Tag Archive for: watch & wait

Essential Thrombocythemia Watch & Wait | What Patients Should Know

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Essential Thrombocythemia Watch & Wait | What Patients Should Know from Patient Empowerment Network on Vimeo.

What is watch and wait, and what does it mean for essential thrombocythemia (ET) patients? Dr. Naveen Pemmaraju defines this term, helps viewers to understand why it’s beneficial to wait before beginning treatment, and shares advice for managing the worry that can be associated with this time period.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju. 

 

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Transcript:

Katherine Banwell:

Stephanie writes, “I have ET, and I’m not being treated. Do you have advice for the watch-and-wait period? I’m anxious about the disease changing and don’t know what I’m waiting for.” So, before you answer the question, Dr. Pemmaraju, would you define this term, watch and wait?  

Dr. Pemmaraju:

I will. And to Stephanie and everyone out there, this is a great question. I will say half the folks I talk to actually call it watch and worry, okay. Some people call it watch and wait, and as Stephanie’s saying, some people call it watch and worry.  

Yeah, the concept is threefold. One is that there are many cancers, many cancers, including blood cancers, that can be caught so early on that they don’t require treatment. A lot of patients with CLL, chronic lymphocytic leukemia, ET, as Stephanie mentioned, in the solid tumor. It’s very common to be diagnosed with a prostate cancer that’s low grade, early stage that can be observed. Number two is in ET, there is a science behind it.   

What we found in our studies, and they can be updated over time and you’ll see those, the traditional is that if you’re below the age of 60 and/or you’ve had no blood clot, thrombotic event, that’s considered low risk. And the treatment can be observation, perhaps adding in a baby aspirin to prevent against blood clots if there’s no contraindication. Now what’s magic about that age 60, obviously as you know, it’s not magic. It’s more of a statistical, continuous variable algorithm that says around that time, the risk of blood clots goes up.

And so then you’d consider cytoreductive therapy at that point. Now there’s exceptions to that. Many of our young patients are on therapy, but there’s usually some reason for that. Some high-risk feature, wildly uncontrolled blood counts, for example, symptom burden, some other high-risk features. So, it’s a suggestion. It’s a guideline, not an absolute. And then the third part of it is, the what do you do in that time? And that’s the frustrating thing. And I think that’s what Stephanie’s getting to.  

Again, that’s why I said the watch and worry versus watch and wait. Some of it is, how are you feeling outside of this? Some patients take it as a great news. Hey, you have this blood cancer, that’s not good news. But the good news is it’s probably not going to be active for a long time, we can, “just watch it.” But some people, as Stephanie is saying, take it the opposite way. What do you mean I got a blood cancer? I got something lurking in my body. You’re telling me it’s there, you know it’s there. And so what’s up with that? And the concept there is that some of these situations like low-risk ET, we found that if you treat too early, too aggressively, you can actually do harm.  

So, that’s the key. These chemo drugs are not benign as you had me discuss earlier. They have toxicity, side effects, short-term, long-term. So, it’s a risk-benefit thing. If the risk far outweighs the benefit, as in the younger patient with no symptoms, no high-risk features, observation is okay. But at some point, when it turns, that’s the threshold.  

So, really the key is, if we believe these are stem cell blood cancer disorders, we need to be thinking about and designing therapies with minimal to no toxicity. Something that actually modifies the disease early on and something that leads to long-term outcomes. And we don’t have that yet in ET. We’re working on that in PV and myelofibrosis. So, stay tuned for that.

And then finally, let me also add, this is an important point, not everybody gets it. This watch and wait versus watch and worry. So, I’m glad Stephanie brought that up because it’s not always good news, uniformly, when you tell someone, good news is you don’t have to do anything bad news, there’s something there. 

What Testing Is Appropriate for People With Smoldering Myeloma?

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What Testing Is Appropriate for People With Smoldering Myeloma? from Patient Empowerment Network on Vimeo.

How is smoldering myeloma monitored? Myeloma expert Dr. Brandon Blue explains why treatment is not necessary and the types of tests that are used to monitor this diagnosis.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

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Transcript:

Katherine Banwell:

What testing and treatments are appropriate for smoldering myeloma? And first, could you define smoldering myeloma for us?  

Dr. Brandon Blue:

Yeah. So, one of the things that makes multiple myeloma kind of a very difficult disease is that it can attack people’s bones.  

When people have the smoldering myeloma, they have none of those bone disease. When people typically have multiple myeloma it can affect their kidneys, and actually cause low blood counts called anemia.  

When people have smoldering, they don’t have any of those classic features, however, they still may have a burden of cancer cells. Anywhere from 10 to 59 percent of plasma cells is really still considered this smoldering, or inactive cancer, but it’s still cancer. And so, we know that roughly in the first five years about 10 percent of those patients will go from this inactive smoldering stage to the active myeloma and required treatment. 

A lot of times we do observation for those patients to kind of make sure that they get the treatment when they need it. There is some studies to show that some people do get treatment during the smoldering stage, but for a lot of times observation is needing because sometimes it can be several years really before someone would need treatment. 

And a lot of times we try not to expose people to treatment if it’s really not necessary at the time.  

Katherine Banwell:

I see. So, it’s more of a watch and wait. 

Dr. Brandon Blue:

Exactly right. And sometimes you actually watch and wait, and then you keep watching, and waiting, and sometimes people never develop the active disease. And so, especially in those patients, you would’ve exposed them to chemotherapy that they really never needed. And one thing that I always tell my patients is that it’s important to know that you have cancer cells, but it’s also important for us to follow it. We are here to help and support you, right? And having cancer in your body sometimes can be very anxiety-provoking. 

And so, for a lot of patients who are in that category, sometimes we offer them clinical trials that we have available to say, “Hey, this is something that we’re trying to explore and learn more about smoldering myeloma. And maybe this is something that may benefit you.” 

Katherine Banwell:

Yeah. Can a patient with smoldering myeloma be monitored through blood work? Is that something you would do?  

Dr. Brandon Blue:

Yeah. So, typically what we try to do because the disease is so multifaceted, meaning that myeloma is not the same for each person. So, the blood is a fantastic way of following the disease, and monitoring, however, we need to do a little bit more than that. We also like to collect urine because, again, multiple myeloma can affect people’s kidneys. And the good thing about urine is that we flush it down the toilet all the time, but there’s so much information that gets flushed down that we really can learn about the disease and learn about the person by following the urine over time. 

The next thing is that we can follow imaging because, again, multiple myeloma can affect people’s bones. Sometimes if you get aches, and pains, we don’t know if that’s the muscle, we don’t know if that’s a ligament, we don’t know if that’s the bone. Pain is such a subjective thing, so we need to follow people, and have them be monitored with imaging. So, I think that combination of blood, urine, and imaging would be the best thing to do. 

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

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

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

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

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Transcript:

Katherine:

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

Dr. Sarosiek:

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

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

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

Katherine:

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

Dr. Sarosiek:

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

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

Katherine:

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

Dr. Sarosiek:

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

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

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

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

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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.