Compassion Meditation

Compassion Meditation from Patient Empowerment Network on Vimeo.

 Learn about cultivating love and tenderness towards others and bolstering feelings of connectedness as well as understanding and acceptance of others. Support your overall psychological and emotional well-being. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on directing compassion towards another.

Compassion is having tenderness towards someone who is suffering along with a heartfelt desire to alleviate their suffering. In this practice we will be offering this compassion towards someone who is dear to ourselves. Bring to mind someone in your life who is suffering. Someone is going through challenging time. Who may be struggling with discomfort or distress? Picture them in your mind and allow yourself to feel a tender caring for their wellbeing. Allow yourself to hold them in your heart. Feeling their presence.

To your level of comfort, allow yourself to feel into their discomfort, their pain, their suffering. Doing so without overwhelming yourself with their pain, with their suffering. So, doing so to your level of comfort. Feeling your heart continuing to open to them. Wishing them well. Extending your tenderness and compassion towards them in their pain and wishing them well. Wishing them well. Repeating the following phrases or modify them to meet your heart’s sincere desire for their wellbeing: May you be held in compassion, May your pain and sorrow be eased, May your heart be at peace, May you be free from suffering.

Again, you modify any of those phrases that are suitable for your desire for their wellbeing. Repeating to yourself with a tender heart. Bringing this practice to a close. Releasing the phrases and noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Self-Compassion Meditation

Self-Compassion Meditation from Patient Empowerment Network on Vimeo.

Learn about cultivating love and tenderness towards yourself and bolstering feelings of self-worth, self-acceptance, and resilience. Support your overall psychological and emotional well-being.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on directing compassion towards ourselves. Compassion is having tenderness towards someone who is suffering along with a heartfelt desire to alleviate their suffering.

In this practice we will be targeting this compassion towards ourselves. Bring to mind a situation in your life that is difficult, a situation that is causing you stress. To your level of comfort allow yourself to feel the discomfort of the situation in your body. Now please don’t force this. Back off if it is too intense. You don’t want to force this. Saying silently to yourself as you feel into the discomfort: this is a moment of suffering, this is difficult, this is hard, this is painful. Whatever words you can use to acknowledge your distress. Acknowledging that in life there are difficult moments. That you are not alone. So, silently saying to yourself, acknowledging to yourself that suffering is a part of the human experience. We all go through struggles in our lives. Acknowledging your struggle, your discomfort as a human being having a human experience. If you like, you may place a tender hand over your heart. Asking yourself what kind words you need to soothe yourself in this moment of distress, of discomfort, of suffering. See if any of the following phrases work for you or find what works for you in your particular situation: May I give myself the compassion that I need, May I learn to accept myself as I am, May I forgive myself, May I be kind to myself, or May I be patient. Repeating your desired phrase or phrases to yourself with a tender heart.

Bringing this practice to a close. Noticing how you feel. So releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Health Benefits of Antioxidants

Benefits of Antioxidants from Patient Empowerment Network on Vimeo.

What’s the deal with antioxidants? Antioxidants are compounds that protect the body against diseases related to damage to tissues and cells from highly reactive substances. Watch now.

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Transcript:

Antioxidants are compounds that inhibit the oxidation of other substances by stabilizing and neutralizing free radicals. Low levels of free radicals in the body are normal and can be beneficial. Free radicals are a natural byproduct of metabolic reactions in the body and play a vital role in our immune system function. However, too many free radicals can lead to oxidative stress. Oxidative stress can destroy cell membranes, proteins, RNA, and DNA, and thereby contribute to chronic diseases like cancer, cardiovascular disease, diabetes, and Alzheimer’s disease. 

Antioxidants can play an important role in mitigating these potential chronic diseases. Here are a few antioxidants and their health promoting benefits: Vitamin C found in citrus fruits and cruciferous vegetables protects DNA, RNA, and cell membranes. Vitamin E found in sunflower seeds and almonds protects cellular membranes. Carotenoids, a phytochemical found in pumpkin and carrots act as a free radical scavenger. Vitamin A found in leafy green vegetables, orange and yellow vegetables, in the precursor form of beta carotene, protects cellular membranes and reduces inflammation. Selenium is an essential trace mineral and powerful antioxidant that helps to regenerate other antioxidants, including vitamin C. 

It is apparent that the benefits of antioxidants work in combination with each other along with phytochemicals and micronutrients in food to protect the body against oxidative stress from free radicals. The benefits of eating antioxidant-rich foods come from the entire package of nutrients in whole foods, a combination that can’t be replicated in a supplement. Therefore, eating a diet rich in antioxidant-containing foods like fruits, vegetables, and whole grains will provide you with the health promoting benefits that antioxidants offer.

Thanks for joining this Patient Empowerment Network program. Please remember to ask your healthcare team what may be right for you.

Loving Kindness Meditation (Part II)

Loving Kindness Meditation (Part II) from Patient Empowerment Network on Vimeo.

 Learn about cultivating love and kindness towards others and enhancing your capacity for social connectedness. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be planting seeds of loving kindness towards others in the garden of our minds. To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary.

Allow your eyes to softly close, if you feel comfortable doing so. Begin to feel into the weight of your body being supported by your seat. Taking in a deep breath in through the nostrils and exhale softly out the mouth with pursed lips. Do this several times. Releasing control of the breath and allow yourself to feel into the natural rhythm of your breath. The natural uncontrolled breath. Relaxing with each breath. Bring to mind the feeling of love to the best of your ability. Without forcing it. You may bring up a memory to support you in this process. The important thing here is to feel into the quality of love itself. Again, without forcing it.

Allowing this feeling of love to permeate your mind and body, your entire being. With a loving heart bring to mind someone who is dear to you. With a kind and loving heart begin to silently repeat the following phrases towards them. Feeling into to each repetition of the phrases to best of your ability without forcing it. May you be safe from harm, May you be well in mind and body, May you be happy, May you live with ease, May you be filled with lovingkindness. Let’s circle back and extend this kind heartedness towards all beings.  May all beings be safe from harm, May all beings be well in mind and body, May all beings be happy, May all beings live with ease, May all beings be filled with lovingkindness. Releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Benefits of Phytochemicals

Benefits of Phytochemicals from Patient Empowerment Network on Vimeo

Phytochemicals are substances found in plants that are capable of providing health-promoting properties, such as antioxidants. Watch now.

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Transcript:

Phytochemicals, also referred to as phytonutrients, are substances found in plants in small amounts that are not essential nutrients but may have health-promoting properties. Although the health benefits of phytochemicals are still under scientific investigation, there are some prominent functions and therefore potential benefits worth mentioning. One well- known property of phytochemicals is their potential to act as and support the function of antioxidants. They can also mimic hormones, alter absorption of cholesterol, inhibit inflammatory responses, and block the actions of certain enzymes. 

Here are some potential health benefits that may result from a few well-known phytochemicals: Carotenoids found in yellow-orange fruits and vegetables, as well as in dark green leafy vegetables may possess strong cancer-fighting properties. Indoles found in cruciferous vegetables like bok choy and broccoli may inhibit the development of cancer-causing hormones and prevent tumor growth. Phytoestrogens found in berries, soybeans, and garlic may lower the risk for osteoporosis, heart disease, breast cancer, and menopausal symptoms. Saponins found in legumes like kidney beans and lentils may decrease blood lipids, lower cancer risks, and lower the blood glucose response. Flavonoids found in various fruits, vegetables, chocolates, nuts, and seeds may benefit the immune system and prevent cancer cell growth.

It is the mixture and variety of phytochemicals in food acting in conjunction with each other and with other micronutrients that are linked to their health promoting benefits. Therefore, supplementation of phytochemicals in isolation may limit their health promoting properties. This is yet another reason to include whole plant-based foods in your diet.

Thanks for joining this Patient Empowerment Network program. Please remember to ask your healthcare team what may be right for you.

Loving Kindness Meditation (Part I)

Loving Kindness Meditation (Part I) from Patient Empowerment Network on Vimeo.

Learn about cultivating love and kindness towards yourself and enhancing psychological and emotional well-being. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be planting seeds of loving kindness towards ourselves in the garden of our minds.

To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary. Allow your eyes to softly close, if you feel comfortable doing so. Begin to feel into the weight of your body being supported by your seat. Take a deep breath in through the nostrils and exhale out the mouth softly with pursed lips. And do this several times. Allow yourself to feel into the rhythm of your natural breath. The natural uncontrolled breath. Relaxing with each breath. Bring to mind the feeling of love to the best of your ability. Without forcing it. You may bring up a memory to support you in this.

The important thing here is to feel into the quality of love itself. Without forcing it. Allowing this feeling of love to permeate your mind and body, your entire being. With a loving heart begin to softly gaze inward, inwardly towards yourself. With a kind and loving heart begin to silently repeat the following phrases towards yourself. Feeling into to each repetition of the phrases to best of your ability without forcing it. May I be safe from harm, May I be well in mind and body, May I be happy, May I live with ease, May I be filled with lovingkindness. Let’s circle back through one more time. May I be safe from harm, May I be well in mind and body, May I be happy, May I live with ease, May I be filled with lovingkindness. Releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Meditation on Gratitude

Meditation on Gratitude from Patient Empowerment Network on Vimeo.

 Learn about taking in the good by attending to the qualitative state of GRATITUDE to support overall psychological well-being. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on positive states of mind that support wellbeing.

The mind can be looked at like a garden. In this practice session we will be planting seeds in the garden of our minds by focusing our attention on positive states of mind. These mental states become inner resources that are more accessible to us in our daily experiences. So, for this particular practice session we will be planting the seeds of Gratitude.

To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary. Allow your eyes to softly close, if you feel comfortable doing so. Feeling into the weight of your body being supported by your seat. Bring to mind something that you are grateful for. A person, place or an object. Allowing this sense of thankfulness, gratefulness, gratitude to expand in your mind. Allowing yourself to feel into the experience of gratitude. Bring to mind something else that you are grateful for. Allowing it to expand in your mind. Allowing yourself to feel into it. Bring to mind one more thing that you are grateful for. Allowing it to expand in your mind. Feeling deeply into it. This sense of gratefulness, thankfulness, gratitude. Allowing this feeling of gratitude to penetrate and permeate your entire being. Noticing what is pleasant about this experience of gratitude. Feeling into the experience of gratitude. Unbounded gratitude. Exhaling your breath out and take in a full inhalation and exhaling with a soft ah… Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program.

Meditation on Love

Meditation on Love from Patient Empowerment Network on Vimeo.

 Learn about taking in the good by attending to the qualitative state of LOVE and making it a more available inner resource. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on positive states of mind that support wellbeing.

The mind can be looked at like a garden. In this practice session we will be planting seeds in the garden of our minds by focusing our attention on positive states of mind. These mental states become inner resources that are more accessible to us in our daily experiences. So, for this particular practice session we will be planting the seeds of Love.

To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary. Allow your eyes to softly close if you feel comfortable doing so. Feeling into the weight of your body being supported by your seat. Bring to mind an experience of Love. Recalling any experience that brings to mind Love. Something that has soothed your spirit. Feel into the Love of the experience. So, you want to tap into the Love, the feeling of Love. And letting go of the story about the experience and focus on the feeling of Love itself. Maintaining your attention on Love to best of your ability. If the mind wonders about, gently come back to the feeling of Love. Without fighting your mind gently come back to the feeling of Love. Opening yourself to this Love. Allowing it to fill your mind. Noticing this feeling of Love. Feeling into it like it’s your first time. Taking it all in. Receiving the Love. Giving yourself over to it. Allowing it to become a part of who you are. A part of your being. This feeling of Love. Noticing what is pleasant about this experience of Love. Feeling the presence of Love. Unbounded Love. Exhaling your breath out and taking in a full inhalation and exhaling with a soft ah… Gently open your eyes. We hope you enjoyed this Patient Empowerment Network program.

Meditation on Peace

Meditation on Peace from Patient Empowerment Network on Vimeo.

Learn about taking in the good by attending to the qualitative state of PEACE and making it a more available inner resource. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on positive states of mind that support wellbeing.

The mind can be looked at like a garden. In this practice session we will be planting seeds in the garden of our minds by focusing our attention on positive states of mind. These mental states become inner resources that are more accessible to us in our daily experiences. So, for this particular practice session we will be planting the seeds of Peace.

To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary. Allow your eyes to softly close if you feel comfortable doing so. Feeling into the weight of your body being supported by your seat. Bring to mind an experience of Peace. Recalling any experience that brings to mind Peace. Something that has soothed your spirit. Feel into the Peace of the experience. So, you want to tap into the Peace, the feeling of Peace. And letting go of the story about the experience and focus on the feeling of Peace. Maintaining your attention on Peace to best of your ability. If the mind wonders about, gently come back to the feeling of Peace. Without fighting your mind gently come back to the feeling of Peace. Opening yourself to this Peace. Allowing it to fill your mind. Noticing this feeling of Peace. Feeling into it like it’s your first time. Taking it all in. Receiving the Peace. Giving yourself over to it. Allowing it to become a part of who you are. A part of your being. This Peace. This feeling of Peace. Notice what is pleasant about this experience of Peace. Feeling the presence of Peace. Unbounded Peace. Exhaling all your breath out and taking in a full inhalation and exhaling with a soft ah… Gently open your eyes.

We hope you enjoyed this Patient Empowerment Network program.

Benefits of Minerals

Benefits of Minerals from Patient Empowerment Network on Vimeo.

Minerals are very important elements required in small amounts in the diet that are used in the body to promote various functions and to help form body structures. Watch now.

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Transcript:

Similar to vitamins, minerals are micronutrients that are essential to human health and can be obtained in our diet from different types of food.  

Minerals are inorganic elements from the Earth. Plants extract minerals from the soil they grow in and we humans obtain minerals directly from eating those plants, as well as indirectly from eating animal foods. We also get minerals from the water we drink.

Minerals are classified as either major minerals or trace minerals, depending on the amount needed in the body. Major minerals include sodium, potassium, chloride, calcium, phosphorus, magnesium, and sulfur. Calcium, phosphorus, and magnesium help in the building and maintenance of healthy bones. Sulfur contributes to the health of skin, tendons, and ligaments. Sodium, potassium and chloride are important electrolytes that help maintain fluid balance. Sodium and potassium are also important for nervous system function. Trace minerals include iron, copper, zinc, selenium, iodine, chromium, fluoride, manganese, and molybdenum. Iron is required for red blood cell function and therefore oxygen delivery. Copper is important for iron absorption and the production of red blood cells. Zinc is required for healing damaged tissue and supporting a healthy immune system. Selenium and iodine are essential for thyroid function. Selenium is also a powerful antioxidant. Fluoride is protective against tooth decay.

While deficiencies are possible with minerals, consuming a varied diet significantly improves an individual’s ability to meet their nutrient needs to maintain health and wellbeing. 

Thanks for joining this Patient Empowerment Network program. Please remember to ask your healthcare team what may be right for you.

Meditation on Joy

Meditation on Joy from Patient Empowerment Network on Vimeo.

Learn about taking in the good by attending to the qualitative state of JOY and making it a more available inner resource. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on positive states of mind that support wellbeing. The mind can be looked at like a garden. In this practice we will be planting seeds in the garden of our minds by focusing our attention on positive states of mind. These mental states become inner resources that are more accessible to us in our daily experiences. So, for this particular practice session we will be planting the seeds of joy.

To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary. Allow your eyes to softly close if you feel comfortable doing so. Feeling into the weight of your body being supported by your seat. Bring the mind to an experience of Joy. Recalling any experience that brings to mind Joy. Something that has lifted your spirits. Feel into the joy of the experience. So you want to tap into the joy, the feeling of joy. Letting go of the story and focus on the feeling of joy. Maintaining your attention on joy. If the mind wonders about gently come back to feeling joy. Without fighting your mind gently come back to the feeling of joy. Opening yourself to this joy. Allowing it to fill your mind. Noticing this feeling of joy. Feeling into it like it’s your first time. Taking it all in. Receiving the joy. Giving yourself over to it. Allowing it to become a part of who you are. A part of your being. This joy. This feeling of joy. Notice what is pleasant about this experience of joy. Feeling the presence of joy. Unbounded joy. Exhaling your breath out and taking in a full inhale and exhaling with a soft ah… Gently open your eyes. We hope you enjoyed this Patient Empowerment Network program

What Questions Should Patients Ask About Joining a Clinical Trial?

What Questions Should Patients Ask About Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Before participating in a clinical trial, what questions should you ask? Dr. Pauline Funchain of Cleveland Clinic shares critical questions patients should ask their healthcare team when considering a clinical trial.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Katherine Banwell:

If a trial is recommended, what questions should a patient ask about the trial itself? 

Dr. Pauline Funchain:

Yeah. I mean, I think when it comes to that, I think that the important things to ask, really, are what are the drugs involved, and what your doc thinks about those drugs. 

I think, what is the alternative? So, again, we were talking about option A, B, and C. Is this option A of A, B, and C, or option C of A, B, and C? Are there ones like Cindi mentioned, where if you don’t do it at this point, you’re going to lose the opportunity, because you started on something else. Because a lot of trials require either that a person has never gone through therapy, and so this is sort of first line trial. But some trials are you have to be at the second thing that you’ve been on.  

So, these are the things that matter to know. Are you going to lose an opportunity if you didn’t do it now, or can you do it later, and what is the preference? And I think, practically speaking, a patient really wants to know what is the schedule? Can I handle this? How far away do I live from the place that is giving this trial? 

What are the locations available? Because if there’s a trial and you have to come in every two weeks, or come in four times in two weeks, and then once every month after that, that makes a big difference depending on where you live, what season it is, weather, that kind of stuff.  

And I think the question that you don’t really have to ask, but a lot of people ask, is about cost. So, medical care nowadays is complex, it costs money when you don’t expect it to, it doesn’t cost money when it’s – you just don’t know what will and what won’t. Financial toxicity is something that we really care about. Every center is really trying its best, but it’s hard to do in this type of environment. So, people then get concerned that clinical trials might be even more complex.  

I think clinical trials are much less complex in that way, because a lot more of it is covered by the sponsor, whatever that sponsor is, whether that sponsor is the National Institutes of Health, as a grant, or a pharmaceutical company.  

But, in general, a clinical trial really should cost the same or less than whatever the standard medical care is; that’s the way they’re built. So, many, many people ask us that question, but I think that is the question that probably is less important than what are the drugs, what does your doc think about this, are you going to lose an opportunity if there’s a different sequence, and does this fit into your life and your schedule, and people who can give you rides.  

Katherine Banwell:

Yeah, right.  Are there resources available to assist with the financial impact of a clinical trial? 

Dr. Pauline Funchain:

There are not specific resources for clinical trials; there are specific resources for patients in general, though. There are things like helping with utility bills sometimes, sometimes with rides, I think a lot of clinical trials do pay for things like parking. In general, many trials themselves have extra financial support in them. There was a trial I remember that paid for airfare and lodging, because there were only five centers in the country, and so we had people fly in, and the whole thing was covered. 

It depends on the trial. But in terms of outside of trials, there are always patient advocacy groups and things like that, where certain things can get covered. But often, the types of things that get covered by those groups are the same things that get covered with normal medical care. 

How to Find a Clinical Trial That’s Right for You

How to Find a Clinical Trial That’s Right for You from Patient Empowerment Network on Vimeo.

If you are interested in participating in a clinical trial, where do you start? Dr. Pauline Funchain of Cleveland Clinic shares resources for patients on where to find and access a clinical trial that’s right for them.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Katherine Banwell:

So, if a patient is interested in joining a clinical trial, where should they start? 

Dr. Pauline Funchain:

They can start anywhere. There are many places to start. I think their oncologist is a really, really good place to start. I would say an oncologist, depending on their specialties, will have a general grasp of trials, or a really specific grasp of trials. 

I would say that the folks who have the most specific grasp on trials – what is available, what isn’t available, what’s at their center versus the next state over center – are the academic medical centers; the ones that are sort of university centers, places like the Cleveland Clinic where the docs are specialized by the type of cancer. That group of folks will have the best grasp on what’s current, what’s available. 

And so, Cindi, your friend referred you. many people do say that. Just go to whatever your nearest university center is, just because there’s a lot more specialization in that sense. But I think it’s the age of the Internet, so people can look online. Clinicaltrials.gov is a fantastic place to look. It is not as up to date, I think, as something you can get directly from a person at a medical center, but it is a great place to start.  

There are many advocacy groups and websites that will point people to trials. I mean, there are Facebook groups and things, where people will chat about trials. But I think the detail is better at a site like clinicaltrials.gov, and even better with a cancer-specific oncologist at a academic medical center. 

Understanding Common Clinical Trial Terminology

Medical terminology can be confusing and is especially important to understand when reviewing information to learn about a clinical trial. Dr. Pauline Funchain of Cleveland Clinic explains common terms and phrases to help patients better understand the clinical trial process.
 
Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Katherine Banwell:

Dr. Funchain, are there common clinical trial terms that patients should know? 

Dr. Pauline Funchain:

Yeah, there are trial terms that people hear all the time, and probably should know a little bit about. But I think the most common thing people will hear with trials are the type of trial it is, so Phase I, Phase II, Phase III. The important things to know about that are essentially, Phase I is it’s a brand-new drug, and all we’re trying to do is look for toxicity. Although we’ll always on the side be looking for efficacy for whether that drug actually works, we’re really looking to see if the drug is safe. 

A Phase II trial is a trial where we’re starting to look at efficacy to some degree, and we are still looking at toxicity. And then in Phase III is, we totally understand the toxicity, and we are seeing promise, and what we really want to do is see if this should become a new standard. So, that would be the Phase I, II, and III. 

Another couple of terms that people hear a lot about are eligibility criteria, or inclusion criteria. So, those are usually some set of 10 to 30 things that people can and can’t be. So, usually trials only allow certain types of cancer, and so that would be an inclusion criteria, but it will exclude other types of cancers. Most trials, unfortunately, exclude pregnant women. That would be an exclusion criteria.  

So, these are things that, at the very beginning of a trial, will allow someone to enter, or say, “You’re not in the safe category, we should not put you on a trial.” Many trials are randomized, so people will hear this a lot. Randomization.  

So, a lot of times, there is already a standard of care. When there’s already a standard of care, and you want to see if this drug is at least the same or better, then on that trial, there will be two different arms; a standard of care arm and experimental arm.  

And then in order to be fair, a randomized trial is a flip of a coin. Based on a electronic flip of a coin – nobody gets to choose; not the doc, not the patient. On that type of trial, you’ll either get what you would normally get, standard of care, or something new. So, that’s a randomized trial. Not all trials are randomized, but some are. And those are the things that people will run into often. 

You’ve Chosen to Participate In a Clinical Trial: What Are Next Steps?

You’ve Chosen to Participate in a Clinical Trial: What Are Next Steps? from Patient Empowerment Network on Vimeo.

What is it like to participate in a clinical trial? Dr. Pauline Funchain of Cleveland Clinic explains what to expect when joining a clinical trial and colorectal cancer survivor Cindi Terwoord shares her personal experience.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.
 
Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.

Katherine Banwell:

Dr. Funchain, once a patient like Cindi decides to participate in a trial, what happens next? 

Dr. Pauline Funchain:

So, there is a lot, actually, that happens. So, there is a lead-in period to a trial. So, once you decide, it’s not like you can start tomorrow on a trial drug. What happens really, there’s a whole safety lead-in that we call an enrollment period, where there’s a long checklist of making sure that a person is healthy, and there’s nothing – no organ or anything in particular – where we would be worried about this particular drug. 

So, there’s a checklist, that way there are usually – sometimes there’s a new scan if the last scan is a little bit too old, just so that we know exactly what somebody looks like right when they walk into the trial and start the drug. There are usually some blood tests and procedures that come before, and some of the stuff – half of the blood is for the trial, and half of the blood is for scientist usually, so that they can work on some of the science behind what’s happening to someone on a trial, which is pretty cool.  

And sometimes there is a procedure – a biopsy or something like that – that’s involved.  

But, in general, the lead-in is somewhere usually between two and four weeks from the time somebody decides they’re willing to be on a trial. And there are some extra safety measures, like if you hear about a trial, you can’t go on the trial right away, there’s got to be sort of a thinking period that’s usually about 24 hours before you can literally sign your name on the line.  

But, yeah, I’d expect something about two to three weeks before going on a trial. And then once folks are on a trial, it’s kind of like treatment. It’s just getting the treatments when you get the treatments. Sometimes there’s extra checks, again for safety, on drug levels and things.  

Katherine Banwell:

Would you review the safety protocols in place for clinical trials?  

Pauline Funchain:

Yeah, sure. So, safety is number one when it comes to trials, really. There are guardrails on guardrails on guardrails. But in any clinical trial protocol, it actually starts even before the trial starts. So, whenever somebody wants to bring in a trial, or wants to start a trial – and this is true at any academic institution, or any institution that runs trials – the trial goes through something called an IRB, or an Institutional Review Board, and that board reviews it and says, “Look, is this safe, are we harming people, are we unnecessarily coercing people?” 

And they read through the whole thing. And usually there’s a protocol data monitoring committee that also looks at it, there’s usually two. And there’s a lot of checks that a trial has to go through to make sure it’s safe, and fair, for all participants. So, that happens first.  

And then once the trial opens, there is continual monitoring. Every visit, every number that’s drawn. Any visit, even if the visit isn’t at the hospital that’s running the trial, even if it’s at a local urgent care, all of those things end up getting reported back, and there’s a whole team of people besides.  

So, a patient will see the doc, or the nurse, or maybe sometimes a research coordinator, research assistant. But then there are all these research coordinators that sit in offices that review everything, put it in the computers, and then record everything that happens to someone on the trial.  

And all of that data actually goes to an external review organization, a clinical trial research organization. And what they do is, they look over all of the data also. So, it’s not just internal people checking, because internal people may be biased for the people that pay them, right? 

Katherine Banwell:

Right. 

Dr. Pauline Funchain:

All of that data goes to an external monitoring board also, to make sure that everything is going the way it’s supposed to go. 

Katherine Banwell:

Yeah. Cindi, in your experience, did you feel like safety was a priority? 

Cindi Terwoord:

Oh, definitely, definitely, yeah. They were very, very careful. Mine was a two-part; I had a vaccine along with this nivolumab (Opdivo).  

And so, they would have to give me the vaccine, sit there and stare at me, to make sure I didn’t faint or something, and that was a good half-hour.  

Then I got the immunotherapy, and I’d have to wait an hour after that before I started on the chemotherapy.  

Katherine Banwell:

Oh. 

Cindi Terwoord:

Yeah, they were in there watching me like a hawk, and I felt very safe, I really did. 

Katherine Banwell:

Dr. Funchain, what are a patient’s rights when they participate in a trial? 

Dr. Pauline Funchain:

So, the most important thing, I think, that Cindi mentioned before is, a patient can withdraw at any time. Any time. They can sign the paperwork, and the next second decide not to. They can be almost to the end of the trial and decide that they want to come off. The last word is always with the patient.  

I think the other thing, in terms of safety, you can see – so every patient before starting a trial gets an informed consent. It is multiple pages, there’s a lot of legalese in it.   

But they do try their best to make it as readable and understandable as possible, so that people can, even if they don’t have a medical background, kind of understand what they’ve gotten. The mechanism of what they’ve gotten, and what new drug they’re getting, and generally what are the risks and benefits.  

For instance, let’s say there’s genetic testing involved, there’s always clauses that tell you what that means, and how protected your genetic information is, that kind of stuff.  

So, it’s a very long thing. And again, once someone gets that, they have to have a certain amount of time before they can sign on the line. So, I think information education, and then the ability to come off if they find necessary. 

Katherine Banwell:

Yeah. What happens after a trial is completed? Is a patient monitored? And if so, how? 

Dr. Pauline Funchain:

So, that depends on the trial.  

Most trials do monitor after either the drug is complete, or the course is complete for a certain amount of time, and it depends on the trial. For some trials, it’s six months after; for some trials, it’s years afterwards. So, in melanoma, we have a trial that just reported out their 7-1/2-year follow-up. But it was actually the first immunotherapy combination of its kind that involved the drug that you had to need nivolumab.   

So, it is pretty cool. I mean, that combination changed the face of what patients with melanoma could come to expect from their treatment, so we’re all very interested to know what that kind of follow-up is. But, yeah, it depends on the trial.