How Is Treatment for Head and Neck Cancer Evolving?

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 Tamfrom 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. 

Do Telephone-Only Visits Qualify As a Telemedicine Visit?

Do Telephone-Only Visits Qualify As a Telemedicine Visit? from Patient Empowerment Network on Vimeo.

For head and neck cancer patients, do telephone-only visits really qualify as a telemedicine visit? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System explains care concerns that can be covered in telephone versus video visits – and patients who can benefit from the use of virtual visits. 

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So from a… Telephone-only visits have a lot of drawbacks to them, I think even virtually assessing a patient with regards to how they’re doing generally, a general physical examination is very important. On top of that, we have a lot of sensitive conversations in patients that have head and neck cancer, so it’s important to also read things like non-verbal body language, so definitely the video component is extremely useful for providers that are caring for patients with head and neck cancer. However, in patients that might not have access to video visits, might not have the technology, I think that the number one priority in our minds is that this patient gets the best care that they are able to get, and whether that this means a telephone-only type of a visit is possible for these patients, we adjust our…I guess we adjust our requirements, we adjust our ability to deliver care based on that, so that might mean touching base with the patient on the phone at first in order to understand exactly what they’re going through, talk them through the next steps so that they know what to accept in order to make their care more streamlined later on. I don’t think that telephone visits will completely replace either virtual visits or in-person visits, but I think that, again, they are a tool, and they’re a tool that especially patients that might be more disadvantaged, such as not having access to good Internet might not have access to the technology required for a virtual visit, those patients need to be considered when we consider utilizing telephone-only care. 

Is Telemedicine a Mainstay for Head and Neck Cancer Patients?

Is Telemedicine a Mainstay for Head and Neck Cancer Patients? from Patient Empowerment Network on Vimeo.

Will head and neck cancer care continue with telemedicine in the future? Watch as expert Dr. Samantha Tam from Henry Ford Health System shares her perspective on her expectations for the use of telemedicine versus in-person visits with head and neck cancer patients.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So while COVID-19 has forced us into utilizing telemedicine in context that we might not nearly have used them in the past, I think that telemedicine is here to stay, though perhaps not as wide spreading universal as it has been at the beginning of the pandemic. Telemedicine to me, seems to be a very good adjunct to our in-person visits, I think seeing patients and evaluating them in-person is essential in head and neck cancer throughout the treatment course. That being said, I think that telemedicine really adds a value into patient’s care, there are several ways that we have used this at Henry Ford in order to enhance access to our services, one is with patient intake, when we have some information, we can certainly start to…we can meet with you, get a good clinical history and understand exactly what is going on, and therefore expedite investigations that are required, and then condense our visits to just one in-person visit versus multiple in-person visits. Another way that I have used this is checking in with patients while they’re in the middle of treatment, sometimes patients are getting daily radiation, not close to my office, but I like to check on them to make sure from a symptom standpoint that they’re tolerating their treatment well. 

And certainly coming down for a visit would be impossible, so checking in with them virtually has been a good way to monitor treatment side effects and to ensure everything is going smoothly from that standpoint. With surveillance, there have been also options that way to check in with patients that are more on the survivorship end of things to see how things are going that way though, I often do like to see patients in follow up in-person just so that we can also complete an endoscopic examination as clinically indicated.  

What Head and Neck Cancer Treatment Side Effects Can Be Monitored via Telemedicine?

What Head and Neck Cancer Treatment Side Effects Can Be Monitored via Telemedicine? from Patient Empowerment Network on Vimeo.

For head and neck cancer patients, which treatment side effects are acceptable to be monitored via telemedicine? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System explains vital aspects for monitoring treatment side effects, key symptoms for patients to report, and some patient monitoring methods that are helpful in care.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

One of the most important aspects in terms of treatment side effects is understanding what the patient feels with regards to their symptoms and reporting this to the physician. Something that we’re using at Henry Ford currently is remote patient-reported outcomes measurement, which looks at several domains of symptomology that we are monitoring throughout your treatment. These questionnaires can be completed online remotely at home, and don’t necessarily need an in-patient visit. This is a platform that can be utilized to communicate with providers in order to understand what the treatment side effects might be, and also a standardized way to discuss with your physician exactly what kind of side effects you might have from treatment. 

So I think it’s important to be a self-advocate for your care, and so certainly as a provider, I’m happy to hear any kind of concerns that you have about side effects from treatment, pain, bleeding. I think one of the big ones is whether or not you’re doing well with swallowing and how your weight has been. Energy level is another major indicator about how much you’re able to take in and how well you’re tolerating the treatment. All these types of components are important things for us to know throughout your treatment course, and I think speaking up about any kind of concerning symptoms you have is important for your provider to know so that we understand exactly what’s going on. 

Tips for a Telemedicine Visit From a Head and Neck Cancer Expert

Tips for a Telemedicine Visit From a Head and Neck Cancer Expert from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients prepare for telemedicine visits? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System shares her tips for telemedicine best practices and tests that can be helpful used in conjunction with virtual care.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So in head and neck cancer, a lot of the virtual visits are mainly based on obtaining a clinical history and having a discussion with your provider verbally as opposed to a lot of physical examination, this is unfortunately the limit of virtual care, and definitely, especially in head and neck cancer, a lot of our examination is through into your ears, into your nose, into your mouth with endoscopic examinations weaved into it, and definitely like CT scans are useful as a modality, as a modality of investigation to have ready prior to your visit with your head and neck cancer provider. Tips that I have for families and for patients that are facing a diagnosis of head and neck cancer before your virtual visit is to make sure that you have any kind of questions that you have written down so that you can make sure that your provider is able to go through each one of these questions to ensure that you have a good understanding of exactly what the next steps are, or what the diagnosis is and what the plan might be moving forward. 

How Has Telemedicine Impacted Head and Neck Cancer Clinical Trials?

How Has Telemedicine Impacted Head and Neck Cancer Clinical Trials? from Patient Empowerment Network on Vimeo.

How have head and neck cancer clinical trials been impacted by telemedicine? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System provides her perspective on scenarios when telemedicine can improve clinical trial access and how care disparities can be changed through the use of telemedicine access.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

While I don’t have specific data on how clinical trial participation has been impacted through telemedicine, I believe that the impact would be several ways, one is that patients that might not be able to access in-person care at a certain center may be introduced to an interesting clinical trial and therefore seek care at a specific center based on that clinical trial, but also there may be patients that might not be able to access the clinical trial because they have not been able to access in-person care at those centers. My current research is not so much in the clinical trials realm, but more exploratory currently, and looking at how we can empower communities that may be at an disadvantage to access telemedicine and virtual care, especially in these times when all institutions have been moving more towards using technology in their delivery of care, so as to ensure that patients are not left behind just because of their potential disadvantages.

When Should Head and Neck Cancer Patients Seek In-Person Care?

When Should Head and Neck Cancer Patients Seek In-Person Care? from Patient Empowerment Network on Vimeo.

What are instances for head and neck cancer patients to seek in-person visits for care? Watch as expert Dr. Samantha Tam from Henry Ford Health System explains situations that warrant in-person visits to care providers and her recommended precautions to ensure optimal safety for in-person care. 

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So to protect yourself from the Delta variant of coronavirus, one of the most important steps would be for vaccination and also following national guidelines in terms of how to protect yourself generally, like good hand hygiene, mask wearing, et cetera, et cetera, in terms of trying to seek care virtually versus in-person, patients should discuss this with their provider to see exactly what they are comfortable with, some post-operative visits might be able to be moved to a virtual platform, but again, sometimes it is difficult to examine patients with…that have undergone complex head and neck cancer surgery on a virtual platform adequately. So I think that a one-on-one discussion with your provider should give you a good idea about what can be moved in-person onto a virtual platform, and that way you can ensure that you have the adequate amount of care that you need for your head and neck cancer. 

Okay. Seeking in-person care, I think is especially important for patients that are having symptoms from their head and neck cancer, these patients are the ones that I would consider at highest risk for some type of abnormality on physical examination that we might not be able to catch on a virtual platform, and patients that are far out from surveillance and well into survivorship, these visits might be less necessary to be in person. So again, I think it’s important for you to discuss with your provider regarding whether or not they think that you need to be seen in person versus virtually. 

Disparities in Telemedicine Access for Head and Neck Cancer Patients

Disparities in Telemedicine Access for Head and Neck Cancer Patients from Patient Empowerment Network on Vimeo.

Which head and neck cancer patients have experienced disparities in telemedicine access? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System explains patient demographics with less access to care and how these disparities can be reduced.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So, during the pandemic, there was a large uptake of virtual care that was pretty unprecedented previously, and a lot of the times patients didn’t have any other options aside from accessing care through telemedicine because of the precautions that were taken within institutions in limiting in-person care. With this, we saw that there was a very specific demographic that we’re able to access telemedicine, and there were some patients that potentially could have been left behind. These patients are usually patients that have lower SES (socioeconomic status) indicators such as lower median household income, or perhaps lack of insurance coverage and the difficulty, especially in head and neck cancer, is that a lot of the times, these are the same patients that are at highest risk for head and neck cancers or have the highest needs in head and cancer. And certainly understanding who these patients are is extremely important, so that we ensure that we have equitable delivery of health care to these patients, and we don’t utilize these platforms that put these patients that are already at a disadvantage at more of a disadvantage.  

Head and Neck Cancer, What Are Telemedicine Challenges and Opportunities?

Head and Neck Cancer, What Are Telemedicine Challenges and Opportunities? from Patient Empowerment Network on Vimeo.

For head and neck cancer patients, what barriers and opportunities have emerged from the addition of telemedicine? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System shares insight about obstacles that she has seen for some patients and some helpful ways these challenges have been overcome in patient care.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So there are lots of challenges and opportunities for virtual care and patients with head and neck cancer. One of the challenges is the fact that a lot of head and neck cancers occur within the upper air or digestive tract and therefore it’s very difficult to examine patients or to get an idea of the extent of their cancer, or the disabilities, or difficulties patients encounter as a result of their cancer, because of where the cancer is. On top of that, a lot of patients present to us with difficulties with communication, either they have hoarseness because of glottic cancer or maybe they have airway distress and they already have a tight tube resulting in their inability to formulate well, especially over virtual platforms such as the telephone or virtually through the Internet. These are the major challenges though, they can be overcome with things such as typing answers through the chat functions, as well as writing on a tablet in order for us to read. However, there have been a lot of opportunities for patients with head and neck cancers, I think that the major opportunities are with patients that are seeking help from allied health professionals such as speech language pathologists, psychologists, dietitians, social workers, a lot of these providers that are very involved in the care of patients throughout diagnosis, treatment as well as surveillance. 

These visits are sometimes not requiring any physical examination, not requiring any endoscopic examination and may be well completed through a virtual platform such as telemedicine.  

How Has the Pandemic Reshaped Head and Neck Cancer Care?

How Has the Pandemic Reshaped Head and Neck Cancer Care? from Patient Empowerment Network on Vimeo.

How has head and neck cancer care changed from the COVID-19 pandemic? Watch as expert Dr. Samantha Tam from Henry Ford Health System shares situations for in-person vs. telemedicine visits.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

COVID-19 has significantly changed how healthcare is delivered to patients with head and neck cancer. Traditionally head and neck cancer care has been delivered in-person visits because patients with head and neck cancers are often difficult to examine on a virtual platform, and on top of that, many patients have difficulties with communication, just given the ramifications of the disease. However, with COVID-19, we had a conscious effort to shift a lot of our care from in-person to virtual visits, and the area of telemedicine has been therefore greatly expanded in patients with head and neck cancer diagnosis. How head and neck cancer patients have been able to utilize telemedicine has been varied according to whether or not these patients are coming in for new diagnoses for follow-up care, for post-op diagnoses or for care during their treatment. And I feel that virtual care is really complementary as opposed to a substitute for patients with head and neck cancer because certainly there are innate difficulties in communication through the virtual platforms, as well as innate difficulties with examining patients adequately through the virtual platform. 

That being said, there’s a lot of care, for example, with allied health professionals, or surveillance care that can be completed on a virtual platform that may use healthcare delivery to patients that may not be able to access in-person care on a regular basis 

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.


If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.


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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 


This program is supported by Blueprint Medicines, and through generous donations from people like you.

An Introduction to Head & Neck Cancer

This was originally published by Cancer.net on 8/20/18 here.


Dr. Ezra Cohen explains how head and neck cancer is categorized, current treatment options, and the latest research developments in this introductory patient education video.


Transcript:

Cancer.Net®: Doctor-Approved Patient Information from ASCO®

Head and Neck Cancer: An Introduction

What is Head and Neck Cancer?

Ezra E. W. Cohen, MD, FRCP, Member, American Society of Clinical Oncology:

When we think about head and neck cancer, we are really talking about diseases or cancers that occur essentially above the clavicles, but not including the brain. Brain cancers are really a different entity. So these are cancers that start in the mouth or the throat. Often we see patients with cancers that originated in the thyroid gland or the salivary glands.

Essentially, that part of the body that is responsible for speech and swallowing, communication. And most of those cancers start on the surface, what we call the mucosa of those areas, the lining of the mouth or the throat or the tongue.

Types of Head and Neck Cancer

Dr. Cohen:

The primary types of head and neck cancer we really put into, I think, three major categories and they are based on their origin in terms of the tissue. So the main type, and I would say this accounts for 90 percent of the cancers that we see, we call squamous cell carcinomas. Those are cancers that start in the lining of what we call the upper air digestive track, so the mouth, the throat, the upper esophagus, the voice box or larynx, the upper trachea.  Those are all lined by a mucosal surface that when there is a cancer from it, we call those squamous cell carcinomas.

Then the second most common are thyroid cancers, they come from the thyroid gland. Those fall into a couple of categories, either medullary thyroid cancer or what in broad terms what we call differentiated thyroid cancer. And then the third category that we see most often are cancers that start from the salivary glands or salivary gland cancer.

Potential for Cure

Dr. Cohen:

When we think about a head and neck cancer diagnosis and when a patient gets a diagnosis of head and neck cancer, one of the things that they need to begin to think about are what their potential for cure is and potential for organ preservation.

Let me expand on both of those. In terms of this disease, the majority of patients that we see present with what we call local regional disease. And what we mean by that is that they have a tumor that often has spread to lymph nodes, but has not spread widely. So no metastases to other organs like the lungs or the bones or the liver and what we are really talking about is disease that is confined to the area of the head and neck.

And that’s important because those patients we would consider for curative intent therapy. We are going to try to cure that disease. And that becomes obviously incredibly important to both the patient and the physician. And the first thing that we think about when we see a patient with head and neck cancer is, is this a patient that can be cured of their disease.

If they are, that obviously takes us down a road of what we can do to cure that patient. And if they are not, that takes us down a completely different therapeutic avenue. Then we begin to think about well, as you can imagine, because the organs of the head and neck are so critical to day to day interaction, to really what defines us as human beings – our ability to talk to each other, our ability to have a meal, to eat normally, our facial expressions.  So much of what we do as people, as humans happens above the clavicles.

And so functional preservation becomes so important in patients with head and neck cancer, especially ones that we are going to try to cure. So the next question that we ask is how can we cure this patient and return them to normal function. And that is exactly the questions that patients should be asking their physicians. Do I have, can I be cured of this and if I can be cured of this, how can I maintain my normal activity once I am done with therapy?

And then we need to think about what are the other medical professionals that are going to be important in this person’s care. So because many patients have, will get radiation to the mouth or the oral cavity is going to be included in the radiation field, dentists and dental professionals become incredibly important to the ongoing care.

You can imagine that as we, as patients go through therapy they are going to have trouble swallowing. So nutrition and speech and swallow therapists become incredibly important.

Treatment Options

Dr. Cohen:

Going back to the idea that many of our patients will present with local regional disease, the main treatment option really focuses on curing these patients. And when we talk about curative intent therapy, we are really talking about three major modalities – surgery, radiation therapy and medical oncology or chemotherapy.

And what we’ve done really for the last couple of decades is learned how to integrate those three modalities to produce the best outcomes possible. For some patients it is going to be surgery upfront, possibly followed by radiation or chemotherapy and radiation. For other patients, we want to, and for many patients, we want to think about a non-surgical approach in an attempt to preserve function and preserve the organ.

And then lastly, I do believe it’s very important to ask about clinical trials. Because not only is this the way that we move the field forward, but honestly, clinical trials offer novel therapies to patients, new approaches to patients that very often prove to be the next standard of care, especially now with the excitement around immunotherapy. So I think it is very important to ask what clinical trials are available to me for the disease that I have.

Beyond that, I think the important things to ask are what should my caregivers be thinking about, what support team do I need to have in place. And it is good to think about that proactively and get that in place. How much help will I need as I go through this treatment and who is going to be available to supply that help.

Latest Research Developments

Dr. Cohen:

When we think about where the research is going and the most recent research advances in head and neck cancer, I really like to group them into two categories. The first is what we are learning about the cancer and our better understanding of really the biology of this disease. And the second falls into what are the new therapies, what treatments are coming online or about to come online that we can take advantage of to improve outcomes for patients.

But we are learning that clearly there are two distinct types of squamous cell carcinoma, the head and neck. One is related to a virus called human papilloma virus or HPV, the same virus that causes cervical cancer and some other cancers. And we are understanding that HPV related head and neck cancer behaves a lot differently than non-HPV related head and neck cancer.

And what I mean by that is the patients tend to be younger, they are often non-smokers and non-drinkers. And that is a real, that is a very important thing to point out. Because we are learning as practioners is that patients don’t need to smoke to be at risk for head and neck cancer. And in a non-smoker, we need to be still concerned if somebody begins to complain of symptoms around the head and neck area, pain, a lump in the neck. We need to be very concerned and begin to think about is this possibly a viral related cancer, even in a non-smoker and patients, of course, should be aware of that as well.

So HPV positive head and neck cancer behaves differently. And then HPV negative cancer, which is often related to tobacco exposure, occurs in patients who are a little bit older. It has a different presentation in terms of where it occurs, it often occurs in the voice box or the oral cavity. And again, it is often associated with, especially cigarette smoking.

We have also begun to understand that there are mutations and alterations that we can target specifically. So for instance, there are patients who have mutations in certain pathways or in certain genes that now we have drugs that specifically target those genes.

We have also begun to understand that immunotherapy is going to play an incredibly important role in this disease for both HPV positive and non-HPV related head and neck cancer. And that we are seeing some incredibly exciting data with the first wave of immunotherapy drugs in this disease. In fact, now we have randomized data of an immunotherapy drug versus standard of care in patients that are current in metastatic disease that are showing a dramatic improvement for immunotherapy.

And truly, this is just the first step, the first drug that has shown this type of efficacy. We are going to see many, many more in the next few months and an explosion, really, in the next few years for immunotherapy in head and neck cancer.

Where to Get More Information

Dr. Cohen:

For head and neck cancer, there’s some especially relevant websites that would be worth looking into. Cancer.Net is a site designed by the American Society of Clinical Oncology specifically for patients to address patient questions, patient needs, caregiver questions and needs. And it’s really geared towards the patient. So Cancer.Net would be certainly one of those.


[Closing and Credits]

Cancer.Net®: Doctor-Approved Patient Information from ASCO®

ASCO’s patient education programs are supported by Conquer Cancer Foundation of the American Society of Clinical OncologyConquerCancerFoundation.org 

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life from Patient Empowerment Network on Vimeo.

After Diana’s cancer diagnosis, she was told that she had only months to live. But, after meeting fellow head and neck cancer patient Sajjad Iqbal online, Diana’s path changed dramatically and she is now cancer-free. Hear their inspiring story about the power of connecting with other patients.


Transcript:

Sajjad:                        

My name is Sajjad Iqbal. I am a physician and also a cancer patient. I have the honor of serving on the board of Patient Empowerment Network.

Diana:                         

I’m Diana Craig from Auckland, New Zealand.

Sajjad:                        

I was diagnosed with a gland cancer, which is a salivary gland, on the left side of the face. The actual histology was a salivary duct carcinoma. It was diagnosed in February of 2002.

Diana:                         

In January of 2018. I was diagnosed with squamous cell carcinoma HPV 16 on my tonsil and soft palate.

Sajjad:                        

I do a lot of counseling for the cancer patients and mentoring and advocating and all that. And as a part of that, I have joined a head and neck cancer support group, which is based in New Zealand. It’s on Facebook. And there are some great people there who advise together cancer patients. Diana posted a cry for help back in May of this year, May of 2019, where she was just given the news that her cancer had recurred in her lungs and near her trachea. And her oncologist gave her a very grim prognosis and he thought that the medication had a very small chance of success.  

And he told Diana she had a few months to two years to live. Diana was devastated. She posted on that Facebook group, and I reached out to her to introduce myself, to tell her how I have managed my own cancer, and I told her that I could try to help her if she would be willing to share the information with me.

Diana:                         

Initially, I hadn’t heard of him before.

And I felt I needed to do some research, and I was told by everybody what a good guy he is, and to absolutely go down that road. So, I happily gave my information and certainly after the first conversation or interaction with him, I knew I was in good hands. Very much so. It was, to me, I used to call him my angel, my guardian angel, because I really felt safe and informed and encouraged. And his mantrais hope and determination and that is such a valid mantra when you go through cancer.

And it’s something that I said to myself oftentimes because it was so poignant, and it’s everything that you have to be and do to empower yourself and to be proactive, to find the best possible outcome for yourself.

Sajjad:                        

You know, as you know, I have written a book about my amazing cancer journey. The book is called Swimming Upstream. And a lot of other people have found it very inspirational. So, my story was not a whole lot different from Diana in this respect: that I was given a very grim prognosis back in 2002.

I was told that I had less than 30% chance of surviving for two years and I was also told that there was no five-year survivors with this cancer. And I made it my goal to beat the odds. And I used to say that in that case, I’ll be among the 30% and if no one has survived five years, well, I’ll be the first one. So, the hope and determination that Diana just mentioned, that’s my motto. Hope and determination. And I tried to instill that in Diana.

Diana: 

It certainly empowered me or put me in the right direction as to, I mean, I like to be moving, I like to be able to fight the fight if I know where to fight to. And also, know what questions to ask. I mean, when you’re in that situation, you are told how it is. And you don’t know what you don’t know. And unless you’ve been informed by somebody else or do the research yourself, and even then, that’s pretty dubious, because you stumble across information that you don’t want to know, and a lot of it’s scare tactics. But with his knowledge, with his background, with his first-hand experience of going through what we have gone through, gave me the confidence to do everything that he said.

Sajjad:                        

And I always recommend to my friends, other patients, that going to your oncologist about the cancer treatment is so much different than going to a doctor for your blood pressure or your bronchitis or so on.

This is an area where we need to be fully prepared. We need to go in and have a dialogue with our doctors who are treating our cancer and this is a matter of life and death. Literally, life and death. So, there is no room for just sitting there passively and just listening to everything and agreeing to everything. We must ask a lot of questions to our doctor. They should be, not only willing to answer our questions, but they should be welcoming our questions. So, if a doctor does not welcome your questions, does not give you plenty of time, does not explain everything that he or she wants to do, then that’s not the right doctor for you. And you’ve got to move on, and quickly.

Diana:                         

Where would I be without meeting Sajjad? I would have no hair at this point. I would be in the middle of chemo and probably K-truda. I don’t believe that I would have such a radical improvement so quickly. Because mine had gone after three infusions, which is nine weeks. So, I floundered the first time because I felt like I needed the help and I couldn’t get any. And the last time, I felt so much more in control, and anybody would think I’m a control freak. And let me tell you, I’m not. At all.

And also, being on my own, as well, I didn’t have a partner there to talk to. It was heaven-sent. And I said to him, “If I come out okay, I’m going to come and see you.” And here I am. Coming to see you. Because it meant so much to me. It really meant so much to me. It really did.

Sajjad:

Yes, it did.

The medical science is moving at an astonishing pace to find new medicine, new modalities, to treat cancer. We cannot be  – the patient must not get bogged down in the statistics of, oh you have this percent chance of survival, or this percent chance of death. Because those numbers don’t mean anything anymore. They’re old numbers. And to fight the cancer, we need our immune system to be involved in the fight.

If we get depressed, if we lose all the hope, the immune system shuts itself down, and that helps the cancer. So, number one thing is to always have hope. Always remain optimistic. And number two is determination. You determine that you are going to fight this and you are going to survive. And then, having those two tools at your disposal, become the empowered patient. Learn as much as you can about your cancer. Talk to other people, go to the support groups. And, again, let me plug Patient Empowerment Network. Go to our website, learn about the cancer. Then go to your doctor and question them and find out how you can improve your treatment. And that’s the way you fight cancer.

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains from Patient Empowerment Network on Vimeo.

Dr. Sangmin Lee shares the benefits of meditation and yoga and explains how mindfulness can affect your overall health.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

How about this one? A positive attitude and mindfulness can improve treatment response.

Dr. Lee:

Absolutely. Absolutely. Treatment for leukemia can be tough. Some of the treatment involves intense chemotherapy. Treatment for leukemia can involve stem cell transplant. And a key important aspect of treatment is being healthy and being optimistic about treatment, because a lot of treatment can have side effects, and side effects can be not as apparent if you are physically more active, and in a good state. So, I think that having a positive outlook is very, very important.

Patricia:

Quality of life issues are difficult for some people. How do you talk with your patients about their quality of life, and staying healthy during their treatment?

Dr. Lee:

So, quality of life is absolutely important. I mean, the whole point of treating leukemia and any other treatment is not only to address the leukemia, but also have good quality of life. So, when discussing treatment options, you always have to balance the quality of life and side effects versus potential benefits. So, that’s always on our mind when discussing potential treatment options, and how it impacts the quality of life. Throughout the treatment process, we always tell our patients that being active, and having a good quality of life, and having good nutrition, is absolutely important, because that’s a key aspect of treatment for leukemia.

Patricia:

What about meditation and yoga for coping with anxiety around cancer diagnosis and treatment? Mindfulness.

Dr. Lee:

Absolutely, absolutely. Those can help. Especially having leukemia, it’s very life-changing, so a typical way that patients are diagnosed with acute leukemia is patients live a normal life, and then they develop, all of a sudden, abnormalities. And they’re diagnosed with acute leukemia, and it can be very sudden. And it can be very difficult. So, that can understandably make patients have anxiety, and other issues.

And I believe that meditation, and yoga, and other exercises can absolutely help cope with this.

Patricia:

And there’s tons of resources for meditation and yoga out there, that are reliable.

Dr. Lee:

Yes. Yeah.

Patricia:

Yeah. Should patients regard yoga and meditation as part of their treatment, as part of their self-care, during this process?

Dr. Lee:

Absolutely, absolutely, if the patients are into meditation and yoga. Meditation is very harmless, and it can absolutely help in terms of guiding their mind through their treatment journey. Yoga is good if you’re physically able to do it. So, one caution is that, if you’re not someone who does yoga normally, then you should start off slow, and not push yourself as aggressively.

Does Cannabis Oil Have a Role in Cancer Treatment?

Does Cannabis Oil Have a Role in Cancer Treatment? from Patient Empowerment Network on Vimeo.

Is it just a trend or could cannabis oil truly have a role in cancer care and treatment? Dr. Sangmin Lee share his perspective.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

The use of cannabis oil is becoming prevalent. Does this have a role in cancer care and treatment?

Dr. Lee:

Absolutely. So, we use it for a lot of side effect management. So, cannabis can be helpful, in terms of appetite and nausea, for example. So, we often use it in conjunction to manage some of the side effects that patients can have throughout their treatment.

You should consult with your medical team, and of course, I should say that laws differ state by state, so it doesn’t apply to every state. But when it’s available, it can be a valuable addition.

Patricia:

Sure. Discuss that with your physician.