Waldenstrom's Basics TK Archives

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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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.

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.

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.

What Are the Treatment Goals for Waldenström Macroglobulinemia?

April 7, 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 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.

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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?

April 7, 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

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.

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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

April 7, 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

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.

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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.

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