Non-Hodgkin's Lymphoma Archives - Page 3 of 11

Lymphoma Rashes: Symptoms and Treatments

October 24, 2022/in MyHealthTeams, Non-Hodgkin's Lymphoma /by Kara Rayburn

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

October 7, 2022/in FL Toolkit, FL Treatment and Clinical Trials, FL Treatment TK, FL Video TC, Follicular Lymphoma, Follicular Lymphoma Programs, NHL Treatments and Clinical Trials, NHL Videos TC, Non-Hodgkin's Lymphoma /by Kara Rayburn

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.

Related Programs:

What Is Follicular Lymphoma? What Are the Symptoms?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

Emerging Follicular Lymphoma Treatment Approaches

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?

October 7, 2022/in FL Newly Diagnosed, FL Self-Advocacy TK, FL Toolkit, FL Treatment and Clinical Trials, FL Video ND, FL Video TC, FL Video WPS, FL Whole Patient Support, Follicular Lymphoma, Follicular Lymphoma Programs, NHL Treatments and Clinical Trials, NHL Videos TC, NHL Videos WPS, NHL Whole Patient Support /by Kara Rayburn

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.

Related Programs:

Why Is It Important for Follicular Lymphoma Patients to Be Empowered?

Follicular Lymphoma Research and Treatment Updates

What Is the Patient’s Role in Follicular Lymphoma Treatment Decisions?

What Is the Patient Role in Follicular Lymphoma Treatment Decisions?

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

October 7, 2022/in FL Basics TK, FL Toolkit, FL Video WN, FL What's Next, Follicular Lymphoma, Follicular Lymphoma Programs, NHL Videos WN, NHL Whats Next, Non-Hodgkin's Lymphoma /by Kara Rayburn

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.

Related Programs:

Why Should Follicular Lymphoma Patients Seek a Second Opinion?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

Follicular Lymphoma Research and Treatment Updates

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?

October 7, 2022/in FL Basics TK, FL Toolkit, FL Video WN, FL What's Next, Follicular Lymphoma, Follicular Lymphoma Programs, NHL Videos WN, NHL Whats Next, Non-Hodgkin's Lymphoma /by Kara Rayburn

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.

Related Programs:

Three Key Steps for Newly Diagnosed Follicular Lymphoma Patients

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

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.”

Why Is It Important for Follicular Lymphoma Patients to Be Empowered?

October 7, 2022/in FL Newly Diagnosed, FL Self-Advocacy TK, FL Toolkit, FL Treatment and Clinical Trials, FL Video ND, FL Video TC, FL Video WPS, FL Whole Patient Support, Follicular Lymphoma, Follicular Lymphoma Programs, NHL Treatments and Clinical Trials, NHL Videos TC, NHL Videos WPS, NHL Whole Patient Support /by Kara Rayburn

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.

Related Programs:

Why Should Follicular Lymphoma Patients Seek a Second Opinion?

What Is the Patient Role in Follicular Lymphoma Treatment Decisions?

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

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

Related Resources:

A Patient Shares Her Clinical Trial Experience

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?

Are Clinical Trials a Logistical Nightmare?

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

Related Resources:

You’ve Chosen to Participate In a Clinical Trial: What Are Next Steps?

Understanding Common Clinical Trial Terminology

How to Find A Clinical Trial That’s Right for You

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.

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Is the COVID Vaccine Safe and Effective for Waldenström Macroglobulinemia (WM) Patients?

June 23, 2022/in NHL Treatments and Clinical Trials, NHL Videos TC, Non-Hodgkin's Lymphoma, Waldenstrom, Waldenstrom Treatment and Clinical Trials, Waldenstrom Video TC, Waldenstrom's Basics TK, Waldenstrom's Programs, Waldenstrom's Toolkit /by Kara Rayburn

Is the COVID Vaccine Safe and Effective for Waldenström Macroglobulinemia (WM) Patients? from Patient Empowerment Network on Vimeo.

Dr. Shayna Sarosiek of Dana-Farber Cancer Institute discusses the safety and efficacy of the COVID-19 vaccine for Waldenström macroglobulinemia (WM) patients.

Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.

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Exciting Advances in Waldenström Macroglobulinemia (WM) Treatment

Transcript:

Katherine:

This is a question on many people’s minds these days. Is the COVID vaccine safe and effective for people with Waldenstrom’s macroglobulinemia?

Dr. Sarosiek:

So, in general, we highly recommend the COVID vaccines for our patients with Waldenstrom’s. We think it’s very helpful; it’s usually very safe for patients. But the one caveat is that it’s sometimes not as effective for patients with Waldenstrom’s as it is for patients who are otherwise healthy. There are a lot of data coming out that the antibodies or the part of the immune system is not responding as well in patients with Waldenstrom’s as in other healthy patients.

And so, Waldenstrom’s patients often need to get more doses of vaccines to get the same effectiveness as healthy patients might. And so, it’s really important to follow up with your provider to really get a good idea of how many doses you can have or should have. And the other really important part of that is making sure that those are time appropriately with your therapy. Because we know that the effectiveness of the vaccine is really related any recent therapies that patients might have had.

So, making sure that’s an open conversation with your physician about if it’s the right time to get your next vaccine. And if its’ not the time for the vaccine or if the vaccine is not going to be effective for you, there are potential other options such as Evusheld, which is an antibody against COVID that can offer similar efficacy as a vaccine might in terms of giving you antibodies if your own body can’t make them.

Katherine:

And when you refer to COVID vaccine doses, are you including the boosters? That people should be getting?

Dr. Sarosiek:

Yeah. So, initially patients should have a core series of vaccines essentially. So, in most people – in healthy people – that’s generally two doses are considered the core before you start boosters. In patients with Waldenstrom’s or patients who are immunosuppressed, that initial core series is three vaccines. And then the ones after that would be considered the booster vaccines.

Exciting Advances in Waldenström Macroglobulinemia (WM) Treatment

June 23, 2022/in NHL Treatments and Clinical Trials, NHL Videos TC, Non-Hodgkin's Lymphoma, Waldenstrom, Waldenstrom Treatment and Clinical Trials, Waldenstrom Video TC, Waldenstrom's Programs, Waldenstrom's Toolkit, Waldenstrom's Treatment TK /by Kara Rayburn

Exciting Advances in Waldenström Macroglobulinemia (WM) Treatment from Patient Empowerment Network on Vimeo.

What new therapies are on the horizon for patients with Waldenström macroglobulinemia (WM)? Dr. Shayna Sarosiek from Dana-Farber Cancer Institute reviews promising developments in WM treatment, including immunotherapy and BTK inhibitors.

Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.

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Transcript:

Katherine:

What are you excited about when it comes to Waldenstrom’s research?

Dr. Sarosiek:

So, there a couple of things that I find really exciting right now. One thing in particular is currently for treatment for Waldenstrom’s, we often use BTK inhibitors. So, the group of medications that includes zanubrutinib (Brukinsa), ibrutinib (Imbruvica), acalabrutinib (Calquence). And that class of medications has really revolutionized treatment for Waldenstrom’s. But sometimes patients become resistant to those medications. And there’s a new group in that same class of what’s called BTK inhibitors.

And those are non-covalent BTK inhibitors. And those drugs actually work often for patients who progress on initial therapy with ibrutinib or zanubrutinib. So that really, I think is game changing. There are some early Non-Covalent BTK inhibitors that are in trials. And I really think it’s going to lead to use of those medications very commonly in the future for Waldenstrom’s. So, that I think is exciting to have a next oral therapy to go to after progression on the current therapies. I’m also excited about new combinations that are being tried in Waldenstrom’s.

So, using combinations of different oral therapies together that would offer deep responses and also offer a time-limited therapy. Because right now many of our treatments are given indefinitely. And so, offering a limited therapy. So, I think that, and there are many other things I could go on for a long time about this. But there are many things that I think are really exciting and we’re going to be changing the field in the coming years.

Katherine:

Dr. Sarosiek, what is immunotherapy? Could you define that and also, how does it work to treat Waldenstrom’s?

Dr. Sarosiek:

So, immunotherapy includes many different types of medications. But these are all medications that either use the patient’s immune system or use something from the immune system, like an antibody to help fight off a cancer. And this plays a huge role currently and I think it will continue to in the future. So, probably the most common immunotherapy that patients are familiar with, with Waldenstrom’s now is rituximab (Rituxan). So, that’s a monoclonal antibody.

And that’s used in many combinations in Waldenstrom’s and is a very important therapy currently. And that antibody is essentially just goes into where the cancer cells are located and attacks that type of cell.

But the other immunotherapies that are up and coming – which I think are important for patients to know about – one is CAR-T cell therapy. So, a lot of patients ask me about that. and that’s essentially, a T cell is part of the immune system that every patient has. And what CAR T-cell therapies do is patients can collect from their bloodstream – the physicians can collect T cells and then they modify those T-cells in a way so that they’ll recognized the cancer and attack the cancer.

And so then, those T cells are given back to the patient and then that T cell can go and work with the patient’s immune system to destroy the cancer. And that’s been very successful in a lot of other cancers and is being used in Waldenstrom’s now. And I think we’re going to be learning a lot about that and it’s going to be an important part of the future with immunotherapy involved in Waldenstrom’s. Another therapy similar is something called BiTE therapies. So, Bispecific T-cell engagers.

So, that’s essentially two antibodies together. One antibody kind of pulls in the cancer cell and one antibody pulls in the immune system. So, when that treatment is given to patients it kind of brings the immune system close to the cancer cells. So, your own immune system can help fight off the cancer. So, those are just kind of two of the newer immunotherapies that are up and coming that I think will play an important role in the future in this disease.

Katherine:

Who is this treatment right for?

Dr. Sarosiek:

Immunotherapies in general currently we’re using them – currently immunotherapies are being used in patients who have had a relapsed disease. So, they have already had current available therapies, like BTK inhibitors or rituximab. And there are clinical trials that can use CAR-T cell therapy. And there are up and coming trials with BITE therapy. So, right now it’s being used in their relapse setting. But as we learn more about it, it’s possible those we moved earlier on to patients who are earlier in their disease course.

Katherine:

What kind of side effects should patients be aware of?

Dr. Sarosiek:

So, the side effects can vary depending on what the therapy is. So, patients who are getting rituximab, the currently available immunotherapy, patients can have infusion reactions. So, as your body is kind of getting used to that monoclonal antibody coming in, you can have a reaction. And in that case, we have to stop the infusion, wait for the side effects to settle down, and then restart.

Katherine:

What type of side effects would they be?

Dr. Sarosiek:

So, side effects from rituximab infusions can really vary. In some patients it can be similar to an allergic reaction. So, let’s say itchy throat or a rash or hives. Sometimes it can be pain in the chest or the back or trouble breathing. So, they can really vary. But most of the time, those can – when the infusion is stopped, we can give patients medications like Benadryl or Tylenol to help with symptoms. And then we can restart the Rituximab at a lower rate. And that lower rate allows the patient’s body to kind of get used to the medication and continue on the treatment. So that’s generally the things we watch for with Rituximab.

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

June 23, 2022/in NHL Treatments and Clinical Trials, NHL Videos TC, Non-Hodgkin's Lymphoma, Waldenstrom, Waldenstrom Treatment and Clinical Trials, Waldenstrom Video TC, Waldenstrom's Programs, Waldenstrom's Toolkit, Waldenstrom's Treatment TK /by Kara Rayburn

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential from Patient Empowerment Network on Vimeo.

Waldenström macroglobulinemia (WM) is a rare slow-moving disease, so immediate treatment isn’t always necessary. WM expert Dr. Shayna Sarosiek discusses the “watch and wait” period and what criteria may indicate a patient is ready for therapy.

Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.

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Transcript:

Katherine:

I understand that many people diagnosed with Waldenstrom’s may not be treated right away. Why is that?

Dr. Sarosiek:

Yeah, so a lot of patients – actually, the majority of patients don’t need treatment right away for Waldenstrom’s. And even some patients, about 20 percent to 30 percent of patients a decade later still don’t need therapy. Because, as I mentioned, it’s really such a slow-moving disease that often patients will have no symptoms or very few symptoms for many years. And if that’s the case, we really don’t like to introduce treatments earlier than we need to.

One, because you might introduce a therapy that adds toxicity or side effects that are making the patient feel worse than they currently feel. Two, the other reason we don’t want to treat too often if we don’t need to, is because it’s possible the Waldenstrom’s might become resistant to therapies and then when we truly needed something later, the disease might become resistant to things we used earlier.

The other reason is, we don’t have any data that shows us that treating early improves survival. We know that patients with Waldenstrom’s have an excellent survival. And that’s only when treating when we need to. So, we don’t have any data that tells us we need to treat early. And so, really, the focus of Waldenstrom’s therapies is just to make sure that our patients maintain a good quality of life with their disease under good control. And we can do that in a lot of cases by not offering therapy early and just doing it when we start to see signs that there is something that needs to be addressed.

Katherine:

Many of us have heard this term “watch and wait.” What does that mean exactly?

Dr. Sarosiek:

So, watch and wait generally just refers to a plan to continue to monitor the patient. Often every three months or every four months in clinic, where we might just examine the patient to check for lymph nodes or an enlarged spleen. We ask about symptoms that might perk our ears up or make us think about progression of the disease. And we also check bloodwork.

That can tell us what’s happening with the Waldenstrom’s. So, really, the exam, talking with the patient, getting labs every few months is a good way for us to keep track of what’s happening with the disease. So, we’re watching closely, but we’re waiting and holding off on therapy until it’s needed.

Katherine:

Yeah. How do you know when it’s time to begin treatment?

Dr. Sarosiek:

Great question. So, we have criteria that were designed. That physicians internationally follow to tell us when patients need treatment. Of course, those are just guidelines, so it’s often based on the guidelines and also each individual patient. But, for example, one of the main reasons why patients might require therapy is if a patient has anemia.

So, we measure that with the hemoglobin. If the hemoglobin’s less than 10, and the patient has symptoms of anemia, then in that case we might need to offer therapy. Another common reason for therapy being initiated might be hyperviscosities. So, if the blood is getting thick, as Waldenstrom’s progresses and the IgM level is high, then in that case blood flow can’t happen appropriately. And so, in that case, we might need treatment.

Another side effect that patients with Waldenstrom’s can have is neuropathy. And so, that’s numbness, tingling, burning, loss of sensation. Usually starting in the toes and working its way up the feet and legs. If that’s progressing rapidly, if it’s causing the patient to not be able to do their usual activities, that’s another reason for treatment. So, we have these clear guidelines that tell us the things that we should be watching out for and then, it helps us to know when it’s an appropriate time to start treatment for patients.

Why Should You See a Waldenström Macroglobulinemia (WM) Specialist?

June 23, 2022/in NHL Treatments and Clinical Trials, NHL Videos TC, Non-Hodgkin's Lymphoma, Waldenstrom, Waldenstrom Treatment and Clinical Trials, Waldenstrom Video TC, Waldenstrom's Basics TK, Waldenstrom's Programs, Waldenstrom's Toolkit /by Kara Rayburn

Why Should You See a Waldenström Macroglobulinemia (WM) Specialist? from Patient Empowerment Network on Vimeo.

There are only 1,500 patients diagnosed with Waldenström macroglobulinemia (WM) each year in the United States. WM expert Dr. Shayna Sarosiek explains why patients should consider a consult with a WM specialist and advice for being proactive in their care.

Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.

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Transcript:

Katherine:

Why do you think patients should consider seeing a Waldenstrom’s specialist?

Dr. Sarosiek:

So, Waldenstrom’s is a rare disease. There are only about 1,500 patients per year in the United States diagnosed with Waldenstrom’s. And because of that, many providers – whether it’s an internal medicine provider, a surgeon, oncologist – most people don’t have a lot of experience, just because it’s such a low number of patients with the disease.

And so, it’s not possible I think to really ever know everything there is to know about Waldenstrom’s. But that’s especially true when you’re working in the community, and you don’t get an opportunity to see a lot. So, if you have the chance to see a specialist, I think it’s really important. Because as a specialist, we really have the opportunity to get to know all of the data about the disease.

We get to know the nuances of the data. We get to know a lot of different presentations of the disease and have a lot of experience with the unique things that can happen with Waldenstrom’s. So, we’re lucky in that way to really be able to see patients and continuously just be learning more and more so that we can be more helpful to patients.

Katherine:

Right. What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or seeking a second opinion? Any advice for self-advocacy?

Dr. Sarosiek:

So, I think in general I would hope that most physicians and all physicians would really be open to having their patients get a second opinion. Even as a specialist, we’re really open to that because we can never know everything and so it’s important to get more brains involved at all times, I think is always helpful. So, although it may feel that way sometimes, I think the vast majority of physicians I come in contact with are really more than willing to get help from other people who might have more experience with such a rare disease.

And I think that patients should never be discouraged if they have a physician who’s not quite open to it [00:06:05], because they really – I think the patients are always their best advocate. They know their body the best, they know their symptoms, they know if something’s not right. And so, really pushing to get the right answers for themselves. I think being an advocate for yourself there’s no one who can do that better. So, patients should never be – should never hold back from getting a second opinion.

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients

June 23, 2022/in NHL Newly Diagnosed, NHL Videos ND, NHL Videos WPS, NHL Whole Patient Support, Non-Hodgkin's Lymphoma, Waldenstrom, Waldenstrom Newly Diagnosed, Waldenstrom Video ND, Waldenstrom Video WPS, Waldenstrom Whole Patient Support, Waldenstrom's Advocacy TK, Waldenstrom's Programs, Waldenstrom's Toolkit /by Kara Rayburn

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients from Patient Empowerment Network on Vimeo.

What should you know if you or a loved one has been diagnosed with Waldenström macroglobulinemia (WM)? Dr. Shayna Sarosiek of the Dana-Farber Cancer Institute shares key advice.

Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.

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Transcript:

Katherine:

Dr. Sarosiek, welcome. Would you please introduce yourself?

Dr. Sarosiek:

Sure. My name is Shayna Sarosiek, and I’m a hematologist and oncologist. And I work at Dana-Farber Cancer Institute where I see patients in the Bing Center for Waldenstrom’s. And really just focus on Waldenstrom’s and other IgM-related disorders.

Katherine:

Great. Thank you for joining us today. What three key pieces of advice would you have for a patient who’s just been diagnosed with Waldenstrom’s?

Dr. Sarosiek:

So, certainly being diagnosed with Waldenstrom’s can be incredibly overwhelming. So, a couple of things I try to remind patients of is one, in general, Waldenstrom’s is a pretty slow-moving disorder. And so, there’s a lot of time in most cases for patients to really get additional information, seek second opinions, learn really about the treatment options and make a really well-informed decision. And even in the cases where the patient might need treatment more urgently. We have some things that can kind of temporize or stabilize patients while we have time to make those informed decisions.

So, one, I would say there’s always time to make a well-informed decision about the next steps. So, although it can be overwhelming, that’s important to keep in the back of their minds. And the other thing for patients I would say is just to remember this is a constantly evolving field. And a conversation you have with your physician today, six months from now or a year from now is going to be totally different as things improve, more treatments are available.

And that’s a really positive thing for patients to remember, is that things are honestly just really every day improving in the field. And the third thing I would say is that there are really incredible resources available for patients. Videos like this, educational material, patient support groups. And there are really just a lot of opportunities that patients should and could take advantage of in order to really improve their care, be educated, and really know what treatments are available to make the best decisions.

What Do You Need To Know About Waldenström Macroglobulinemia (WM)?

June 23, 2022/in NHL Treatments and Clinical Trials, NHL Videos TC, Non-Hodgkin's Lymphoma, Waldenstrom, Waldenstrom Treatment and Clinical Trials, Waldenstrom Video TC, Waldenstrom's Basics TK, Waldenstrom's Programs, Waldenstrom's Toolkit /by Kara Rayburn

What Do You Need To Know About Waldenström Macroglobulinemia (WM)? from Patient Empowerment Network on Vimeo.

What should you or your loved ones know following a Waldenström macroglobulinemia (WM) diagnosis? This animated video reviews symptoms of WM, current treatment options and provides key advice for becoming a proactive WM patient.

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Transcript:

Waldenström macroglobulinemia, also called Waldenström or WM, is a rare, slow-growing type of non-Hodgkin lymphoma that starts in a person’s white blood cells. Healthy blood cells are crowded out when the bone marrow produces too many malignant white blood cells, and these produce an excess of a protein called immunoglobulin M or IgM.

Waldenström can cause symptoms that may include:

Fatigue
Unintended weight loss
Fever
Swollen lymph nodes
Enlarged spleen
Unexplained bleeding
And numbness in the hands or feet, which is called peripheral neuropathy

It’s important to note that not all patients with Waldenström have symptoms when they are diagnosed, and so those patients won’t need treatment immediately. Instead, they are put on an approach called “watchful waiting” or “active surveillance.” This means patients are monitored regularly for indicators that it is time to begin treatment – such as the onset of symptoms.

So, how is Waldenström typically treated?

Every patient is different. When making treatment decisions, factors such as the extent of disease and symptoms can impact available options. And potential side effects, a patient’s age, health, and lifestyle are also taken into consideration.

The good news is that there are several treatment options for Waldenström, including:

Chemotherapy
Targeted therapies such as proteasome inhibitors, BTK inhibitors and BCL2 antagonists;
Immunotherapy
And, clinical trials, which study emerging treatments for Waldenström. It’s important to ask your doctor if there is a trial that may be right for you.

Less commonly used treatments for Waldenström are stem cell transplant and radiation.

In the case of hyperviscosity or other IgM-related symptoms, plasmapheresis, also known as plasma exchange, may be used as a temporary measure to manage the issue.

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

First, continue to educate yourself about your condition.
Understand the goals of treatment and ask whether a clinical trial might be right for you.
It also important to consider a second opinion or consult with a specialist following a diagnosis.
And, write down your questions before and during your appointments. Visit powerfulpatients.org/wm to access office visit planners to help you organize your thoughts.
Bring one or more friends or loved ones to your appointments to help you recall information and to keep track of important details.
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 Waldenström macroglobulinemia and to access tools for self-advocacy, visit powerfulpatients.org/WM.

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