PEN Blog Archives

Health Care and Social Media: Importance of Facing Their Challenges

Social media has greatly influenced many aspects of our society, particularly healthcare. Through social networking sites, blogs, forums, and similar platforms, it has become easier for people to find health information and get the care they need.

But the use of social media in healthcare is not without challenges. Concerns over breaches of patient privacy, the abundance of unreliable health resources, violation of personal–professional boundaries, and many others have surfaced over the past years, which makes both the public and health professionals question the impact of social media on health care.

The Role of Social Media in Health Care

Social media is one of the most popular channels used by healthcare providers (HCPs) to communicate with their patients and promote health. In fact, 99% of hospitals in the U.S. have an active Facebook page. The use of other social networking platforms like Twitter and Instagram in healthcare is also on the rise.

Health education.

Perhaps the biggest benefit of social media in healthcare is information dissemination. It allows health institutions and organizations to share discoveries, research, health tips and recommendations, and relevant news to the people.

Patient care.

Another benefit of social media in healthcare is it helps providers build positive relationships with patients. Gone are the days when people will have to wait in line for hours to have a consultation with their doctors. Today, they can send queries or book an appointment online and get updates from their HCP. This, in turn, strengthens the trust between them and improve the patient experience.

Healthcare promotion.

83% of internet users or 93 million Americans have searched for health-related information online, ranging from mental health, disease management, immunizations, etc. Moreover, 60% of social media users trust the information shared by doctors and other health professionals. Because of this, care providers now utilize social media to promote their services.

Challenges

The online world is an open space. Everyone can upload information without verifying it, view someone else’s data, and in worst cases – steal someone else’s data. Managing social media can also be burdensome for healthcare providers who – as we know it – are some of the busiest professionals there are.

Patient data privacy.

HCPs take extreme caution in sharing information online, afraid that it patient’s privacy. To avoid this, all healthcare providers should adhere to the HIPAA Compliance which is a set of regulatory rules concerning the privacy, security, and integrity of confidential health information.

Social media management.

Healthcare professionals use social media to promote their services and provide better care to their patients. But managing social media is not easy. To reap its benefits, healthcare providers should keep their followers engaged, provide useful information, and respond to the queries of patients. All these take time, strategy, and commitment. For these reasons, many healthcare providers make use of all-in-one marketing platforms like Adrack that can automate social media campaigns, saving them time and resources.

Poor-quality information.

Information on social media circulates easily. While social media is a great channel for promoting health education, a lot of health information shared on various sites lack quality and credibility. Medical information may also be unreferenced or incomplete. It can also be changed by anyone.

Healthcare providers need to remind their patients that not all health information they see on social media is true. They should also guide them to peer-reviewed websites where all information is subject to quality control.

Concerns over professionalism.

A major risk in the use of social media in healthcare is the possibility of posting content that can damage the reputation of providers, students, and the healthcare institution as a whole. Physicians are very concerned that people might lose respect for them if they share inaccurate information or judge them if they share their personal opinion over certain topics. Many healthcare providers also fear that people might perceive them negatively through photos, comments, likes, and other social media activities. Ensuring that they are providing only relevant and appropriate information is the best way to avoid such issues and controversies.

Patient–HCP boundary.

Boundary violations can occur without the physician and the patient even knowing it. A lot of times, it’s the patients who initiate online communication by sending ‘friend requests’ to their physicians. Unknowingly, this violates boundary policies between healthcare professionals and patients. Rather than communicating on social media channels, HCPs should consider setting up a website to be used for sharing posts regarding medical events or services. This way, patients can follow updates in a more professional manner. Also, HCPs should refrain from using investigating the personal behaviors of their patients in making a clinical judgment, such as knowing whether or not they have quit smoking or are observing a healthy diet.

When used responsibly, social media can be a powerful tool to promote health education, build positive HCP-patient relationships, and improve healthcare quality.

ASH 2019: Timely Myeloma Care Makes a World of Difference; Experts Prioritize Addressing Race-Associated Risks

Diverse Health Hub and the Patient Empowerment Network will partner to produce ongoing educational programs beginning in 2020. These programs identify demographic disparities found in existing diagnostic and treatment practices for multiple myeloma. Program content and educational resources will supply actionable and meaningful material tailored to healthcare providers, patients, and patient care teams. When patients feel heard and understood by their healthcare providers, they are more likely to participate in clinical trials and advocate confidently for treatment options. Our joint goal is to empower a targeted and unique population of myeloma patients to spark life-saving conversations with their providers. Be sure to sign up for PEN’s newsletters to learn more.


Onsite at ASH 2019, Diverse Health Hub interviewed prominent myeloma researchers, including questions from our members.

Is earlier effective treatment for a deeper response keeping myeloma at bay? Yes. According to new evidence around timing of treating myeloma presented at ASH 2019, immunotherapy drug daratumumab (DARZALEX) demonstrated it could repeatedly attack marker CD38 – a game changer. Dr. Sikander Ailawadhi sheds light on these new findings: “In the past the thought was that once the patient was treated by a drug that targets one particular marker that whole pathway or that mechanism of action is gone, but there was data presented at ASH, which we are all very encouraged about. Patients who have let’s say been treated with daratumumab (DARZALEX)—so one drug affecting that pathway – when they had disease progression at some point, they were treated with a brand-new drug going in for that pathway and the patients got very good deep responses.Watch the complete interview below.

  • Myeloma Treatment: Earlier effective treatment for a deeper response to keep disease quiet
  • New Drugs: 2020 to be a big year for myeloma, drug approval buzz
  • Encouraging Data: News at ASH 2019 reveals CD38 marker can be targeted repeatedly

Are disparities shortening the lifespan of a subset of myeloma patients? Yes. Several published papers indicate that the burden of disease was higher for a subset of myeloma patients as a result of socioeconomic status, age, race, lack of resources, access, and insurance type. Dr. Ailawadhi identifies the need for programs that educate both patients and providers to mitigate underlying disparities. Watch the complete interview below.

  • Access to Care: Significant number of minority patients unaware of medical record access
  • Burden of Disease: African Americans and Hispanics get treatment later than whites; costs tend to be higher for minority patients
  • Observation: More frequently diagnosed with myeloma later stage, at a younger age
  • Need: Educate patients, educate providers. Patients need to be their own advocates and direct the conversation with their providers in order to get to the right expert care

What role does education and awareness play in the diagnosis of ethnic myeloma patient populations? Despite advances in the treatment of multiple myeloma, Dr. Ajay Kumar Nooka identifies a gap between patient education and awareness of current therapeutic options. Dr. Nooka discusses how myeloma presents in various ethnic groups, and identifies disparities in access to initial treatment for African Americans and Hispanic populations. Nooka says, “education and awareness is the biggest gap we tend to see.” Watch the complete interview below.

  • Good news: “Really good time in myeloma, more therapeutic options”
  • Need Improvement: Education and awareness gaps still need to be filled; disparities among people of color, long road to diagnosis, delays and access to drugs
  • Clinical Trials: Lack of minority awareness and participation in clinical trials contributes to treatment disparity

About Diverse Health Hub:

Diverse Health Hub is a health equity education and awareness channel producing educational content for both patients and providers in order to bridge the gaps between healthcare practices and the needs of multicultural communities.  Diverse Health Hub works directly with a diverse patient and respected provider population in multiple therapeutic areas to promote cultural competence in healthcare. The organization believes access to these diverse perspectives cultivates culturally competent communities.

Three Night Time Activities To Help Cancer Patients Fall Asleep Quickly

Battling cancer is, undoubtedly, tough. On any given day, you might find yourself feeling so sick that you can’t even get out of bed. Being relegated to bed and struggling to even fall asleep can feel utterly disheartening. Adopting some healthy habits in your sleep routine can help to ease your body and mind into sleep more quickly and easily, letting you get some much needed rest and recharge.

Why Does Cancer Alter Your Sleep?

There are a lot of side-effects that you might experience as a result of your cancer treatment. Though one of the most common side-effects is fatigue, many patients also find that they have difficulty sleeping, which only exacerbates their feeling of  fatigue and sleep-deprivation. These sleeping problems can be the result of many factors such as newly developed sleep disorders, physical triggers, and psychological triggers.

Sleep Disorders

It is incredibly common for cancer patients to experience insomnia, which refers to any number of factors that make it difficult for someone to fall asleep and/or stay asleep. People with a serious illness are at an increased risk for insomnia. In fact, while about 20% to 30% of the healthy population suffers insomnia, over half of all cancer patients have reported facing periods of insomnia.

To be clear, insomnia is not caused by cancer, but it is a precipitating issue that results from the physical and emotional stress that often accompanies a cancer diagnosis.

Other sleep disorders may also manifest, such as sleep apnea, hypersomnia, circadian rhythm disorders, parasomnia, and restless leg syndrome. All of these make it difficult for sufferers to fall asleep and sleep soundly through the night, therefore deteriorating sleep quality and causing daytime fatigue and exhaustion.

Physical Triggers

Cancer can cause a great deal of pain and discomfort, which makes it understandably difficult to fall asleep as well. Tumors and treatments alike may result in troublesome pressure in isolated spots on the body or all throughout, as well as gastrointestinal issues, breathing problems, fevers and itching, to name just a few physical symptoms. When your body is uncomfortable, it is incredibly difficult to relax and lull yourself into restful sleep.

Psychological Triggers

Additionally, cancer comes with its fair share of life changes and psychological stressors. Fear and anxiety related to your diagnosis and prognosis alone can be enough to keep you up at night.

Following your diagnosis, you might also experience career, relationship, and body image changes which cause additional stress. We understand that cancer can be a distressing experience, and many patients are at an increased risk for anxiety and depression.

If you are experiencing any troublesome side-effects, whether they are related to your sleep pattern, your physical well-being, or your mental health, it is important to consult your oncologist and other medical professionals for their advice and assistance in easing your symptoms.

How Having A Routine Makes It Easier To Fall Asleep And Sleep Well

For the sake of your health and quality of life, sleep is perhaps the most important thing you can do for yourself. A good night’s sleep can increase productivity, improve mood, and expedite the body’s natural healing processes. This is a vital part of everyone’s life, not just those who are battling illness—still, up to half of all Americans report not getting enough high-quality sleep each night.

If you are kept up by physical pain or emotional stress, implementing a bedtime routine that works to calm your mind and body in preparation for sleep might be the change that you need. Your routine does not have to be overly complicated, especially if you don’t have a whole lot of time or energy in the evening, but a few moments of intentionality before bed can work wonders for your sleep quality and relieve daytime fatigue and sleepiness.

1) Take A Bath

We all like to be warm and cozy in bed at night (hello, fuzzy blankets!) but it is actually really important for your core body temperature to be fairly cool in order to induce sleep effectively. Our bodies follow circadian rhythms which dictate when to sleep and when to wake up. At night, your body naturally cools down and begins to release melatonin and other sleep hormones. Taking a bath or warm shower before bed can have several positive benefits to your sleep, not the least of which being a reduction in your core body temperature.

It may seem counterintuitive that soaking in hot water helps to cool you down, but when you get out of the tub the water begins to evaporate from your skin, cooling your core and cuing your circadian rhythm to do its thing. Baths also improve circulation, ease aches and pains, and help you relax and disconnect before bed.

If you decide to implement a bath or shower into your bedtime routine, go ahead and make it a real treat for yourself. Even just fifteen minutes of uninterrupted relaxation time can have major benefits. Light a calming candle or turn on soothing music, allow yourself to let go of any stressful thoughts or to dos and just breathe. We recommend bathing about one to two hours before bed so that your body has enough time to fully cool down and reap all the cleansing rewards of your pre-slumber soak.

2) Stretch

Practicing some simple yoga stretches before bed can also help sooth your mind and body before bed. In fact, exercising regularly has been seen to have major benefits on sleep quality. Even if you are someone who abhors spending time in the gym or for whom running is a form of torture, you can get in touch with your body and improve your sleep with just a few gentle stretches or a basic yoga practice before bed.

Getting your body moving releases endorphins and enhances mental clarity. If you plan on participating in a workout where you break a bit more of a sweat, we recommend scheduling that earlier in the day so your body isn’t too warm or wired before bed. Stretching and breathing exercises, however, have the same positive benefits and can be done right before bed as they help to relax your mind and body.

Not only does yoga loosen up your muscles and help to relieve pain, it also encourages mindfulness and developing a trust in one’s own body. After a cancer diagnosis, it can be difficult to have faith in your body’s ability to keep you healthy. When you practice yoga, however, the process allows you to see your strength and flexibility improve over time. You will be amazed by what your body is able to do!

Getting in touch with your mind and body through a yoga practice or stretching routine has also been seen to have positive spiritual benefits for practitioners. No matter what your spiritual discipline is, taking time out of your day to clear your mind and ground your body can be enlightening and spiritually encouraging. Use the time that you are stretching to engage in prayer, meditation, or simply focus on controlling your breathing.

3) Keep A Journal 

Do you find that as soon as your head hits your pillow it begins swirling with all of your unfinished tasks and worries? You are not alone! Writing in a journal each night before bed can help to ease your mind and stave off stress and anxiety that commonly keeps you up at night.

What you decide to write is up to you. You can jot down a recount of what you did throughout the day, or make a plan for what you intend on doing the following day. Perhaps you have a mantra of aspiration phrase that encourages you? Try writing this down each night or compose a list of things that you are grateful for or proud of from each day. If you are struggling with day time fatigue, using your journal as a place to record your daily fatigue level (on a scale of 1-10) and the activities that you participated in throughout the day can be useful for figuring out your fatigue triggers and working to manage your energy efficiently.

Ultimately, having a place to clear your head and process your thoughts is a great addition to any bedtime routine. It does not have to take a whole lot of time, nor does it have to follow any sort of structure. This journal should be for you and you alone, so don’t overthink it, just get to jotting (and then get to snoozing!)

Wrapping Up 

Ultimately, changing your routine can create a sense of regularity and control, helping to ease your mind and body into sleep. Routine changes, however, are no substitute for medical care and a strong support system. So, if you are having trouble sleeping, do not hesitate to mention it to your doctor as this might be a symptom of a larger problem.

Questions Answered About digital sherpa®

After participating in a digital sherpa® workshop with Cancer Support Community in Ann Arbor, MI, we sat down with a student volunteer (“sherpa”) and a cancer patient (“slimber”) and asked about their experience.

Climber

1. What do you think are the benefits of social media and technology to people with cancer and care partners?

Personally, I think that technology is very helpful. To be able to communicate with a doctor’s office outside of work hours helps when I have a non-urgent question.  
I’m still figuring out how social media is helpful. Doctor’s are so busy that to ask for interaction in real-time would be unfair, to them and to patients. However, it is helpful to be able to communicate in real-time with other patients and caregivers who are going through the same type of issues.  

2. What do you think are the main barriers to people using technology to assist them on their cancer journey?

A main barrier from my perspective is that when someone get diagnosed with cancer, there is a sudden jump from very few doctors to too many doctors and offices. Suddenly, everyone wants to give me information, get information from me and know how I am. This is not all attainable from one place, so many of web addresses suddenly need to be found, remembered, passwords added and remembered, etc. With treatment brain fog, fatigue or age related issues, this is very difficult. 

3. What are your thoughts on working with the students today? Do you think each generation has something to learn/teach other generations? If so, what?

Working with the students was great! Their familiarity with the web and the pages was very helpful.  
We do have things to teach each other and points of contact and building communication with common ground start the process.

4. Was there anything that surprised you about today’s workshop?

How easy it was and how much information is available.

5. What is one thing (or more!) that you learned at today’s workshop?

I learned about the Registry, Healthtunes, and , although I don’t need it now, ridesharing.


sherpa

1. Why did you volunteer with the digital sherpa® Program?

I volunteered with the digital sherpa® Program because I resonated with the mission of the program – to empower patients. Although patients go to health care facilities to address concerns about their own bodies, the complexities of treatment, especially cancer treatment, can pose barriers to playing an active role in their care. I think the digital sherpa® Program is a great way to help patients access resources in their journey and connect with other people with similar experiences. I also thought the sherpa Program was an easy way to help others, especially since I’ve grown up with technology all around me.

2. What surprised you the most about your experience today?

What surprised me the most was how the man I was paired with held onto every word I spoke and looked at me expectantly. When I talked about the resources provided by the cancer support community and how to fill out the demographic information, he listened whole-heartedly and I felt the weight of my words. It was a unique experience taking the lead and being able to give advice.

3. What are your thoughts on working with the participants today? Do you think each generation has something to learn from/teach other generations? If so, what?

I enjoyed working with the participants because I was paired with a man who was his wife’s caregiver. When he was unsure about whether to join an online support group, he turned to her. I think our generation can learn from the older generation that sometimes less is more, and it is important to keep your information secure. When I asked my participant if he wanted the website to save his password he said no because a person shouldn’t stay logged in.

4. Based on what you experienced today, what do you think are the main barriers to older people using technology to assist them on their cancer journey?

One barrier is not having a person to turn to for help or the ability to search for solutions on the internet. Typically if I have trouble with a device, I google to try to find a solution. Another barrier is it’s constantly changing – apps, software updates, etc, so they may get used to one piece of technology, and then it changes.

5. Based on what you experienced today, what do you think are the benefits of social media and technology to people with cancer and their care partners?

During my experience, I saw a more clear benefit of technology rather than social media. One woman was able to save pdfs of articles from WebMD to the home screen of her iPad, and another man was able to join the cancer support community facebook page. Also, knowing how to access online resources such as chats, and support from licensed counselors through the phone is very beneficial as well.

6. Is there anything that you learned or saw today that changed any opinions or assumptions you may have had about people living with cancer?

Working with the participants exposed an assumption I had related to people with cancer: people with cancer as very sick and having to deal with numerous medications. Although I didn’t know what medications the participants I was paired with were on, I did notice that they were all in different stages of health. Also, I learned that cancer patients express a lot of agency when deciding with resources to take advantage of. From the list from the digital sherpa® “cheat sheet,” only a few were of interest to my participant’s wife (patient) because she already has been receiving a lot of emails.

5 Yoga Poses That Reduce Daily Stress

We all deal with stress in our own way. 

Personally, I’ve been set on a downward spiral from something as simple as a negative thought. And although I still have hard days, I can say yoga has made these stressful times far easier to manage and few and far between. 

While yoga isn’t a cure-all, it can make a tremendous impact on how you deal with stress, where you store it in your body, and how happy you are throughout the day. If you haven’t given it a serious try, I strongly suggest committing to this simple, 5 pose routine and doing it every day for the next week. It only takes about 10-15 minutes and requires no prior yoga knowledge. 

Let’s have a look…

Why does yoga help with stress? 

Most of us store stress in our neck, upper back and shoulders. Many of us also sit at desks for the majority of our days. This leads to bad posture which further exacerbates the tension in our back, neck, and shoulders. 

Yoga helps you release tension and stress in those areas, strengthen your muscles and take a moment to focus on your breath. This is doubly important if you’re already experiencing burnout and overwhelm. 

When you perform a pose like forward bend or plank, you take deep breaths that trigger a relaxation response in your body. You also strengthen your core which leads to improved posture and physiology. 

If you had to picture a depressed or stressed person, you’d probably imagine them looking down, bad posture, and breathing shallow, etc. Something as simple as better posture actually improves your body’s response to stress

These are just a few ways yoga helps to reduce stress but, I encourage you to try it yourself and report back to us.

Do you need any special equipment?

The short answer is no. If you have a carpet or a soft surface, then you really don’t need anything. 

However, there are things that can assist in your practice. 

For example, a yoga mat may help you by improving cushioning on your joints as well as giving you a stable surface to practice on. Yoga blocks and straps can help you build form and give you something to hold onto. An anti-gravity yoga swing can help you maintain balance and stability in a number of poses. And a yoga wheel can help you with more advanced positions. 

However, none of these items are required, especially when you’re starting out. We encourage you to just focus on committing to this routine, every day, for the next week and see how you feel. 

5 yoga poses to perform each day

1. Forward bend

The forward bend is one of those classic, super simple poses that make a big difference in how you feel. This is an especially great pose if you work at a desk for most of the day. When you sit at a desk, your hamstrings are always contracted, your back rounds and your posture can start slipping. 

As a result, you breathe more shallow, your shoulders get tight, and the downward spiral begins. 

The forward bend relieves the pressure that’s been exerted on your spine, lengthens your hamstrings, and gives you a minute to just breathe. 

To perform the pose, stand with your feet shoulder-width apart. Then hinge at the hips and bend forward placing your hands on the ground if you can. Draw in your belly button toward your spine to activate the stretch and feel the tension releasing down your back. 

You may notice your back cracks as the pressure releases. Hold the pose for as long as you like making sure that, if you still feel the tension in any specific areas (like your hamstrings), hold it longer until that tension begins to relax. 

It’s also okay to have your knees slightly bent if needed but work on straightening them out over time. 

2. Cat cow

This is actually two poses that work hand in hand. They’re an ideal combination for releasing tension along your entire back as well as building strength and flexibility in your spine. 

To perform the first part (cat pose), get on all fours on your yoga mat or carpet. Make sure your hands are shoulder-width apart and your legs are hip-width apart. 

From there, take a breath and then exhale as you round your back and lower your head, pointing your crown toward the ground. 

Now, as you inhale you’re going to move into the cow pose. From the cat pose, take a deep breath and move in the exact opposite way. You’re going to raise your head and point your gaze toward the ceiling as you round your belly toward the floor. 

As you’ll notice, you’re both breathing deeply throughout the pose as well as improving lower and mid-back mobility. 

You may feel a little tension in your upper back while in the cat pose. If so, focus on pushing your shoulder blades out and holding that stretch until it relaxes a bit. This can be 5 seconds or 5 minutes. 

3. Corpse pose 

At first glance, corpse pose seems intuitive. You simply lay on the floor and relax – just like you do when you’re taking a nap or going to sleep. And while it is somewhat natural, there are important distinctions. 

When performing corpse pose, it’s imperative to focus on breath and thought patterns. This is the key to relieving stress and putting in the intentional “me time” our busy lives crave. 

To perform the corpse pose, get a yoga mat or go to an area with soft carpet. 

Lay on your back with your feet shoulder-width apart and hands straight down at your sides. Lie there for a moment just letting your self breathe naturally and relax into the position. 

After a few breaths, become aware of the feeling of the ground beneath you, become aware of the sensations happening in your body, and notice the sounds and smells around you. Release all judgment and just observe. 

Now work your way from the bottom of your feet to the top of your head, releasing the tension in each area. Pay special attention to releasing tension in your back, shoulders, neck, and face muscles. Breathe deep, take your time, and relax in this pose for as long as you like. 

4. Plank pose 

Now that you’re nice and relaxed from the corpse pose, we’re going to perform a more active movement. The plank pose is incredible for building core strength and stability because it hits all of your abdominal muscles and your glutes. In fact, it works the abdominal muscles that crunches are unable to strengthen. 

Our posture affects how we feel. When you’re slumped over with a rounded back, it sends chemical messages throughout your body. 

These messages can trigger stress, lower self-esteem, and even cause issuue with sleep. By performing a few planks every day, you can fight these problems and more. The plank also gets your blood flowing which promotes stress-busting happy hormones. 

To perform the plank, get into a pushup pose on the ground. Now drop to your elbows while keeping the rest of your body elevated from the mat. Draw in your belly button to tighten your abdominal muscles and hold the pose for 30-60 seconds. Repeat this 3 times in a row giving yourself about 1 minute in between to rest. 

5. Childs pose 

This is the perfect pose to end your anti-stress yoga routine. It’s very relaxing, excellent for spinal flexibility and one where you can really focus on your breath.

To perform the child’s pose, simply kneel on your yoga mat or carpet with your legs together and sitting back on your heels. Now bend forward pulling your chest close to your thighs. Reach your hands above your head like you’re trying to grab the far wall. Feel the stretch along your spine and throughout your shoulders. 

You can hold this pose for as long as you like. It’s an excellent way to spend some time breathing, relaxing, and preparing your mind for a great day. 

Closing

When it comes to stress, yoga is the perfect way to beat the feeling and tension caused by it. By adopting yoga as part of your daily routine (it only takes a few minutes after all), you can build flexibility, improve posture, trigger happy hormones, and just feel happier more capable during the day. Give it a try today and let us know how you feel after. 

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients from Patient Empowerment Network on Vimeo.

 Lindsey Lyle, a physician assistant specializing in MPNs, reviews the lab tests that should be administered following an MPN diagnosis and how the results could affect overall care.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Lindsey:

When somebody is diagnosed with an MPN, there are a variety of tests that are important for coming up with treatment strategies. And so, really, before starting treatment, it’s fairly imperative to have a CBC, or complete blood count, which was very likely done that led to the diagnosis of the MPN, but that’s very critical, as well as having a differential. This is basically just looking a little bit deeper at the white blood cells and their components, so that’s a critical part of the CBC, or complete blood count.

And then, having a chemistry panel, just to look at organ functioning, such as the kidney functioning and the liver functioning, as well as different electrolytes that may be indicative of something going on that would maybe impact treatment.

Additionally, having a bone marrow biopsy with molecular testing is advised. This is very critical in leading to the diagnosis of the MPN and then, also, really differentiating what subtype of MPN a patient may have.

The bone marrow is very critical for this purpose, and the genetic testing helps us to understand perhaps if a patient is having a higher-risk disease or a lower-risk disease and can help guide treatment as well. There are a variety of other chemistry tests that are done that can help specifically when looking at patients with polycythemia vera. This may be called an erythropoietin level.

Additionally, iron studies are generally recommended before starting treatment for MPNs, just to assess iron storage, availability, and that sort of component to the treatment may vary depending on that result. Additionally, if patients are having any sort of symptoms related to an enlarged spleen, generally, having an imaging study may be warranted if the symptom is quite severe and causing problems, and getting a baseline prior to starting treatment is generally a good idea.

When looking at a CBC, there are really three main cell lines that we monitor closely in MPNs regardless of the subtype, and this includes the white blood cell count, the red blood cell count or hemoglobin and hematocrit – those are measures of the total red blood cell count – and then, also, platelets. And so, these really are three different types of cells that your bone marrow produces that help with different functions.

And so, monitoring for any sort of changes within these three cell lines – white blood cells, red blood cells, or platelets – can really help us know maybe how the disease is changing, how a patient is responding to treatment, so these three key laboratory values are very necessary and really help us as providers and U.S. patients monitor progress, or for any changes in a positive way, or perhaps in a way that needs to be addressed.

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

Diagnosed With an MPN? Why You Should Consider a Second Opinion. from Patient Empowerment Network on Vimeo

 Physician assistant Lindsey Lyle explains the importance of seeking a second opinion when diagnosed with an MPN.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Am I Meditating Correctly? Getting the Most out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Lindsey:

When a patient is initially diagnosed with an MPN, seeking a second opinion is generally a very good idea, especially if patients are perhaps in an area where they do not have access to academic medical center.

The reason is that MPNs are such a small percentage of blood cancers – and, blood cancers in and of themselves are very rare, so MPNs are very rare, and especially in rural places, physicians do not have access or experience so much with MPNs. So, especially in those scenarios, I always advise a second opinion.

However, even within the academic medicine world, for example, if a patient is referred to me by their primary care physician or our institution, we always offer patients to seek a second opinion. Really, this is to gather information and either encourage the patient because the recommendation is the same or also to perhaps have a different idea for treatment that may fit the goals of the patient better, and so, I’m always telling patients to seek second opinions.

An Expert Summary of Current MPN Treatment Options

An Expert Summary of Current MPN Treatment Options from Patient Empowerment Network on Vimeo.

 MPN expert, Lindsey Lyle, provides an overview of therapies used to treat myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET).

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Lindsey:

To overview the treatment types for MPNs, we have a variety of different mechanisms in which we use, and clumping these three main MPNs together, we can kind of break it down into, first of all, cytoreductive therapy, which is nonspecific, but really just reduces the amount of cells the bone marrow is producing. And so, it’s really to control the blood counts. And, different types of cytoreductive therapy generally are – hydroxyurea is used probably the most commonly.

There are some other sorts of chemotherapy that may be used in different instances. We also have biological agents, such as interferons, that may be used in patients with MPNs. We then have JAK inhibitors, which there are two FDA-approved JAK inhibitors at this point for myelofibrosis, and one approved for polycythemia vera.

We also have a variety of novel agents in clinical trials. These may be inhibiting different pathways of the cellular production or different signaling pathways at the level of the stem cell, so there are a variety of those. We also use hypomethylating agents in some patients who maybe have higher-risk disease, mainly myelofibrosis, that really changes the way that the stem cells are produced in the bone marrow in order to control the cell counts and also symptoms.

So, there are a variety of therapeutic measures that are taken. Additionally, not necessarily medication-related, but phlebotomy, which is considered a therapy for polycythemia vera, is generally used in order to reduce red blood cell volume, and then, aspirin is commonly used, especially in polycythemia vera and essential thrombocythemia as a supportive care medication to reduce risk of complications from the disease.

Notable News November 2019

If your November was feeling hairier than normal, you or someone in your life may have been participating in No Shave November. Participants in the no-shave.org cancer awareness program stop normal shaving and grooming and donate the money they would have spent to combat hair to combat cancer instead. No Shave November has been around awhile, but in 2009 a family in the Chicago area took it to the next level when they used the tradition to start conversations and encourage donations to charitable organizations. The family-run group has raised more than $2 million and become a nationwide phenomenon. Put your razors down and click here to learn more.

Anything that can bring awareness to cancer is a good thing. The more we learn, the better equipped we are to prevent and treat the disease, and the results of a new study might be something we all want to learn about. The study, reports cancer.gov, may explain how some brain cells help spread cancer to the brain. Astrocytes are a brain cell that can activate a growth protein, known as PPAR-gamma, in cancer cells, which helps the cancer cells metastasize to the brain. Interestingly enough, in some studies PPAR-gamma stops the spread of cancer, and drugs designed to stimulate PPAR-gamma are being developed to treat some cancers. The research suggests that each microenvironment in the body could have an affect on whether or not cancer spreads. It is the brain’s fatty environment that might be the reason the PPAR-gamma proteins promote growth in the brain, but stops it in other areas of the body. Researchers are using this new information to further study metastasis, the role of astrocytes and PPAR-gamma in cancer growth and how they can be used to prevent the spread of the disease. More information can be found here.

More brain cancer research this month gives hope to treating deadly childhood brain cancers, reports medicalxpress.com. Researchers have found a drug combination that works together to kill cancer cells of the brain cancers called diffuse midline gliomas (DMG). The drugs panobinostat and marizomib worked more effectively together than they did on their own, and the studies revealed new ways for scientists to treat these cancers and other related diseases. Learn more here.

Treatment is great, but prevention should be the focus of cancer research says Azra Raza an oncologist, and professor of medicine, and director of the Myelodysplastic Syndrome Center at Columbia University, New York. In an interview with theguardian.com she discusses her book, The First Cell – And the Human Costs of Pursuing Cancer to the Last, in which she asserts that the focus of cancer research should be on preventing cancer cells rather than destroying them. The interview and her perspective on the treatment of cancer are interesting and worth considering. You can read the interview here.

One last thing to mention this month before you run away into the hustle and bustle of December: you might want to actually run away. That’s right, sciencedaily.com reports that running is linked to a significantly lower risk of early death, and you don’t have to be a hard and fast runner to get the results. Any amount of running will do. Studies showed that any amount of running pointed to a 27 percent lower risk of death from all causes, a 30 percent lower risk of death from cardiovascular diseases, and a 23 percent lower risk of death from cancer. Even people who ran only once a week or less for short periods of time at a slow pace showed significant health and longevity benefits. Get more information here, and check back next month for more Notable News. Until then, gotta run!

The Underlying Connection Between Breast Cancer & Beauty Products

By now, you’re probably already aware of all the ways in which cosmetics can be used to help enhance your physical appearance. However, have you ever thought about the ways in which it can negatively impact your health? Several studies report that there is an underlying connection between the harmful chemicals found in beauty products and your risk of developing breast cancer later on in life. Now I know what you’re thinking, “I’m already so cautious about the things I put in my body, but now I have to be careful about what I put on it too?” The answer, unfortunately, is yes.

According to the National Institue of Health, less than 20% of breast cancer is genetic. This means the environmental factors you expose yourself to may directly influence your overall wellness. So, while it may seem frustrating, having a better understanding of how certain ingredients can affect your personal health is extremely valuable. This is especially true if breast cancer is already an issue of concern. If you’re not sure what to look for when it comes to your beauty and cosmetic products, don’t panic. Let’s take a closer look together:

Common toxins found in beauty products

Although beauty products are typically designed to make you smell better, look better, or feel better, most of them contain many different ingredients and chemicals. Not all of them are thought to be dangerous, but a few may heighten your risk of developing breast cancer. Specifically, the ingredients considered to be “hormone disruptors” can cause a change in the way estrogen and other hormones operate within your body. Parabens, for example, are chemicals that are commonly found in many cosmetic products like moisturizers, anti-aging creams, makeup, and shaving cream/gels. This ingredient has been found to penetrate the skin, your body’s largest organ, and acts similarly to estrogen by binding to estrogen receptors on cells. Because of this, parabens are believed to live within many tissues in the body, one being your breast tissue. Despite the fact that there is no clear relation between parabens and breast cancer, its ability to work its way through your skin and remain within the tissues of your body demonstrates it may be potentially harmful. how paraben-related products can potentially speed up the growth of your hormones and influence your health in the long-run.

Another type of chemical that’s been studied for its probable connection to breast cancer is phthalates. Like parabens, phthalates are regarded as a “hormone disrupter” because it corrupts the functioning balance of other hormones in your body, including estrogen and testosterone. Normally used to reduce hair brittleness and hold color in nail polish, phthalates can also be found in an assortment of fragrances, shampoos, and conditioners. On account of it mimicking the carcinogenic effects of estrogenic exposures, researchers believe high exposure levels to phthalates may increase your risk of breast cancer.

To learn more about additional chemicals of concern and their possible link to breast cancer and other serious health issues, check out this list.

How to avoid these chemicals?

With regard to the hazardous consequences affiliated with the ingredients and chemicals of our beauty products, MD, and president and founder of breastcancer.org, Marissa Weitts, told WebMD to remind readers this:  “avoid products that contain hormonally-active ingredients, including parabens.” Luckily, there is still a wide variety of cosmetic products to choose from that’ll better support your personal-care needs and maintain your body’s health.

Before you do anything, it’s critical to look over the ingredients labels of any and all beauty products, prior to purchasing. Watch out for the alternative names for particular ingredients. Parabens, for example, could be listed as one of the following: methylparaben, ethylparaben, and propylparaben. To ensure you’ve removed parabens and phthalates from your personal care supplies completely, search for paraben-free and phthalates-free products, like in your shampoos or conditioners and makeup.

Beyond revamping your personal care products, there are also other ways to guarantee you’re safe from these chemicals. First, Breast Cancer Prevention Partners (BCPP) recommends staying away from products that include the words “fragrance” or “parfum” because they tend to be packed with thousands of more potentially harmful chemicals. This, along with the fact that there is a lack of regulation that mandates fragrance ingredient disclosure, can put your health at risk if you’re not careful. In fact, one study conducted by BCPP helped exploit just how toxic fragrance chemicals can really be. Their findings concluded that of the 338 fragrance chemicals they tested, 99 of them were linked to at least one health concern and several others were linked to multiple health effects. So before you reach for the most delicious scented-perfume, think about trying natural, non-toxic body spray mists.

Finally, search for hair and nail salons that offer their consumers safer products to use. If you aren’t able to find one within your local community, you can also take it upon yourself to bring your own, non-toxic nail polish and hair care products.

Complete Guide To Mindfulness

Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better […]

Fact or Fiction? Lung Cancer Symptoms, Side Effects & Treatment

Fact or Fiction? Lung Cancer Symptoms, Side Effects & Treatment from Patient Empowerment Network on Vimeo

When it comes to lung cancer information you find online, how do you decipher fact from fiction? Dr. Martin Edelman, a renowned lung cancer expert and researcher, shares his insight and expertise on symptoms, side effects and treatments for lung cancer.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

View the Fact or Fiction? Lung Cancer program resource guide here


Related Programs:

Lung Cancer Resources

The Empowered Lung Cancer Thriver and Expert Chat


Transcript:

Patricia:                      

Welcome to Fact or Fiction: Lung Cancer Symptoms, Side Effects, and Treatment.

Today, we’ll debunk common misconceptions about lung cancer symptoms, side effects, and treatment. I’m Patricia Murphy, your host for today. Joining us is Dr. Martin Edelman. Dr. Edelman, why don’t you introduce yourself.

Dr. Edelman:              

So, I’m a medical oncologist. I’m the Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at the Fox Chase Cancer Center in Philadelphia, Pennsylvania.

Patricia:

And before we get started, we should say this program is not a substitute for medical advice. Please refer to your healthcare team with any questions.

Let’s start with an overview of lung cancer’s research. Can you tell us a little bit about the field right now?

Dr. Edelman:              

So, I think the field has been remarkable over the last few years. There’s been more progress, more drugs, more things that have happened in the last five years than probably the prior 50. It’s been an amazing time both for developments in microbiology as well as in immunotherapy of the disease, which is exciting for all concerned.

For patient’s, of course – really a promise of longer, better lives, even cures where we previously did not see any in advanced disease. For the scientists – an amazing amount of new information. And for clinicians and clinical investigators – just almost too many questions for us to answer.

Patricia:                      

It sounds like the field is really advancing quickly. What do you attribute that to?

Dr. Edelman:              

Well, you know, I think there are a number of things. Everybody always talks about breakthroughs, but breakthroughs really happen after decades of other work. And what’s happening now is really a result of many, many years of different types of work. There were our colleagues in immunology who built this area of cancer immunology for many years – I have to say with much skepticism from many, myself included.

The advances in molecular biology – our abilities to do things with tumors to determine genetics at a rate and a pace and a cost that was previously unimaginable. All of these things have developed in the last few years but really are a result of the decades of work before that. If you look at immunotherapy – probably one of our biggest areas of progress – the roots of that are a century old. So, nothing’s really new. It’s just now we have the technology and the ability to really use it. And then I would also say that we’ve created the infrastructure that lets us test this – the people who have done the studies, the endpoints for the studies, the expertise in doing clinical trials – that also was there for decades, and we frequently were kind of ridiculed at times.

Oh, you’re just testing this drug against that drug, but the reality is is it was those incremental advances. It was the ability to know the endpoints, to refine the populations, to develop the infrastructure that allowed for all of this to happen.

Patricia:

How is genetic testing changing the landscape?

Dr. Edelman:

So, genetic testing – and in this case the testing of the tumor, not the germline, not the individual – has been very, very crucial. If you go back about 20 years ago, there was a family of drugs called epidermal growth factor receptor inhibitors or EGFR inhibitors.

And the basic science at the time made it look like these would be best combined with chemotherapy in squamous cell carcinoma. And as it turned out, combined with chemotherapy they weren’t very useful. But as single agents, there were these occasional very dramatic results.

So, that came at a time when we were able to evaluate tumor DNA, sequence it with some degree of ease at a reasonable cost. So, there was a discovery of specific mutations, which were targeted by these drugs. So, it was sort of interesting in that it was the clinical observation that led to the discoveries in biology, not really the other way around.

But then that in turn resulted in looking for other mutations, which were found, and then the development of other drugs – in some cases, the repurposing of other drugs for those. And now we have about a half a dozen very validated targets, each one of which in a small slice of the population – between say 1 percent and 5 percent – 10 percent of the lung cancer population – but these – if the patient has within their cancer that particular mutation, these are drugs that are 80 percent-plus effective and frequently can be administered with relatively little toxicity.

And usually they’ll give them benefit for one-plus years or more. So, that’s been an example of progress there.

Patricia:

How does lung cancer generally present in people? What might someone notice?

Dr. Edelman:

So, when I teach my residents how do people show up, which is, of course, very different for me – they usually show up with the diagnosis in hand. But for somebody who’s a primary care physician, what are you going to see? Well, you could see symptoms at the site of the origin of the disease – in the lungs. So, the pneumonia that doesn’t go away, the cough that doesn’t go away, the chest pain. So, that’s one way that it can present. It can also present, unfortunately, all too frequently as advanced or metastatic disease where the tumor has spread to other organs in the body, such as bone or brain. So, you may have a pain or a fracture, seizure, headache. Those are all possibilities.

And then sometimes the tumor can secrete various factors. We see this particularly in small cell lung cancer where there are certain metabolic syndromes that can develop or neurologic syndromes as a result of hormones or antibodies that the tumor can secrete. These are called paraneoplastic syndromes.

And then tumors sometimes show up and increasingly so now that screening has been validated, and screening in lung cancer is every good if not superior to screening in breast cancer. There’s a common myth that it doesn’t work. But in fact, this has been now demonstrated in multiple randomized trials done in the United States, in Europe that clearly demonstrate improved outcomes for patients who are at risk who undergo screening exams with low-dose CT.

So, frequently, we see those patients and then again sometimes just incidental discoveries when somebody’s getting a scan for another reason. So, those are all the ways that it can present.

Patricia:

So, it sounds like we’re very good at getting people to doctors like yourself who can specialize in their disease once it’s diagnosed.

How are you approaching treatment decisions with your patients?

Dr. Edelman:              

Well, the treatment decisions that we make – that I make are those that are in ways similar to other medical oncologists. It really depends because some of the patients may first go to a surgeon or whatever. However they come into the system, there are a few key factors in this. First is – make your decision based upon, Number 1, which kind of lung cancer. So, there are two major varieties. You have small cell and non-small cell, and they are treated – they are biologically distinct, and they are treated in distinct ways.

And then the next major consideration is the stage of the tumor, which is our way of expressing how advanced that is and deciding on both the therapy as well as conveying a prognosis and evaluating a patient for a clinical trial. And that’s based upon the size and location of the tumor; presence, absence, and location of lymph nodes; and the presence or absence and, these days, the number of metastatic areas of disease.

And then, lastly, and again depending a little bit upon the stage and interacting with all the others is what condition is the patient in? Anybody can get lung cancer, but still the median is in older individuals. Many of these patients have compromised cardiac and pulmonary status as well as other diseases of aging, hypertension, cardiac disease, etcetera. Those people – one obviously has to tailor one’s treatments to fit those comorbidities. So, that’s sort of how the basic assessment – obviously, some patients show up with metastatic disease. We know that, but we go through a whole process for this.

The staging system that we use is complicated, and it keeps changing. We’re, gosh, up to version eight of this? I started with version three. I’m not quite sure I’ve fully mastered the current one, and the ninth edition is coming soon. And why does it keep changing? Because our knowledge of the disease keeps changing. The database keeps expanding.

We’re able to be more refined. Molecular variables have not yet fully entered into our considerations. Unquestionably, they will. But basically, one could consider lung cancer – despite the four major stages and multiple substages – that you really have three buckets that people will fit into. They have localized disease, which we will predominantly address with a localized therapy – surgery, radiation. And many of those patients, however, particularly those who might have a lymph node that’s positive, will benefit from chemotherapy to prevent recurrence.

We have patients with locally advanced disease. Primarily, those are patients who have lymph nodes located in the middle of the chest as opposed to more localized disease where if there’s a lymph node present it’s more in the lobe of the lung. Those patients with lymph nodes in the middle of the chest or larger tumors are approached with frequently a combination of chemotherapy, radiation, sometimes surgery.

And then we have patients with advanced disease who will be predominantly treated with drug therapies, which nowadays, depending upon the molecular background of the tumor, could be a targeted treatment if they have a specific mutation.

Something we see most frequently, though certainly not exclusively, in patients with scant or no smoking history, they may be approached with immunotherapy or chemotherapy combined with immunotherapy.

And there are many considerations that go into those decisions. And even in advanced stage, there are certainly roles for surgery and radiation depending upon whether there are structural abnormalities, occasionally whether there are relatively few areas or several areas of metastatic disease. And in the localized and locally advanced disease, our goal is cure in those, though we certainly are not there for every patient yet.

And in advanced disease, it’s extension of life, which is now quite considerable compared to untreated disease. And I think in certain situations, particularly those who only have a single area of metastatic disease, curative treatment is a realistic possibility. And even those with more disseminated disease, we’re now beginning to see a substantial fraction of patients who are still alive at five years or more. So, we’re beginning very cautiously to think that perhaps some of those patients may even be cured of their disease, though I’m not quite ready to say that.

Patricia:                      

Well, it sounds, though, like there is a lot of reason to have hope if you are diagnosed with lung cancer, especially if it’s diagnosed early. Of course, that would not stop a patient from worrying.

So, I hope what we can do next is talk a little bit about some of the things we’ve heard patients say, and you can fact-check us on that.

Dr. Edelman:              

Sure.

Patricia:

This sounds like a real worrier. There are no new treatments in lung cancer.

Dr. Edelman:

Well, there’s nothing but new treatments in lung cancer. So, I’ve been involved in oncology, I think – let’s see. My fellowship was in the late 80s. That ended about 1990, so we’re about – what is it not quite 30 years later? Virtually every drug that I use was in development during my professional career. Just within the last few years, all the immunotherapeutic agents were developed. Within the last say 48 months, they were licensed. The targeted drugs are all new within the last 15 years or so. So, we’re pretty much nothing but new drugs in lung cancer.

And not just drugs, but also surgical techniques have proceeded from open thoracotomies in almost all patients to video-assisted thoracoscopic surgery, which is less morbid and gets the patient out of the hospital faster.

Radiation progressed from relatively low intensity radiation that was done where you drew it on x-ray. I can still remember that when I was a resident to now four-dimensional assessments and the use of intensity-modulated radiotherapy.

Perhaps a role – maybe, maybe not – for proton therapy in this situation; the use of stereotactic body radiotherapy for treatment of localized disease in patients who are medically unfit – I think we’re nothing but new therapies.

Our supportive care is massively better than it was 30 years ago. Nausea and vomiting, severe problems – it’s largely a thing of the past. We have extremely effective antinausea agents. I may disappoint some people by telling you that marijuana is not one of them. But the fact is is that many of those drugs were developed because the drugs 20 years ago, 30 years ago, were quite nausea producing. And it was heavily lung cancer folks across the country – my colleagues, Dr. Brower, Dr. Gandara, Dr. Einhorn, others – who are very involved in lung cancer, genitourinary malignancies, gynecologic malignancies, but we’re using what’s termed highly emetogenic chemotherapy. We developed many of the antinausea drugs. We were extremely concerned about this.

So, our drugs are better. They’re more active. They’re less toxic. We have better supportive care. We have better integration with other modalities, such as radiation and surgery.

There are still many, many questions with treatment. Many areas we can improve. Many things we don’t know, but it’s nothing but new therapies.

Patricia:                      

Your history as a physician and noticing all this change will likely help you advise patients who worry that their lung cancer diagnosis is a death sentence, which is something else that we hear from patients.

Dr. Edelman:              

So, life is a death sentence. It’s a little bit flippant, but I think that there are many, many bad diseases out there. And certainly, there is no good lung cancer. And I don’t want anybody to leave this and think – oh, everything’s rosy. It’s not. Though I do a lot of administration these days, I’m still in clinic. I see a fair number of patients, and the news is not always good. Not everybody responds. Not everybody benefits. And that’s why we still need to do the trials and advance what we’re doing both in terms of increasing the efficacy and decreasing side effects.

Having said that, we have many, many patients who are living excellent productive lives, able to make life events – anniversaries, birthdays, etcetera – who would not have otherwise been alive to do that. And as I said, there is an increasing fraction of cured patients where the disease is no longer at all an issue. But it’s one of those things – we don’t know until we try. And there is no shortage of bad things that can happen to people. Lung cancer is one of them. I think what we do have is increasing options for people that truly meaningfully improve their lives.

Patricia:                      

Sure. Here’s one I hadn’t heard until just now. Surgery causes lung cancer to spread.

Dr. Edelman:              

Yeah, that’s common in certain states. When I was in Maryland that was a biggie.

So, there’s a myth that the air gets to the tumor, and then it spreads. But that’s certainly not true. It certainly is possible that in a bad surgical procedure that disease can be spread, but I think historically what that was was in the days before we had as accurate of radiographic studies. So, it’s kinda interesting. I always say, “I’m not that old, and I began medical school before there were CT scans.” So, the way you would diagnose something was with a chest x-ray. That was your best chest imaging. And the brain you’d image with something called a pneumoencephalogram, which is – you don’t know what that is. Most people don’t, and they should be thankful for that. But we had no real way of knowing these things. So, what would happen is there would be a surgical exploration. They would say, “Well, it looks very localized.” But then you’d go in, and there was lots of disease all over the place.

And for the most part, that doesn’t happen anymore. Now we have CT/PET scans. We have MRIs. Patients before they go to surgery usually have had – our pulmonary physicians will usually have sampled the nodes in the middle of the chest, the mediastinum. So, it isn’t that there aren’t surprises, but there are far fewer. And certainly, a properly done operation should not spread lung cancer. I would emphasize the properly done operation. It is my strong belief that nobody should have surgery for lung cancer from other than a board certified thoracic surgeon who spends their time thinking about lung cancer, preferably in an institution with a fair volume of this.

We know – it should be no surprise to people, practice makes perfect. People who really focus in an area – people at the NCI-Designated Cancer Centers, comprehensive cancer centers – who do a lot of this have greater expertise.

Patricia:                      

How about this one? Treatment is not effective in older patients.

Dr. Edelman:              

Treatment is highly effective in older patients. It’s interesting. So, we had long arguments about, when I started in this field, whether treatment ever worked, and there were a number of studies that showed that chemotherapy – that one platinum was better – what’s called a platinum-based agent – was better than no therapy.

And then that two drugs were better than one drug. And people would say, “Oh, well, that doesn’t work in the elderly. And they should only get one drug.” And that’s because, I guess, their burning bush on the lawn told them this. And the fact is is that then got evaluated in a controlled trial, a very nicely done study by my European colleagues. But what was crucial was that they used somewhat lower doses of chemotherapy, a little bit different schedule of chemotherapy, and it was clearly superior to a single agent. And those were even days before immunotherapeutics and these targeted agents. So, many patients will benefit. You just have to be aware of certain basic principles in geriatric medicine as well as basic principles of lung cancer care.

So, first off, if the patient is elderly but their tumor is characterized by a driver mutation, they get one of the so-called targeted agents. And these are these days very non-toxic, easy to take, and highly effective.

Patients – many are going to be eligible for immunotherapy either as a single agent or combined with chemotherapy. Chemotherapy drugs could certainly be cut in their doses and still preserve much activity and be done safely.

I had a woman with small cell lung cancer. This is now about a year and a half ago or so. And she’s in her 80s. And she came to me because she was told – oh, just sorta get your affairs in order. And her disease was what we term an extensive small cell. The staging system’s a little bit different, but she didn’t have a really vast bulk of disease. And we treated her with standard chemotherapy drugs but at somewhat lower doses and some careful TLC and some other supportive things like growth factors.

She got all of her treatment on an outpatient basis, had an excellent response. We used radiation later to consolidate her treatment, and I see her back every couple of months. I wouldn’t say that she’s necessarily cured of her disease, but she does yoga every day. She lives a full life. She sees her grandchildren. And she’s, I think – I wanna say 83-84 years old. I think she’s quite grateful for that. It’s not the numerical age.

The flipside is if somebody’s 50 years old and they’re extremely ill when they come in, then one has to be very cautious about what one does. We used to say that those patients who come in who are severely impaired should simply get supportive care and hospice services.

And actually, how would I put it? Our lives have gotten a little bit more difficult lately because as things have gotten better for patients – because I can’t necessarily say that as much because some patients may be very susceptible to the effects of – their disease may be very susceptible to the effects of immunotherapy. I had one patient who was a younger gentleman who was on a gurney. He was in his 50s, lost an enormous amount of weight , he was on oxygen. We immediately gave him fluids. My fellow – I had an excellent fellow at the time – came to me and said, “Should we admit him and send him to hospice? Or just send him to hospice?” And I looked, and he had a biomarker that indicated that he might have an excellent response to immunotherapy, so we gave him solely immunotherapy and saw him back a few days later. He was still pretty touch and go. We gave him some fluids. A week after that – still, we were kinda touch and go, but he was still with us.

And then a week after that my medical assistant, comes in, and she says, “You know, he looks a little bit better today.” And he was in a wheelchair that day. And then a few weeks after that, he had a walker, and a few weeks after that a cane and about a year after that was asking me about whether or not he could go on a cruise. Again, I still see this gentleman – a couple weeks ago. It’s now almost two years later. And the question now that we have is – should we stop his treatment? And he is restored to complete full health, has had almost no side effects of treatment.

So again, this is not every patient. Some people will be treated and get every side effect and no benefit, but I think I’ve become a lot more reluctant to say that any patient should not at least be offered the opportunity for treatment knowing what the potential side effects are. And there still are considerable and sometimes severe side effects from therapy.

Patricia:                      

Yeah. And again, your experience and your long perspective on this disease can help you advise your patients thoughtfully. Here’s the last one that I have on my list here. Clinical trials are experimental and risky.

Dr. Edelman:              

Yeah. Well, so is the rest of life. So, there generally – is there risk? Yes. Essentially, every patient is always a trial because we for the most part don’t – even in the disease states where we have very active treatment – so, let’s say – for example, we were talking about the EGFR mutation. So, we have excellent drugs. We have a drug now, osimertinib – outstanding drug, easy to take, low risk of side effects.

The earlier generations – there was a lot of rash, diarrhea. That’s been pretty much done away with. But on average, patients benefit from this drug for about a year and a half.

So, that’s not great if you’re 40 or 50 years old. You want to do better. So, what are our current studies? Well, we’re looking – we’re re-addressing a question that we thought had been answered, but really it wasn’t – about, well, what’s the value of chemotherapy plus this drug? What about the value of other drugs?

So, we can’t promise anybody anything, but our current treatments are still not good enough. There are certain diseases, let’s say Hodgkin’s disease, where you know you’re gonna cure almost all the patients up front or testicular cancer, etcetera, where – again, but thanks to trials, clinical trials, we now are at that stage. We’re not there yet in lung cancer, and the reality is is every patient should really be on a study. I think it’s – and we have this problem now in that our studies have also become far more complicated to enter people in because there are many more variables one has to look at it. What’s the molecular background of the tumor? How many prior therapies?

The condition of the patient, their organ function, etcetera – and the regulatory burden has become much, much greater. But clinical patients are in clinical trials. Let’s look at the question. Are they risky? Well, everything is risky, but we do a lot to manage that risk. Patients who are in studies are observed more closely. We have to. It’s the law. There’s frequently additional personnel assigned. They’re usually getting standard of care plus a new treatment or a new treatment followed by the standard of care or some variation of that.

They’re observed, like I said, much more carefully than we would otherwise. And so, I think actually patients on trials generally will do better, and we actually have evidence. Multiple individuals have looked at this – everything from first-in-man trials or early dose escalation studies, controlled studies – that show that patients, even those on the control arm, generally do better than similar types of patients who are not treated on studies because we just are more careful.

And the physician who participates in trials is generally someone who has a greater knowledge of the disease.

Patricia:                      

Sure. What do you notice from your patients? What do they tell you that you think needs to be debunked?

Dr. Edelman:              

Well, very similar to some of the questions that you’ve asked. I mean we address these issues all the time about – is there hope with this? How bad is it gonna be, etcetera? Sometimes people think that inevitable diagnosis is gonna have pain and misery, etcetera, or a lot of admissions. I spend a lot of time particularly in their first visit addressing many of the questions that they may have.

And again, there’s always this problematic balance with the disease, particularly in the advanced setting in particular, where one has to balance out what is, I think, an increasingly positive picture with the reality that still the vast majority of patients will ultimately die of their disease, but the question is – how long can we put that off? How can we improve quality and quantity of life, even if one is going to ultimately die of the disease?

I think those are the things – there’s this weird dichotomy that people come to believe in that either you get treated and you’re gonna always have symptoms or your life will be pleasant and wonderful, and you’ll have this quiet wonderful peaceful demise if you’re not treated. And it’s really not true. The disease can be extremely uncomfortable, painful, distressing, etcetera. And treatment puts that off. Treatment prevents symptoms. Treatment improves quality of life.

And it takes a little bit of time because that’s how people are very socialized with this. Not every drug causes hair loss. Not every drug results in nausea. There’s too much misinformation out there.

Patricia:

Sure. Sure. Treatment can arrest the disease or slow down the progression of the disease, but it also has side effects.

Let’s talk a little bit about some of the concerns that patients have about the side effects. Let’s see: Side effects are unavoidable.

Dr. Edelman:

Well, that’s not true. As I said, what were the side effects? If you go back a couple decades and you ask patients what were they concerned about, many of them were concerned about nausea and vomiting. And that is largely a thing of the past. Many patients will still have some queasiness with treatment, but even our most nausea-producing drugs – we really do have outstanding drugs for the prevention of that. You have to use them. You have to take them.

It’s very important to give them appropriately. There are very excellent guidelines that are out there. Sometimes, patients are still undertreated, no question about that. Not every drug has industry strong backing. There’s one drug – for example, olanzapine, (Zyprexa) was actually developed as an antipsychotic, and I always tell the patients, “No, I don’t think you’re crazy.”

But it’s at a lower dose, and we have excellent, excellent evidence that that drug given for a few evenings after chemotherapy is extraordinarily effective along with the other drugs in preventing nausea and vomiting. So, that’s one thing.

Hair loss is still somewhat inevitable with certain drugs – the taxanes. But many of our regimens don’t cause hair loss.

Or as I tell folks – only you and your hairdresser will know for sure because its hair on the pillow, but the average person won’t pick you out of a crowd. Those are big concerns still. There still are potentially life-threatening effects from chemotherapy, and we spend a lot of time educating people about that. But those are not inevitable, and it’s actually a minority of patients in lung cancer.

One should not confuse – there are different malignancies. Still, the treatments for say leukemia, though even that’s changing, can be extraordinarily toxic or the bone marrow transplant patients. Many, not just lung cancer, but in the other diseases as well – many of the things that people attribute to the drugs are more due to the disease. So, I always say, “The greatest failure and side effects to the drugs are they don’t work well enough because the side effects of the disease can be considerable.” So, that’s the bigger issue. The immunotherapeutic drugs have a rather interesting set of side effects.

They are clearly initially or frequently better tolerated than the older cytotoxics, which still have an extremely valuable place in the treatment and cure of lung cancer. The immunotherapeutics have clearly been quite beneficial, but their side effects can be subtle and far less predictable and can be very severe. Virtually, any organ in the body can be affected by this. We like to say, “If it ends in ‘itis,’ you can get it from immunotherapeutics.”

So, there are lots of side effects, no question. But they can be managed. They can be prevented. They can be treated. Sometimes, we have to abandon a drug. So, people who get severe – what we call immunotherapy-related adverse events – may not be able to continue on their drugs. But even that is not necessarily always the case.

Patricia:

This next one really gets to the heart of the doctor-patient relationship.

I shouldn’t share my side effects with my healthcare team because I don’t want them to stop my treatment routine.

Dr. Edelman:

Well, you can’t prevent the side effects if you don’t know about them. And I always would tell patients, I said, “You know, if you’re having a problem, please don’t call me at 4:00 on Friday afternoon. I’m gonna end up sending you to the emergency room, which I may anyway.” But a lot of times, we can solve certain things over the phone. There are a lot of side effects that can be treated and particularly if one is aware early on. So, yeah, you should share the side effects because how’s somebody gonna know how to deal with them?

Now, the problem we run into sometimes is in a population that’s on average 60s and 70s, could be younger. There’re lots of things that can be just part of ordinary life. Everybody gets headaches, back pain, etcetera, etcetera.

We have to treat those sometimes and evaluate them much more aggressively because of the possibility of them being related to disease or drug, but it helps to sort it out. You can’t be too blasé about it because sometimes things need to be looked at very urgently, particularly with immunotherapeutic drugs. Some of the side effects that can be severe can sometimes be very subtle in their onset.

Patricia:

What else to patients talk to you about? What kinds of things do they come in and talk about that may need to be debunked or that you need to correct?

Dr. Edelman:

Well, it’s not contagious. It’s not hereditary, things like that. Many people – I’ll ask always about asbestos. And they’ll say, “Well, I worked in this old building that had asbestos in it.” Well, that doesn’t count, particularly one of the rarer – we’re not really talking about it today, but mesothelioma, which is associated with asbestos.

You know you gotta actually really be exposed, which means that somebody has to have torn into that. The latency is 30-40 years, so it’s the pipefitters; but actually, the most common cancer associated with asbestos is non-small cell lung cancer. It’s not mesothelioma. There are lots of those sorts of things. But in general, many of the questions you’ve raised are quite common questions.

Patricia:

As a patient, how can I differentiate between symptoms of lung cancer versus the effect of treatment? What should I be thinking about as a patient?

Dr. Edelman:              

It’s not always easy. And again, that’s why you gotta discuss it, and it’s not always easy for me to determine that because there are always several possibilities. It could be a side effect of treatment, it could be a side effect of disease, or it could be a side effect of people’s comorbidities. And these frequently interact. So, a patient – anemia is a common problem where you have low red blood cells.

Well, we know that you get anemia from disease. That causes a degree of what’s called anemia of chronic disease.

Our drugs frequently can result in anemia, and then anemia can bring out other symptoms. Patients who have lung and heart dysfunction to start with are gonna have more problems. They may get angina. So, there’re a lot of these things that interplay. And it’s not always straightforward.

Patricia:

And Dr. Google can really get involved here.

Dr. Edelman:              

Yeah. That’s always a problem, yeah.

Patricia:

Yeah. Which brings us to our next section – myths about lung cancer in general. How about this one? All lung cancer is the same.

Dr. Edelman:              

Well, I think by now one should be clear that not only is it not the same but even what we used to term – as I said, my life as a clinical investigator used to be a lot easier because we had non-small cell lung cancer. We had a particular stage.

And now we have EGFR mutated. We have non-small cell lung cancer that occurs in people without a driver mutation. And then, well, do they have something called PD-L1 expression? Which if it’s high, predicts for benefit from immunotherapy alone; and if not, then chemotherapy and immunotherapy is kind of the way to go in patients who are reasonable for that. We have patients who may have an EGFR mutation and then, which kind of EGFR mutation? Patients without mutations, ROS, RET, cMet. It goes on and on and on and on.

And all of these are different in small-cell lung cancer and then stage of disease. And even within the stages, there are all sorts of subtleties in terms of the optimal treatment. So, it really is a team decision for many of these patients how to treat them. And like I said, there are an increasing number of options.

And the answers are not always clear or perfect.

Patricia:

Right. How about this one? Lung cancer only affects the lungs.

Dr. Edelman:

Well, obviously, lung cancer can spread and kinda goes wherever it wants. There is essentially no organ in the body – I’ve had patients who were referred to me as “lung cancer” – rather who initially showed up with a breast mass and were seen by breast cancer physicians. They would biopsy it, and it was clearly lung cancer that had metastasized to the breast. Lung cancer can go to the eye then go to the brain, the skin, the adrenal glands, the liver. It’s a disease that unfortunately likes to travel and metastasize in the body very early in its natural history. In other words, when you say early in late lung cancer that’s not necessarily a time. It’s really low stage and high stage. You can see a lung cancer that can be a rather small tumor in the lung that may have already spread elsewhere in the body. 

Patricia:                      

Right. Right. How about this one? Supplements will help with symptoms and side effects.

Dr. Edelman:

Not likely, and more likely the other way around. So, as I said, we have some very good ways of preventing things like nausea and vomiting. There’s a lot of advice that is quite reasonable in terms of dealing with side effects – staying well hydrated. Hydration means salt-containing fluids – chicken soup, of course, being just about perfect or Pedialyte. Things like that are very good. But exercise is extremely good.

The problem with supplements is nobody really knows what’s in those. Many things can interact with various drugs. The term nutraceutical to me is nonsense. They’re unregulated drugs. And what do I mean by that? Many substances and many foods metabolize through the liver or influence enzymes in the liver. Many of our drugs are processed through the liver.

Drugs can influence – so, a drug that might inhibit the metabolism of a chemotherapy or a targeted drug will increase the body’s exposure to that. That can increase the side effects. Or alternatively, it can accelerate the processing of the drug, which will decrease the efficacy. I’ve seen this on many occasions.

One should think that much of the population is on anticholesterol drugs, cholesterol-lowering drugs called statins. Well, if you – I’m sure anyone who does it – you look at the bottle or you got the advice from the physician that says, “Don’t have it with grapefruit juice.” So, let’s think about that. If grapefruit juice can substantially increase the side effects from a very commonly utilized drug like a statin, just think about what an unknown thing that you bought – and remember, everything you buy at these stores – that so-called supplement – you have no idea what’s in it. There’re no standards for these.

The FDA is not really checking on those. I believe a few years ago the New York State Attorney General looked at this and found out a lot of these supplements were sawdust or weren’t what they say they were. So, I’m very – I would strongly discourage the use of anything outside of what’s actually a prescribed medication. If one wants to use an alternative therapy, like yoga, massage, image therapy, and again exercise, things that we know really work with people – absolutely, do that. But I would discourage these herbal medication supplements, etcetera. Or if you insist upon it, definitely tell your physician because then when they’re dealing with the side effects, it helps them to figure out what it was.

Patricia:

Yeah. Discussing what you’re taking or what you would hope to take with your physician and your care team is probably paramount.

Let’s talk a little bit about health literacy. What would you suggest patients use for online resources? What are good resources?

Dr. Edelman:              

So, there are some excellent resources. The International Association for the Study of Lung Cancer has resources for patients. The National Coalition of Comprehensive Cancer Center Network (NCCN) has resources. American Society of Clinical Oncology has resources. So, those or American Cancer Society. So, there are some really reliable sources out there. And there’s a great deal that’s very unreliable – people’s Facebook pages. I’ve seen this.

Patricia:                      

It’s a big place.

Dr. Edelman:              

Everybody always – and I think it’s important for people to understand. There will be people who will get something and have a fantastic response. I’ve used anecdotes.

The anecdotes I’ve used are to illustrate the potential hope of benefit. They’re not exceptions to the rule anymore. They’re the good case scenarios. I could have just as many anecdotes of people who didn’t benefit and stuff. And I think it is important going into this – and that’s why we are reassessing patients constantly and getting repeat scans because we don’t necessarily know always – even if something’s 90 percent effective, it means 10 percent of the time it’s not.

And each patient – we’re getting better at individualizing and personalizing therapy, but we’re not perfect yet. And we probably never will be. So, there will always be anecdotes. I think what’s – as a friend of mine puts it – the plural of anecdotes is not data. When I say, “Well, chemoimmunotherapy works.” It’s not because I have anecdotes of that, though anecdotes illustrate the magnitude of benefit.

I have data that shows that the chemoimmunotherapy regimen was compared to chemotherapy and was clearly and unequivocally superior. When I give a statistic that 60 percent of patients, 65 percent, can benefit from those types of regimens. That’s based upon prospective randomized control trials.

Patricia:                      

Dr. Edelman, as a researcher in the field, tell us why you’re hopeful about lung cancer research.

Dr. Edelman:              

Well, I think that we have gone from trials with very small incremental improvements and frequently a very slow degree of progress where if we had a positive study every two or three years, we were thrilled – to the point where we’ve had an avalanche of positive studies. I don’t think my younger colleagues know what a negative trial looks like anymore. Even our negative trials are pretty impressive. We’ve had studies where an immunotherapy agent was compared with chemotherapy. And it was designed to show that the drug would be better.

And it was just as good, and that was a negative study. That’s the correct interpretation, but still I would point out that that’s quite remarkable because these other drugs had taken us 25-30 years to develop. And now we have another drug with a very different mechanism of action that’s as good potentially. That’s impressive. I think we’ve just had an amazing degree of progress in the last few years. We have far more drugs. We understand far more about the disease – the technology at every point from diagnosis to assessment of response to the ability to evaluate better what we’re not doing well. So, our studies now frequently have biopsies before, during, and after treatment in a way of trying to figure out why is stuff working or not working.

Back in 2006 or so, I proposed a study. We ended up doing it, but it took two or three years because we were requiring a biopsy result – actually, not even a new biopsy but just an archived specimen from the original biopsy to determine eligibility, and there was strong pushback that we would never be able to do that. And now, we routinely are getting biopsies and re-biopsying, and that’s over a brief period of time.

So, we’re getting to get better understanding of the disease, and why stuff works and doesn’t work. And I think that that’s why our progress will accelerate. And I would again emphasize progress only happens – real progress – only through clinical trials. We’ve cured a lot of mice for many decades. A mouse is not a person. You actually have to do the studies patient by patient, and I think we are making substantial progress. We almost have too many things to test right now.

Patricia:                      

That’s a good problem to have. Dr. Edelman, thanks so much for taking the time today.

Dr. Edelman:              

You’re welcome. My pleasure.

Patricia:

And thank you to all of our partners. To learn more about lung cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. That’s powerful patients with an S .org. I’m Patricia Murphy, your host. Thanks. 

How Leukemia is Diagnosed

Introduction to Leukemia

Cancer and neoplastic lesions are affecting our lives every day. Nearly 40% of the world’s population is affected by cancer—irrespective of age, gender, and ethnicity. Equally detrimental to cancer’s physical manifestations are the psychological influences. However, medical advancement and new research are helping to to combat this life-threatening disease.

Of all the cancers of the body, the most treacherous is Leukemia. It is a cancer of blood cells. Humans have three kinds of blood cells: red blood cells, white blood cells, and platelets. Leukemia involves the malignant proliferation of white blood cells (WBC).

Our white blood cells are major components of our body’s defense mechanism. They play a vital role in fighting against diseases, whether bacterial, viral or fungal in nature. They originate within the bone marrow, spleen and lymph nodes.

A person suffering from Leukemia has poor white blood cell functioning. WBCs start to divide abnormally eventually outgrowing the normal number of cells.

Leukemia has 4 types:

  1. Acute Myelogenous Leukemia (AML)
  2. Chronic Myelogenous Leukemia (CML)
  3. Acute Lymphocytic Leukemia (ACL)
  4. Chronic Lymphocytic Leukemia (CLL)

1. Acute Myelogenous Leukemia (AML)

Acute Myelogenous Leukemia is a heterogeneous clonal disorder. It is characterized by immature myeloid cells and bone marrow failure. It commonly affects children and adults. Studies have suggested the disease arises from recurrent hematopoietic stem cell genetic alterations.

2. Chronic Myelogenous Leukemia (CML)

Chronic Myeloid Leukemia is a myeloproliferative (slow-growing blood cancer) disorder characterized by the existence of a balanced genetic translocation of chromosomes 22 and 9. It mostly affects adults. CML consists of 3 distinct phases: chronic, accelerated, and blast phases.

The history of patients with CML shows 3-5 years of chronic stage proceeding to a fatal blast phase and then progressing to an accelerated phase.

3. Acute Lymphocytic Leukemia (ALL)

Acute Lymphocytic Leukemia is the second most common Leukemia occurring in adults. Like other Leukemias, ALL’s pathophysiology is also based on chromosomal abnormalities and genetic alterations which happen to take place in differentiation and proliferation of lymphoid precursor cells present in the bone marrow and blood. In adults, the precursors of B- lymphocytes are greater in number than the malignant T- lymphocytes.

4. Chronic Lymphocytic Leukemia (CLL)

Chronic Lymphocytic Leukemia is a tumor of CD5+ B cells that characterizes the deposition of tiny, mature lymphocytes in the blood, bone marrow and lymphoid tissues. Apart from the CD5 cells, other genetic alterations are involved in the pathogenesis of Chronic Lymphocytic Leukemia. Stromal cells, T cells and nurse-like cells in the lymph nodes also predominate.

Causes and risk factors for Leukemia

Although the exact cause of Leukemia is unknown, certain risk factors can contribute to making a person susceptible to it. These include radiation, viruses, exposure to benzene, smoking, genetics, and family history.

1. Ionizing radiations

Exposure to ionizing radiation comes from continuous radiation therapy for treating any pre-existing cancer. Prolonged exposure to X-rays is found mostly in people who work as radiologists and are exposed to persistent radiation. Patients who have received chemotherapy sessions for cancers are also prone to Leukemia. Ionizing radiations damage the DNA and result in the defective genetic makeup of stem cells.

2. Viruses

The Human T-lymphotropic Virus (HTLV-1) has been shown to have an association with Leukemia.

3. Exposure to benzene

Benzene is a toxic solvent used in cleaning chemicals and some hair dyes. Benzene’s toxic effects on the blood and bone marrow include increasing the risk of Acute Myeloid Leukemia (AML), myelodysplastic syndrome, and other hematological malignancies, such as non-Hodgkin’s lymphoma.

4. Smoking

Smoking is not only detrimental for the lungs alone but for the entire body. Although the link between smoking and Leukemia is unclear, studies say it can affect the bone marrow and increase the chances of AML in young adults.

5. Genetic conditions

Chromosomal abnormalities are also responsible for increasing Leukemia susceptibility. Examples include Down syndrome, Klinefelter syndrome, Fanconi anemia, Li-Fraumeni syndrome, Bloom syndrome, Ataxia-telangiectasia, and neurofibromatosis, to name a few.

6. Hereditary

The most common cause of Leukemia is family history. If any family member has had Leukemia it increases the risk for other blood relatives.

Signs and symptoms of Leukemia

The signs and symptoms of Leukemia vary with different forms. They are generally nonspecific and warrant investigations for proper diagnosis.

Acute Myeloid Leukemia (AML)

The signs and symptoms of AML are:

  • Fever
  • Pain in bones and joints
  • Pale skin
  • Easy bruising and contusions
  • Recurrent infections
  • Unusual bleeding, epistaxis, bleeding gums

Chronic Myelogenous Leukemia (CML)

The signs and symptoms of CML are:

  • Fatigue and muscle weakness
  • Shortness of breath
  • Pyrexia
  • Increased sweating mostly during the night
  • Cachexia (weight loss)
  • Abdominal discomfort secondary to spleen enlargement
  • Stomach bloating
  • Itching
  • Pain in joints and bone

Acute Lymphocytic Leukemia (ALL)

The signs and symptoms of ALL are:

  • Joint pain and muscle fatigue
  • Fever
  • Frequent infections
  • Epistaxis (Nose bleed)
  • Lumps felt around the neck, groin and underarms as a result of lymph node swelling.
  • Pale skin
  • Shortness of breath

Chronic Lymphocytic Leukemia (CLL)

The signs and symptoms of CLL are:

  • Nocturnal sweating
  • Fever
  • Recurrent infections
  • Fatigue and constant tiredness
  • Cachexia
  • Loss of appetite
  • Stomach bloating as a result of splenomegaly (enlarged spleen)
  • Shortness of breath
  • Pea-sized swelling or lumps in groin, neck or armpits.

Diagnosis of Leukemia

Early detection can prevent complications. The earlier the diagnosis the easier treatment is. Medical advancement has made diagnosis easier than ever before. Some of the essentials to reach an accurate and precise diagnosis are enlisted below.

History and examination

A proper and detailed history is the key to an ideal diagnosis. It involves asking relevant questions related to the signs and symptoms that can link to the suspected disease.

Your physician might ask the following questions:

  1. How long have you been feeling a fever?
  2. What is the temperature?
  3. Do you feel a loss of appetite?
  4. Have you experienced prolonged bleeding after a cut?
  5. Have you noticed any changes in weight recently?
  6. When did you notice lumps?
  7. Are these lumps felt, painful and movable?
  8. Did you feel the lumps gradually increasing in size?
  9. Do you face difficulty in breathing?
  10. Do you feel you sweat a lot while sleeping?
  11. Are you taking any medications?
  12. Have any of your family members had any diseases?
  13. When did you feel the need to visit the physician?

The answer to the above questions can lead to the next step, investigations.

Investigations for Leukemia

Investigations are the major component involved in diagnosis as they make the suspected disease clear to understand. These include blood tests, radiology and biopsy.

1. Blood tests

  • Complete Blood Count (CBC)
  • White Blood Cell (WBC) differential
  • Blood smear
  • Tumor markers
  • Cerebrospinal fluid (CSF) analysis
  • BCR ABL1
  • Genetic tests for targeted cancer therapy
  • Chromosome analysis

The most commonly used test is the Complete Blood Count (CBC) which shows a clear picture of the abnormal growth of red blood cells, white blood cells and platelets.

2. Radiology

The excessive proliferation of the cells in the bone marrow leads to marrow expansion and invasion of the cortex which, in later stages, can be seen by radiographic studies. A simple X-ray can reveal any spot bone changes. In some circumstances, a CT-scan may be needed to extensively study the disease and prognosis.

X-ray findings may include:

  • Osteolytic lesions; most commonly seen in Acute Lymphocytic Leukemia seen in small and flat bones, metaphysis of long bones.
  • Metaphyseal bands (classical Leukemia lines)
  • Bone destruction
  • Some pathological fractures
  • Radiological lesions, in later cases, are seen in the form of vertebral collapse, osteolysis of bones and avascular osteonecrosis.

3. Bone marrow biopsy

This is the gold standard investigation to diagnose Leukemia. This invasive procedure is done after the suspicion of Leukemia or when the blood test reports point to a Leukemic picture.

The procedure involves the removal of a small sample of bone marrow from the hipbone. A long, thin is the needle is used to extract the bone marrow. Once the sample has been taken it is sent to the laboratory where the histopathologists study the tissue microscopically.

Prior to examining the histopathologist or the lab technician prepares a slide. During the process, the specimen is then cut into thin slices. The sectioned structure is dyed using different dyes. The dye discriminates against the parts of the cells. The section is then placed on a glass slide and then covered with a slip on the top to keep the specimen intact. The slide is now ready to be placed under the microscope.

The samples examined under the microscope are then studied based on the type of cells, how the cells are arranged, whether the cells are normal or abnormal etc.

The microscopic findings may reveal:

  • Acute Myeloid Leukemia

Increase in bone marrow cellularity, consisting of granulocytic or monocytic forms a number of erythroid precursors

  • Acute Lymphocytic Leukemia

Hypercellular bone marrow with multiple tightly packed lymphoblasts that have undetectable cytoplasm, round irregular shape, divided nuclei, and dispersed chromatin. The bone marrow has B and T lymphoblasts with indistinguishable morphology along with necrosis in some areas.

Treatment for Leukemia

Treating Leukemia challenges all medical practitioners. Its success and failure solely depend on the extent of the disease and how far has it spread within the body.

Following are treatment options that can help fight Leukemia.

1. Chemotherapy

Chemotherapy is the use of anticancer drugs to kill or halt the proliferation of cancer cells. Generally, chemotherapy is administered orally or intravenously. In some patients, the chemotherapeutic agent is given intrathecally, i.e., injected into the CSF (cerebrospinal fluid) that bathes the brain and spinal cord. This is done after performing a lumbar puncture and injecting chemotherapeutic drugs, such as methotrexate. The course is usually repeated every three weeks.

2. Radiotherapy

Compared to chemotherapy that attacks all the cells of the body, including the healthy ones, radiotherapy is a localized treatment regimen. High ionizing-energy radiation emits to destroy cells that have an increased proliferation rate. Radiotherapy can either be given to cure the disease (therapeutic) or to improve the signs and symptoms encountered during the disease course (palliative).

3. Stem cell or bone marrow transplantation

Transplants are widely used in management and treatment of the disease. Bone marrow is transplanted from a patients’ family member, or another person who bears the same type of bone marrow, into the diseased person. The survival rates vary with different factors but the cost and affordability remain the major concern in this treatment modality.

4. Immune therapy

Immune therapy is another set of treatments that has some promising result in managing Leukemia. The immune therapy works by promoting the immune cells of the body to fight against cancer cells. One of the successful regimens in immune therapy is Gleevec, commonly given in Chronic Myeloid Leukemia. CML patients live a long, symptomless life with the daily oral administration of this drug.

Complications with Leukemia

Though Leukemia is curable, treatments may give rise to certain complications–basically the body’s response to the treatment given. The complications mostly arise from chemo and radiation.

They can include:

  • Anemia
  • Skin rashes
  • Altered taste sensations
  • Soreness of the mouth and throat
  • Liver dysfunction
  • Hair loss
  • Diarrhea
  • Fatigue
  • Bleeding
  • Fertility problems
  • Nausea and vomiting
  • Neurological effects
  • Impaired sexual activity

Relapse of the disease may also occur after some years.

Conclusion

The prognosis of Leukemia depends on how far has the disease has spread but the medical advancement has brought in new regimens that can now treat Leukemia at any stage. A person suffering from Leukemia and undergoing its treatment should be dealt with love, care, and pampering

How to help prevent Leukemia

Informational campaigns and awareness programs help people learn about the risk factors of Leukemia. Family members of Leukemia patients should undergo blood screenings to see if they have been affected. A good diet can help improve health status. Limiting use of benzene-infused chemicals can also make the disease less susceptible. Ceasing tobacco smoking can also help keep Leukemia at bay.

 

References

Acute Lymphoblastic Leukemia

Leukemia: an overview for primary care

Acute Myeloid Leukemia: diagnosis and management based on current molecular genetics approach

Treatment of acute myeloid leukemia

Clonal hematopoiesis and preleukemia-genetics, biology, and clinical implications

No free rides: management of toxicities of novel immunotherapies in ALL, including financial

Adult Acute Myeloid Leukemia Treatment

Acute Lymphocytic Leukemia

Genetics and prognosis of ALL in children vs adults

Etiology of leukemia. A review

Symptoms of adult chronic and acute leukaemia before diagnosis: large primary care case-control studies using electronic records

Acute lymphoblastic leukemia: a comprehensive review and 2017 update

Acute myeloid leukaemia: optimal management and recent developments

The Empowered Myeloma Thriver and Expert Chat

The Empowered Myeloma Thriver and Expert Chat from Patient Empowerment Network on Vimeo.

 Dr. Nina Shah, a specialist in multiple myeloma, discusses what newly diagnosed myeloma patients need to know.

Dr. Nina Shah is a specialist in blood diseases who focuses on treating multiple myeloma at University of California San Francisco. More about this expert here.


Transcript:

John Rosengard:

Hi, and welcome to the Patient Empowerment Network Program. My name’s John Rosengard, and I’m a myeloma patient survivor. I just wanted to tell you a little bit about our program today. I’m joined by my hematologist and oncologist, Dr. Nina Shah, from the University of California San Francisco. Dr. Shah, could you give us a little bit of your background, please?

Dr. Nina Shah:

Hi. My name’s Nina. I’m really thrilled to be here at this event. I have been at the University of California San Francisco since 2017. And before that, I was at MD Anderson Cancer Center. My clinical focus is in multiple myeloma, and my research focus is in immunotherapy and cellular therapy for multiple myeloma. I look after hundreds of patients with multiple myeloma, and our clinic here at UCSF as 1,500 active myeloma patients, and I really love participating in a mixture of clinical trials, which includes antibody therapy, novel drug combinations, novel agents, phase one trials, and chimeric antigen receptor T-cells or CAR T-cells.

John:

That’s great. Thank you. I’ll give a brief rundown of my myeloma journey for other patients who may be tuning into this. I learned that I had multiple myeloma from the back-pain route, I guess I’d call it. I was diagnosed at UCSF in November of 2017 and started my treatment with Dr. Shah a few weeks later. The treatment involved me joining a four medication clinical trial and then having an autologous stem cell transplant a few months later in May of 2018.

After that, moved into the consolidation and maintenance phases of treatment. Consolidation brought back my quality of life pretty quickly, but, in maintenance, which will stretch out for another year to come, really just means testing and monthly infusions for me. Dr. Shah, do you have anything else to add about the clinical trials that I’m involved in or how patients might navigate the clinical trial process?

Dr. Nina Shah:

Yeah. So, it was a great partnership that you and I had for the clinical trial, and one of the things that this particular trial was looking at is understanding how many drugs are good for a myeloma patient upfront. As you know, we – the standard now, give three drugs upfront, but this explored possibly using an additional drug. And in your case, this drug was daratumumab, which is an immunotherapy. It’s interesting that we’re having this interview today because this drug, daratumumab, was just FDA approved to be given, upfront, exactly in your setting, with a transplant.

And so, even though your study is still maturing, the study before yours is confirming sort of what we thought might be true. So, it’s hard to say every detail that goes along with getting into a clinical trial, but I think one of the things that’s really important is a really nice conversation and partnership between the patient and the provider because it’s our responsibility, as providers, to explain the disease, why it happens, what are the clinical manifestations, what pain you may be having, what other things might be abnormal in your labs and, for you, as a patient, to feel like your symptoms are being addressed, but then, also, what there is as a clear plan for your treatment.

And in this way, the discussion about clinical trials really naturally enters because, if there is a clinical trial available, even in the upfront setting, like as what’s happened to you, it’s worth it to consider because that gives an additional opportunity for the patient and the physician to talk more about the disease and also talk about, what are the ongoing questions that we have in our study of multiple Myeloma? So, in this way, I think the conversation between the patient and the physician can help not only to understand the disease better, but also understand clinical trial options together.

John:

Yeah, absolutely. The treatment selection process I found to be enormously important because, again, it’s the first part of fighting multiple myeloma directly. To piggyback off what you just said, some people might think that having a clinical trial as their front line or first treatment is a little unusual, but I didn’t think so. My initial reaction and research was that the T-cell therapies or the CAR T treatment option, which was still incredibly new and innovative in 2017, was really for serious relapse and refractory cases. And those patients were getting access to CAR T-cells first, and that counted me out as a frontline or a first-time newly diagnosed patient.

But also, some evidence was really coming out. The three-drug therapies were adding years of high-quality life as opposed to the two drug therapies that were used not that long ago. The research, however, was a little contradictory because none of the information that I found in that first faithful Google search was dated. So, I would find information from 10 years ago that was incredibly pessimistic about the options and the number of years of high-quality life, as well as the, I’d say, turnover in treatment options and the aggressive number of clinical trials that were being offered within the Myeloma patient community.

That didn’t come out until, I guess, my second or third faithful Google search, but it was really helpful as a layperson because my initial reaction was additional medications. And I brought along a show and tell for us. Here’s the additional medications.

Dr. Nina Shah:

Oh, good.

John:

– and here’s the backup if those don’t work. I don’t take those now, but it’s not inconsequential to say, “It’s really important to understand the multiplying effect.” I’ll call it that as a layperson. The multiplying effect and the quick or measurable response. So, for newly diagnosed patients and their caregivers who might notice that treatment selection is a vital first step of the process, Dr. Shah, that requires learning a new vocabulary and acting when clearer data is ready and available. What general processes do you try to bring to a new patient when they’re just getting started on this journey?

Dr. Nina Shah:

Yeah, I think you make a really good point that the availability of information can be a blessing and a curse. So, a lot of my patients – actually, even in the past 10 years, I’ve noticed a difference, that people coming in and they know more about the disease because of things like Google and other information portals that we have, which I think is great, but also absolutely needs to be digested with a little bit of context from each patient’s particular case.

So, I think one of the main things that we, as providers, can do is educate the patient on how this disease comes about, and that’s one of the first things I do when I meet a patient. Saying, “Okay, do you know what you have? Has someone told you?” Because even if not everybody has a medical or science background, it’s pretty simple to explain that myeloma itself is a cancer of one of the immune cells and what the things happen – what they’ve happened because of that particular cell growing. And if patients can understand that, then they can look at their labs and interpret their data because, remember, now, we all have access to our labs, which a lot of my patients didn’t have 10 years ago, and we look.

We look at our little portals, and we try to see what the lab values are, what the anemia is, etc. And one thing that’s really critical to interpreting myeloma labs, for many patients, not all, is understanding the myeloma profile, which includes the SPEP, or serum protein electrophoresis, and then the light chain, the free kappa, free lambda, and sometimes the urine protein electrophoresis. And learning how to read those three things can actually help a patient feel very empowered because they don’t have to wait for every visit to talk to the doctor about their results. And the honest truth is, sometimes, every doctor doesn’t have time to e-mail every patient after every result. So, it’s a good way to get educated upfront, empower the patient, and say, “Okay, I now know how to interpret my labs, and I will work with you. You and I are gonna work together. If we see something abnormal together, we’ll chase it.”

And similarly, the bone marrow results – because those are also – I mean, even doctors have a hard time interpreting those. It’s important to go over the actual words that mean something to both the doctor and the patient at the initial diagnosis. And I think that’s another way that people can be empowered as they start their journey.

John:

Would you say that it’s easy or difficult for a patient or a caregiver to get bogged down in detail as they’re picking up the vocabulary, picking up the processes available to them?

Dr. Nina Shah:

Yeah, I think that’s definitely patient dependent and caregiver dependent. What I’ve noticed – and I know I have a skewed perspective because I practice at an academic center, but what I’ve noticed is that a lot of people want to know. They want to know the details, and, at first, it’s a lot of information to digest because, the day that they’re seeing you for the first time, we’re talking about disease and prognosis and risk. And maybe, the second time, we’re talking about treatment and eventual transplant. But each time, I do show or I talk about their “markers”, and we talk about the labs. Each time that we have a visit, it’s a chance for patients to get more details and to digest those details more.

So, if-if they’re detail-oriented, that actually ends up being a good thing, uh, because then, as time goes on, they feel like, “Okay, I have an idea of what’s going on. I know what to look for.” But that doesn’t mean you have to be. Some patients would rather just have their provider tell them what they need to know, and they don’t wanna be a slave to the lab, and that’s fine, too. Either way is fine as long as both the patient and the provider know how to navigate each system.

I think that one of the things that you kind of already brought up is what tools that you guys, as patients, have, particularly within electronic medical records, and this is actually something relatively new for all of us. Like I said, 10 years ago, we didn’t use it as much. But now, you have things like the MyChart app, and then you have social media. We have patient advocacy groups. If you had to look at all that, what would you say is the most useful for you?

John:

I’d say, a little selfishly, it was following your suggestion to follow you on Twitter, to keep up with the research because you’re a great filter for all of the content that’s out there. I know a few of the doctors that are very active in the multiple myeloma community are thoroughly well published. They’re speaking on a regular basis. And your Twitter feed, by the way, ninashah33 – just ninashah33 all one term.

You filter that out for me, so I have a running chance at actually finishing it in an hour when I pull it up because the content that you bring together is some highlights about what medications are working, what therapies are coming out that are that are combinations of medications – stem cell transplant, CAR T-cell therapy, and so on.

And in getting up the learning curve, which I think every patient and caregiver has got a duty to do, is a lot easier if there’s someone saying that there’s some raw research in the UK. There’s some raw research in these medical centers here in the U.S. Follow them. Follow these doctors. You’ll get a good read on what’s the curve. I think that that was a lifesaver because I could’ve really spent 10 hours a week just getting background and just getting comfortable with the content. And at some points, it was a little unnerving to find out that there’s a 50/50 chance of the life expectancy being measured in a very short time span versus having the forecast that you could really be returning to your life.

But I travel quite a bit for my work. You travel quite a bit for your work. To be able to get back to that pretty quickly was evident a month after my stem cell transplant, which I remember ticked you off a little bit that I should be just saying that I can’t just stroll in the San Francisco Airport and go wherever I wanted to. I had to give a little bit of thought about my compromised immune system, which I well and truly did. But again, going off of the filtered information as opposed to the raw information was a big plus for me.

Dr. Nina Shah:

Yeah, I mean, that was one of the things, I think, for you and I, as a doctor/patient relationship, that I saw you were really focusing on things – that you wouldn’t ask, necessarily, “Okay, when’s this gonna be cured? When’s this gonna be cured?” But rather, “Okay, I know that there can be times between my state right now and eventual potential progression or not, and how do you tell a patient – if you see a patient who’s newly diagnosed, how do you tell them to focus on those types of things so that they can bite off small pieces and go day to day, get back to their life, and not focus on just one thing about, “Oh, is this gonna be cured ever?” What advice do you think you can help people with that?

John:

Well, my first thing is – and this is me being me, but I built a spreadsheet. I built a giant spreadsheet of my lab data, going back to, really, the 1990s. Nothing to do with UCSF’s treatment, but just I wanted to put it all in one place so I had just a reference point to start with.

And it gave me a silly sense of control, I guess, to say, “I can now detect if there’s a very, very slight change in the IgG kappa reading from month to month to month. I can be on top of it just like you are.” That doesn’t give me an MD or a license to practice medicine, but it gives me the ability to at least say, “Is this anything to be concerned about, or is this still in the error bar of I’m still okay? And we haven’t gone up here. We haven’t gone down here. We’re still sort of moving along over time.”

And that comfort level of just building some sensitivity to what data mattered and what data could still move around and be perfectly normal, that sensitivity that’s – Microsoft Excel doesn’t give you that. The raw lab data doesn’t give you that. That’s where your position and honest conversation can take you to a good understanding of how those different variables interplay with one another and how a sudden spike in one can be indicative of nothing more than having a cold or picking up the flu, unfortunately, during that time of the year, cold and flu season.

Dr. Nina Shah:

Yeah. Yeah, I think that, patients like you, who are either, maybe, just starting therapy or maybe just starting to get engaged with their process, trying to have more control, power, and, also, education about what they’re doing, it’s really important to ask questions to their provider. And what you said is right. You’re looking at the labs on the spreadsheet. I’m looking at it at the electronic medical record. We’re both human, so I may miss something. And I try not to, but – and you may catch something.

Even though we have our “roles” as provider and patient, we are on this together. So, I think it’s really important for patients to ask things of their doctor. They should never feel shy. I know it’s sort of hard because you’re talking to a stranger and, yet, someone you have a relationship with. So, it’s kinda interesting. You may not want to question that person, but you should with all our capable thinking and processing information different ways. And it’s really nice – I actually like it when the patients ask me, “Well, what do you think about that?” And I may have not thought about it in the way that they’re thinking about it because they may tie it into a symptom that they’re having, or, like you said, you may have a virus or something and say, “I have this virus,” and maybe I was worried about this IgG, but it turns out that you had a recent virus. So, they’re all ways that we can put information together and, more information, the better.

So, one thing I would just say to patients and what I feel like you benefit from is, ask questions. Ask questions about lab interpretations, about what next steps are, just questions about what’s been going on lately. And I think that will give education and, I think, ultimately, will give the patient more power.

John:

Mm-hmm. And just to go a little further into that point, every month, I come in for my lab work as part of the participation in the clinical trial. Other patients may be coming in on a less frequent basis, perhaps every 90 or 180 days or once a year if they’ve got a, for example, smoldering myeloma or other conditions. My point in bringing this up is that one of those may be – and if we all live long enough, one of those probably will be – one to say, “It’s not getting better, and this condition is getting a little worse.” That’s another step I’m ready for, to just say, “What are our options at that point? What treatment options do we have available?”

Because it’s not a one and done. It’s not like having a broken bone where you can just say, “Set it, get it in a cast, take good care of it, and keep the weight off of it. And then, six to eight weeks later, something new will be ready to happen.” This is an ongoing battle with them and being a part of a clinical trial that does help the 30,000 newly diagnosed multiple myeloma patients here in the U.S. be a little closer to some effective treatments is, I think, all part of the healthy part of the equation. Any further thoughts on first steps for those newly diagnosed patients?

Dr. Nina Shah:

Yeah. I think, as you already mentioned, things like the Patient Power website, Myeloma Crowd, healthtree.org, Myeloma Beacon, MMRF – all of these are really important places where patients can get good quality information. I like hearing that my patients have gotten information from other people. It’s okay to get a second opinion. It’s totally fine. You should feel in control of your health and your decision making.

John:

Absolutely. Just a little bit about Dr. Shah, from my perspective, she’s my go-to person for multiple myeloma at UCSF, but UCSF is like any big institution. If you like processes, multiple myeloma is your condition. If you want to talk about faster infusions, because they might be taking too long, there’s a team, but she’s not the right person to talk to directly. If you wanna understand lab results, she’s the right person. But if you have trouble logging in or with the helpline being available for you, there’s a team for that. If you have questions about billing and insurance, there’s another team for that. Team management support groups, another team.

UCSF has got depth and strength, and other regional medical centers that have, I guess, the specialists, rather – a large specialist team in multiple myeloma – will, inevitably, have that layering of people. And I found that my treatment team grew from my one best friend or two best friends, my general practitioner here in the Bay Area, California – it grew to 10 people to include Dr. Shah, and then it grew to 25 people. Before I knew it, I had 25 best friends who wanted to know how I was doing and how my symptoms were relative to subsequent treatment stages.

And it took time for me to get to know them and for them to get to know me, but that investment of time and effort to, again, be part of the team and be part of the equation and processes was an important part of just getting through the clinical trial efficiently and effectively and then just being ready for the next steps of, again, prospectively, full remission, relapse, refractory, and just a whole variety of outcomes that have yet to play out over the years and decades to come.

So, with that in mind, I just wanted to move on to a couple of questions that have come up from different participants at the Patient Power website. The copays for multiple myeloma drugs can be very expensive. Any advice on how to deal with that, or are there programs that can help?

Dr. Nina Shah:

Yeah, this is a really important question. I’ve frequently noticed this, especially in my Medicare population, particularly with oral chemotherapy, for example, lenalidomide. There are patient assistance programs, which are company-specific, and you can ask the company directly. They usually have a hotline, or you can ask, at your particular oncologist office, if they have a connection with a local area rep who can put you in contact with that helpline. This is a frustrating part, and what I’ve been trying to do is, when I meet with a lot of these representatives, I try to take your complaint about this to them directly and say, “Look, my patients are not gonna get your drugs if it’s not affordable.” And ultimately, that means that that drug company needs to work with all the insurance companies, including Medicare drug coverage, to supply this for patients. So, that’s what I can do on my end. And then, from your end, really working with the patient assistance programs. They do exist, but they’re a pain. They’re one more thing you have to do, which it’s hard for us to tell you, but we also want you to get the drug.

John:

Second question comes from Jefferey. It’s been two years since I was diagnosed with smoldering myeloma. My oncologist said that my numbers are not at a point for treatment today, but he has me doing bloodwork and bone x-rays every three months. This is causing me a lot of stress and mental anxiety. Is this a normal situation to be diagnosed and not doing anything about it? Any advice on how to cope with the stress and anxiety of waiting to be treated? What do you think, Dr. Shah?

Dr. Nina Shah:

Yeah, this is a really important question because there are a lot of patients out there who are diagnosed with smoldering multiple myeloma, or what we call asymptomatic myeloma, meaning that you have some plasma cells in your bone marrow, and you also have some evidence of M-protein or light chain, but you don’t have enough to require treatment, and the first thing I can say is there’s reason for that; because, as of now, we don’t have any data to show that treating you early before you develop symptoms is going to prolong your life.

That being said, there are some clinical trials that look at patients, what we call high-risk smoldering myeloma, to be enrolled in clinical trials of treatment versus not. I have mixed feelings on this because I’m one of those people that likes to preserve quality of life as much as possible, and most of my smoldering myeloma patients are full-time at work, not doing anything else. And so, what I always tell these patients – and I don’t wanna put this on every other physician out there, but I always say, “Let me do the worrying. You come in for your labs. You come in for your assessment.”

I usually do a bone marrow and either PET or MRI every year because that can change decisions. But I always tell my patients, get the labs, walk out of the lab building – out of your Quest or whatever it is – and let me do the worrying because there is nothing you can change, and I want it to be something that’s just a part of monitoring but not anxiety. In response to the question, it is totally normal to get that frequency of checking, and that’s really on us, as a partnership, to make sure that you feel comfortable with that frequency, but also that your provider is checking up on the labs when they come to the boss.

John:

What do you think are some of the mistakes that a newly diagnosed patient can make about their treatment or about their recovery?

Dr. Nina Shah:

Well, that’s a hard question because I think the patient, really, can never make a mistake because, ultimately, it’s about what the patient wants. But I will say that, a lot of times, patients think that they can not get treatment for symptomatic myeloma. For example, they have a new plasmacytoma on their shoulder or have broken a bone or a new anemia. And they’ll say, “Well, I just wanna use natural means to get rid of this.”

And I don’t have any problems with natural medicine or anything like that, but my education and experience has taught me that it’s not gonna be enough to stave off this really aggressive malignancy, and the last thing I want someone to do is to break a bone in their spine and then become paralyzed. So, I always say, “I’m happy to work with you and whoever your naturopath is or whoever your other physician is, but I truly feel that you need treatment, and then I want that to get through to you.” And that’s just my experience. But again, I always do try to respect what the patient’s wishes are.

John:

Another participant on the Patient Power website asks, “Is there a resource for local oncologists to reach out for information and collaboration about multiple myeloma?”

Dr. Nina Shah:

Yeah. Now, depending on where you are, you’re probably in touch with the local, maybe, academic hospital, and it’s hard to know – just depends on where you are in the U.S. But I really do like going to the Multiple Myeloma Research Foundation website because they have information there, and you can actually contact them, and they would be able to put you in touch with someone who might be a myeloma expert. I mean, you already said it. You can even look on Twitter and follow myeloma feeds and actually do a direct message to any one of us. Usually, one of us gets the message, and we’ll respond back.

Most everyone has a way to contact through the American Society of Hematology. That’s another way that physicians who are hematologists contact each other. If you really want to get your doctor to somebody who’s a myeloma expert, it should not take more than three tries of contacting this person or that person to be able to get through. My email is public, and other people’s are as well, and I usually respond. So, it’s more a question of making that initial effort. Okay, I’m gonna go through a web search and find this person’s e-mail and send them a message. But we are always willing and happy to answer these questions because, a lot of times, these patients may wanna come for a second opinion or consider a clinical trial or just need some advice, and that’s totally fine.

John:

Just to add to that, Dr. Shah, one of the things that I’ve noted from MMRF and other organizations is, periodically, there are patient summits that are offered all over the country, and they’re generally – in my experience so far, is that there are at least 500 to 3,000-person beds. They’re quite large, and it may be, I guess, comforting, to a degree, to meet and be met by others that have the same concerns about multiple myeloma as a patient or a caregiver and see that there is some strength in numbers. Do you have any closing thoughts on our talk today?

Dr. Nina Shah:

Yeah. I really like the point you said about meeting other people with this disease and other caregivers. We’re fortunate enough, in the Bay Area, to have a patient-centered support group, and I really like doing programs with them.

And what I’ve noticed about all the patients who attend something like that, even if it’s a cancer, in general, support group, is that they can share stories and sort of talk. I mean, it’s important. It’s a really huge thing you’re going through, and you need to talk to other people about it and people who understand. So, it’s great to get a support group even if it’s just cancer, even better if you have a myeloma support group. And online, there are support groups as well. So, whatever you can do to make yourself feel not alone will also add to your empowerment.

John:

Well, thank you, Dr. Shah. It’s been great catching up with you today. Thank you for participating in this event, and that is it for us. Thanks for joining us.


Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.