Tag Archive for: Quality of Life

Myeloma Expert Explains Diagnosis and Treatment for Newly Diagnosed Patients

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Myeloma Expert Explains Diagnosis and Treatment for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

How can newly diagnosed multiple myeloma patients be oriented to their diagnosis and treatment? Dr. Sikander Ailawadhi from the Mayo Clinic shares key points he explains to patients about myeloma origination, tests, symptoms, treatment, and ongoing care.

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Transcript:

Lisa Hatfield:

So now we’re going to jump into our questions. So, thank you again, Dr. Ailawadhi. So we have a patient asking for newly diagnosed patients, say a patient comes into you, maybe they were sent by their community oncologist or a family practitioner, something…I have myeloma, doesn’t know anything about it. Have even heard of it before. How do you start that conversation? How did you explain myeloma and the treatment and very importantly to the patient, how do you explain the prognosis when you know it’s not curable yet?

Dr. Sikander Ailawadhi:

An extremely important question. And I agree that we should be starting at the beginning, so I think I had the privilege of working at an institution where we tend to spend a lot of face time with the patient, so typically in the outpatient, I have at least about an hour of time blocked is how we’re set up. So at that visit, first of all, I’m hoping that a patient comes in with a caregiver, but if they don’t have a caregiver with them, I start off by asking them, Is there someone they would like us to call during the visit? Because it is always better to have a caregiver or an extra set of ears listening in, and once that has started, then I typically will explain to them literally from what is a plasma cell, what is the role of a normal plasma cell, because that tells us the type of proteins plasma cells produce.

And that leads us to how a plasma cell can become cancerous and lead to multiple myeloma, what are the signs and symptoms of multiple myeloma? What are the markers, these protein markers that come in the blood and are picked up as markers of disease for patients, because again, patients need to know what they’re looking for in the labs that are drawn, so very frequently.

We talked about the role of a bone marrow biopsy, a lot of times it has been done, sometimes it has to be done after that visit, we talk about the genetic mutations in plasma cells that can be seen because that is what helps determine the risk category of standard risk or high risk.

I do offer to patients about discussing the prognosis, again, it’s a good time where we know that the average survival of patients is close to about 8 to 10 years when they look at a general national data, U.S. data, but all the large centers, all of us who focus on myeloma, we have several patients who are living quite a bit in excess of 10 years, so more hopeful time, but it is important to put that prognosis in perspective with high risk or standard risk disease that can be determined based on mutation testing from the plasma cells from the bone marrow, something called the FISH test, part of it is to explain to the patient the prognosis, but other reason is also because sometimes that can determine the type of treatment, and this also importantly tells the patients about their disease much better, so they can be more educated, they can interact with other patients, they can ask the right kind of questions, and they can understand their disease process and follow-up better.

Now, after we have discussed all of this, we start talking about treatment, I can tell you when I talk to a newly diagnosed patient, I will tell them that in my way of thinking their treatment initially is broadly divided into three different discussions during three different visits. The initial visit is talking about any symptom or sign from the myeloma, increased calcium, kidney dysfunction and tumors, how are we going to tackle that? So we will come up with the right “induction regimen.” I really don’t think one-size-fits-all, so based on the patient’s age, comorbidities, other diagnosis or the treatment drugs, family support system, financial situation, there are so many factors that go into it.

We come up with an induction regimen, I’ll tell them that the second component is about controlling all the symptoms and manifestations of the disease, whether that means radiation therapy, bone-strengthening agents, multivitamins, minerals, whatever we need to do as supplements, then we’ll talk about…starting that treatment. What does it involve? Side effects, we will set that path, you will notice I have not even talked about transplant, and I’ll tell the patients that only thing I mentioned to patients in that first planning, visitors and down the road, we will be talking about transplant. Today is not the time, because in my experience at the moment, we start talking about bone matter, transplant tenants, everything was out the window. That’s what patients think about…and I don’t want them to do that.

The second part of my discussion comes around a month or so into the treatment, because by then we want to start seeing some responses, some symptoms turning around, but that month two to three is very importantly the time to rebuild things. Does the patient need to go to physical therapy, pain control? Supportive or palliative care services? Lipoblasty or tuboplasty to strengthen their spine. I mentioned physical therapy, I’ll say it again, because I really think that’s very, very, very important for controlling the pain and supporting the movement and quality of life, managing any side effects, making sure that the dose is correct, do we need to tweak the doses, etcetera. And at that visit is tell them that, “Okay, very soon we will be talking about…we’ll be going into the details of a transplant, we will be passing along more information to you. But at your next visit, which would be probably at that two- to three-month mark, two- to three-cycle mark,” is when I will really sit and talk to them about our transplant…

So for me, the main transplant discussion comes on that cycle to recycle the two to three seconds have already got in patients feeling better, they are much more receptive for the next phase of treatment, which is when we talk about transplant, that’s how I do it, typically. And then we’ll explain a lot about what this transplant need…what does it involve? Caregiver needs a supportive care, vital organ testing, bone marrow biopsy, response depth, MRD, all of that.

So for me, this is kind of the journey that a patient, newly diagnosed patient goes through for the first few months, then their transplant, then their maintenance and hopefully good long disease control state.

Lisa Hatfield:

Great, how often do you expect a patient will have to have appointments during that…talk about the induction phase, the first month to three months, how often do you think they will have appointments, whether it’s for treatment or to come see you? What should they expect that way?

Dr. Sikander Ailawadhi: 

Sure, so the regimens that we typically use in myeloma, some of them, the drugs are given twice a week, a majority of the way we give the drugs, it’s once a week, so one to two times a week would be visits, we do the labs for the first month, we will do sometimes every week, but by the time the patient has gone to the second or third cycle, once every two to four weeks, labs are reasonable because by then things have stabilized, but the treatment still would, I think the once or twice every week depending upon the regimen that they have, we don’t typically see the patient for a clinic appointment every time, but a lot of centers do, so every time the patient comes, as I said, one to two times a week, typically that translates to about four visits in every three to four weeks they coming on the cycle, some regiments are three weeks regiments, some regiments are four week regiments, etcetera.

So patients come, I can say that the first one to two months are most intensive for follow-up for labs, we wanna make sure everything’s been fine, been start reading the treatment, they are not having side effects it and etcetera, and then things can be spaced out a little bit for the next couple of months before we go into the transplant thing, if the patient is going for transplant.

Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer

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Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer from Patient Empowerment Network on Vimeo.

Dr. David Carbone debunks common misconceptions about non-small cell lung cancer, including treatment effectiveness, age and lung cancer, and patient’s quality of life after treatment.

Dr. David Carbone is a medical oncologist and professor of internal medicine at The Ohio State University. Dr. Carbone is also co-leader of the Translational Therapeutics Program at the OSUCCC – James, where serves as director of the Thoracic Oncology Center. Learn more about Dr. Carbone, here.

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Transcript:

Katherine:                  

A lung cancer diagnosis often has a certain stigma associated with it, but the majority of that is not based in fact. So, I’d like to play a little game with you called Fact or Fiction. All right? All right, first one. Fact or fiction: Lung cancer is a disease of the older population.

Dr. Carbone:              

If you have lungs, you can get lung cancer. That’s it. I’ve seen 20-year-old lung cancer patients. So, I think it can happen to anybody, and unfortunately, things like the CT screening programs are limited to people over the age of 50, but I’ve had many patients in their 30s and 40s. So, if you have lungs, you can have lung cancer.

Katherine:                  

Okay. Next one, fact or fiction: Quality of life is greatly diminished after undergoing treatment for lung cancer.

Dr. Carbone:              

I completely – fiction. I actually tell people often their quality of life is dramatically improved after starting treatments, and that’s my goal.

And with the new treatments, that’s often true. People will tell me within a week that they feel so much better on the treatment than they did before. So, that’s our goal. Our goal is not to make you feel worse. Our goal is to make you feel better.

Katherine:                  

Of course. All right, last one. Fact or fiction: There are no effective treatments for advanced lung cancer.

Dr. Carbone:              

So, the average survival for lung cancer years ago was four to six months from the time of diagnosis to death. That’s bad. And now, we are seeing in these subsets of patients years and years of survival with simple even pill-type treatments or immunotherapies. And even with the immunotherapies, sometimes you get treatments for a year or two, and then we stop; and we have patients who are years later, off of all treatments for metastatic lung cancer, still with no evidence of disease.

So, that is definitely fiction. We have highly effective treatments for lung cancer. But unfortunately, like everything else, and like I’ve said multiple times, it’s not true for everyone. Our treatments aren’t ideal. Sometimes for a particular patient we can’t find a matching treatment, the standard treatments don’t work, and nothing we can find makes a difference. But I would say you never know that until you try, and for the vast majority of patients, we can definitely give them prolonged, good-quality life. And so, I think that that’s definitely fiction.

What Treatments Are Available for Non-Small Cell Lung Cancer?

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What Treatments Are Available for Non-Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

 Dr. David Carbone provides an overview of currently available treatments for non-small cell lung cancer patients, including clinical trials, and reviews factors that influence treatment decisions.

Dr. David Carbone is a medical oncologist and professor of internal medicine at The Ohio State University. Dr. Carbone is also co-leader of the Translational Therapeutics Program at the OSUCCC – James, where serves as director of the Thoracic Oncology Center. Learn more about Dr. Carbone, here.

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Transcript:

Katherine:

What are the current approaches for treating non-small cell lung cancer?  

Dr. Carbone:

Well, that’s a complex question. The basic modalities are surgery, which is really still what we prefer, if we can detect it early; radiation therapy; and medical therapy.  

And medical therapy can be divided into chemotherapies of some sort – what we call targeted therapies, based on genetic abnormalities in the tumor – and then, immunotherapies to harness the immune system to fight cancer. Those are the three major kinds of therapies.  

Katherine:

It seems like patients really do have a lot of options, which is a good thing for them. But how do you then decide which treatment is most appropriate for a given patient? 

Dr. Carbone:

Well, it’s not straightforward. When I started 35 years ago, it really wasn’t clear whether any treatment made any difference, and we actually did a large, randomized trial of doing nothing versus treating, and showed that we could improve survival by a month or two with the currently available treatments. Now, we have a huge toolbox of types of treatments and combinations of treatments. And it really requires a careful analysis of the characteristics of the tumor to pick the best therapy.  

And specifically, for the adenocarcinomas, the most common type, we now do a detailed genetic analysis on all of the tumors, which can completely change the type of treatment people get and the prognosis, and result in being able to match a pill-type targeted therapy to a particular genetic abnormality with really high efficacy and low toxicity. And there are other markers we use for immunotherapy choices. It’s become quite complicated.  

Katherine:

Where do clinical trials fit in, Dr. Carbone?  

Dr. Carbone:

Well, I like to say that clinical trials are tomorrow’s standard of care available today, and all of the new treatments that I’m talking about for lung cancer that have made this dramatic difference in survival and quality of life: They’ve all come because of basic science research, understanding how cancers grow, designing drugs, and using them in people in an intelligent way.  

Historically, we used to just grind up tree bark or dig things up from the bottom of the sea, and test them in tissue culture to see if they killed cancer cells a little more than normal cells. But today, the treatments we have are based on science, and the success of these treatments is very high compared to what they were historically.  

And the way we determine whether a treatment is effective is through something called a clinical trial, where generally the new treatment is compared to the standard treatment.  

And if there is no standard treatment, we still do sometimes use placebo-controlled trials, but often that’s placebo plus some chemotherapy, versus the new drug plus that same chemotherapy.  

So, it’s really not a placebo-only type situation. But the trials are designed to rigorously test whether the drug improves outcomes, and are an extremely important step in developing these new drugs and finding new things to help patients.  

Patient Considerations That Impact MPN Treatment Decisions

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Patient Considerations That Impact MPN Treatment Decisions from Patient Empowerment Network on Vimeo.

How can personal choices play a role in your MPN care? Dr. John Mascarenhas reviews factors that should be considered, including lifestyle and overall health, when choosing therapy for essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF).

Dr. John Mascarenhas is Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Leader of Clinical Investigation within the Myeloproliferative Disorders Program at Mount Sinai. Learn more about Dr. Mascarenhas, here.

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Transcript

Katherine Banwell:

Outside of testing, what other factors should be considered when choosing treatment?

Dr. Mascarenhas:       

I think patient expectation. So, sometimes physicians and family will impose what they want for a patient, and that may not be what the patient really wants. So, I have learned over the years that it’s crucial to make sure that you understand the patient and what the patient’s expectations, desires, and that’s influenced by the life they’ve lead or the remaining life that they want to live and their own personal religious and spiritual beliefs.

So, I think knowing your patient and understanding what their expectations are, it’s fundamental, and sometimes, it’s overlooked. So, understanding that, I think, is very crucial. And then, dividing what are the objectives of the treatment in a given patient? Is it really to improve anemia in some patient versus perhaps a different patient, it may be to improve their quality of life and reduce their symptom burden. And then in other patients, it may be purely trying to cure the disease with therapies that may be aggressive, which may not be appropriate for an older patient where toxicity could outweigh any potential benefit of survival or longevity. So, you really have to have a discussion with the patient or caregivers, and then define what are the goals in that individual to personalize that approach for that patient.

Katherine Banwell:                  

Right. Right. And, there’s the patient’s overall health, comorbidities, other things like that?

Dr. Mascarenhas:       

Yeah, because we are not treating a disease in isolation usually. So, patients come with baggage posed of past diseases, current diseases.

And sometimes patients are not “fit” for certain types of therapies because they may be sick or they may have organ dysfunction that would make certain types of treatment approaches ill-advised because the toxicity could be higher. So, absolutely, you need to know their comorbid index, how much comorbidities they have and also their performance status, how active and how well they are in general.

Katherine Banwell:                  

Are there specific biomarkers that may affect prognosis or treatment?

Dr. Mascarenhas:       

So, yes and no. I mean, I think that’s an area of intense interest and research. So, we have identified certain biomarkers that have, as I mentioned, prognostic significance, and that may influence treatment decisions. So, patients who have, for example, as we discussed next-generation sequencing and we see their mutations that are present, if they have an accumulation of high molecular risk mutations, that may give us a sense that perhaps that patient may not enjoy the full benefit and duration of benefit of, for example, a JAK inhibitor as another patient that has a less complex disease.

And, that doesn’t necessarily mean that the therapy is not appropriate for the patient. But it may help us plan and be prepared to move on to the next therapy sooner or to be more vigilant for changes that would tell us it’s time to move on. So, I think they help us maybe get a general sense of things and put things into perspective. They don’t always necessarily inform us on a change in therapy immediately or the next or the most immediate therapy. But I do think that that will change because I would predict in the next five to 10 years, I think that the number of available drugs for myelofibrosis, for example, will likely double from what it is now. I think we will have an armamentarium to choose from, and what we will learn from trials that are ongoing is there may be certain profiles, mutations, chromosomal profiles, other clinical variable profiles that we will learn from these trials that will help us to find upfront, “Well, this profile really should go with his medication. That profile should go with that medication.”

An early of example that would be we’re learning that not all patients with the JAK2 mutation are created equal, that you can have different burdens of JAK2 mutation.

And, patients with low burden JAK2 mutation, for example, may fare better with up a specific JAK to inhibitor like pacritinib than patients who get treated with other JAK inhibitors like ruxolitinib.

So, there are differences even within patient defined by mutation that may help us predict which of the JAK inhibitors, as an example, may be more appropriate as a first-line therapy. So, I think that will evolve more so over the next five to 10 years.

MPN Patient Q&A: What Lifestyle Changes Did You Make?

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MPN Patient Q&A: What Lifestyle Changes Did You Make? from Patient Empowerment Network on Vimeo.

Should myeloproliferative neoplasm (MPN) patients make lifestyle changes after diagnosis? Watch as MPN patient Nona explains lifestyle changes she made following diagnosis to improve her quality of life.  

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

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Transcript:

Dr. Nicole Rochester:

All right, we have a question from James. James says, “Are there specific lifestyle changes that you may, following your diagnosis that brought relief to any symptoms that you were having?”

Nona Baker:

Well, the first change I had to me was I used to smoke, and then my hematologist said to me that affects the red cell count, and that was the incentive to absolutely give up smoking there, and then that was my first lifestyle change, and I haven’t regretted it for a single day. Other lifestyle changes, not really, other than just becoming aware that you know to fight fatigue doesn’t help, sometimes you have to surrender to it, but definitely give up smoking and I… you know, I think that…well, nowadays people don’t smoke, but we’re talking 30 years ago, so…yeah, study is pretty well since I have a cigarette.  

Using Your Voice to Partner in Your Prostate Cancer Treatment Decisions

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Using Your Voice to Partner in Your Prostate Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

How can prostate cancer patients work to become partners in their care? Expert Dr. Tomasz Beer discusses “shared decision-making” in prostate cancer care and offers his perspective about the patient role in treatment decisions.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

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Transcript:

Katherine:

The term “shared decision” is being used lately when talking about patient care. What does this term mean for you?

Dr. Beer:                     

Well, you know, at some level in my view, at least in the United States, virtually all medical decisions are shared decisions. We have a culture of advising our patients about their options, perhaps recommending a course of action, if it’s clearly preferable in our judgment to other options, but really involving patients in those decisions and taking serious consideration of the patient’s personal preferences and values.

And oftentimes in cancer care, especially when we’re dealing with noncurative treatments, treatments that are designed to keep the cancer at bay, perhaps shrink it, prevent or reduce cancer-related symptoms, protect quality of life, we really need to understand each individual patient’s willingness to undergo treatments, take on treatment-related risks, and their personal priorities. Is it their goal to live as long as possible and accept more risks? Is it their goal to focus on the quality of life today and avoid risks to the extent possible and only take them on when they’re absolutely necessary?

These are the kinds of discussions that we have with patients every time we consider a treatment change. So, to me, shared decision-making is really what we do with every patient and almost every visit. In some cases, it’s particularly important because there are areas in medicine where there’s really equipoise, and we don’t have a very clear recommendation one way or another.

Prostate cancer screening is an example for that. We all would dearly love to believe that early detection of prostate cancer is helpful, but early detection of prostate cancer comes with its own harms, the risk of overdetection, overdiagnosis, overtreatment, all because we pick up not just the aggressive cancers but also very slow-moving cancers that are not life-threatening. And so, folks undergoing cancer screening really need to know upfront what they’re getting into and make a decision about their view of the balance between the risks and the benefits. That’s a classic example of shared decision-making.

Katherine:                  

What is the role of the patient in making treatment decisions?

Dr. Beer:                     

Well, I think that the role of the patient is absolutely critical. I mean, they’re the ones receiving the therapy, and there are many things that we look for from our patients. To me, the most important is a clear understanding of their options and the reality within which we operate, having a set of hopes that are forward-looking, hopeful, and optimistic but also grounded in reality, so that good decisions can be made based on reasonable expectations. No. 2, a clear and honest articulation of the priorities, and that can be difficult.

You know, sometimes it’s hard to balance priorities. We obviously want to live as long as possible with a good quality of life. But what if the choice is better quality of life with a shorter lifespan or a longer lifespan but more side effects? And that’s really hard to sort out for some folks. And in my experience as a physician in the trenches, I can also tell you that sometimes the goals of the patients and the goals of their loving spouses and families are a little different.

And trying to help us – as physicians, our primary responsibility is to address the patient’s goals, but we all know that what we really want for our patients is a consensus of all the people they love that are important to them so that everyone can be supportive and on the same team. Those differences can be really stressful.

So, another thing that I look for in my patients and try to help with is building a family and friend support network that’s aligned, that’s on the same team, really. And then really strong communication with the physician or the provider about how things are going, letting us know about side effects honestly, and many people do that, but some people are afraid to share side effects for fear that their treatment might be taken away. And that honest, straightforward communication is really important for the best decision-making. And then, you know, of course, knowledge about the treatments and understanding of what we’re talking about is helpful, but actually, to me, it’s not the most important thing.

Having read the detailed papers on docetaxel chemotherapy while helpful, is not as important as having a really clear understanding of one’s values and priorities and a candid assessment of one’s quality of life and the ability to share that with a physician. I can cover the technical medical stuff, but what I can’t do is guess what’s important to my patients.  

 

MPN Patient and Care Partner Tips for Utilizing Telemedicine

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MPN Patient and Care Partner Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Summer Golden and care partner Jeff Bushnell have learned the ins and outs of telemedicine. Watch as they share some advantages of virtual visits, instances when in-person visits are used for MPN monitoring, and their tips for optimizing telemedicine visits.

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Transcript:

Jeff Bushnell:

We are very fortunate to live in San Diego here where there are major medical centers and research universities and so on, but a lot of people aren’t… and these MPNs are very, very rare diseases. And there are not a lot of doctors that specialize in them, so telemedicine will allow you to contact a specialist.

I know when we see the Summer’s doctor in-person, she does a physical exam specifically to check her spleen size, which is an important aspect of almost all of these MPNs and without the ability to do that the doctor is working all solely from blood counts.

Summer Golden:

It’s just like Zoom, it’ll never go away, and I do believe telemedicine will be here forever, another technical advantage.

Jeff Bushnell:

I think, especially after COVID, people are more used to telemedicine, and in the MPN community anyway, because of the lack of large numbers of doctors that know much about it, like telemedicine will open up sort of a new, a new type of being able to treat MPNs, just because more people will be able to contact specialists.

Summer Golden:

A top tip I think, it’s sort of logical, but is to have the questions and issues written out because it’s a limited matter of time and to specifically jot down the answers.

Jeff Bushnell:

Another tip would be to ensure that you have the appropriate stuff on whatever device you’re using to talk to the doctor on. We’ve used about three or four different apps as it were on our phone to communicate with different doctors, and you need to make sure that that works ahead of time. Usually, the way they do it is they set up the appointment, they contact you ahead of time, and make sure that it’s going to work before they put the doctor online. But that’s very important that you have the technical ability to ensure that your equipment can support telemedicine. They’re making it pretty easy, but you still have to do it.

How Is Treatment for Head and Neck Cancer Evolving?

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How Is Treatment for Head and Neck Cancer Evolving? from Patient Empowerment Network on Vimeo.

How is head and neck cancer treatment evolving over time? Watch as expert Dr. Samantha Tam from Henry Ford Health System explains current areas of research focus in head and neck cancer – and how researchers are working toward the best care for patients. 

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So, treatment of head and neck cancer is constantly evolving with the introduction of immuno-therapeutic agents, understanding the role of that in the treatment of head and neck cancer is currently undergoing a lot of research. And there’s a lot of interest in curiosity about how we can utilize that in conjunction with the more traditional treatments of head and neck cancer. Another major focus in head and neck cancer now is to ensure that we’re not overtreating our patients, especially those with HPV-positive disease, and so understanding the balance between treatment care of the disease as well as maximizing function and quality of life after treatment of the disease has become a major focus in head and neck cancer and is certainly at the forefront of our minds. 

What Are Key Prostate Cancer Questions to Ask Care Team Members?

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What Are Key Prostate Cancer Questions to Ask Care Team Members? from Patient Empowerment Network on Vimeo. 

What are key prostate cancer questions to ask care team members? Host Dr. Nicole Rochester and Dr. Yaw Nyame, and Dr. Petros Grivas provide information about vital questions to ask care providers about prostate cancer diagnosis and treatment options to work toward improved quality of life and equitable healthcare.

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Transcript:

Dr. Nicole Rochester: 

I’d love for each of you to share maybe a couple of key questions that patients, our care partners facing prostate cancer should ask of their treatment team to ensure that they’re receiving appropriate care. 

So, we’ll start with you, Dr. Nyame. Any key questions that patients should be asking their care team when they seek treatment or diagnosis of prostate cancer? 

Dr. Nyame: 

Absolutely, I think that there’s a long list. Actually, I’ll tell you, my new prostate cancer diagnoses visits are usually my longest because there’s a lot to consider. I do think depending on what you’re having done and what you’re being considered for, so let’s say in the localized setting, prostate cancer is confined to the prostate, and you’re thinking about treatment like a surgery or radiation therapy, you really want to know what that center and what that provider’s experience is because we have a lot of supporting evidence that the more people doing this…no one’s going to be surprised by what I’m about to say, but the more that someone does is the better they’re going to be at it. Okay, and so making sure your team has a good experience with what you’re seeking to have done is important, and I think it’s well within your rights as a patient to understand that, so I think advocate for that. Secondly, I think basic questions, just to understand the relationship, I think…I like it when patients want to know a little bit about me because I’m going to be…they’re going to be in my hands. And so again, the importance of that relationship building and your visit is crucial. 

Lastly, I think when you come to the visit, have a list of questions based off of what you’ve researched and write them down, I find my most sophisticated patients or crossing off questions as I’m talking, because they came prepared and so that preparation…the act of doing a little bit of reading, there are a lot of resources, the Prostate Cancer Foundation, for instance, has a very nice patient guide that’s written by patients and language that’s really digestible and edited by experts, and so going through that and coming with your list of questions, I think is a really important thing for your visit, and those are just a few things I can think of that can lead to a meaningful clinic visit and exchange. 

Dr. Nicole Rochester: 

Excellent, I’m a huge fan of questions and being prepared for visits. What about you, Dr. Grivas, are there one or two key questions that you feel patients or their care partners should ask? 

Dr. Grivas: 

Great answers by Dr. Nyame, I totally agree. I think started with the basics, “What this diagnosis means for me, what is the current extent of the cancer,” we call the states, and “What is the outlook, what is the overall prognosis or at least estimate of the outcome?” That’s a reasonable question to ask and again some places more detail, some others may not, and it’s important for us also to ask the base and what they want to know, how much they want to know, I would take in things of them, they want to know the entirety of the information because it makes…help them make decisions. The other, I think it’s important point, “What are the treatment options and what is the intent of the treatment, what are we trying to achieve by giving treatment, Are we trying to cure, eradicate or eliminate the culture, are we to prolong life, are we trying to improve quality of life or are we just trying control the cancer? So, what are the goals of the treatment and what are the metrics of success, so what will be a successful outcome of that treatment? How do we measure that?” And I think it’s also important. 

Two more points, I would if I may. I think, again, going back to the importance of genetic counseling even more in prostate cancer, I think we recognize the importance in the aspect of patient treatment because some treatment options may depend on finding mutations. But also, the importance of the family, how much can prevent cancers in the brother family, close and extended family, if we find the mutation, can we set this mutation for other family members and do screening to prevent cancer prevention is ideal if we can do that and I think that’s a good discussion, so the patient can come to the visit if possible, by doing some homework about the family history. It’s hard for of us now, what’s happening in that chasm, right? But we do have the time to be informed of the importance of the question, this can help and expedite in our resources like to genetic counseling. And the last points, research, I want to again make the point, we should all do a better job to offer innovative clinical trials to patients across races, and it should be a very important point again equitable healthcare. And the patient should ask are clinical trials an option for me and do I have a clinical trial option? And I think it’s a great question, and hopefully this can help the patient get to integrative treatment, but also help the field. 

The research would get important answers, and the important answers can be for all the community and the specific populations, if we do trials, clinical trials with only the white patients, do we have the answer for the Black patients, or we have the answer for both and other races and ethnicities as well. 

Dr. Nyame: 

And I do want to take this opportunity to add one more thing because Dr. Grivas was talking about what does your treatment mean for you, and in this discussion about prostate cancer, we cannot talk about what questions do you bring without mentioning the impact, quality of life of our treatments? And I think that sometimes this is the elephant in the room that leads to the decision to not pursue treatment, and so I want to take this opportunity as the urologist to say this is the time to talk about what treatment is going to do for sexual function. This is the time to talk about what treatment means for your urinary symptoms and quality of life, a good and healthy discussion around these things need to happen during your visit, because I think sometimes what patients expect to have happen with treatment and reality don’t match. And you have an expert in front of you that can really give you some input as to what to expect, and in a similar vein, when you meet with survivors, these are some of the things that I know patients tell me they’re worried about, and these are people who are living it, that can give you really valuable information on that piece of quality of life, and I hope that those conversations can help us close that treatment disparity that we see between Black men and white men with prostate cancer. 

What Are the Goals of ET, PV, and MF Treatment?

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What Are the Goals of ET, PV, and MF Treatment? from Patient Empowerment Network on Vimeo.

What goals are myeloproliferative neoplasm (MPN) care team members trying to achieve with ET, PV, and MF treatment? Dr. Naveen Pemmaraju reviews three factors that drive treatment decisions for quality, personalized MPN care.

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, here.

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Transcript

Katherine Banwell:

Let’s talk about treatment goals first for ET, PV, and MF. What are the goals of treatment from a clinical perspective?

Dr. Pemmaraju:     

Well, I think the goals are divided up into three factors. So, I think for the MPN patient, goal number one has to be what the patient themselves want to achieve.

Oftentimes, that’s different than what’s on the numbers with the labs and what the physician wants. So, I think a lot of our patients correctly are suffering from – or mentioning to us that they’re suffering from quality of life issues. So, fatigue is the most common manifestation of all the MPNs, followed by bone pain, night sweats, inability to concentrate, etcetera, etcetera.

So, I think quality of life is the goal of most people, and I think that’s an admirable goal. And some of the medicines can help that. Some can actually hurt that in the short term. So, let’s put that as bucket number one. What does the patient want to achieve? Usually, it’s the alleviation of fatigue, itching, bone pain, etcetera.

Number two, I think, is the sort of on-paper game, if you will, right? So, what do the labs show, what does the bone marrow biopsy show, what does the spleen show? I think all of that is good, too, in that bucket. And clearly, if someone has transfusion dependent anemia, two times a week needing blood transfusions, and whatever treatment you can do can alleviate that down to once a week, once a month never – okay, that’s a win for the patient.

And then I think, finally, our goals. You’re right. You asked me specifically what are my goals for our patients? Well, I want to see that your overall survival has improved if I can. So, your length of life, your quality of life has improved. Minimization of side effects from whatever therapy we’re doing. If we’re going on a clinical trial or combining therapies in a novel way, that you’re not experiencing some brand new or idiosyncratic toxicity or side effect.

And then, finally, I think the key is to monitor for, let’s say, other things. Are you developing a second cancer? A second blood cancer. Are you having another problem that’s outside of your MPN, such as iron deficiency anemia or thyroid disease? Something that’s extremely common, has nothing to do with the MPN, but is also happening. And then do you have a healthcare team?

I failed to mention in your earlier question the primary care doctor., right? Let’s mention that person as well. If our patients have the general practitioner who they had already been seeing before the MPN diagnosis, or at least established one after, then some of these important aspects, like cancer screening, cholesterol checks, some of these other important things can be done in parallel to the MPN therapy and then, of course, combined at different points.

So, these are kind of my benchmarks for goals of therapy. They will vary from patient to patient and, of course, from case to case. The patient with advanced intermediate to high-risk myelofibrosis going to transplant, well, that’s markedly different from the patient who’s young with ET with no blood clots and relatively controlled blood counts.

Katherine Banwell:    

So, you just mentioned a couple of factors that you take into consideration, but there are others as well, I think. What about the patient’s age and overall health, for instance?

Dr. Pemmaraju:   

Could not be more important. You’re right. I think age – and let’s use that as a surrogate for what we call ECOG performance data.

So, the overall kind of fitness of a patient, may be the most important factor. And then followed by these other conditions, so-called co-morbidities. I’d like to talk about that for a second because that’s a lot of the program here. Depending on a patient’s age, performance status, fitness, and other organs that are involved, that actually leads to a couple of important points.

One, it may limit or reduce the number of treatment options that a person has based on their ability to even tolerate it in the first place. Both oral chemos that are available, some of these clinical trials that need to use an IV drug.

Number two, it may predict how your overall survival is going to be. So, perhaps your MPN, as we used in the other example, you have an earlier stage MPN that really doesn’t require treatment. It requires active observation.

But then on the other hand, you have advanced heart disease or kidney disease. That may actually do you more harm in the end.

And then, finally, right, is this concept that you have the co-morbidities and then you have the MPN and then they kind of change and morph over time where one is the dominant issue, the other isn’t. And so, you do need that decision care team as you were mentioning earlier. So, let’s definitely say that out loud that that matters. And I think it also reminds us that nothing is in a vacuum. The MPN doesn’t exist in an isolated space, right? So, your MPN co-exists with your heart disease, your kidney disease, your lung disease, your past, your present habits, anything.

Dr. Pemmaraju:     

I think sometimes, as physicians, we may not ask, and as patients, we forget to mention, oh, X, Y, Z in my history, or “Oh, I’m taking this herbal supplement.” Sometimes these things are important to mention.

So, when in doubt, bring up everything to your care team so that you can make decisions together.

Katherine Banwell: 

It might help to make notes before you go in to talk to your doctor.

Dr. Pemmaraju:    

Absolutely. That doesn’t hurt, and it could help you at least organize your own thoughts even if you don’t use them in the visit.

Will Telemedicine Improve My Quality of Life with CLL?

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Will Telemedicine Improve My Quality of Life with CLL? from Patient Empowerment Network on Vimeo.

How do chronic lymphocytic leukemia (CLL) patients and care partners feel about the impact of telemedicine on quality of life? Watch as a CLL patient and care partner, Bob and Susan, discuss how easier access to blood test results affects patient emotions before and during remote office visits.

See More From the CLL TelemEDucation Empowerment Resource Center

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Transcript:

Susan Bottega: 

The role of telemed in terms of survivorship I think is a very, very interesting subject. CLL patients are living a very long life these days with the onset of the novel agents that are coming out. Quality of life becomes a very, very important subject for CLL patients. So much of their quality of life is diminished by the visits that they have to make into doctors’ offices.

The anguish that they spend the day before, the sleepless night that accompanies the doctor’s visit. I think that this is extremely important. You’re looking very possibly of at least two days taken out of your life, and if you’re making these visits on a monthly basis or bi-monthly basis or even tri-monthly basis, that’s a long period of time to take out of the span of your lifetime. And as we’re living longer, this becomes more and more important.

You want to have that quality of life, you want to be able to go on vacations. Your vacations can’t be postponed because you have a doctor’s appointment looming in the future. You can take your computer right along on vacation with you and share your vacation with your doctor.

Bob Bottega:

I like that.

Susan Bottega:

I think the anguish that you feel about blood tests is diminished by it. You don’t have to wait to get the results of your blood tests, your blood tests pop right up on your patient portal. You don’t have to sit there and wait in a doctor’s office until you see those results.

Once you see your doctor, you’ve already got your results and you’re calm about it, you’re relaxed because you know what the results are and you can discuss them without having to deal with the anxiety that comes with hearing, “Okay, my white blood cell count has gone up considerably, so how do I calm myself down to discuss this intelligently at this point in time when I’m emotionally so upset over it?” I think these are very, very important things about the quality of your life. How about you, Bob?

Bob Bottega:

I think you said it all.

Susan Bottega:

Don’t I always? (laughter)

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

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Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, provides insight as to why identifying chromosomal abnormalities is essential when it comes to targeted therapy as a treatment choice for myeloma.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

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Transcript:

Charise:                       

So, testing for chromosome abnormalities or changes are important when it comes to targeted therapy.

And we used to think of this more in that relapse setting. But we also look at it upfront now, because it tells us more about the path of myeloma. And there are reasons to check throughout at relapse, again, to see if something’s changed. So, with targeted therapy, we can use the translocation (11;14), for instance.

Many patients have a translocation t(11;14). It’s not a high-risk feature. But we know on clinical trial we have a drug that we’re using called venetoclax that those patients can be very sensitive to.

And so, we’re looking at this not just in translocations but in sequencing for other abnormalities or gene mutations that can help guide us with these newer therapies. And you see that across all cancer types at this point. So, you can get very specific with a patient’s type of myeloma – that this drug is going to work better because you have this mutation.

So, we look at it upfront. It guides us for risk stratification: standard risk versus high risk. And then we look at it in that relapse setting. Do we have a drug or a clinical trial that this patient will respond better to because of those abnormalities?

When we’re risk stratifying, we know standard risk, medium risk, and high risk. Those are those translocations, those gene mutations, that we know about.

But newer testing, like sequencing, gives us a lot more mutations that we don’t even know what to do with them all yet.

We don’t necessarily have drugs for all of them, but it does help guide us down the road. So, right now some common are the translocations, but also deletion 17p, which we’ve known about for a while. But maybe you see a BRAF mutation, which you typically associate with other types of cancers, but we see that in myeloma as well.

So, it helps us look at is there a drug that our myeloma patient might benefit from because they have a BRAF mutation, for instance. 

Essential Imaging and Chromosome Tests after a Myeloma Diagnosis

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Essential Imaging & Chromosome Tests After a Myeloma Diagnosis from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, explains why tests such as bone marrow biopsy, FISH test and full-body imaging are considered essential for patients after a myeloma diagnosis.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

See More From INSIST! Myeloma

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Transcript:

Charise:                       

The essential testing that a myeloma patient should undergo following a diagnosis is – obviously, you’ve had those diagnostic test labs, the 24-hour urine, some scans, but the specific things that we need are a bone marrow biopsy.

That includes cytogenetics and FISH, and we can talk a little bit more about that. You also want full-body imaging. We used to always use a skeletal survey, which was an X-ray of the long bones. But, really, the standard of care now is a whole-body scan.

So, depending on what your oncologist or your institution has, that would be a full-body CT scan, a PET-CT scan, or a full-body MRI. So, one of those tests is recommended. It’s not unusual if you have a PET. Like our institution, we use PET-CT. So, for a newly diagnosed patient, we’re also going to get an MRI of the spine for a further snapshot.

What we’re looking for with a full-body imaging is we want to make sure that there aren’t any lytic lesions.

So, with an X-ray, you have to have about 30 percent bone loss before it’s going to show up on an X-ray. So, those traditional X-rays that we used to use could actually miss an active lesion. So, in that diagnosis, we want to know that there is no active myeloma. And those other scans are going to be more specific to that.

So, the cytogenetics of a bone marrow biopsy are going to tell us more about the biology of the disease. So, cytogenetics actually grows out the pairs of cells. And so, that’s why that portion of the test can take a while to get back.

At our institution, it can take two to three weeks, because you’re actually growing out those cells to look at the chromosomes. And remember these are chromosomes, or genes, of the plasma cells. And so, we’re looking for those abnormalities that might be present. So, you think about it more for the biology of the disease.

When we’re looking at FISH, we’re also looking… That test shows a little bit different. It comes back quicker. It shows two different phases of cell changes.

And so, it will tell us about chromosomes as well. But do you have any additional chromosomes – so, that would make it a hyperdiploid narrow. It tells us if there’s a loss of a chromosome – so, you’re missing one, a hypodiploid. It also tells us about translocations – so, when you’ve had a piece of a chromosome change and go to another cell. And so, that, for instance, would be like that translocation t(11;14) or translocation t(4;14). So, it’s essential to have that testing to tell us about that, because it helps guide treatment. And as we talk more about targeted therapy, these things really can come into play.

Can Diet and Exercise Reduce MPN Symptoms?

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Can Diet and Exercise Reduce MPN Symptoms? from Patient Empowerment Network on Vimeo. 

What can YOU do to make a positive impact on your overall MPN care? Researchers Dr. Jennifer Huberty and Ryan Eckert review the latest research on how movement and diet can benefit people living with myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

See More From the The Path to MPN Empowerment

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Transcript:

Ryan:

So, as far as the benefits of exercise for MPN patients, there’s many, and so, I guess starting with cancers as a whole, there’s a lot more research that’s been done in recent decades that looks at the effects of various forms of exercise and physical activity on other cancers. They just tend – researchers tend to do a lot more of that work in breast cancer, lung cancer, colon cancer, et cetera.

And so, the research in exercise for MPN patients is actually really new, and nobody outside of Dr. Huberty in conjunction with Dr. Mesa and a few other researchers have done any research related to exercise specifically in MPN patients. Our yoga studies that we’ve done have been the first venture down that route for MPN patients. But, what we do know in general is that exercise has obviously systemic effects across the whole body.

So, you’re gonna get health benefits just in general from exercise, but as far as for MPN patients specifically, some of the things that we’ve seen with our yoga studies, which is obviously a form of physical activity, is that we’ve seen sleep improve in MPN patients, so we’ve seen a reduction in sleep disturbances or disruptions in their sleep, a quicker time to fall asleep, and then, less waking up throughout the night – so, just better sleep in general.

We’ve seen some reductions in fatigue that have been reported by MPN patients who have gone through our yoga studies, and then, we’ve also seen a few other reductions in some other symptoms, such as anxiety and reduced depressive symptoms, a little bit of reduced pain is another one we’ve seen. So, just in general, we’ve seen some of those effects on MPN patients through some of our yoga studies.

Dr. Huberty:

So, in terms of adding to what Ryan just said, I would just say that exercise – maybe yoga or walking – is good for your body. It’s good for your health. It’s a recommendation that we get 150 minutes of moderate-intensity activity every week. The more that MPN patients can be achieving that goal towards 150 minutes – yoga counting at that – the better off they’re gonna be, and it doesn’t have to be going for a run.

It can simply be going for a walk around the block. It can be standing at your desk when you’re working instead of sitting all the time. That’s not necessarily activity per se, but it is moving your body and less sedentary. So, I think just focusing on the more that patients can move their body every day, the better off they’re gonna be.

Dr. Huberty:                

So, yeah, the role of diet in MPN patients – so, this is the beauty about the quality of life study group, because we have all these wonderful investigators that are part of the team, and we do have Dr. Robyn Scherber, who’s at Mays with Dr. Ruben Mesa. She’s doing some work with keto diet right now, so it’s very new, so I don’t know if you’re familiar with the keto diet, but it’s very high-fat and very low-carbohydrate, extremely low levels of carbohydrates. I wouldn’t tell any patient to go start doing those things unless they’ve talked to their physician for sure, but we do know that based on how you eat does certain things to your body.

So, MPNs have high inflammatory markers, and so, we wanna decrease inflammation; we probably wanna eat foods that are going to be anti-inflammatory. So, berries, let’s say, is a good example of fruits that are anti-inflammatory, almonds are anti-inflammatory, and I’m not a dietitian by any means, it’s just that things that I know to be true for my own diet because everybody should be thinking about having an anti-inflammatory diet.

Processed foods are not healthy. They are higher-inflammatory. Breakfast foods, eating out, and the foods that you get when you eat out a lot are going to be more inflammatory than not. So, just those small things – lots of vegetables. Vegetables are very good. Lots of greens. But, there is research going on – again, just like exercise and yoga, it’s in its infancy because MPN has been an under-studied population for years, and we’re trying to power through and make that difference.

Expert Tips for Managing MPN-Related Anxiety

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Expert Tips for Managing MPN-Related Anxiety from Patient Empowerment Network on Vimeo. 

Health-related anxiety and worry can be overwhelming. Dr. Jennifer Huberty provides advice for using complementary approaches to cope with the emotional impact of a chronic cancer, like myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

See More From the The Path to MPN Empowerment

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Transcript:

Dr. Jennifer Huberty: 

With anxiety and worry – it’s like we get in this state of mind that we can’t seem to get out of, and then, thoughts just keep piling in and piling in and adding to more anxiousness and more anxiousness, and so, the key is quieting the mind, and the best way to do that is to focus on your breath, and again, just coming back to the moment, coming back to the moment. You can do body scans where you’re just thinking about where your body is in space, going from the tips of your toes all the way to the top of your head.

I recommend guided meditation for MPN patients, especially because it is difficult. The anxiety and worry is real. The fears are real. This is a – it’s a traumatic event to be diagnosed with any cancer, and the brain is a powerful thing in terms of getting in our way of healing and feeling better, and so, knowing that it’s powerful, we can quiet our mind so that our body can learn to let go. And, I will say that spending that time doing that with the anxiety and worry, there will be physiological symptoms that change – so, heart rate goes down, blood pressure goes down, sweaty palms decrease, stomachaches – those kinds of things will tend to go away as anxiety and worry goes down.

And, the other important thing I would say is a tip for managing is to be self-compassionate. So, that’s a big part of meditation and yoga philosophy, is self-compassion. And so….being okay with being anxious and being okay with being worried, and there’s nothing wrong with that, and it’s completely normal.

And so, learning to be compassionate in ways that you would be compassionate to a sibling, or a parent, or a best friend – use those same compassionate thoughts and feelings toward yourself.