regions on them, one that binds onto the surface of the follicular lymphoma cell and one that serves as sort of an activator or tractor beam for your own body’s healthy T cells. So, it attaches to the B cell. It drags over and stimulates T cells, and says, “Get them, guys.” And it causes your own body’s T cells to recognize, attack, and kill lymphoma cells for you.
There’s a number of these agents that are in active clinical development. And we say updates at ASCO this year showing that these agents are very effective at treating follicular lymphoma even when prior chemotherapy agents have been unsuccessful at achieving durable remissions with really very little toxicity particularly after the first month of treatment is under your belt.
Katherine Banwell:
What are you excited about when it comes to follicular lymphoma research?
Dr. Matasar:
What I’m excited about is the overall pace of innovation. We have more drugs that are approved in the treatment of this illness in the last five years than in the 20 years that preceded it. And we have more options that we expect to become available over these next three years than were approved in the last five, immunotherapy, targeted therapy, therapies that modified the genetic signatures of the cells, treatments that used living cells and genetically modified those cells to attack your lymphoma, combinations of immunotherapies and targeted therapies.
The innovation is really extraordinary, and it gives me tremendous hope that over these upcoming years, I’m going to have even more choices to offer my patients with follicular lymphoma, ways to improve their quality of life, the length of their life, and to find better ways to manage this illness.
Katherine Banwell:
That sounds so promising.
Why Should Follicular Lymphoma Patients Seek a Second Opinion?
Why Should Follicular Lymphoma Patients Seek a Second Opinion? from Patient Empowerment Network on Vimeo.
Lymphoma expert Dr. Matthew Matasar encourages patients to take an active role in their care and explains why they should feel comfortable seeking a second opinion.
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 is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or a second opinion? Any advice for self-advocacy?
Dr. Matasar:
I would say there is this. Any doctor who is taking care of you and doesn’t want you to have the best information and the best options is not a very good doctor. This is never about the doctor. It’s not about me. It’s about you. And if a doctor’s ego is getting in the way of a patient getting the best care, the best options, the most modern and up-to-date available information around their illness and around how best to take care of it, that doctor better check themselves.
Similarly, the patient should understand that it’s about you. It’s not about me or your other doctors, or anything. It’s about you getting what you deserve, which is the clearest insight and the most appropriate treatment options available. And you should have no reservations in seeking that out, and honestly most oncologists are happy to have you get a second opinion, because they’ll feel more supported in your care. It’s stressful to be an oncologist sometimes too. And for you to get a second opinion from an expert and the expert says, “You know what? Yeah, your oncologist is spot-on.”
That can be very validating and reassuring. And then, that expert oncologist is a resource to your local oncologist, and they can work together in your care. Everybody works better as a team. It’s just as true for oncologists as for anybody.
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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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.”
Why Is It Important for Follicular Lymphoma Patients to Be Empowered?
Why Is It Important for Follicular Lymphoma Patients to Be Empowered? from Patient Empowerment Network on Vimeo.
Lymphoma expert Dr. Matthew Matasar explains why it is important for patients with follicular lymphoma to feel empowered in their care and shares how he empowers his own 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.
See More from The Pro-Active Follicular Lymphoma Patient Toolkit
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Transcript:
Katherine Banwell:
How do you empower patients?
Dr. Matasar:
For me, empowering patients isn’t something that you do. It’s just inherent to the practice of medicine and taking care of people with lymphoma. There’s lots of ways that you can think about this, but one of my standard lines when I’m talking with patients is that I’ll say that this is their climb.
They’re the mountain climber, and I’m just the sherpa. I’m the one lugging the bags and trying to help point out the paths. But this is their climb, and it’s about them, and it’s never about me.
Katherine Banwell:
Why is it important to empower patients?
Dr. Matasar:
It’s inherent. It’s obvious at some level that you have to empower patients because the care of patients, the care of people, is about people. It’s not about the doctor, or the nurse, or the clinical trial, or the drug, or pharma, or the hospital. It’s about you. I can only be as good a doctor as I am at listening to you or to my patient. And this is extremely clear with diseases like follicular lymphoma, which have such tremendous variety in terms of how it affects people, variety in terms of the options that I have to offer as treatments. It’s an extremely individualized and personalized situation.
So, if it’s not about you, and your goals, and your preferences, and your priorities, then I can’t do my job right.
Katherine Banwell:
Right. You need as much information as possible from the patient.
Dr. Matasar:
It’s all about the patient. And the clearer that I understand my patient’s personality, priorities, preferences, family situation, all of that stuff, the better job I’ll be able to do at helping them pick the right path forward.
A Patient’s Perspective | Participating in a Clinical Trial
A Patient’s Perspective | Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.
Colorectal cancer survivor Cindi Terwoord recounts her clinical trial experience and explains why she believes patients should consider trial participation.
Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.
Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.
See More from Clinical Trials 101
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Transcript:
Katherine Banwell:
Cindi, you were diagnosed with stage IV colorectal cancer, and decided to participate in a clinic trial. Can you tell us about what it was like when you were diagnosed?
Cindi Terwoord:
Yeah. That was in September of 2019, and I had had some problems; bloody diarrhea one evening, and then the next morning the same thing. So, I called my husband at work, I said, “Things aren’t looking right. I think I’d better go to the emergency room.”
And so, we went there, they took blood work – so I think they knew something was going on – and said, “We’re going to keep you for observation.” So, then I knew it must’ve been something bad. And so, two days later, then I had a colonoscopy, and that’s when they found the tumor, and so that was the beginning of my journey.
Katherine Banwell:
Mm-hmm. Had you had a colonoscopy before, or was that your first one?
Cindi Terwoord:
No, I had screenings, I would get screenings. I had heard a lot of bad things about colonoscopies, and complications and that, so I was always very leery of doing that. Shame on me. I go for my other screenings, but I didn’t like to do that one. I have those down pat now, I’m very good at those.
Katherine Banwell:
Yeah, I’m sure you do. So, Cindi, what helped guide your decision to join a clinical trial?
Cindi Terwoord:
Well, I have a friend – it was very interesting.
He was probably one of the first people we told, because he had all sorts of cancer, and he was, I believe, one of the first patients in the nation to take part in this trial. It’s nivolumab (Opdivo), and he’s been on it for about seven years. And he had had various cancers would crop up, but it was keeping him alive.
And so, frankly, I didn’t know I was going to have the option of a trial, but he told me run straight to Cleveland Clinic, it’s one of the best hospitals. So, I took his advice. And the first day the doctor walked in, and then all these people walked in, and I’m like, “Why do I have so many people in here?” Not just a doctor and a nurse. There was like a whole – this is interesting.
And so, then they said, “Well, we have something to offer you. And we have this immunotherapy trial, and you would be one of the first patients to try this.”
Now, when they said first patient, I’m not quite sure if they meant the first colon cancer patient, I’m not sure. But they told me the name of it, and I said, “I’m in. I’m in.” Because I knew my friend had survived all these years, and I thought, “Well, I’ve gotten the worst diagnosis I can have, what do I have to lose?” So, I said, “I’m on board, I’m on board.”
Katherine Banwell:
Mm-hmm. Did you have any hesitations?
Cindi Terwoord:
Nope. No, I’m an optimistic person, and what they assured me was that I could drop out at any time, which I liked that option.
Because I go, “Well, if I’m not feeling well, and it’s not working, I’ll get out.” So, I liked that part of it. I also liked, as Dr. Funchain had said, you go in for more visits. And I like being closely monitored, I felt that was very good.
I’ve always kept very good track of my health. I get my records, I get my office notes from my doctor. I’m one of those people. I probably know the results of blood tests before the doctor does because I’m looking them up. So, I felt very confident in their care. They watched me like a hawk. I kept a diary because they were asking me so many questions.
Katherine Banwell:
Oh, good for you.
Cindi Terwoord:
I’m a transcriptionist, so I just typed out all my notes, and I’d hand it to them.
Katherine Banwell:
That’s a great idea.
Cindi Terwoord:
Here’s how I’m feeling, here’s…And I was very lucky I didn’t have many side effects.
Katherine Banwell:
In your conversations with your doctor, did you weigh the pros and cons about joining a trial? Or had you already made up your mind that yes, indeed, you were going for it?
Cindi Terwoord:
Yeah, I already said, “I’m in, I’m in.” Like I said, it had kept my friend alive for these many years, he’s still on it, and I had no hesitation whatsoever.
I wish more people – I wanted to get out there and talk to every patient in the waiting room and say, “Do it, do it.”
I mean, you can’t start chemotherapy then get in the trial. And if I ever hear of someone that has cancer, I ask them, “Well, were you given the option to get into a trial?” Well, and then some of them had started the chemo before they even thought of that.
Katherine Banwell:
Mm-hmm. So, how are you doing now, Cindi? How are you feeling?
Cindi Terwoord:
Good, good, I’m doing fantastic, thank goodness, and staying healthy. I’m big into herbal supplements, always was, so I keep those up, and I’m exercising. I’m pretty much back to normal –
Katherine Banwell:
Cindi, what advice do you have for patients who may be considering participating in a trial?
Cindi Terwoord:
Do it. Like I said, I don’t see any downside to it. You want to get better as quickly as possible, and this could help accelerate your recovery. And everything Dr. Funchain mentioned, as far as – I really never brought up any questions about whether it would be covered.
And then somewhere along the line, one of the research people said, “Well, anything the trial research group needs done – like the blood draws – that’s not charged to your insurance.” So, that was nice, that was very encouraging, because I think everybody’s afraid your insurance is going to drop you or something.
And then the first day I was in there for treatment, a social worker came in, and they talked to you. “Do you need financial help? We also have art therapy, music therapy,” so that was very helpful. I mean, she came in and said, “I’m a social worker,” and I’m like, “Oh, okay. I didn’t know somebody was coming in here to talk to me.”
But that was all very helpful, and I did get free parking for a few weeks. I mean, sometimes I’d have to remind them. I’d say, “It’s costing me more to park than to get treated.” But, yeah, like I said, I’m a big advocate for it, because you hear so many positive outcomes from immunotherapy trials, and boy, I’d say if you’re a candidate, do it.
Katherine Banwell:
Dr. Funchain, do you have any final thoughts that you’d like to leave the audience with?
Dr. Pauline Funchain:
First, Cindi, I have to say thank you. I say thank you to every clinical trial participant, everybody who participates in the science. Because honestly, whether you give blood, or you try a new drug, I think people don’t understand how many other lives they touch when they do that.
It’s really incredible. Coming into clinic day in and day out, we get to see – I mean, really, even within a year or two years, there are people that we’ve seen on clinical trial that we’re now treating normally, standardly, insurance is paying for it, it’s all standard of care. And those are even the people we can see, and there are so many people we can’t see in other centers all over the world, and people who will go on after us, right?
So, it’s an amazing – I wouldn’t even consider most of the time that it’s a personal sacrifice. There are a couple more visits and things like that, but it is an incredible gift that people do, in terms of getting trials. And then for some of those trials, people have some amazing results.
And so, just the opportunity to have patients get an outcome that wouldn’t have existed without that trial, like Cindi, is incredible, incredible.
What Are the Risks and Benefits of Joining a Clinical Trial?
What Are the Risks and Benefits of Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.
Why should a cancer patient consider a clinical trial? Dr. Pauline Funchain of the Cleveland Clinic explains the advantages of clinical trial participation.
Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.
See More from Clinical Trials 101
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Transcript:
Katherine Banwell:
Why would a cancer patient consider participating in a clinical trial? What are the benefits?
Dr. Pauline Funchain:
So, I mean, the number one benefit, I think, for everyone, including the cancer patient, is really clinical trials help us help the patient, and help us help future patients, really.
We learn more about what good practices are in the future, what better drugs there are for us, what better regimens there are for us, by doing these trials. And ideally, everyone would participate in a trial, but it’s a very personal decision, so we weigh all the risks and benefits. I think that is the main reason.
I think a couple of other good reasons to consider a trial would be the chance to see a drug that a person might not otherwise have access to. So, a lot of the drugs in clinical trials are brand new, or the way they’re sequenced are brand new. And so, this is a chance to be able to have a body, or a cancer, see something else that wouldn’t otherwise be available.
And I think the last thing – and this is sort of the thing we don’t talk about as much – but really, because clinical trials are designed to be as safe as possible, and because they are new procedures, there’s a lot of safety protocols that are involved with them, which means a lot of eyes are on somebody going through a clinical trial.
Which actually to me means a little bit sort of more love and care from a lot more people. It’s not that the standard of care – there’s plenty of love and care and plenty of people, but this doubles or triples the amount of eyes on a person going through a trial.
Katherine Banwell:
Yeah. When it comes to having a conversation with their doctor, how can a patient best weigh the risks and benefits to determine whether a trial is right for them?
Dr. Pauline Funchain:
Right. So, I think that’s a very personal decision, and that’s something that a person with cancer would be talking to their physician about very carefully to really understand what the risks are for them, what the benefits are for them. Because for everybody, risks and benefits are totally different. So, I think it’s really important to sort of understand the general concept. It’s a new drug, we don’t always know whether it will or will not work. And there tend to be more visits, just because people are under more surveillance in a trial.
So, sort of getting all the subtleties of what those risks and benefits are, I think, are really important.
Katherine Banwell:
Mm-hmm. What are some key questions that patients should ask?
Dr. Pauline Funchain:
Well, I think the first question that any patient should ask is, “Is there a trial for me?” I think that every patient needs to know is that an option. It isn’t an option for everyone. And if it is, I think it’s – everybody wants that Plan A, B, and C, right? You want to know what your Plan A, B, and C are. If one of them includes a trial, and what the order might be for the particular person, in terms of whether a trial is Plan A, B, or C.
