Tag Archive for: molecular testing

Collaborate | What You Should Know About CLL Clinical Trials

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What role do clinical trials play in treating chronic lymphocytic leukemia (CLL)? This animated video explains clinical trials, reviews the benefits of patient participation, and discusses questions to ask your healthcare team.

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Transcript:

Dr. Johnson:

Hello everyone! I’m Dr. Johnson, a physician specializing in blood cancers. Welcome back to the CLL Collaborate series from the Patient Empowerment Network.  

Joseph:

And I’m Joseph, Dr. Johnson’s patient. Today, we’ll be discussing an important topic: CLL clinical trials. We will talk about what clinical trials are, their role in advancing research, and how patients may benefit from participation. 

Dr. Johnson:

Let’s get started. Clinical trials are research studies that involve patients, and the goal is to find better ways to prevent, diagnose, or treat diseases. They are essential for advancing medical knowledge and for bringing new treatments to patients. 

Joseph:

Thanks, Dr. Johnson. And how exactly do clinical trials move research forward? 

Dr. Johnson:

Good question! Clinical trials provide critical data on the safety and effectiveness of new treatments. They also help researchers understand how different therapies work in diverse groups of people and ensure treatments work well and do not cause harm to humans before they become widely available.  

Early phase clinical trials are used to determine the treatment’s safety, while the latter phases investigate how effective the therapy is in managing a specific condition.  

Joseph:

And how can CLL patients benefit from participating in clinical trials?  

Dr. Johnson:

Well, Joseph, participating in a clinical trial can provide access to new options that are not yet available to the public. Patients also receive high-quality care from the clinical trial healthcare team, as they are very closely monitored throughout the study. And participation contributes to the advancement of medical research, potentially benefiting future patients. 

Joseph:

That makes sense. When we reviewed my treatment options, you suggested several trials that could be a good fit for me, and we discussed the pros and cons. So, what should patients ask their team before joining a clinical trial?  

Dr. Johnson:

Let’s walk through several important questions to ask your healthcare team: 

  • What trials do you recommend for me and why? 
  • What is the purpose of the trial? 
  • What treatments and tests will I receive during the trial? 
  • What are the potential risks and benefits? 
  • Are there resources to help me learn more about the trial? 
  • How might this trial affect my daily life? 
  • Will I need to travel for treatment or tests? 
  • Finally, how long will the trial last, and what happens after it ends? 

Discuss these questions with your healthcare team to determine if a clinical trial is the right option for you. 

I also want to note that clinical trials are voluntary, and patients can decide to leave a trial at any time. The informed consent process educates participants about all potential risks and benefits and reviews their rights. Remember, you are at the center of your care.  

Joseph, can you share advice for patients as they learn more about trials and advocate for better care? 

Joseph:

I’d be happy to! Here are some additional steps to help you feel confident when considering clinical trials: 

  • First, educate yourself: Understand the basics of clinical trials and how they work. It’s important to gather your information using credible resources—like the Patient Empowerment Network and The Leukemia & Lymphoma Society. 
  • Next, write down questions: Prepare a list of questions to ask your healthcare team. And download the guide that accompanies this video to review the questions Dr. Johnson suggested.   
  • Additionally, discuss goals: Be clear about your treatment goals and ensure you’ve had all of your questions answered before making a decision. 
  • Bring support: Have a loved one join you for appointments or discussions to help take notes and to provide support.  
  • Finally, stay informed: Keep up with the latest research and advancements in CLL treatments. As I mentioned, PEN and the LLS are great sources of information. 

Dr. Johnson:

These are excellent tips, Joseph! Thank you everyone for joining us. For more information and valuable resources, visit powerfulpatients.org/CLL.  

Collaborate | What You Should Know About CLL Clinical Trials Resource Guide

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How Is an AML Treatment Plan Determined?

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Dr. Daniel Pollyea explains the importance of collaborating with your healthcare team on your AML care decisions and discusses factors that guide an individualized AML treatment plan, such as age, overall health, and personal preference. Dr. Pollyea also addresses the role of common AML gene mutations when choosing therapy.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 

 

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Transcript: 

Katherine Banwell:

When it comes to choosing AML therapy, it’s important to work with your healthcare team to identify what will be best for you. Would you walk us through the factors that are considered when choosing therapy for AML? 

Dr. Daniel Pollyea:

Sure, yeah. So, we now have options in treatments for this disease and for decades, that wasn’t the case. This was a one-size-fits-all type of disease. And in the last eight years, that has completely changed.

So, there are approaches and diagnosis that vary between very intensive chemotherapy and less intensive treatments. What we call “targeted therapies” in some cases can be considered or be appropriate.  

And so, having a sense, after learning a little bit about this, of how much would you be willing to tolerate an intensive chemotherapy regimen and all the risks inherent in that, if that’s even being presented as an option, and if so, what does that look like? And if not, hey, what are the other options if that sort of doesn’t sound like something that you would be willing to accept? So, I think those kind of probing questions.  

First, asking yourself and then sort of translating that into your treatment team, into “Hey, this is sort of how I define quality of life.  

And these are some red lines that I wouldn’t cross,” that can really help the healthcare team because, again, this is not one-size-fits-all anymore. We do have several options to consider at the time of diagnosis. 

Katherine Banwell:

What other factors would you take into consideration? Do you look at age and overall health and fitness, test results? 

Dr. Daniel Pollyea:

Absolutely. So, the relevant factors at the time of diagnosis would be, as you described, age, to some extent. And there’s no magic cutoff. “When a person is a certain age, this is no longer a treatment.” But age just gives us guidelines. Other comorbidities, other disease that you may be dealing with, things in your past, organ dysfunction; all those things are really, highly considered.  

And also, sort of your own attitude toward “Hey, would I be okay with a month-long stay in the hospital or is that something that there’s no sort of outcome that that would be okay for me to withstand?” But then, the other huge part of this are things that are sort of, at diagnosis, unknown to you and unknown to your doctor for a little bit. And those are disease factors. So, what are the mutations that make up your disease? What’s making your disease tick? And now, just with normal clinical care, we have unbelievable access to this information. We can essentially learn within a week or two every relevant mutation that’s contributing to your disease.       

And that helps us tremendously with respect to prognostication, sure, but also treatment selection because there are some treatments that will work, we think, better with certain disease biology, and other treatments that will work less well.  

And we even have targeted therapies; so, based on particular mutations or other abnormalities, sort of a rationally designed therapy for exactly that disease biology. So, that is also a huge part of treatment selection, and we call those disease factors. 

Katherine Banwell:

Why is molecular testing important following an AML diagnosis? 

Dr. Daniel Pollyea:

Right. So, this basically just gets into what we were just discussing. So, that molecular testing is the testing that will tell us all the mutations that make up your disease biology. And so, that is crucial for prognostication, but also treatment selection.  

And frankly, also when thinking about how to potentially cure your disease, those will be factors taken into account to make decisions that are pretty significant, such as should you receive a bone marrow transplant at some point in the future or not. And the reason it’s so crucial to get this done at diagnosis is, after diagnosis, we start a treatment, and hopefully we put your disease into a remission. And at that point, we no longer have access to your disease cells.  

They’re gone, or they’re too low to even measure. And so, we need to get this information at diagnosis so that we can have it later on so that we can really understand your disease and make the best treatment plan for you.  

Optimizing Ovarian Cancer Care: Genetic Testing and Treatment Approaches

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What’s vital for ovarian cancer patients to know about treatment options and approaches? Expert Dr. Ramez Eskander from UC San Diego Health discusses chemotherapy, surgery, the importance of molecular testing, treatment approaches for optimal outcomes, and proactive patient advice. 

[ACT]IVATION TIP

“…ask the questions of your provider. Understand, did you have genetic testing? Did you have molecular tumor testing? And do the results of that genetic or molecular tumor testing impact the treatment recommendations for maintenance therapy? I want to make sure everybody feels empowered to ask those questions and have those answers.”

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What Should Ovarian Cancer Know About Immunotherapy and Targeted Therapies

Transcript:

Lisa Hatfield:

Dr. Eskander, for someone who is newly diagnosed with ovarian cancer, what are the most common treatment options available, and how can patients know which treatment plan is best suited for their specific situation?

Dr. Ramez Eskander:

Newly diagnosed ovarian cancer is managed utilizing chemotherapy and surgery. The order can vary depending on the specific patient, how they present, their cancer burden, whether you receive chemotherapy, surgery, followed by chemotherapy, or surgery and chemotherapy. The drugs, the backbone of treatment, are very similar, that is, two chemotherapy drugs called carboplatin (Paraplatin) and paclitaxel (Taxol). I will say that there are other drugs used in the front line. Another drug that’s commonly used is a drug called bevacizumab or Avastin. This is called an anti-angiogenic drug.

And we’ve also identified biomarkers that have really transformed front-line management. Any and every newly diagnosed ovarian cancer patient should have genetic testing because about 15 percent of ovarian cancers can have a genetic predisposition, meaning that you’ve inherited a gene that increased your risk of developing the cancer. And that’s critically important for the treatment of that patient, but also for any family members who would benefit from what we call cascade genetic testing, they would get tested. And if they were identified to have the gene, they could be followed and have risk-reducing surgery.

The reason this molecular testing of ovarian cancer and again, every patient should have genetic testing and molecular testing is critically important is it is informing maintenance treatment strategies. We’ve now conducted several clinical trials that show the utilization of a class of drug called PARP inhibitors. These are oral pills. When we use these medications in patients who have a BRCA mutation, there is a dramatic improvement in clinical outcome.

So every advanced stage ovarian cancer patient should be tested. And for those who have a BRCA mutation, every one of those patients should be treated with a maintenance PARP inhibitor. And maintenance meaning after you finish the chemotherapy drugs that I mentioned, you go on to that maintenance PARP inhibitor. And we’ve also had clinical trials that have expanded that opportunity, because not only are we looking at patients that have a BRCA mutation, but we’ve now expanded and incorporate into patients who are homologous recombination-deficient, or HRD test-positive.

Because studies have shown that when you give the PARP inhibitors in combination with bevacizumab, the drug that I alluded to a moment ago, you can again get a very significant improvement in clinical outcome including an improvement in overall survival. So biomarker testing, genetic testing, chemotherapy plus surgery is a backbone but importantly utilizing that molecular testing to inform maintenance treatment strategies which have clearly improved clinical outcomes, and these are all very critical conversations to have with the physician who’s taking care of you.

And for me, my [ACT]IVATION tip here is ask the questions of your provider. Understand, did you have genetic testing? Did you have molecular tumor testing? And do the results of that genetic or molecular tumor testing impact the treatment recommendations for maintenance therapy? I want to make sure everybody feels empowered to ask those questions and have those answers.

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When Should Myelofibrosis Mutational Testing Be Repeated?

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When should myelofibrosis mutational testing be repeated? Dr. Pemmaraju discusses the importance of retesting at key points and how mutations impact care and treatment plans. 

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

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 Myelofibrosis Care | The Impact of Test Results

Myelofibrosis Care | The Impact of Test Results

Transcript:

Katherine Banwell:

“I understand that mutational testing should be done at diagnosis. Is there a point where there would be a need to repeat this test?”  

Dr. Naveen Pemmaraju:

Oh, that’s an awesome question. So, we were mentioning that earlier. I do believe and I advocate that all patients should have molecular testing, particularly now as it’s more available widely before it wasn’t. Again, we level set what we’re talking about. In myelofibrosis, three common driver mutations, JAK2, CALR, MPL makes up about 90 percent. 

Then in addition to that, there’s the triple-negative, and you usually find an additional mutation. Then on top of these big three, it’s common to have co-mutations, ASXL1, etc. What we found in this MIPSS score that we just mentioned ties into that. We found now that for the first time, we can incorporate these molecular findings to prognosticate for the patients. That’s why it’s important to check them. So, to this question by Joel, yes, if you have access and availability, not only checking it at baseline but later on at a provoking event.  

So, at the time of relapse, progression, going onto a clinical trial, just to name three of several. I think it’s a good idea to recheck the molecular status. The problem and barriers are what you would expect, cost, expense, access, availability, justification, etc., etc. So, it’s not a mandatory part of the field, especially in the standard of care, non-research aspect. However, if we can get to the point where we can do that, it would be nice and helpful because these mutations change, they’re dynamic.   

You can have negative for mutation at baseline, positive, and even vice versa, depending on therapies. Are you going to go for a transplant? Are you going to go to a clinical trial? Are you changing therapy? It would be nice to know. 

Myelofibrosis Care | The Impact of Test Results

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How do test results impact myelofibrosis care? Dr. Naveen Pemmaraju outlines essential tests like bone marrow biopsies and molecular testing and shares how results may guide treatment and prognosis.  

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

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 When Should Myelofibrosis Mutational Testing Be Repeated?

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Transcript:

Katherine Banwell:

Let’s talk about test results. What sort of tests should be done following a myelofibrosis diagnosis?  

Dr. Naveen Pemmaraju:

Well, I think this is something that’s an active area of evolution. I think the good news is I can give you a few standard items. I think most, if not all, of our patients, will require a bone marrow biopsy to be done at baseline and possibly even later on to assess the status of the therapy. Now, in some cases, that may not be available or accessible due to patient preference or comorbidities.  

However, a bone marrow biopsy is a way to look inside and see how the bone marrow tissues are doing. Outside of that, for the blood tests, the two most critical sets are what we call a CBC and a CMP. So, CBC complete blood count. This is where you get your hemoglobin, platelets, and white blood cell count, very important to know at baseline and dynamically.  

Then the complete metabolic profile is very important, Katherine because we need to know how the potassium, kidney function, and liver function are doing. Then finally, I would also say you’ll see your provider add in other blood tests over time, depending on the particular case. Thyroid testing if it’s needed in the case of fatigue, just to name one example. So, I think these are the main categories.  

I think what’s also interesting over time is that this is an issue with us as well in the MPN clinic. You end up seeing your MPN provider and team so much that it’s easy to forget and lose sight of the primary care items too. So, this is a good time to remind folks to stay in touch with their MPN team, the provider, and their caregiver, whether it’s colonoscopies, mammogram, or prostate. I remember over the COVID pandemic time, especially, a lot of that was either sacrificed, forgotten, or on purpose put aside. So, let’s remind people in 2024 to remember to have that partnership as well.  

Katherine Banwell:

How does molecular testing affect treatment options and prognosis? 

Dr. Naveen Pemmaraju:

Right, yeah, I haven’t mentioned that yet because that’s something that we’re trying to layer into. I do find that to be the standard of care now in the treatment of myelofibrosis. What you’re asking about is very important. So, outside of the normal labs in bone marrow morphology, seeing what it looks like under the microscope, we’re starting to add three or four items. One is called cytogenetics, that’s chromosomes. You’re born with 46, so 23 from mother, 23 from father, for example, 46 total.  

Even though most people are not born with an MPN per se, those chromosomes can change and become abnormal over time. So, we want to know that, and that can help us tell low versus high versus intermediate risk. Two is the molecular test you ask about. Most people have heard of JAK2, that’s the most common out of myelofibrosis, maybe 50 percent to 60 percent of cases, JAK2V617F. However, did you know there’s also CALR, which is the second most common molecular mutation, and then MPL. 

Those three are the big three driver mutations. They make up roughly about 90 percent of our cases, 10% being so-called triple-negative. So, you’re negative for all three. When you do deeper sequencing, which is available now clinically, and we check that here, you will find almost always, some other mutation, ASXL1, EZH2, SRSF2, etc. It becomes an alphabet soup very quickly. However, I think basically you should know that there’s JAK2, CALR-MPL, the big three driver mutations, and additional molecular mutations.  

So, therefore we and others believe you should check these as standard. Finally, there’s also flow cytometry. Just want to give a shout-out to that. Most people haven’t heard of that. When you send your bone marrow for testing, in addition to the pathologist looking under the microscope with the human eyes, there’s also a test that does side scatter of light called flow cytometry. That helps to look at a deeper level, maybe the thousandth, maybe even down to the millionth level, what these cancer cells do. 

Katherine Banwell:

What sorts of questions should patients be asking about test results?  

Dr. Naveen Pemmaraju:

I think the number one and number two questions that I advocate for patients or on programs like this, I think the one question that may help a lot is this question of when you hear all the data and ask the question, “Hey, is there any other questions I should be asking that I’m missing?” It’s an interesting question, right? It’s almost a meta, right, kind of a situation. However, when you ask that, every time I’ve been asked in the clinic, it makes me pause and say, “Now that you mentioned it, X, Y, and Z.”  

So, I think it’s a good one to ask either your physician or whoever healthcare provider is in the room, again, nurse, or PA. It’s an interesting one, right? It kind of makes someone maybe even put themselves in your shoes. So, I like it as a device to make people pause in a busy clinic. Yeah, the second question that I think is a good one is to say, “While things are going well right now, I wanted to ask you, doc, what are some things that could happen in the next six months, one year, or two years, adverse events or abnormal things, and is there something I can do to plan for it?” 

Again, it may be somewhat of a theoretical question. The doctor may say, “Okay, right now things are going well,” but it kind of makes people think about contingency plans, and alternative things. Well, now that you mention it, there is this one side effect of this drug. I don’t know, I think those are two kinds of go-to questions that I want people to be equipped with. 

Collaborate | Which Treatment is Right for YOUR CLL?

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How can chronic lymphocytic leukemia (CLL) patients work with their healthcare team to find the right treatment approach for their individual disease? This animated video reviews important testing, factors that impact options, and advice for discussions with your provider. 

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How Can You Engage in Your CLL Care? 

Transcript:  

 Dr. Johnson:

Hello again! I’m Dr. Johnson, a physician specializing in blood cancers. And this is Joseph, who is living with chronic lymphocytic leukemia—CLL for short. 

Joseph:

Hi everyone! In today’s video, Dr. Johnson and I will discuss the factors that go into determining the most effective treatment for a patient’s CLL and the critical role that biomarker testing can play in helping to make those decisions. 

Dr. Johnson:

Exactly, Joseph—choosing the right treatment for CLL can be complex and depends on characteristics that are unique to each patient. And these factors may include: 

  • The stage and aggressiveness of the disease.  
  • The patient’s overall health, including their age and any coexisting conditions. 
  • Any symptoms they may be experiencing.  
  • And the specific characteristics of the CLL cells, such as genetic mutations or chromosomal abnormalities. 

Joseph:

So, Dr. Johnson, how do these genetic mutations and abnormalities impact treatment choices? 

Dr. Johnson:

This is where biomarker testing comes in, Joseph. This involves analyzing the cancer cells to identify specific genetic mutations or abnormalities, referred to as biomarkers.  

These biomarkers can provide valuable information about the disease and how it might respond to specific treatments. 

Joseph:

OK. So, Dr. Johnson, what kinds of biomarker tests are typical for CLL patients? 

Dr. Johnson:

Good question! Common biomarker tests for CLL include identifying mutations in the IGHV gene, TP53 gene mutations, and chromosomal abnormalities like deletions in chromosomes 11q and 17p. The results help determine the most effective treatment strategy.

Joseph:

Got it. So, how exactly does this information impact the treatment plan? 

Dr. Johnson:

Well, understanding the presence of mutations or abnormalities is crucial. For example, patients with a TP53 mutation or 17p deletion may not respond well to standard chemotherapy. Instead, targeted therapies or newer treatments might be more effective. Having this information allows the healthcare team to personalize the treatment plan to help achieve the best possible outcome. 

Joseph:

When I was diagnosed, I underwent biomarker testing. Then Dr. Johnson and I discussed how the results could guide my treatment plan. It reassured me that the treatment was tailored to my specific disease. 

Dr. Johnson:

Absolutely, Joseph. Ensuring you have had all the necessary tests done before starting treatment is essential. Joseph, can you share advice for discussing treatment options with your doctor? 

Joseph:

Sure, here’s what I’ve learned: 

  • First, educate yourself: Learn about the types of biomarker tests available and what they can reveal about your CLL. 
  • Next, ask questions: Don’t hesitate to ask your doctor how test results will impact your treatment plan. 
  • And discuss your goals: Share your concerns about treatment side effects or the impact on your lifestyle. 
  • Finally, don’t forget to bring a support system: Have a loved one accompany you to appointments to help take notes and to provide support. 

Dr. Johnson:

Those are great tips, Joseph. Being proactive and informed can make a big difference in managing your CLL. 

Joseph:

Thank you for joining us today. For more information and valuable resources, visit powerfulpatients.org/CLL. Take care, and stay empowered in your CLL journey! 

Collaborate | Which Treatment is Right for YOUR CLL? Resource Guide

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How Can Rural Physicians Improve Myelofibrosis Identification and Referrals?

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How can myelofibrosis be better identified and referred by PCPs? Expert Dr. Abdulraheem Yacoub discusses strategies for rural myelofibrosis care, partnerships between hematology centers and community oncologists, and patient advice for optimal care. 

[ACT]IVATION TIP

“…to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.”

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See More From [ACT]IVATED Myelofibrosis

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Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials

 Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Given how rare myelofibrosis is, how can primary care physicians in rural areas be better equipped to recognize and refer patients with suspected myelofibrosis?

Dr. Abdulraheem Yacoub:

Myelofibrosis is a rare malignancy that belongs to the family of myeloproliferative neoplasms. These cancers present with abnormal blood counts and increased constitutional symptoms. Many of those symptoms are not specific to myelofibrosis, and many of the laboratory abnormality is also not specific for myelofibrosis. So for a primary care physician, it might be a challenge to actually make that diagnosis or recognize the unique presentations of myelofibrosis. I think what primary care physicians should be very savvy about is to be aware of abnormal labs or abnormal symptoms and to try to refer the patients for a hematologist for initial diagnostic workup.

Further classification or the complexity of making the classification in the diagnosed myelofibrosis is probably above what a primary most primary care physicians are able to do because that would require molecular testing and a bone marrow examination and maybe imaging studies. And for that these will require the expertise of a hematologist oncologist. And I think the role of the primary care physician is to get the patient with the right trigger or the right abnormality to the specialist. And that will be a successful achievement from the primary care physician. And then what happens after that would probably require more involvement of the hematology oncology team and additional workup and referral to a tertiary center afterwards.

Lisa Hatfield:

I do have one follow-up question to that also. I have a type of blood cancer, not an MPN, but if I lived in a rural area, I would want to know, okay, my primary care physician referred me on, I’ve seen a hematologist, but I have a local oncologist, a general oncologist in my rural area. Would the specialist require me to go back and forth constantly to be seen in a different facility or is it possible that I could be seen by my general oncologist?

Dr. Abdulraheem Yacoub:

So there are many forms of partnership between centers that provide tertiary care along with the community oncologists and hematologists. And there are so many forms of how this can be conducted. And the main mission for us doctors is to provide the best care for the patients and also to provide good communication with their care team locally. And that really is a duty for every individual and all the parties involved in patient care.

So we would love to provide the best care for patients, but also through involving their local providers. This could be a one-time opinion with a tertiary center with a management plan that can be passed on to their local doctor. It could be a collaborative long-term relationship where patients have to see the tertiary center once a year and then their plan is updated every year with specific instructions and guidance to their local doctors. Or it could require more involved care with the tertiary center, especially if there’s a clinical trial that is needed or research options that are not available locally or therapeutics that are of high risk that cannot be delivered locally. Unfortunately, in some occasions, patients will have to drive or commute to the tertiary center on a regular basis.

Lisa Hatfield:

So there are many forms of such collaboration that happen, depends on the options, the treatments, and the needs.

Dr. Abdulraheem Yacoub:

My [ACT]IVATION tip is to not ignore subtle clues in health. So for patients who have lived a healthy life, the new onset of symptoms or the new onset of laboratory abnormality that is not explained should trigger additional steps and should not be ignored. All health problems can be best managed early on and then delaying access to care, delaying workup is not in anybody’s best interest.

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Collaborate | How Is CLL Treated?

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Collaborate | How Is CLL Treated? from Patient Empowerment Network on Vimeo.

.What are the common chronic lymphocytic leukemia (CLL) treatment approaches? This animated video reviews treatment types, essential testing, and provides guidance for engaging in treatment planning.

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How to Make Confident and Informed CLL Treatment DecisionsHow to Make Confident and Informed CLL Treatment Decisions Collaborate | Understanding Your Role in Your CLL Care

Collaborate | Understanding Your Role in Your CLL Care

 Collaborate | Understanding YOUR CLL Diagnosis

Collaborate | Understanding Your CLL Diagnosis

Transcript:  

Dr. Johnson: 

Hello again! I’m Dr. Johnson, here with another video in the CLL Collaborate series from the Patient Empowerment Network. In this video, we’re going to review the common types of CLL treatment. 

Joseph: 

And I’m Joseph, Dr. Johnson’s patient. Welcome back! 

When I was first diagnosed, Dr. Johnson told me that my CLL wasn’t yet ready to be treated and that I was in the watch-and-wait period. I was surprised by this information—it felt strange to be diagnosed with cancer and to not move forward with treatment immediately. 

Dr. Johnson, can you please explain this approach? 

Dr. Johnson: 

I would be happy to. Since CLL may grow slowly in some patients, instead of starting treatment right away, the patient’s healthcare team will monitor the disease with regular appointments and blood work.  

And as Joseph mentioned, this is called watch and wait.  

Joseph: 

Right. And some patients may never need treatment while others may start therapy later.  Dr. Johnson, what are some of the reasons that treatment would begin? 

Dr. Johnson: 

Anyone with a CLL diagnosis should be monitored closely, but an increase in a patient’s symptoms, anemia, or low platelet counts could indicate that it’s time to treat the CLL.  

Additionally, some patients may have a faster growing type of CLL that requires treatment upon diagnosis.  

Joseph: 

And when it was time for my treatment to begin, I remember we reviewed my options together, along with the goals of treatment and potential side effects.  

Dr. Johnson: 

Yes! It’s always important to set treatment goals with your doctor. Treatment goals vary by patient and help determine what is best for your unique CLL and your lifestyle.  

You should also have all essential testing prior to choosing an approach. Test results can help guide decisions and may show whether a particular treatment could be more effective for an individual patient. 

OK, let’s walk through the most common types of treatment: 

  • There is an approach commonly called F-C-R, which is two chemotherapy drugs that are combined with a targeted treatment called a monoclonal antibody.  
  • Additionally, there are several other drug therapy classes currently approved to treat CLL. They include: 
  • Immunotherapy, including monoclonal antibodies 
  • And targeted therapies 
  • If the CLL isn’t responding to chemotherapy or targeted therapy, your doctor may discuss options like stem cell transplant, CAR T-cell therapy, or a clinical trial. 

Joseph: 

When it was time to treat my CLL, Dr. Johnson helped me understand what was available for me.  So, how can you feel confident when considering your treatment options? 

  • First, consider consulting with a CLL specialist who is well-versed in ALL available treatment approaches, including clinical trials. 
  • Set treatment goals with your team and ask questions if you are confused about the proposed plan. 
  • Ask if you have had all essential testing and discuss how results may impact your treatment options. 
  • Finally, request educational resources to learn more about each approach on your own. Watching videos like this is a great start! And, you can visit powerfulpatients.org/CLL for more resources. 

Dr. Johnson: 

Great advice, Joseph! You should also bring a friend or loved one to your appointments, so you can absorb the details and take notes as a team.  

Joseph: 

Thanks for joining us! Don’t forget to download the guide that goes with this video—it can help you retain what we’ve covered. 

Collaborate | Collaborate | How Is CLL Treated? Resource Guide

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Collaborate | Understanding YOUR CLL Diagnosis

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Collaborate | Understanding YOUR CLL Diagnosis from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about their diagnosis? This animated video explains what CLL is, how it is diagnosed, and provides advice for being proactive in care decisions.

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Who Is on a Patient’s CLL Care Team?

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Transcript:  

Dr. Johnson: 

Hello again! I’m Dr. Johnson, and I’m a doctor who specializes in chronic lymphocytic leukemia, or C-L-L. And this is Joseph, one of my patients. Welcome back to the CLL Collaborate Series! 

In the first video, Joseph and I talked about the important role patients play in their care and treatment decisions. 

Joseph: 

That’s right! And from the start, patients and their care partners should understand what the diagnosis actually MEANS.  

Dr. Johnson, can you please explain what CLL is? 

Dr. Johnson: 

I’d be happy to. CLL begins in the cells in the bone marrow—white blood cells called lymphocytes–and then goes into the blood. It’s the most common type of adult leukemia.1 

The condition is typically diagnosed through a blood test and confirmed by a bone marrow biopsy. Each patient is different, but some people may have symptoms that lead to testing for CLL. 

Joseph: 

And when I was diagnosed, I was having frequent colds and sinus infections. Dr. Johnson, what are other symptoms? 

Dr. Johnson: 

Like Joseph mentioned, a high risk of infection is associated with CLL. Other common symptoms may include:  

  • Fatigue 
  • Night sweats 
  • Enlarged lymph nodes or spleen 
  • Fever  
  • And unintentional weight loss 

Joseph: 

And it’s important to get an accurate diagnosis to understand how an individual patient’s CLL may behave. Dr. Johnson, what testing helps you learn more about the specifics of a patient’s disease? 

Dr. Johnson: 

This is important as no two CLL patients are the same. So, we should conduct essential testing at diagnosis to get more information about how a patient’s CLL may progress, and the results may even help guide treatment options.  

In addition to a complete blood count—or CBC, tests may include: 

  • Flow cytometry testing 
  • Cytogenetic testing  
  • Fluorescent in situ hybridization (FISH for short) 
  • Molecular testing  
  • And imaging tests, such as a CT scan 

Your doctor should review the results of these tests with you and make sure you understand how they impact your CLL care and treatment decisions.  

Joseph: 

Right! It’s a good idea to discuss the results with your doctor before you begin conversations about your treatment options.  

So, what other proactive steps can you take to understand your CLL diagnosis?  

  • Make sure you understand the specifics of your unique CLL, how it will impact your lifestyle, and if there are symptoms you should be looking out for. 
  • Ask whether you have had all key testing and discuss the results with your doctor. 
  • Find out if there are any indicators that your CLL is high-risk or fast-growing.  
  • And finally, when it’s time to make treatment decisions, ask which tests will need to be repeated. 

Dr. Johnson: 

Great advice! Don’t forget to download the resource guide that goes with this video—it provides an overview of the information we covered. 

Joseph: 

You can also visit powerfulpatients.org/CLL to view more videos with Dr. Johnson and me. Thanks for joining us!  

Equitable Access: Overcoming Challenges in Precision Medicine for Veterans with Lung Cancer

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Equitable Access: Overcoming Challenges in Precision Medicine for Veterans with Lung Cancer from Patient Empowerment Network on Vimeo.

Do veterans with lung cancer face barriers to precision medicine and targeted therapies? Expert Dr. Michael Kelley from Duke University School of Medicine discusses past and current access to precision medicine, the National Precision Oncology Program, and proactive patient advice to ensure you receive essential testing and optimal care.

[ACT]IVATION TIP

“…if you have advanced lung cancer, ask your provider, what testing has been done on my tumor, what are the results, and what does that mean for my treatment?”

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Navigating Lung Cancer Clinical Trials: VA Support and Resources for Veterans

Transcript:

Lisa Hatfield:

Dr. Kelley, what specific challenges do veterans face in accessing precision medicine? And how can these challenges be mitigated to ensure equitable access to advanced treatments?

Dr. Michael Kelley:

So before 2016, the first cancer moonshot, there were major challenges in, not only in the VA, but across the country to access to precision medicine in the oncology field. We launched in that year, and if really now provide access to cutting-edge precision oncology technology, which is a lot of molecular testing and the expertise to be able to interpret the results of that test to apply it to individual patients. So I think we have advanced to the point where this should not be a barrier anywhere in the VA system, but I would say that only about half of veterans are enrolled for VA care.

And outside of VA there still are areas that have a variety of different barriers to getting the testing done on the tumor samples in a way which informs the treatment decision-making for patients. So this is very important. My activation tip for this is to be sure to ask your provider whether your tumor has been tested for molecular tests, and if so, what the results of those tests are, and how that impacts the treatment of your cancer.

Lisa Hatfield:

Dr. Kelley, can you speak to your research around barriers to prescribing targeted therapies for patients with non-small cell lung cancer with highly actionable gene variants, and what should patients and their care partners be aware of related to these barriers?

Dr. Michael Kelley:

So one of the key pieces of information that your providers need to know in order to, how to treat your advanced stage lung cancer is what are the molecular alterations in your tumor, and what types of proteins are expressed on the surface of the proteins that allows them to make good choices around immune therapy and another group of therapies called targeted therapies, and that can make major differences in your care and your outcome.

So when we first started using this type of testing, in particular the genetic testing of tumor samples, there was a lot of complexity in the results that was not well understood by the oncology providers, because it was new and very complex. So VA has instituted a program to provide that testing and the expert consultation service to be able to interpret those results.

And so when we set up that program, which is called the National Precision Oncology Program, we did a study, looking to see how many patients who should have gotten a targeted drug actually got that drug. And the results were similar to what has been reported in other healthcare systems. And that is, is that less than every patient was getting the targeted therapy, and it was about somewhere around a third of patients who did not get the therapy that would’ve been indicated by that test result.

So we wanted to know what the reasons were, and I think we’ve addressed a lot of the reasons that we came upon. A lot of it is education and making sure that the information from those tests gets to the provider and gets to the patient, and that comes with an understanding of what those test results mean. So my activation tip is, if you have advanced lung cancer, ask your provider, what testing has been done on my tumor, what are the results, and what does that mean for my treatment?

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Advanced Non-Melanoma Skin Cancer | Establishing a Treatment Plan

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Advanced Non-Melanoma Skin Cancer | Establishing a Treatment Plan from Patient Empowerment Network on Vimeo.

What advanced non-melanoma skin cancer therapies might comprise a treatment plan? Dr. Soo Park discusses therapy types, the impact of molecular testing, and shares key questions to ask about your treatment plan.

Dr. Soo Park is a Medical Oncologist at Moores Cancer Center at UC San Diego Health. Learn more about Dr. Park.

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Advances in Non-Melanoma Skin Cancer Treatment and Monitoring

 Advice for Accessing Advanced Non-Melanoma Skin Cancer Clinical Trials

Advice for Accessing Advanced Non-Melanoma Skin Cancer Clinical Trials

Transcript:

Katherine:

So, what is the typical treatment path for someone who’s been diagnosed at this stage of disease, at the advanced stage?  

Dr. Park:

Yeah, so, before – and I really love this question, because in the past, we did not have that much to offer patients except surgery, and then they would get a very extensive surgery. They would get reconstruction. But sometimes it’s hard to get reconstruction after a really major surgery, because you have to heal, and you have to get better. And then, after the surgery, you would typically get radiation to try to prevent the cancer from coming back. But nowadays, we have immune therapy.  

So, immune therapy is a certain type of IV medicine that’s not chemotherapy that works really well for squamous cell skin cancer. And so, nowadays, we can actually give this to you before surgery. So, we can give you a couple of doses of this IV immune therapy medicine before surgery, and really shrink your tumor quite dramatically.  

And then, that makes the surgery a lot easier, smaller. And then, sometimes after we do the surgery, and then we look at what the surgeon has taken out under the microscope, we can’t see any tumor left. And that’s really amazing, because then sometimes we don’t even need to do radiation. So, not only did we make your tumor a lot smaller, sometimes we completely made it go away.   

And then, if that happens, sometimes we don’t even need to do radiation. So, it really helps the patient. And I think this is really important, because this is somewhat newer data, and I still see patients that get referred to me for just surgery. 

But I think a lot of head and neck surgeons are now aware of this data. And so, this is something that’s, I think, becoming more common.  

Katherine:

What about targeted therapies?  

Dr. Park:

So, targeted therapies are, I think, mainly used in basal cell skin cancer. So, targeted therapies are typically oral medications or pills. They’re called targeted, because they’re used in cancers that have a specific target. So, for example, the basal cell skin cancer, the target is the hedgehog pathway, because the hedgehog pathway is abnormal. And so, these pills, they specifically target the hedgehog pathway. But for squamous cell skin cancer, we don’t have any true targeted therapies.  

Katherine:

As patients are reviewing their options with their doctor, what questions should they be asking about their care plan? 

Dr. Park:

I think all patients should be asking, what the goal of the treatment is. They should be asking, especially if they’re being offered any type of treatment, what are the side effects? What can I expect from this, in terms of how much better will it make me? They should really ask about how often the treatments are given, because some patients have transportation issues or financial barriers, and we want to know about that, so we can help them.   

Patients should also ask about any necessary blood work that is needed. They should ask what can they do in the future to prevent a similar type of cancer happening, and just make sure that they’re talking to their families, because I think social support is really important.  

Katherine:

Yeah. I think it’s important for patients to ask how the cancer is going to impact their lives overall, really.  

Dr. Park:

Yeah, exactly, because it will affect every single aspect of your life: your social life, your family life, your mental health, your physical well-being. And so, it’s really important to know and work with your doctor on what you think you can expect now, and also in the future.  

Katherine:

Yeah. Well, how do test results impact treatment options, then? 

Dr. Park:

So, there are sometimes when we have a skin cancer that actually happens inside a gland in your face. It’s one of the salivary glands in your face. And we sometimes don’t know if it’s a skin cancer that happened on the outside and that spread to the gland inside your face, or did it actually first just start inside the gland? Because a cancer that just starts inside the gland is not technically a skin cancer. It’s a different type of head-and-neck cancer, and it’s very, very rare, and it’s treated very differently.  

So, nowadays, because we have that molecular testing, like I talked about, I see lots of patients where they have a cancer in their salivary or parotid gland. We don’t know where it came from. And so, we send it for molecular sequencing or molecular testing, and there are certain clues in the molecular testing that can tell us, oh, it probably actually came from a skin cancer.  

You just didn’t know it; or maybe it’s the skin cancer that kind of was there and went away; or maybe it was a skin cancer you had like five years ago, that you didn’t think caused any problems, but it did spread, because knowing where it came from through molecular sequencing, if it’s really hard to find out where, really impacts the treatment I may give you. 

Katherine:

What about side effects of these therapies? How are they managed?  

Dr. Park:

Yeah, so, for immunotherapy, there’s one specific side effect that we don’t find with chemotherapy, and that’s really when your body’s own immune system kind of ends up attacking the other parts of your body. And so, it can cause inflammation of other organs. And so, for patients that experience that, it can be very mild, and it can be all the way to very severe, requiring a patient to go to the hospital.  

But in all cases, we just have to tell the immune system to quiet down a bit, because it’s attacking your body. And so, the way we do that is we give the patient steroids. And so, if it’s really mild, maybe you have like a small rash; maybe we can just give you a steroid cream, or maybe we have to give you a steroid pill. But sometimes, if it’s really severe, we have to tell you to go to the hospital so you can get steroids through your IV.