Tag Archive for: Waldenstrom macroglobulinemia

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

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.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Waldenström Macroglobulinemia Treatment Decisions: What’s Right for You?

Waldenström Macroglobulinemia Treatment Decisions: What’s Right for You? 

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

Exciting Advances in Waldenström Macroglobulinemia (WM) Treatment

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

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.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches 

What Are the Treatment Goals for Waldenström Macroglobulinemia?

What Are the Treatment Goals for Waldenström Macroglobulinemia? 

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches 


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

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.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients

When Is It Time to Treat Waldenström Macroglobulinemia?

When Is It Time to Treat Waldenström Macroglobulinemia?

Understanding Waldenström Macroglobulinemia and How It Progresses

Understanding Waldenström Macroglobulinemia and How It Progresses 


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?

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.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients

Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions? 


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

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.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

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

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

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

Understanding Waldenström Macroglobulinemia and How It Progresses

Understanding Waldenström Macroglobulinemia and How It Progresses 


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)?

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.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Understanding Waldenström Macroglobulinemia and How It Progresses

Understanding Waldenström Macroglobulinemia and How It Progresses

Waldenström Macroglobulinemia Treatment Decisions: What’s Right For You? Resource Guide

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches


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. 

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches from Patient Empowerment Network on Vimeo.

What Waldenström macroglobulinemia (WM) therapies are showing promise? Dr. Jorge Castillo of the Dana-Farber Cancer Institute discusses emerging research and advances in WM treatment.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

What Are the Treatment Goals for Waldenström Macroglobulinemia?

What Are the Treatment Goals for Waldenström Macroglobulinemia?

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions


Transcript:

Katherine:                  

Dr. Castillo, are there emerging approaches for treating Waldenstrom’s?

Dr. Castillo:               

Always. And that’s the beauty – that’s the second part of when we talked about clinical trials, right, we talked about clinical trials? Science continues, and we work very closely with an organization called the International Waldenstrom’s Foundation, and they support research all over the world for Waldenstrom’s.

So, their message is since the sun comes up until the sun comes down, there is someone, somewhere in the world working on Waldenstrom’s, and that’s true.

So, there’s a lot of science in the background, and that science helps us understand how the Waldenstrom’s cells behave, and therefore, we can then start targeting some things. That’s how BTK inhibitors came out. That’s how proteasome inhibitors came out. That’s how BCL-2 inhibitors came out. All these are the result of science, applied into the treatments. So, at my institution and many other institutions in the country and outside of the country, there are newer treatments being tried all the time.

We have now – we are looking into combining BTK inhibitors with other agents. Germany is doing a number of different studies. Canada is doing a number of different studies. We are doing some studies in the United States as well, combining chemotherapy and PIs with the BTK inhibitors. We’re doing a study in my institution combining BTK inhibitors with BCL-2 inhibitors. So, and the idea is to try to create a more powerful agent or regimen and hopefully maybe not give patients indefinite treatments, more like fixed duration treatments.

So, I think that’s where it’s coming. It’s coming maybe double, triple combinations, fixed duration treatments. That’s what is coming in terms of that aspect of the research. And then, we do have newer compounds coming out.

We do have now some concepts in what we call immunotherapy, right? We think about antibodies.

We think about bispecific T-cell engagers. CAR-T cells, so all that is actually up and coming in Waldenstrom’s. There are actual clinical trials being done today evaluating all those different treatments for patients with Waldenstrom’s.

So, I think the future is really bright. I’m really optimistic, to be honest with you about the treatment of patients with Waldenstrom’s. Obviously, what we need, what we want, is cure of the disease. And again, we can think about cure in two different ways. We can think about the classic definition of cure in which we treat patients, the disease goes away, you stop treatments, and the disease never comes back, right? That’s one way of looking at cure.

The other way of looking at cure is you treat the disease, the disease is in a remission, you continue treating the patient, and then the patient basically dies of other reasons, right? That is a functional cure. So, I think we’re closer to the latter, much more than the former, but the efforts to continue developing new treatments, it’s not stopping anytime soon.

Katherine:                  

No, because we’re always constantly moving forward, having to find new treatments, definitely.

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects from Patient Empowerment Network on Vimeo.

Is Waldenström macroglobulinemia (WM) causing fatigue? Dr. Jorge Castillo shares why WM patients should share any symptoms and side effects they experience with their healthcare team.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions?

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions


Transcript:

Katherine:                  

Fatigue seems to be very common among Waldenstrom’s patients. Here’s a question that we received before the program. Kasey asks, “Why do I feel so tired all the time? Is there anything that can be done about it?

Dr. Castillo:               

That’s a great question, and as I said before and basically kind of summarizing what I put together, I mean, there are many patients why a symptom with Waldenstrom’s could be fatigued. One of them is they could be anemic. The other one, they could have some hyperviscosity symptoms causing some fatigue, maybe some inflammation in the body because of the Waldenstrom’s, but maybe there are other reasons why patients can be fatigued.

And if you go out there in the streets and you start asking people, “Are you tired?” 80 percent of Americans are going to be tired. I’m not trying to minimize the symptoms of the patients. What I’m trying to say is we need to be very careful at understanding what the relation of the fatigue is with the disease. We need to be convinced that there is a relation there.

If that happened in my clinic – for example, a patient comes to see me, and they are fatigued; their hemoglobin is 14, which is normal; their IgM is about 1,000, which is not supposed to cause hyperviscosity. So, I do not know really in that context if the Waldenstrom’s is driving the fatigue or not.

Katherine:                  

Or if it’s something else.

Dr. Castillo:               

Exactly. So, we need to make sure that the patient doesn’t have any iron deficiency, that the patient doesn’t have any thyroid problems, that the testosterone problems are okay, that there’s no sleep disturbances, that there’s no depression. So, there’s so many different other things that we need to make sure are not there before we mount into that. Because if someone is fatigued with a hemoglobin of 8, which is very low, with my treatments, if I make that 8 14, I know the fatigue is going to get better. But if the patient is fatigued with a hemoglobin of 14, which I am not going to improve with my treatments, then how confident do I feel that I’m going to improve the patient’s quality of life with a potentially dangerous treatment?

So, we talked about already secondary leukemias, neuropathy, other problems that the patient can have with the treatments or because of the treatments.

So, we need to balance that out and understand that the potential benefit has to be higher than the potential risk, and that’s why the personalization comes into play. So, fatigue is a big issue, and we try to take a very systematic approach about that, you know, ruling out other conditions, making sure that we understand its relation with the disease before recommending treatment just for fatigue.

Katherine:                  

Yeah. This is one side effect that is so important for patients to share with their healthcare team, right?

Dr. Castillo:               

Oh, absolutely.

Katherine:                  

So that their healthcare team can know how to treat them.

Dr. Castillo:               

That’s right. And again, there are so many interventions that are not medications that could be done in these type of situations, right? Meditation, mindfulness. There are so many other approaches to try to help in these type of situations, changing a little bit sometimes the perspective, trying to be a little bit more on the positive thinking, right?

So, there are so many different ways outside of pharmacological approaches that we can use to try to improve our patients’ quality of life.

Katherine:                  

Yeah. Knowing that one has an incurable disease can be very stressful, right? Knowing that you have to live with this.

Dr. Castillo:               

That’s absolutely correct, and again, what I’ve seen happening in some of my patients is every little thing that happens to them, they do not know if it’s because of the disease or not.

Katherine:                  

Oh, yeah.

Dr. Castillo:               

“So, I have a twitch there. Oh, it’s due to Waldenstrom’s. Do I need to be treated because of that twitch?” And that, I understand it. Well, I try to understand it. I’m not in that same situation, so I cannot understand it completely. But I try to understand how if you don’t trust your body anymore, right? I mean, you have a disease, and you don’t trust your body anymore, then how you trust all these little symptoms here and there?

So, in my conversations with my patients, I discuss these things openly and that you’re going to have a lot of different symptoms here and there. Most of them probably are not going to be related to the disease, but if some of them are concerning enough to you in terms of your activities, in terms of eating, drinking, sleeping, social life, sexual life, you know, working life, then let me know, and then we will be happy to investigate those because anything can happen to anybody.

So, you can have other problems. Waldenstrom’s doesn’t protect you from anything, so, and it’s always important to discuss this with patients and pay attention to the patients, not dismiss their symptoms, think about them with them, talk about them with the patients to try to understand how these are affecting them.

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Jorge Castillo discusses the patient’s role in their Waldenström macroglobulinemia (WM) treatment decisions and shares advice encouraging patients to be active participants in their care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

When Is It Time to Treat Waldenström Macroglobulinemia?

When Is It Time to Treat Waldenström Macroglobulinemia?

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects


Transcript:

Katherine:                  

What do you feel is the patient’s role in treatment decisions?

Dr. Castillo:               

From my perspective, the patient’s role is very important. I need, as a physician, that the patient feels that it’s part of the team here. So, when patients come to see me, I strongly encourage patients to bring as many people as they want with them. If they want somebody on FaceTime at the same time, I’m happy with that too. And that helps because the amount of data that we provide, the amount of information that we provide, is a lot in terms of quantity. But sometimes, it’s not easy to understand when you just hear it one time, right?

So, having somebody taking notes, having somebody else taking notes, having somebody else listening, somebody else asking questions, and then somebody else explaining back to the patient – the patient is looking for the best for them, but if he’s also affected by the whole process. It would be naïve to feel – or to think – that somebody was told they have an incurable blood cancer, and they are completely paying attention to everything you’re saying, after you said something like that.

So, I think it’s important for patients to be there with family, friends, or whoever wants to be there to help out. I think that’s a really important aspect. Then, number two is you need to know about your own disease. And I am fortunate to work with a group of patients who are highly educated, to the point that they get to know more about their disease than their own doctor. And I think that’s key. I think that’s important. For me, that is not threatening or challenging. I think that is actually a good thing.

And that way, I can have a more direct conversation, meaningful, because I understand that the patient is understanding what I am saying, and we are trying to speak the same language, so I think that is key also. So, bottom line, I think education from the patient perspective, involvement of their care, I think that’s key so they can be their own best advocates.

There is going to be a lot of – since it’s a rare disease, there’s going to be a lot of backs and forths with different physicians. Some physicians are going to be more intensive and trying to treat when the patient doesn’t need to be treated. The opposite is also true in which a patient, they do need treatment, and the physicians are saying, “No, we can wait a little bit longer.” And again, that has nothing to do with the quality of the doctor. It’s just the fact that the disease is rare, and to keep up with it is very difficult. So, the patient being their best advocate is actually a very important role that they should have.

Katherine:                  

Knowledge is power.

Dr. Castillo:               

That’s right.

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions from Patient Empowerment Network on Vimeo.

Many factors come into play when making treatment decisions for Waldenström macroglobulinemia (WM) patients. Dr. Jorge Castillo reviews key decision-making factors and explains how genomic profiling results may affect WM care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions?

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects


Transcript:

Katherine:                  

Dr. Castillo, many factors coming into play, obviously, when making a treatment decision. How do you decide which treatment is appropriate for a particular patient?

Dr. Castillo:               

Yeah, that’s a million-dollar question. And the reason that is the case is because when we think about other types of cancers, right, breast cancer and lung cancer, we do have these large studies with thousands of patients in which half of the group got one treatment; the other half got the other treatment. And we know that one treatment is better than other in this context of a randomized, large study. We don’t have a lot of that in Waldenstrom’s because it’s a rare disease. So, most of the studies that we do have are studies in which we have maybe 30, 40, 50 patients, 100 if we’re lucky, so comparisons between all these different treatments have not been done.

So, the chemotherapy, for example, versus the PI, there’s no study comparing that. The chemotherapy versus the BTK inhibitors, there’s no study comparing that. So, based on that, since there’s no comparison, we need to kind of understand the profile of the drug, you know. And you need to match that with the patient’s preferences.

So, we need to look at the patient’s age. We need to look at the patient’s comorbidities. We need to look at the patient’s medications that they’re on. Are their insurance going to cover the pills or not? Are they comfortable with getting intravenous infusions? What is the risk of leukemia versus the risk of neuropathy in those patients? So, we need to look at so many

factors. Interestingly enough, efficacy is not the problem. We don’t choose treatments based on efficacy because all of the treatments are almost equally effective. We actually choose treatments based on patients’ preferences. We choose treatment based on the medication side effects.

And the newer thing is actually, we’re doing genomic profile in the patients. We’re actually seeing which mutations the patients have, and there are some treatments that work better or worse with specific mutations, so we kind of tailor a treatment option based on all those factors.

So, it’s not an easy job, but I think it’s rewarding to understand that the best treatment for a patient with Waldenstrom’s is a personalized treatment. And as long as –

Katherine:                  

That’s what it sounds like.

Dr. Castillo:               

And as long as the patient understands the best he or she can in terms of the pros and cons of the treatment before going in, an educated decision, I think that’s probably best choice, yeah.

Katherine:                  

Are there test results that can impact options?

Dr. Castillo:               

I would say so. So, for example, in patients who have very high IgM levels, we try to avoid giving rituximab alone, for example, because rituximab can also make the IgM go up in about 40 to 50 percent of the cases, and patients can become more symptomatic if they were symptomatic because of the IgM in the first place.

So, that’s one value that we follow carefully. Sometimes, the kidney function can tell us if there are some chemotherapies that cannot be given with a kidney function that is not normal or close to normal, for example. And again, there are some mutations that can help us understand if a treatment might work better than other treatments too.

So, yeah, there’s a lot of shades of gray in there to be able to pick and choose. And again, the patient’s symptoms are important. I mean, if a patient, for example, already has an arrhythmia, I’m going to try to avoid a medication that can cause more arrhythmias. If a patient has already some nerve damage, I’m less likely to recommend a treatment that can cause more nerve damage. So, yeah, there’s a lot of room there for personalization.

Katherine:                  

Yeah. You’ve mentioned existing conditions. So, how do patients’ specific factors like lifestyle and age and other preexisting conditions impact treatment choices?

Dr. Castillo:   

Well, I think the way that affects it is just because patients who are older age tend to have other problems, you know. And I think having that in mind is important. So, if somebody has a liver dysfunction of some kind, then that will modify my treatment options. And as I said earlier, if someone has a kidney disfunction of some kind or depending on the degree, I can choose a different type of treatment there.

Now, also, we need to be mindful, for example, if somebody’s not so reliable on taking pills because they cannot remember or they don’t know, they are not organized enough or they don’t – you know. So, there are so many other factors playing into that role – maybe a pill form treatment might not be the best option, you know.

If somebody doesn’t have help to transfer him to take him to the infusion room back and forth, maybe an infusion treatment might not be the best there. So, again, another series of factors could be taken into account when making treatment decisions.

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches from Patient Empowerment Network on Vimeo.

Which Waldenström macroglobulinemia (WM) treatment is right for you? Dr. Jorge Castillo discusses available WM treatment approaches and their side effects.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions?

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects


Transcript:

Katherine:                  

Can you walk us through the currently available treatment approaches for WM?

Dr. Castillo:               

Oh, there’s plenty. And that is actually a good message. So, there are many treatment options, and the treatment options are almost equally effective. So, I think we can separate the treatment options in big groups. I think that the big group, the first group that we use, treatments that are very effective, is chemotherapy-based. And we have a number of chemotherapy options that we use routinely for patients with Waldenstrom’s. We typically combine chemotherapy with an antibody called rituximab. And that rituximab is used universally for a lot of different blood cancers out there.

And so, when we combine the chemotherapy with the rituximab, I would say probably 90 to 95 percent of patients that get treated do feel better. Not only their numbers improve, but also the symptoms improve, the treatments. These treatments are typically given intravenously, and they are typically given for about six months of treatments. It’s very easy to tolerate.

I mean, it’s not the classic chemotherapy that we think about with other cancers, right? Losing your hair and vomiting and being very sick. That is not what happens with these chemos. They are very gentle chemos. But the fact that they are gentle doesn’t mean that they do not work. I mean, they are very effective against the disease, but they are more gentle in terms of the side effects. Some other side effects that I think are important with chemo specifically is the small risk of developing another bone marrow disease, and that’s because of how chemo works. It also damages a little bit the good cells, and that can cause other problems, and the risk of infections.

I think nowadays, in the context of the pandemic, I think the risk of infections is something that we need to really talk about a lot with our patients. But these typically are six-month treatments, intravenous treatments, and then done with treatments and very effective regimens. Then, we have the non-chemo treatments, which is you have a lot of those, development of those therapies over the years.

We do have a group of medications called proteasome inhibitors, or PIs. And we borrow those from the myeloma group.

Myeloma is another blood cancer that shares some similarities with Waldenstrom’s, so we use some of those treatments into our treatments. And these are non-chemotherapy agents. We also combine them with rituximab to make them more powerful.

And some of them are intravenous. Some of them are injected under the skin. Some of them are pills. And again, six months of treatments, very nicely tolerated, very effective. I’m talking about 90, 95 percent efficacy rate. And the side effects with this are more like nerve ending damage or more like lung, heart problems, not really secondary malignancies, but infections is also an issue here too.

And then, we have the most – the newer treatments that are the pill form treatment. We call them BTK inhibitors, B as in Boy, T as in Tom, K, BTK inhibitors.

We use that for many other diseases as well, but we use them for Waldenstrom’s too. And we use them alone in most scenarios. Sometimes, we can combine them with rituximab, but the large experience is without rituximab. So, it’s just the pill. Nothing else. No injections or infusions. No risk of secondary bone marrow disease. No risk of neuropathy. But they are pills that you have to take every day, indefinitely.

So, in contrast with the other six-month treatments, duration treatments, these are treatments that tend to last for several years. And we do have some taking these pills sometimes for six, seven, eight years, and they continue on them because they do well, and their response is as good as chemotherapy. But it’s just with a pill that you need to take every day.

Now, these pills have a different set of side effects, and that includes sometimes some irregular heartbeats, some bleeding and bruising. We have a new pill just that we published on recently, a medication called venetoclax, with a V. Again, it’s a different mechanism of action. It’s a BCL-2 inhibitor. It doesn’t have any risk of arrhythmia or bleeding, but it can cause some issues with infections.

But maybe you can take two years of this treatment and not take it indefinitely. So, all these are treatments that we keep advancing, and we will continue running studies with new medications that hopefully have similar or higher efficacy with a better side effect profile.

Now, just to finalize, the last option that should always be in the mind of a patient is clinical trials, investigational agents that are not sometimes – some of them are approved already by the FDA.

Sometimes they’re not. But they are agents that either in the laboratory or in prior experience suggest that they might have efficacy on these patients.

And that’s another treatment option that could be considered in some scenarios.

What Are the Treatment Goals for Waldenström Macroglobulinemia?

What Are the Treatment Goals for Waldenström Macroglobulinemia? from Patient Empowerment Network on Vimeo.

Waldenström macroglobulinemia (WM) therapy Is often focused on symptom management. Dr. Jorge Castillo of the Dana-Farber Cancer Institute discusses the goals of treatment for patients with WM and how IgM levels may affect care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions?

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches


Transcript:

Katherine:                  

What are the treatment goals for Waldenstrom’s?

Dr. Castillo:               

So, as I said earlier, we don’t cure patients with Waldenstrom’s. Patients live with Waldenstrom’s, and I said before as well, for many years.

So, I think the goal of the treatment is to get back the patient – to get the patient back to how they were feeling before they became symptomatic. If the patient is not able to play with their children, as I said before, getting them back to play with their children again and have that energy. Or if they’re having all these lumps popping up in their bodies, kind of reduce the size of those lumps. Or if they’re having the neuropathy, have an improvement on the nerve ending damage and the numbness that they’re experiencing. If they’re having nosebleeds and headaches, resolve those symptoms.

So, in many other cancers, we think about complete remissions, cures, and that’s what we need to do. And we need to induce responses in our patients, and our treatments do induce responses in our patients, and responses are measured by IgM levels improvements and hemoglobin improvements and things like that, which is great to have the numbers improve, but I think it’s key to actually control the patient’s symptoms as well.

And I think it’s – from my perspective as a patient, if I were a patient, that would put it more important to me. So, what about my hemoglobin going from 10 to 13 if I’m not feeling better? So, I think feeling better is a very important aspect of what we do here.

When Is It Time to Treat Waldenström Macroglobulinemia?

When Is It Time to Treat Waldenström Macroglobulinemia? from Patient Empowerment Network on Vimeo.

Waldenström macroglobulinemia (WM) is a condition that may not require treatment right away. WM expert Dr. Jorge Castillo explains the watch-and-wait period and discusses factors that may indicate treatment is necessary.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

What Are the Treatment Goals for Waldenström Macroglobulinemia?

What Are the Treatment Goals for Waldenström Macroglobulinemia?

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches


Transcript:

Katherine:                  

Help us understand when it’s time to treat. Certain patients, as you said, don’t really need treatment right away because they’re asymptomatic. So, which patient type should begin to get treatment?

Dr. Castillo:               

That’s really the most important aspect of the discussion, I would say, because from my perspective – you know, I’ve been doing this for almost a decade, seeing probably 3,000, 4,000 patients with Waldenstrom’s in my career, I think one of the most important decisions is when to treat.

A number of our patients will be asymptomatic, and they will remain asymptomatic for years. So, really, treatment initiation in this scenario is not reasonable. Number one, we don’t cure the disease. Number two, patient have a long survival. I’m talking about 15, 20 years of survival in a large proportion of patients. So, a treatment that is going to last a year is not going to change a 20-year survival, so we don’t extend the survival of our patients in most cases.

Katherine:                  

Right. If a patient has been on watch and wait, how do you know when it’s time to begin therapy?

Dr. Castillo:               

Yeah, so essentially, when we see patients in whom we decide to monitor, right, watch and wait, which is monitor them, we follow them over time, and we see them sometimes every three months or every six months, and we get bloodwork.

We do bloodwork on those patients to look at the hemoglobin, just to see if there’s anemia or not, to look at the IgM to see if it gets too high or not. And if the IgM is too high, sometimes, we’ll have the patients have eye examinations on a yearly basis to make sure that there’s no changes in the vessels in the back of their eyes, in their retinas. That’s an indication of hyperviscosity. And every time we see them, not only do we look at the numbers, which I think is important, but we also look at the symptoms.

So, I classically ask my patients, “How’s your energy level, how well you’re doing, still able to do everything you want to do? Any numbness in your feet? Right? Any nosebleeds, any headaches, any blurred vision, right? Any lumps? So, I just go over this list of different symptoms that patients can experience. Are you having fevers? Are you having night sweats? Are you losing weight for no reason? Right? So, it’s a monitoring process.

Just to clarify further, for example, a patient can come to see me with anemia, and I know that Waldenstrom’s causes anemia, as I said before. But it is my duty as a doctor to make sure that there’s no other reason why the patient might be anemic. So, even though in the scenario, which is very likely that the disease is causing this problem, I still need to make sure that it is not something else driving this anemia for the patient, and then the anemia is severe enough. You know, some patients say, “Yeah, I’m a little tired, but I’m still able to do everything I want to do.”

So, really that’s a very minor process. And there are people who tell me, “You know what, I cannot play with my children anymore, right, because I’m so tired,” then that’s a different process. So, the severity of the symptom and how related to the disease it is, that combination is what really tells us who needs to be treated or not.

So, what I would say in terms of treatment timing for Waldenstrom’s patients, it’s not that you need treatment and then you don’t need it, and then you need it. It’s not like that. It’s more like you don’t need it; you don’t need it; and then it is reasonable to treat. And there is a period in which it’s reasonable to treat, and that period can last sometimes months to years. Some patients can decide to be treated a little earlier in the process with less symptoms. And some patients can decide to be treated a little bit later with more symptoms.

So, it has to do a lot with the patients, how they feel, how they’re tolerating the symptoms, how dangerous or potentially threatening those symptoms are. And that’s a conversation that it needs to take place between the doctor and the patient, understanding the patient’s preferences.

Understanding Waldenström Macroglobulinemia and How It Progresses

Understanding Waldenström Macroglobulinemia and How It Progresses from Patient Empowerment Network on Vimeo.

Dr. Jorge Castillo of Dana-Farber Cancer Institute provides an overview of Waldenström macroglobulinemia (WM) and how the condition presents and progresses.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

When Is It Time to Treat Waldenström Macroglobulinemia?

When Is It Time to Treat Waldenström Macroglobulinemia?

What Are the Treatment Goals for Waldenström Macroglobulinemia?

What Are the Treatment Goals for Waldenström Macroglobulinemia?

Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches


Transcript:

Katherine:                  

Let’s start with the very basic. What is Waldenstrom macroglobulinemia?

Dr. Castillo:               

Yeah, Waldenstrom’s macro – it’s a mouthful.

Katherine:                  

It is.

Dr. Castillo:               

I can just call it WM for ease.

It is a blood cancer, and in this blood cancer, the malignant cells are nesting in the bone marrow. And not only that. These malignant cells kind of secrete, produce, a protein called IgM.

IgM is an antibody that should be protecting us from infections, and in a normal state, we all have a little bit of IgM, and that’s a good thing. But in these patients, with these malignant cells, as these cells accumulate in the marrow, they actually increase the levels of IgM in our patients, and that can translate into a number of different symptoms, which we will probably talk about later.

Katherine:                  

Yes. How is it staged?

Dr. Castillo:               

So, the staging is a very interesting aspect. So, when we think about cancer, we think about stage I is in one spot, stage II in another spot, stage III, right, and it gets more extensive as we go along. That doesn’t really apply to Waldenstrom’s. Waldenstrom’s is a whole-body disease right from the start. The main reason for that is because it’s a disease of the bone marrow, and we all have bone marrow in all our bones, from our skull all the way to the great toe, so if you were to get a sample from each bone space, we would find the malignant cells there. So, this is a disease that is a whole-body disease right from the start, so therefore, there’s no stage I, II, or III. That is just the way we envision this.

Katherine:                  

How does the condition progress?

Dr. Castillo:               

So, it’s interesting because a number of the patients that we see in my clinic are actually asymptomatic at the time of the presentation. I would say maybe about a third of the patients I see in my clinic that were diagnosed with this disease for other reasons. They either had an abnormal laboratory value or an abnormal imaging study or some other reason. And when they come, they are worked up. Initially, they are found to have these malignant cells and these IgM elevation, but they have no other problems whatsoever.

So, I would say most patients will be asymptomatic at the beginning of the disease, and probably they will be asymptomatic for years before the symptoms actually do start. So, what happens is the malignant cells start taking over the bone marrow space, and it reaches a point in which the bone marrow, the healthy bone marrow, doesn’t have space to produce the normal cells that they should produce.

So, the first things that we tend to see in these patients is anemia, so the hemoglobin level starts dropping.

The red cells are the first ones that are being affected by this process so that the anemia is being seen first. If we leave that for a long time, then the other blood cells will decrease also, the white blood cells and the platelets over time. But the first one is almost always the anemia. And obviously, that, patients feel tired. They feel short of breath. They feel fatigued and all of that.

Now, the IgM itself can cause other problems on their own. If they have there’s too much IgM, they can actually make the blood a little thick, and that can cause a little bit of problems with the circulation, specifically in the eyes, for example. Some patients have blurred vision. Some patients have nosebleeds or headaches, right, with all that hyperviscosity, which means the blood is too thick. In some other patients, we have nerve damage. You know, they can have numbness in their toes, and then that increases into the – progresses, extends into the feet, into the shins, into the knees and then the fingers.

And so, that happens over years sometimes. Some patients can have enlargement of lymph nodes in their necks and in the axillary areas or in the inguinal areas, or even enlargement of organs, the spleen and liver and things like that. So, when we think about the clinical manifestations of Waldenstrom’s, it varies, very diverse. But I would say most patients would have anemia. I think that’s probably the most important aspect of it.

Three Ways to Partner in Your Waldenström Macroglobulinemia Care

How can Waldenström macroglobulinemia (WM) patients become partners in their care? In the “Waldenström Macroglobulinemia Treatment Decisions: What’s Right for You?” program, expert Dr. Jorge Castillo from Dana-Farber Cancer Institute shares three key ways that WM patients can take a more active role for optimal health outcomes.

1. Ask Your Doctor When the Appropriate Time to Treat Is

WM patients can often remain in the watch-and-wait phase of their disease for many years, but it’s important for the oncologist to monitor the patient during this time. Ask your doctor when the appropriate time to treat will be, make sure that your bloodwork is monitored on a regular basis, and report how you’re feeling and all of your symptoms.

 2. Establish Your Treatment Goals and Plan

Depending on each Waldenström macroglobulinemia patient, treatment goals may vary depending on the patient age, overall health, lifestyle, and other factors. Work together with your healthcare team to determine your treatment goals and then learn about treatment options. Take action to both ask your WM provider about treatment options and ask about credible Waldenström macroglobulinemia online resources to do further research. And then discuss your treatment options with your WM provider to determine the best treatment for you.

3. Become a Proactive Patient

WM patients can take actions to further advocate for their best care. Educate yourself about your condition by reading credible online resources like International Waldenstrom’s Macroglobulinemia Foundation, Lymphoma Research Foundation, and The Leukemia & Lymphoma Society. Bring a friend or family member to your appointments with your Waldenström macroglobulinemia doctor to help take notes or to ask questions – and make sure to advocate for yourself if you feel ignored or unheard.

By taking a more active role in their care, Waldenström macroglobulinemia patients can help determine the best treatment plan for optimal health outcomes.