PEN Blog Archives

Living The Role of The Cancer Caregiver, With Kandis Draw

This WE Have Cancer podcast was published on December 17, 2019 here.

https://open.spotify.com/episode/7LFbOGoGONWtTbTBAkS3h9

Kandis’ mother succumbed to cancer in 2014. Not only was she her mother’s caregiver she also was charged with caring for her younger siblings. During this time she was literally burning the candle at both ends. During this conversation they discuss:

How she wished she knew of the resources available to support her during such a difficult time in her life.
The importance of reaching out to people in similar situations as a source of support.
The importance of self-care when serving as a caregiver and the enormous challenges she faced while caring for both her sick mother and her younger siblings.
How her relationship with with her mother blossomed during her illness.
The stigma in the African-American community around going to psycho-therapy and what motivated her to seek support.
How she coped with her mother’s passing.

What Does Patient-Centric Care Look Like For You? #patientchat Highlights

January 31, 2020/in Empowered Patient Chats, PEN Blog /by Kara Rayburn

Last week, we hosted an Empowered #patientchat on “What Does Patient-Centric Care Look Like For You?” and the #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Focus on Patient Activism

Patient-Centric = Viewing Patients as a Whole Person

All Patients Have Different Needs

Full Chat

For a list of all past #patientchat topics and transcripts, click here.

Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery

January 24, 2020/in Marie Ennis-O'Connor, PEN Blog /by Marie Ennis-O'Connor

The impact of cancer extends beyond the merely physical. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit or emotions untouched. The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD). ^[1] The term PTSD is commonly used to describe a range of symptoms an individual may develop in response to experiencing a traumatic event, in which bodily harm was experienced or threatened.

Most people associate PTSD with war veterans and victims of violent crime, but any life experience in which our safety and mortality are threatened can trigger PTSD. The physical and mental shock of having a life-threatening disease is a traumatic event for many cancer patients.^[2] The experience of trying to get back to normal after cancer treatment ends mirrors that of returning combat soldiers. The immediate crisis is over but our sense of security is shattered, leaving us feeling unsettled and vulnerable.

And what of those for whom treatment doesn’t end? Metastatic breast cancer patient, Abigail Johnston points out that “for men and women enduring the trauma of cancer treatment, the trauma is never over… reminders exist everywhere, ready to pop out when least expected to wreak havoc.” ^[3]

Could You Have Cancer-Related PTSD?

The symptoms of PTSD are similar to those of other states such as depression and anxiety, but one of the main signs that distinguishes PTSD is re-experiencing the traumatic event, often in the form of recurrent dreams or intrusive thoughts. These may consist of persistent memories of taste, smell, touch, and sound (for example you may still be able to “taste” the metallic taste of chemotherapy when you think about the event).

A number of risk factors may make you more vulnerable to PTSD. Your life experiences, including the amount and severity of trauma you’ve gone through since early childhood; having a high level of stress or other mental health problems, such as anxiety or depression; lacking a good support system of family and friends; and the way you deal with stress are all contributing factors. On the other hand, certain factors, such as increased social support, accurate information and supportive medical staff may lower the risk of developing PTSD.

Signs and Symptoms of PTSD

Symptoms of PTSD can arise suddenly, gradually, or come and go over time. Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something like the anniversary of your diagnosis or surgery, follow-up scans, or a certain image, sound or smell.

There is no right or wrong way to think, feel, or respond to cancer, but it’s important to know which symptoms and signs to look out for, so you can put strategies in place to deal with it. People react in different ways to traumatic events and you may experience some or all of the following reactions to a greater or lesser degree.

Re-living the traumatic event: Intense memories of the time around your diagnosis, flashbacks or nightmares, especially if accompanied by symptoms like racing heartbeat, shortness of breath, sweating, nausea, or uncontrollable shaking.
Increased arousal: Feeling hyper-alert ( the “fight” and “flight” reaction is always on even though there is no present danger at hand), on edge, irritable, easily startled or angered; mood swings, difficulty sleeping or concentrating.
Avoidance: Staying away from places that remind you of the traumatic time (for example, avoidance of follow-up appointments).

8 Key Strategies and Tips for Recovery

1. Acknowledge and accept your feelings

Don’t deny or ignore how you are feeling. Accepting your feelings is part of the healing process. Allow yourself to feel what you feel without judgment or guilt. Remember, there is no right or wrong way to think, feel, or respond to cancer. Be compassionate to yourself and patient with the pace of recovery. Talk through your fears with someone you trust. Try journaling, art or other creative outlets to help you work through your feelings.

2. Avoid obsessive thinking

While it’s important not to ignore your feelings, obsessively dwelling on them will slow the healing process down. One tip is to designate one or two 10-minute periods each day, time in which you can fully focus on your feelings. When intrusive thoughts come into your head during the day, write them down and “postpone” them to the period you’ve designated.

3. Reduce your stress

Make relaxation a part of your regular routine. Learn to meditate, practice yoga, take a walk in nature or do whatever it is that helps you relax and unwind. Relaxation is not a luxury – it is a necessary step in your recovery.

4. Take regular exercise

Regular exercise boosts serotonin, endorphins, and other feel-good brain chemicals. It’s one of the simplest and most effective ways to reduce stress and anxiety, helping you feel grounded in times of emotional stress.

5. Eat a healthy diet

A healthy body increases your ability to cope with stress from a trauma. Foods rich in certain omega-3 fats—such as salmon, walnuts, soybeans, and flaxseeds—can give your mood a boost. Avoid caffeine, alcohol and nicotine, which can worsen symptoms.

6. Get plenty of sleep

Poor sleep can make your trauma symptoms worse. Go to sleep and get up at the same time each day and aim for 7 to 9 hours of sleep each night.

7. Pay attention to triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken memories and feelings. Plan ahead for those times.

8. Connect with others

Following a trauma, you may want to withdraw from others, but isolation makes things worse. Research shows that support from others is an important part of your healing journey. Look to cancer support groups in your area or search online for groups. Talking to a psycho-oncologist or counsellor can also help.

When to Seek Help

It’s normal to feel anxious and unsettled after a traumatic event such as cancer. A diagnosis of cancer is distressing, the treatments and side effects are stressful, and the fear of recurrence is frightening. Most people find the intensity of their feelings will ease in a relatively short period of time, but for some the feelings will stick around or increase in intensity.

If painful thoughts and intrusive memories last longer than a month, and begin to cause problems in your personal relationships, employment, or other important areas of daily life, it’s important to seek a professional diagnosis of PTSD. The sooner PTSD is tackled, the easier it is to overcome. Unfortunately, many patients are not referred to psycho-oncology services to be assessed and treated, as high levels of sadness and anxiety are often perceived as ‘normal’ reactions to cancer diagnosis and treatment,^[4] so it may be up to you to advocate for your own assessment.

Types of treatment can include cognitive-behavioral therapy (adapting negative ways of thinking into more positive ones to help “re-frame” the traumatic experience); exposure therapy (to help you safely face the thing that you find frightening); medication (antidepressants/anti-anxiety drugs); and psychotherapy. When looking for a therapist, seek out mental health professionals who specialize in the treatment of trauma and PTSD.

You may also want to consider a form of treatment called EMDR (Eye Movement Desensitization and Reprocessing), which incorporates elements of cognitive-behavioral and exposure therapy with rhythmic eye movements designed to stimulate the information-processing system in the brain. The aim of the treatment is to help you process the traumatic events, and speed up recovery.

Conclusion

A trauma like cancer shatters our sense of security, making us feel powerless and vulnerable. Taking positive action towards recovery directly challenges this sense of helplessness and helps us regain a sense of control. It can take time to get over the trauma and feel safe again. But by seeking treatment, reaching out for support, and developing new coping skills you can heal and move on with your life.

^[1] The Diagnostic and Statistical Manual of Mental Disorders introduced malignant disease in its definition of PTSD in 1994.

^[2] The National Cancer Institute estimates that approximately 35% of patients experiencing cancer may suffer symptoms of PTSD.

^[3] No Half Measures. “The Violence of Cancer” https://nohalfmeasures.blog/2020/01/09/the-violence-of-cancer/

^[4] Leano, A., Korman, M. B., Goldberg, L., & Ellis, J. (2019). Are we missing PTSD in our patients with cancer? Part I. Canadian oncology nursing journal = Revue canadienne de nursing oncologique, 29(2), 141–146.

Marie Ennis-O'Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

hcsmmonitor.com/

Patient Access: Let’s Talk Health Data #patientchat Highlights

January 17, 2020/in Empowered Patient Chats, PEN Blog /by Kara Rayburn

Last week, we hosted an Empowered #patientchat on Patient Access: Let’s Talk Health Data. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Health Literacy is Key

“Data can help others learn!”

First, De-Indentify and Anonymize Data

Full Chat

For a list of all past #patientchat topics and transcripts, click here.

Is Treatment Adherence & Socioeconomic Disparities in Myeloma Creating Roadblocks to Best Care?

January 14, 2020/in Health Equity, MM Access and Affordability, MM Treatments and Clinical Trials, MM Videos AA, MM Videos TC, Multiple Myeloma, PEN Blog /by Kara Rayburn

A Diverse Health Hub #NewsyNugget

How Can Myeloma Patients Facing Disparities Be More Proactive in Their Care?

Dr. Victoria Vardell of Huntsman Cancer Institute discusses her study where key findings reveal underrepresented myeloma patient populations are less likely to receive a stem cell transplant (SCT). Vardell encourages patients to ask questions of their providers until they have a complete understanding so they can make the most informed decisions in their myeloma care. Watch the complete interview below.

Myeloma Treatment: Black patients less likely to receive SCT

ASH 2019 Study: Here

Speak Up: Patients should ask questions until they understand in order to make more informed treatment decisions

Does Treatment Adherence in Myeloma Impact Outcomes?

Myeloma expert Dr. Sikander Ailawadhi of Mayo Clinic breaks down the importance of treatment adherence and disease management in multiple myeloma in order to get the maximum benefit. In Dr. Ailawadhi’s own words: “In myeloma it has been shown again and again, if you use the right treatment for the right duration and you get a deep response, you are more likely to do better.” Watch the complete interview below.

Myeloma Treatment: staying on regimen long enough for deepest response is important

Treatment Adherence: a known issue in multiple myeloma and many cancers

Treatment Duration: staying on the right treatment for full duration coupled with deep response is key

Diverse Health Hub and the Patient Empowerment Network will partner to produce ongoing educational programs in 2020.

Let’s Start Healthy Habits to Reduce Your Cancer Risk

January 13, 2020/in PEN Blog /by Jessica Ann

Living a healthy lifestyle can be very helpful in reducing your risk of contracting various diseases, including heart diseases, osteoporosis, stroke, and diabetes. You might not believe it, but just by eating healthy, exercising regularly, and incorporating healthy eating habits, you can reduce the risk of one of the most dreadful diseases, cancer.

Nowadays, cancer has become quite common. Studies have shown that our lifestyle choices play a vital role in reducing your risk for this dreadful disease. Here are some simple tips that can be very helpful in cancer risk reduction.

Cancer Risk Reduction:

1. Maintain a Healthy Weight

We all understand the importance of maintaining a healthy weight. Still, many of us fail to maintain our body weight. If you are overweight, the first and foremost thing that you need to do is avoid adding any more extra kilos. Once you start keeping a check on your weight, it would automatically help in improving your health. Once you achieve this goal, put some extra effort and try to reduce your weight by a few pounds.

Tips for weight loss:

Do regular exercise or indulge yourself in physical activity.
Focus more on eating fresh fruits and vegetables.
Avoid taking fried food, canned food, and sweetened aerated drinks

For faster results, you can even take phentermine. Phentermine is found to be very useful in weight loss when accompanied by regular physical activity and a healthy diet. The best part of this supplement is the availability of “online phentermine prescription”

2. Don’t use tobacco

We all are well aware of the ill-effects of smoking. Smoking may result in various kinds of cancer like lung cancer, bladder cancer, cervix cancer, mouth cancer, pancreas cancer, larynx cancer, kidney, and bladder cancer. It’s not only active smokers that have higher chances of getting cancer. Passive smokers, too, have higher chances of getting cancer of lungs.

Hence, avoiding tobacco products or quitting smoking completely is very important if you want to reduce your risk of cancer. Quitting such addictions is not easy. But with determination, strong will power, and support of your family and loved ones, you will be able to quit it. If you want, you can seek help from professionals.

3. Protect yourself from the sun

We all know the importance of sunlight for sustaining life on earth. But, too much exposure to the sunlight may cause skin cancer. Tips to protect yourself from skin cancer caused due to sunlight:

Sun rays are strongest between morning 10 to evening 4. So avoid going out at this time of the day. Try to keep yourself in the shade when you are outside. Wearing hats, glares, and applying sunscreen lotion can be very helpful. Avoid using sun lamps and tanning beds.

4. Cancers that should be tested for regularly:

Going for regular check-ups is very important if you want to reduce your risk of cancer. Numerous tests help in detecting cancer at an early stage. Early the stage of detection higher is the chances of survival. In the case of breast and cervical cancer, women are recommended to go for cancer screening tests at an interval of six months. These simple screening could save thousands of women’s lives every year.

Cancers for which screening test should be taken frequently:

Breast cancer
Cervical cancer
Lung cancer

5. Avoid alcohol and if you take it, take it in moderation

Drinking alcohol increases the chances of getting cancer. Taking a drink or two occasionally might not be that harmful, but people who drink regularly that too in quite large quantities should try to overcome this addiction. If you want to quit drinking, you can start by avoiding parties and gatherings which are centered around alcohol. Try taking non-alcoholic drinks at parties. If needed, consult a health-care professional. Avoiding alcohol would not only save your liver but would also reduce the chances of getting liver cancer.

6. Avoid risky behaviors

Another essential health tip that would help you in reducing your risk of cancer is to avoid getting indulge in dangerous habits.

Practice safe sex:

Sexually transmitted diseases are found to be a major cause for various types of cancer, including cancer of lung, anus, and liver. Always follow healthy sexual habits. Try to have a monogamous relationship. Whenever possible, talk to your kids about the importance of safe sex. If possible, get your kids vaccinated against HPV at the right age.

Avoid sharing needles:

Sharing needles is another reason for the transmission of HIV. Besides this, sharing needles with a person having Hepatitis C and Hepatitis B would result in the transfer of these diseases, which may further increase the chances of having liver cancer. If you are looking forward to getting rid of drug addiction, taking help from a professional could be very beneficial.

Cancer is a very dangerous disease. It not only affects the patient, but it hampers the life of the people surrounding who are connected with the patient. If, by following some healthy habits, we can reduce the risk of these diseases, believe me, it is worth every effort. Eat healthily and live a healthy lifestyle and reduce your risk of the health monster named Cancer from entering into your life.

Jessica Ann

Jessica Ann has written many blogs across the spectrum, but specializes mainly in weight loss and dieting. With several years in the field, Jessica has been helping people get healthy and is dedicated to providing information for those who need it.

10 Body Signals Warning Health Problems

January 10, 2020/in PEN Blog /by Mariam N.

Most often, we don’t worry about our health until we start to experience severe symptoms. Things like headaches, stomach aches, and fatigue have become too common that many people think they’re just normal. Well, most of the time they are. And even the healthiest individuals can suffer from occasional discomfort and pain.

However, we should always be aware of what our body is trying to tell us.

Below are 10 ways our body signals that we should be more concerned with our health:

Unexplained Weight Loss

Drastic weight loss is something to be worried about, especially if you haven’t changed anything in your diet. Most often, it indicates an underlying condition.

Health problems associated with unintentional weight loss are overactive thyroid, rheumatoid arthritis, diabetes, inflammatory bowel disease, chronic obstructive pulmonary disease (COPD), depression, endocarditis, tuberculosis, and cancer. As you can see, all these are chronic illnesses that require immediate and proper treatment. If you’ve lost more than 10 pounds without exercise or diet changes, it’s time to check in with your doctor.

Stomach Pain

You can have stomach pain for many reasons. Indigestion, allergies, or some bacterial infection are among the most common causes of abdominal pain. These symptoms can be addressed by taking either prescription or over-the-counter medications. And more importantly, by practicing proper hygiene like washing hands regularly or sanitizing surfaces with disinfecting wipes before use.

However, in some cases, stomach pain signals something more serious, such as a heart attack. Other symptoms to watch out for are nausea and heartburn. Meanwhile, “crampy” abdominal pain that is accompanied by bloating and diarrhea may signal irritable bowel syndrome (IBS).

Chest Discomfort

Chest pain is a major red flag that requires immediate medical attention. It’s a common symptom of a heart attack but it could also be caused by pancreatitis, pneumonia, panic attack, and many more health problems.

If you or someone you know suffers from chest pain along with nausea, shortness of breath, pain or numbness, lightheadedness or dizziness, sudden weakness, flushing or a cold sweat, call 911 immediately.

Skin Problems

You can have a quick assessment of your overall health just by looking at your skin.

Being the largest organ in the human body, the skin can tell a lot of things about our health. For instance, a skin rash that is accompanied by fever, joint pain, or muscle pain could indicate an internal problem or an infection. Yellowing of the skin could suggest liver failure while darkening of the skin, particularly on skin folds, could be a sign of hormonal disease.

Other skin problems that signal a need to check in with your doctor are:

Wrinkles

It’s common for older adults to have these. But deep forehead wrinkles could point to atherosclerosis which is the hardening of arteries – a risk factor for heart disease.

Breakouts

Acne is a common skin problem that can happen even in healthy individuals. But how do you know that it’s more than acne? If you haven’t had acne for a long time and you suddenly experience breakouts, it’s best to consult your doctor. Sometimes, it could indicate Polycystic Ovarian Syndrome (PCOS) or hormonal disorders.

Dryness

Dry and itchy skin could be a sign of a hormonal problem, such as an overactive thyroid. Meanwhile, people with autoimmune disease may suffer from swelling and hardening of the skin.

Weakness in the Arms and Legs

This symptom is due to loss of muscle strength, which can be caused by different health problems. Weakness, which also comes in the form of weariness, tiredness, lack of energy, or fatigue could be a sign of underlying illnesses like congenital myopathies, electrolyte imbalances, malnutrition, malignant tumors, nerve impingement.

Fluctuation in Body Temperature

The normal body temperature is 98.6°F (37°C) ± 1°. It’s common to go past this reading when you have a fever. Also, minor fluctuations are normal and can be attributed to environmental factors. However, excessive fluctuations in body temperature could signal more serious conditions, such as hypothyroidism, adrenal fatigue, septicemia (a type of bacterial infection), and altered insulin activity.

Sleep Issues

Common conditions associated with sleep problems are heart failure, musculoskeletal disorders, kidney disease, and thyroid disease. Insomnia is also a common symptom of mental health disorders like general anxiety, phobias and panic attacks, bipolar disorder, depression, and schizophrenia.

Moreover, certain brain and nerve disorders like dementia and Parkinson’s disease can all cause sleeplessness.

Bathroom Problems

People with type 2 diabetes have bodies that are less efficient at breaking down food into sugar. As a defense mechanism, the body will try to eliminate the sugar by flushing it out into the urine. If you experience more frequent trips to the bathroom (and feel thirsty more often), consider undergoing a blood test to know your average blood glucose level. The sooner diabetes is diagnosed, the easier it is to reverse through proper lifestyle changes.

Chapped Lips

If you can’t live without applying lip balm, it’s your body’s way of telling you that something is wrong. Dry, chapped lips are a common cause of vitamin deficiency. Consult your doctor for some lab tests and switch to a more balanced diet to make sure you’re getting the nutrients your body needs.

Cloudy Mind

Do you feel ‘lost’ lately? Are you unable to solve simple problems or formulate a potent thought? Cognitive and physical health are intertwined. Just as cognitive problems can result in some physical symptoms, physical illness can also affect our cognitive abilities. Obesity, for example, can significantly impact one’s ability to think and reason.

Chronic health problems usually start with minor symptoms. It’s best to consult your physician for any of your health concerns.

Mariam N.

Mariam N. is a cleaning expert working with Sono Supplies. She has been interested in health and cleaning issues since she was young and wants to share her knowledge and experience with others who are not indifferent to cleanup. Mariam is deeply convinced that house cleaning is a critical part of hygiene. On a regular basis, she delivers new cleaning expert advice on how to treat products, tools, different items, which sometimes include medical instruments and equipment as well.

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

January 9, 2020/in Patient Stories, PEN Blog /by Marcia Mowbray Evans

Cancer is a stealthy assailant. Symptoms can be nonexistent or masquerade as some other ailment. When a medical professional utters the “C” word, the shock can be intense.

“I had no idea,” said Lindsay Hutchings of the softball-sized tumor that had been growing in her chest behind her breastbone. “I just knew I didn’t feel right.”

Lindsay was 34 at the time of her diagnosis. A mother of two young children, she never suspected cancer when she started feeling unwell. It was October. Time for picking Halloween costumes and the season when colds spread like wildfire through schools. A mom with young kids feeling fatigued and achy was nothing to be alarmed about.

Lindsay went to a walk-in clinic. When she didn’t improve, she went to her primary care doctor. She was given antibiotics. She was tested for the flu and then mono. Allergies were blamed and antihistamines suggested. Every week she was back in either the walk-in clinic or her primary care doctor’s office. Until one morning she woke up with a swollen neck and jaw. She knew this was not just a stubborn cold. She knew it wasn’t allergies.

“This time I was diagnosed with a sinus infection and referred to an Ear, Nose & Throat (ENT) physician. It was frustrating because I knew it wasn’t a sinus infection. I just didn’t have any idea what it could be.”

By this point, Lindsay’s husband, Jake, was going to appointments with her in hopes he might think of some question or detail she had missed. The ENT doctor examined Lindsay and listened to the path that had brought her and her husband to see him. He scoped Lindsay’s sinuses and found nothing.

Then he ordered a CAT scan and posed the possibility that Lindsay’s symptoms might not be related to a virus, allergy, or superbug. It might be cancer.

She was told to expect to wait three weeks for the results of her CAT scan because of the Christmas and New Year’s holidays, but the ENT called her after a few days with the results. He suspected lymphoma and referred her to an oncologist.

Lindsay started the New Year off by having two biopsies and a PET scan to confirm what the ENT had suspected. Four months after she first began feeling off, Lindsay had an answer. It was Stage IIB Hodgkin Lymphoma.

About Hodgkin Lymphoma

Cancers that start in white blood cells—also called lymphocytes–are categorized as lymphomas. The two main types of lymphomas are Non-Hodgkin Lymphoma and Hodgkin Lymphoma. Hodgkin Lymphoma (HL) can start in any lymphoid tissue in the body, such as the spleen, bone marrow, thymus, adenoids or tonsils. However, it most often starts in lymph nodes in the upper part of the body. Lymph nodes are bean-sized collections of lymphocytes and other immune system cells and are located throughout the body.

The causes and triggers for HL are unknown. Children and adults can develop Hodgkin Lymphoma. The average age at the time of diagnosis is 39. Although there is a higher rate of lymphomas in people with immune disorders, there is usually no known risk factor or cause for people diagnosed with HL.

There are four subtypes of classic HL and a rarer form of HL called nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). Treatment for the disease varies depending on what type the patient has, what stage the disease is in (I, II, III, or IV), and whether certain other symptoms are present (called B symptoms).

Cancer’s Emotional Side Effects: Shock, Optimism & Guilt

From the first mention of lymphoma by the ENT physician Lindsay began researching the disease online. She went to her first post-diagnosis oncology appointment armed with questions. Her oncologist patiently answered her questions and laid out a treatment plan he felt confident was the right one. He explained the survival rates were high and the rates of recurrence of HL were low. He assured Lindsay and Jake her prognosis was good.

“I was in shock. I had no idea what I was doing but he was responsive and reassuring. I would call or email my oncologist between appointments with questions and he always responded. It really helped me be positive and more confident,” Lindsay explained.

She needed that positive confidence to help with the first challenge that followed on the heels or her diagnosis. She and Jake had to sit down with their daughters—who were just four and seven—to explain their mommy had cancer and what that meant for their family.

Lindsay’s mother had passed away from lung cancer just two years prior. It was hard for seven-year-old Delaney to understand that this cancer was different from her grandmother’s. She became anxious after the effects of treatment began taking their toll that Lindsay might die just as her grandmother had.

Her younger daughter had a hard time distinguishing the kind of sick her mommy was from the everyday illnesses she and her friends might have.

And of course, once treatment began, there was a lot Lindsay couldn’t do for her children anymore. Some days she couldn’t get out of bed. Often Lindsay was unable to take them to school or help with homework. She stopped volunteering at their schools. A low point for their family came early in Lindsey’s treatment when Delaney came home from school sick Lindsay had to avoid being near her. Meanwhile, her husband worked from home as much as he could or took time off to care for Lindsay and their daughters.

Lindsay admits, “I still feel guilt for the burden I put on my family.”

The Cancer Journey Continues

Lindsay’s cancer was treated with chemotherapy and radiation. There were side effects, of course: exhaustion, chemobrain, nausea, constipation, blood clots. She had to get daily shots of blood thinners in the doctor’s office, which brought other risks and complications. There were moments of panic when it seemed the tumor had stopped responding and additional biopsies followed. But in the end, nearly a year after Lindsay first began experiencing symptoms, she was declared cancer-free.

There is a sense of victory from beating cancer. But like many other cancer survivors, Lindsay can’t say her cancer journey has truly concluded.

“At this point I am cancer-free, but I’m paranoid. It [the tumor] got so big without me knowing! I feel like some part of me will always worry.”

Ten to 30 percent of HL patients experience recurrence of the disease, with recurrence being lowest for those who are treated in the early stages of the disease. However, rates of developing a second cancer are higher for HL survivors than the general public regardless of whether the lymphoma returns.

Lindsay will have quarterly follow-up visits and two scans this year to screen for recurrence. As long as her results remain normal, she can scale back to annual screenings the following year. However, because she’s now at higher risks for other medical issues, she needs annual screenings by a cardiologist and pulmonologist. She will have annual mammograms now, instead of waiting until age 40 or 45. She has a roster of doctors at a time of life when many of her peers are in peak health.

The upside, Lindsay says, is that if any of her friends or family ever need a recommendation for a specialist in town, she has her list ready!

In addition to the health concerns she will carry, Lindsay also continues to deal with fatigue. Fortunately, while undergoing treatment Lindsay was able to connect with, Brittany, a two-time survivor of Hodgkin Lymphoma. Brittany used to teach at Delaney’s school and when she heard about Lindsay’s diagnosis, she tracked down her phone number from a friend because she knew from experience how helpful it is to hear perspective and encouragement from someone who has been there before.

“When I went to my appointments, I was usually the youngest person in the office by decades,” Lindsay explained. Talking to someone closer to her own age has helped.

In addition to finding a connection with a fellow survivor, Lindsay is also grateful for the support she and her family received from friends and family in their community. During her treatment, Jake and Lindsay’s family helped as they could. But there was also an outpouring of support from friends and acquaintances who helped with meals, gift cards, and donating to a GoFundMe account for the family.

“If I could give one piece of advice,” Lindsay says, “it would be to build your community. If we didn’t have friends and family to help get us through, I don’t know what we would’ve done. You can’t be involved in your community or volunteer or even go to church when you are sick. But I am so grateful that we were involved and active before the diagnosis.”

At a time when she saw few people and did very little outside of her home, she felt buoyed by the care and concern of from relationships she’d established before her illness. So, along with the guilt and worry she may carry forward from her cancer journey, she will also carry an abiding appreciation for the value of a supportive community.

Life for the Hutchings family is gradually settling back into normalcy, with family vacations and school schedules supplanting doctors’ appointments and treatments. Lindsay can begin to enjoy her new mantle of ‘cancer survivor’ with increasing confidence. But rather than consign the experience to something that “happened” to her, she is sharing what’s she learned from the experience. She would not claim to be an expert in cancer and its treatment options. But she does advocate for the power of building relationships and positive thinking. These are lessons that can help others whether they are confronting cancer or any other life-altering ordeal.

Marcia Mowbray Evans

Marcia Evans is a writer and communication manager with 20 years of experience in public affairs and advocacy. Her focus is on helping organizations create communication strategies that make meaningful connections with their followers. She writes in honor of her uncle, who lost his battle with small cell carcinoma in 2018.

A Year in Review: Looking Back on 2019 and Ahead to 2020 #patientchat Highlights

December 20, 2019/in Empowered Patient Chats, PEN Blog /by Kara Rayburn

Last week, we hosted an #patientchat on A Year in Review: Looking Back on 2019 and Ahead to 2020. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Patients Own Their Data

Collaboration Means Everyone

Find Something You Enjoy

Full Chat

Health Care and Social Media: Importance of Facing Their Challenges

December 18, 2019/in PEN Blog /by Mike Austin

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.

Mike Austin

Mike Austin is a marketing and creative content specialist at Adrack.com and has been working in the digital marketing industry since 2009. As a conversion-driven marketer, he is passionate about helping businesses expand their online visibility and reach their goals.

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

December 18, 2019/in MM Newly Diagnosed, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma, PEN Blog /by Kara Rayburn

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

December 16, 2019/in PEN Blog /by Melissa Bondy

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.

Melissa Bondy

Melissa Bondy is a content writer and bedding buff for The Slumber Yard. She is part of a team dedicated to bringing honest mattress reviews and helpful sleep tips to consumers. In her free time, Melissa enjoys studying poetry, kayaking on Lake Tahoe, drinking coffee, and training her puppy.

Questions Answered About digital sherpa®

December 10, 2019/in PEN Blog /by Kara Rayburn

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

December 2, 2019/in PEN Blog /by Brad Ormsby

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.

Brad Ormsby

Brad is the owner of the Freedom Genesis, a blog about yoga and meditation. He enjoys writing and sharing about yoga, meditation, wellness and improving your quality of life. For more articles like this one, check out freedomgenesis.com.

Understanding Clinical Trials: A Jargon Buster Guide

December 2, 2019/in Adrenal Cancer, Adrenal Cancer Blog TC, Adrenal Cancer Treatment & Clinical Trials, AML Blog TC, AML Treatments and Clinical Trials, Appendix Cancer, Appendix Cancer Blog TC, Appendix Cancer Treatment & Clinical Trials, BC Blog TC, BC Treatment & Clinical Trials, Bone Cancer, Bone Cancer Blog TC, Bone Cancer Treatment & Clinical Trials, Brain Cancer, Brain Cancer Blog TC, Brain Cancer Treatment & Clinical Trials, Care Partner Resources Blog, CLL Blog TC, CLL Treatments and Clinical Trials, Eye Cancer, Eye Cancer Blog TC, Eye Cancer Treatment & Clinical Trials, FL Blog TC, Follicular Lymphoma, General Blog TC, General Treatment and Clinical Trials, LC Blog TC, LC Treatments and Clinical Trials, Marie Ennis-O'Connor, MM Blog TC, MM Treatments and Clinical Trials, MPN Blog TC, MPN Treatments and Clinical Trials, NHL Blog TC, NHL Treatments and Clinical Trials, PC Blog TC, PC Treatments and Clinical Trials, PEN Blog, SC Blog TC, SC Treatment and Clinical Trials, Waldenstrom, Waldenstrom Blog TC /by Marie Ennis-O'Connor

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.