Tag Archive for: Waldenstrom treatment

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

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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.