Who Is on a Patient’s CLL Care Team?

Who Is on a CLL Patient’s Care Team? from Patient Empowerment Network on Vimeo.

Who are the members on a chronic lymphocytic leukemia (CLL) patient’s care team? Dr. Matthew Davids explains the members of the healthcare team – and shares advice for ensuring the patient receives complete information for optimal care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

See More from Engage CLL


Related Resources:

 

An Overview of CLL Treatment Types

Transcript:

Katherine:

When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?

Dr. Davids:

It’s definitely a multidisciplinary team.

Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There are pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.

That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.

Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.

Take Care of Yourself and Your Family’s Health

Building Resilience and Boosting Immunity

At a time when health is top of mind for everyone, despite the stressors, how can we ensure to emerge emotionally, physically and mentally resilient? Patient Empowerment Network Care Partner Manager, Sherea Cary sits down with distinguished guests, Sara Goldberger and Dr. Shivdev Rao to discuss building resilience and boosting immunity. Both experts define resilience, provide tips for boosting heart-lung health and provide useful tools for cultivating resilience.

Defining Resilience

Defining Resilience from Patient Empowerment Network on Vimeo.

Tips for Boosting Heart and Lung Health

Tips for Boosting Heart and Lung Health from Patient Empowerment Network on Vimeo.

Community Resources & Tools for Cultivating Resilience

Community Resources and Tools for Cultivating Resilience from Patient Empowerment Network on Vimeo.

Oncology Social Worker Checklist

Resiliency Checklist During the Time of COVID-19


Sara Goldberger, MSSW, LCSW-R, has been an oncology social worker for 30 years. Currently she is the Senior Director, Program for the Cancer Support Community Headquarters. She has also worked in hospitals and community NFP settings. She is a member of several Advisory Boards is a frequent presenter and author. As AOSW strives to continue to advance excellence in psychosocial oncology, Sara hopes to play a part in efforts to educate, advocate, develop resources, expand on research initiatives, and create networking opportunities so that AOSW can improve the care of people impacted by a cancer diagnosis.

Turning Your Home Into a Sanctuary

In Five Simple Steps

These days, whether you’re spending more time there or you need a place to unwind after a long day, you need to feel like your home is your happy place. With the help of a few simple tips you can turn your home into your very own sanctuary.

1. Define your sanctuary

Think about where and when you feel the most comfortable and happy; then bring elements of that into your space. Whether you feel your best reading under a cozy blanket and low lighting, or painting in a sunlit room, consider your needs for the space. It doesn’t have to be complicated, says Professional Organizer Kristy Potgieter at KLP Organizing, LLC. Her philosophy is: simple is better.

2. Appeal to the senses

Sound, smell, and color can all evoke emotions. Play music that soothes you or makes you happy, use candles, oils, or incense to fill your space with your favorite scents, and paint your walls with neutral or calming colors. Even changing out your light bulbs can make a difference. Pink light bulbs give a warm, calm glow to your space.

3. Ditch the clutter

Clutter causes anxiety and stress so your best bet is to get rid of it. While clutter looks different to everyone, a good rule of thumb is to remove anything that doesn’t serve a purpose or make you happy. For the things you use on a regular basis, Potgieter recommends storing them in baskets and bins, which can be both decorative and functional. She also says keeping your kitchen counters clear is a simple way to make your home appear clutter-free.

4. Bring nature inside

You can place a vase of fresh-cut flowers on your table or bring in some house plants. If you don’t have a green thumb, a photo of the ocean, a wall painted green, a water fountain, some seashells, or a piece of wood are all okay ways to incorporate nature into your home. It can be as simple as opening a window and letting in the sunlight, which is a known mood booster.

5. Unplug from technology

You don’t have to ban technology altogether, but pick times, such as during meals and the hour before bed, to not use technology at all. Spend less time on social media platforms by deleting the apps on your phone and only using your computer to log onto those sites. You can also use the “do not disturb” settings on your devices to allow yourself some down time.

 

Whatever you do, remember Potgieter’s philosophy and keep it simple. Address the things that are most important to you and let the other stuff go. “The first thing I think of when making a home a sanctuary is really taking a look around and making sure all the things you see are things you love,” she says.

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Not to Worry! Your Guide to Watch and Wait

Not to Worry! Your Guide to Watch and Wait from Patient Empowerment Network on Vimeo.

 Watch and wait, or active surveillance, often feels like watch and worry to CLL patients. Dr. Brian Hill provides a comprehensive guide to the period of time before CLL treatment begins and shares approaches for managing anxiety.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert.

See More From the Path to CLL Empowerment

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Overwhelmed By a CLL Diagnosis? Key Steps to Take

How to Learn More About Your CLL

Essential Lab Tests for CLL Patients


Transcript:

Dr. Brian Hill:

So, watch and wait is the term that’s referred to for not actively treating a patient with CLL after the diagnosis. As many people probably out there watching know, the diagnosis of CLL is often made incidentally or accidentally through routine laboratory tests that are done for some other reason.

Maybe they are going to have surgery. Or maybe they are going to have just a primary care checkup. And blood count shows too many white blood cells. And everything else is fine. The patient feels normal. There’s no symptom. But it leads to a referral usually to a hematologist who then does more testing and makes a diagnosis of chronic lymphocytic leukemia. The word leukemia is very scary because it often conjures up images of acute leukemia which is a disease that can make people very sick very quickly.

We’re taught in much of medicine and in much of cancer that early diagnosis and early treatment is very important. And it is very important for many conditions – breast cancer or we’re taught let’s get our mammograms.

And have an early detection and immediate treatment to cure the breast cancer. Similarly, colon cancer – get your colonoscopy, get your diagnosis sooner rather than later. And have surgery so you can have a higher likelihood of a cure. In the case of chronic lymphocytic leukemia, it’s never been shown despite multiple attempts over many decades, that treating someone with CLL is – earlier, is going to impact the outcomes and the big picture. But we do know that treating CLL earlier can lead to more side effects earlier.

So, in other words, if you feel fine and your blood counts are just a little abnormal, and there’s not compelling indication to treat, we can safely observe patients until an indication for treatment exists. And what I tell patients is that if we treat today, the treatment will work.

If we treat tomorrow, the treatment will work. And if we treat in five years, the treatment will work. So, there’s – we have very good evidence that delaying treatment until you need it does not compromise the likelihood of the treatment working. So, it’s a little bit of a different mindset from other types of cancer where we are taught to treat early and immediately. So, a lot of times people will call it watch and worry instead of watch and wait, and there’s a lot of anxiety about that.

Again, their diagnosis has the word leukemia in it. It can be a very scary time. And it takes a little bit of trust to be convinced that you don’t need to be treated just because you have it. And that’s often times when we do get second opinions if the first hematologist/oncologist says it’s okay to watch it and wait. We don’t need to treat. A lot of the time people then seek another opinion to confirm that’s accurate. And in most cases – I would say 90% of the time when I’ve had a second opinion for a patient who’s been recommended to watch and wait, I typically concur with that recommendation.

So, during watchful waiting or – I like to call it active surveillance because it’s not that we aren’t doing anything, we are surveilling or monitoring. And the two things that we monitor are symptoms and blood counts. So, it sort of begs the question that many people ask which is, “If you are not going to treat me now, when will you treat me? When will I need to be treated?” And the first indication – the first thing we look at is symptoms. So, if you have symptoms of significant fatigue to the point where you are really having a difficult time functioning.

Or if you have drenching night sweats that wake you up from night and make you change your nightclothes. Those type of symptoms would push us to treat. So, those are the things that are being asked of patients at their regular follow up which is usually every two or three months initially.

And sometimes can be spaced out to every four to six months if things are stable. But usually during the first year you want to be checking on folks every two to three months. Weight loss would be another symptom to look out for – sort of unintentional weight loss. The other thing we monitor is the blood counts. So, with a simple CBC or complete blood count, we can see what is happening with the white blood cell count which may and often goes up.

And a lot of folks focus on the white blood cell count and its trajectory and how that is rising. Some people’s white blood cell count can fluctuate. Others can stay relatively flat. And some people do have a continued rise on the white blood cell count. The white blood cell count in and of itself is not the final reason to recommend treatment.

But with time, as the white blood cell count goes up, we sometimes see the other numbers going down. And actually, the other numbers going down are the ones that are more important. Those numbers are – the red blood cell count measurement which is usually measured by hemoglobin concentration or hematocrit. And then the other is the platelet number. So, if either the hemoglobin or the platelet number gets below threshold, those are typically indications for treatment.

So, during this period of observation or active surveillance – watchful waiting, whatever term you choose. This can go on for years.

And it can be associated with anxiety. So, trying to do things to cope with managing anxiety is important. Other things that many people are interested in are – is diet. So, do we know of a particular food or food group that we should focus on? Or is there something we should avoid? And the short answer to that is that many – it’s a difficult topic to study. As you might imagine, diet can be so varied around people. And in a typical week the average person eats so many different types of foods that it’s difficult to focus in on one particular thing.

What we can say is that in general for health, clearly fresh fruits and vegetables are the best source of nutrition. And also, are best for your health.

Avoiding processed foods and processed meats and other foods that are high in saturated fats is probably important in general for your health. Although we can’t say specifically that it’s definitely going to make an impact in the white blood cell count or the trajectory of the CLL. In terms of supplements and natural products, many people are interested in this topic. And again, it is a difficult one to study. Some of the natural products out there are purified forms of things from plants and other ingestible herbs and so forth.

But the problem is, is that if you take any component – even if it’s natural occurring, take it in large quantities it can lead to other problems. There was a well-known study from – that studied the impact of green tea extract on the white blood cell count.

And if you took large quantities of green tea extract, it seemed as if it did sort of lower the white blood cell count a little bit. But some people also had abnormalities of their liver function as a result. So, I don’t recommend green tea extract. And I instead say, “If you like tea and you want to drink green tea, I think that’s probably fine.” But I wouldn’t do it in excess. And just maybe try to incorporate it into a balance diet otherwise.

Why You Need a CLL Specialist

vWhy You Need a CLL Specialist from Patient Empowerment Network on Vimeo

Why should you seek care with a CLL specialist? Dr. Brian Hill outlines the benefits of seeing a CLL expert and advice for approaching a second opinion. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert

See More From The Pro-Active CLL Patient Toolkit


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Overwhelmed By a CLL Diagnosis? Key Steps to Take

 

How to Learn More About Your CLL

 

Nervous About A Second Opinion? How to Confront Your Fears

 


Transcript:

Dr. Brian Hill:

Patients should consider seeing a CLL specialist because oncology is a very complicated field. There are many different types of cancers that oncologists treat. And particularly in smaller hospitals, maybe with general oncologists who see lung cancer, colon cancer, breast cancer and CLL as well as many other types of – patients with many other types of problems. It’s very difficult to stay 100% up to date on all those fields. All of oncology is very rapidly evolving.

And the progress that’s being made in all the diseases I mentioned is very fast paced. And so, things change. And there’s new data emerging all the time. And CLL specialists or lymphoma specialists are able to stay more up to date on these topics. And usually that can result in maybe better options for patients.

So, we often get second opinions or third opinions for patients with CLL.

And one of things patients are understandably concerned about sometimes is the impact this will have on their primary oncologist. Maybe they are from a smaller town or have a smaller hospital. They have an oncologist, hematologist, gynecologist who they like, and they trust, and they don’t want to hurt their feelings or damage the relationship because they may need their primary or local hematologist, oncologist to help them if they are sick or something goes wrong.

So, I think that most oncologists recognize that – again, the field is very complicated. And it’s common for people to seek opinions from referral centers. So, I would say the best thing is to be up front about it. And explain to their primary that it’s not that they don’t like them or don’t trust them.

But it’s important – it’s their health. And they really want to make sure they have another set of eyes. And I even sometimes encourage my own patients that if they have questions about what I’m talking to them, to welcome another opinion. And if there’s good communication about it, I don’t think that you should be concerned about the sort of hurt feelings aspect of it.

How to Learn More About Your CLL

How to Learn More About Your CLL from Patient Empowerment Network on Vimeo.

How can you learn more about CLL? CLL Expert Dr. Javier Pinilla-Ibarz shares credible resources and valuable tips to help you become an educated and empowered patient. Want more information? Download the Program Resource Guide here.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


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Transcript:

Patricia Murphy:        

Okay, well we’ve talked about a lot of treatment and side effects and myths. As an informed patient, I may want to go out on the internet and find out all I can about CLL. What should I be looking for? What should I be careful about when it comes to online awareness and health literacy?

Dr. Javier Pinilla-Ibarz:        

Very, very important topic that I love to really discuss with my patients. I always say that some patients kind of intoxicate themselves with multiple websites and with different backgrounds.

I think we – I do recommend them to really go to the websites, to the websites who really provide a very fair and really clean and important information. I would definitely – we were discussing about the Leukemia Lymphoma Society, CLL Society, Patient Power, to really – National Cancer Institute’s website, places that they have very well filtered information that we can really give to the patient. There is no doubt there’s many others not in this list, but I think we always have to be aware that there’s other websites that may not really provide really, really a good information or may really confuse our patients. So, I like to always really go to the sources that I really trust the most.

Patricia Murphy:

Yeah, so reputable sources and always checking with your doctor, obviously, about things that you’re considering.

Dr. Javier Pinilla-Ibarz:        

Absolutely. Absolutely. I always tell to my patients, “You go there, you look at that, you read, but then after that you have a question. Come because sometimes you may have misconceptions.”

Tips for Determining the Best CLL Treatment for You

Tips for Determining the Best CLL Treatment for You from Patient Empowerment Network on Vimeo.

CLL expert Dr. Javier Pinilla-Ibarz explains how a treatment regimen is chosen, stressing the important role that patient preference plays in making a decision. Want more information? Download the Program Resource Guide here.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


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Transcript:

Patricia Murphy:        

What are the things that you’re thinking about when you’re considering treatment for your patients, when you’re making those decisions?

Dr. Javier Pinilla:        

Well, I think it’s important to really notice and to really understand my patient, is that we need to provide education. We need to provide education, and obviously, every – many, many patients ask me, “Doctor, what I should do?” Right?

But I think it’s very important for me to understand what is the goals of every patient, right? Age, comorbid condition, way of life, people like to travel versus staying in the same place. So, I try to really educate about the options because we are very lucky that we have multiple options. We also understand – so, what is gonna be the difficulty is to really get therapy A versus therapy B and how much control or monitoring they require, and finally also, as mentioned before, to try to customize therapies for different patients.

I always say that – we discuss in the beginning that not everyone with CLL requires therapy at the beginning. However, when people require therapy, not everyone requires therapy for the same reason. Some people may require therapy because they are anemic, okay, extreme anemia. Why? Because their bone marrow cannot really produce enough red cells or even platelets. Why? Because they is full of CLL cells.

So, those patients in my opinion, they can really do very well with strategies as BCL-2 inhibitor in combination and alone. Why? Because these drugs is able to truly and very, very efficaciously really eliminate the CLL.

So, we go into another scenario. Patient with very high, bulky lymph nodes in the neck, axillary and abdominal, for example, with enlarged spleen who may have very, very severe B-cell symptoms. We note that we cannot apply anything. There’s no doubt that introduction of Bruton’s tyrosine kinase inhibitor or even – is extremely successful in reducing the symptomatology very fast and shrinking the lymph nodes in a very short period of time. So, again, I would say that it’s black and blue or like a black and white and – different.

Patricia Murphy:        

Black and white.

Dr. Javier Pinilla:        

Black and white. Thank you. So, but the truth is different patients may require different strategies, and obviously, patients’ preference are really, really important.

Patient may come back to be in therapy for life, maybe patient maybe don’t care. Patient may really, really, really want specifically shorter therapy. So, I think we need to really understand that in the options and start to work with them, also depending on the presentation on the needs for therapy.


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What You Need to Know About Developing CLL Research 

What You Need to Know About Developing CLL Research from Patient Empowerment Network on Vimeo.

Are there CLL research advances that patients should be aware of? Dr. Javier Pinilla-Ibarz outlines the latest in CLL treatment and research.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


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Transcript:

Patricia Murphy:        

It sounds like we have made tremendous progress with CLL. What kind of clinical trials should patients be investigating? What are they – what’s out there?

Dr. Javier Pinilla:        

Well, there is no doubt that a lot of people until now were really looking for venetoclax front line clinical trials. Now it’s available in the clinical practice. However, we’re still trying to figure out combination of drugs, right? For example, in this case, I have mentioned we have a very good drug like ibrutinib in front line. We have all the BTK inhibitors that are coming up such as acalabrutinib. We have other PI3K inhibitors that are being not very successful in the front line, right to the second line, like idelalisib, duvelisib, even copanlisib.

And other drugs, like I said, ibrutinib. So, we have a plethora of drugs, really available as clinical trial outside the ones that have approved. However, one of the things that we are really starting to explore in the recent year is how we combine all these mechanisms of action. The most typical combination that we are really now under trial is the combination of two or three drugs, as happens in many other forms of cancer.

So, this combination of these three – some of, two or three of these drugs, is very, very well studied now in an integral trial, the ECOG, the alliance trial, we gonna start to see those trials, and of course, our patients in front line will have the opportunity. Besides that, we gonna see more and more trials are going to combine patients who are already in chronic therapy with ibrutinib with a second drug, with the goal to in the future be able to discontinue therapy because it’s one of the issues that ibrutinib has these days. Patient takes the drug for life.

How Can The CLL Society Help You?

How Can The CLL Society Help You? from Patient Empowerment Network on Vimeo.

Dr. Brian Koffman, co-founder of The CLL Society, explains its mission and goals. Dr. Koffman reviews programs and services that assist chronic lymphocytic leukemia (CLL) patients and their loved ones.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

See More From The Pro-Active CLL Patient Toolkit


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How Can Patients Advocate for Genetic Testing

Expert Advice for Newly Diagnosed CLL Patients

CLL Office Visit Planner

 


Transcript:

Dr. Koffman:              

Hi, I’m Dr. Brian Koffman. I’m a retired family doctor, and I’m the cofounder, chief medical officer, and executive vice president of the CLL Society. And, what, you ask, is the CLL Society? Well, the CLL Society is a 501(c)3 not-profit that focuses on the unmet needs of the CLL community in terms of supporting, educating, advocating on behalf of, and researching what needs to be done in the CLL community.

The CLL Society is very proud of the programs that we offer. So, among the programs that we offer, the backbone is a website that covers everything from the very basic kind of information – frequently asked questions – to really the latest research that’s coming out.

Also, on the website, CLLSociety.org, we have a whole toolbox, and in that toolbox, there are lists of acronyms. There are links to other CLL resources. There are links to CLL experts around the country. There are spreadsheets to help you with your lab sheet – lab results so you can follow them and mark the trans-Excel spreadsheet. We also do trial educational forums across the country with places like MD Anderson, Dana-Farber, or the National Institutes of Health.

And, we have 30-plus support groups in Canada and the USA that meet generally on a monthly basis, so there’s a peer-to-peer interaction, and we provide education to all of those. And, one of the programs that I’m most proud of is for patients who don’t have access to an expert. We provide free virtual consultations with CLL experts from the top institutions through a Zoom-type platform that’s HIPAA-compliant so patients can ask their questions to a remote expert, that expert reviews their medical records, and then to their local hematologist so they get the benefit of a consult that they wouldn’t otherwise.

Nervous About a Second Opinion? How to Confront Your Fears

Nervous About A Second Opinion? How to Confront Your Fears. from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patients may be hesitant to ask for a second opinion to help guide their care and treatment choices. Dr. Brian Koffman shares his advice for confronting fears and becoming a confident self-advocate. Need help speaking up? Download the Find Your Voice Resource Guide here.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

See More From The Pro-Active CLL Patient Toolkit


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How Can Patients Advocate for Genetic Testing

 

Expert Advice for Newly Diagnosed CLL Patients

 

CLL Office Visit Planner


Transcript:

Dr. Koffman:   

It’s a relatively rare cancer, and most hematologists and oncologists are busy taking care of the more common cancers, like breast, colon, prostate, or lung cancer.

So, they don’t really have a lot of experience compared to a CLL expert who only sees CLL patients, or more than half their practice is CLL patients, in terms of taking care of those patients. There are roughly 20,000 hematologist/oncologists in the USA, and there are roughly 20,000 new patients diagnosed with CLL a year, so if you do the math, you can figure out a community hematologist might be seeing one new CLL patient every year.

So, you wouldn’t see a surgeon who does one hernia repair a year, you’d see one who does many every week. So – and, it’s not just that these people have more experience. There’s research that shows that there’s a survival benefit to seeing a CLL expert, and people live roughly two years longer – based on some old research – by just having an expert as part of their team.

Above and beyond that, CLL is being revolutionized in how it’s being treated, and there’s all kinds of new therapy, and what the best treatment today will be upstaged by a better treatment next month, perhaps. So, unless you’re really focused on CLL, you’re not gonna be aware of what the latest data, what the latest research is, so it’s critically important because they’re on top of what the latest research is, they’re on top of what the latest clinical trials are, they’re on top of the best way to use the new medications that are available, and they provide you with significant survival advantage and management of some of the potential complications with CLL.

So, some people are concerned about getting a second opinion because they’re worried that it might portray to their doctor that they don’t have trust in their judgement or that they’re not happy with the care that they’re getting. Well, as a retired physician, let me assure you that most doctors are very thick-skinned, and we generally welcome people getting another opinion – a second opinion – and medicine is collaborative, and so, most doctors aren’t hesitant about you doing that, and welcome that. Bluntly, if you have a doctor who doesn’t want you to get a second opinion, that would be, for me, a real urgency to get a second opinion.

If hesitant or nervous about getting a second opinion, what I would encourage you to do is think hard about what – whose skin is in this game. Who is the person who has the disease? Who is the person that’s gonna benefit from getting that extra information? So, what is the worst that could happen? The worst that could happen is that you could see the expert, get an opinion that’s identical to your own physician’s, and that just inspires confidence in what’s going on.

The other thing that could happen is there might be an alternative that’s more attractive – less toxic, more effective – and wouldn’t you kick yourself if you hadn’t taken that chance and pursued getting that extra information? So, it’s – every medical decision should be a shared medical decision, and it’s all right as patients to ask for that second opinion and just…not to be hesitant about doing it.

Really, again, it’s rare that a doctor is gonna object to you doing that, and if your doctor objects, then I think you’ve gotta look at what that means, and especially in view of the data, there’s a survival advantage to getting a second opinion.