PEN Blog Archives

January 2021 Notable News

What do cancer cells and bears have in common? How is artificial intelligence changing cancer? How do ovarian cancer cells survive in hostile environments? Can CML patients stop taking their medication? Why are cancer death rates continuing to decline? What should cancer patients know about the Covid-19 vaccines? There are a lot of questions to answer this month. Fortunately, we have the answers.

COVID-19 Vaccine

Some of the most pressing questions cancer patients have are about the Covid-19 vaccines. Some of the answers can be found at curetoday.com, which has put together a list of some things you should know. There are currently two Covid-19 vaccines available in the United States. They were authorized by the Food and Drug Administration (FDA) in late 2020. The two vaccines made by Pfizer-BioNTech and Moderna both require two doses, and both have an over 90 percent efficacy rate after both doses are administered. Both vaccines trigger the immune system to react defensively to the SARS-CoV-2 virus without causing the virus. There are common side effects seen as a result of the vaccines that include tiredness, pain at the injection site, headache, muscle ache, and fever. The side effects can last for several days or a week. While cancer patients should discuss the vaccine options with their doctors, it’s important to note that getting the vaccine should not affect most cancer treatments. Find the complete comparison of the two vaccines, which includes an explanation of how each vaccine works and the common side effects specific to each vaccine, here. There is also a helpful and easy-to-read infographic.

Declining Cancer Death Rates

There’s no question that declining death rates are good news. As of 2018, cancer death rates are continuing to decline in the United States, reports abcnews.go.com. The rate has been falling since 1991, and from 2017 to 2018, it fell 2.4 percent. In the past five years, almost half of the decline in cancer deaths was attributed to lung cancer. With fewer people smoking, the rates of lung cancer illness and death have declined, and due to better treatments and diagnostics, people with lung cancer are living longer. While cancer remains the second leading cause of death, it’s encouraging that the death rates are continuing to decline. Learn more here.

CML News

A question CML patients could be asking their doctors is whether or not they can stop taking their medication. Some chronic myelogenous leukemia (CML) patients may not have to, reports cancer.gov. The tyrosine kinase inhibitors (TKIs) CML patients take to make the disease manageable are taken every day and they come with some disruptive side effects, which affect the quality of life for patients. However, a new clinical study shows that patients who were in remission for at least two years, and stopped using nilotinib, imatinib, and two other TKIs, had an improved quality of life, and about two thirds of the patients remained in remission three years after stopping treatment. Find more information about the study results and which patients could be eligible to stop taking their CML medications here.

Ovarian Cancer

Researchers have long been questioning how ovarian cancer cells survive in hostile environments, but now have an understanding of how ovarian cancer cells survive and grow in the fluid of the abdomen, which should be a hostile environment of low nutrients and oxygen, reports eurekalert.org. The study looked at the structures inside the cells during different stages of ovarian cancer and found that one of the structures, the mitochondria, changed shape and function in the peritoneal cavity, the space in the abdomen that contains the intestines, liver, and stomach, which made it possible for aggressive cancer cells to flourish. Knowing how the cells are able to survive and thrive in the abdomen could help develop better treatments for the disease that may prevent the spread of cells from the original tumor to the peritoneal cavity. When ovarian cancer cells spread through the peritoneal cavity, a patient’s survival rate is just 30 percent. Learn more about the findings here.

AI Being Used in Cancer Care

Some researchers are answering the question of how artificial intelligence will play a role in the future of treating cancer. A new telescope developed at Rice University could be a game changer for cancer surgeries, says texasmonthly.com. Using artificial intelligence, it can take a lot of the guess work out of analyzing tissue and could save valuable time during surgeries. Find out how here.

Artificial intelligence is also being used to develop a technique to diagnose prostate cancer, reports phys.org. The technique is almost 100 percent accurate and can diagnose prostate cancer from urine within 20 minutes. This new technique is less invasive and much more accurate than current prostate cancer testing. Learn more about the development of the new technique here.

Cell Hibernation

Finally, who isn’t asking what bears and cancer cells have in common? It’s hibernation, of course! Cancer cells can go into a type of hibernation as a means of surviving chemotherapy, reports scitechdaily.com. Research shows that cancer cells have the ability to become sluggish and enter a slow-dividing state of rest to protect themselves when threatened by chemotherapy or other targeted therapies. They hibernate, just like bears, until the threat is gone, and they can resume their normal state of growth. The information helps look at chemotherapy-resistant cancers and how to better treat them. The study also showed that cancer regrowth can be prevented when therapies target cancer cells in their slow-dividing state of rest. Learn more about hibernating cancer cells here.

Genetic Testing: How Could Results Impact Lung Cancer Care?

In this podcast, lung cancer experts Dr. Erin Schenk and Dr. Tejas Patil discuss the role of genetic testing results in lung cancer care—including treatment decisions—and share important advice for self-advocacy.

About the Guests:
Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here: https://www.cudoctors.com/Find_A_Doctor/Profile/24489.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here: https://www.cudoctors.com/Find_A_Doctor/Profile/27915.


Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Patient Profile: Bob Lawson

“I had a clinical trial in my hip pocket already because I had taken the extra steps. I think it saved my life and got me in the right place,” says empowered patient Bob Lawson who is currently participating in a clinical trial for his non-small cell lung cancer, which recurred a little over three years after his initial cancer diagnosis and treatment. While Bob is in the right place now, his cancer journey has not been an easy one, and he has had to be actively involved in his treatment to ensure the best possible outcome. “It’s so difficult to know what to do, it’s overwhelming. You have to do research on your own,” says Bob, who recommends the Patient Empowerment Network (PEN) website for patients looking for a place to start. “For patients seeking out advocacy, PEN has something that’s very important,” he says referring to the free, online resources provided by PEN. Bob especially likes the PEN-Powered Activity Guides, found here, and says they are powerful tools for patients to find hope and ways to benefit from the new technology and treatments available. His best advice, though, is to do what he’s done all along. “I would say ask questions. A lot of them. You want to ask the right questions and the right questions change,” he says. “If you don’t ask the questions, you’ll never know.”

When he was first diagnosed with lung cancer, Bob says he had no idea what to expect. “At that time, I didn’t know anything about anything,” he says, but he adds that he did know enough to ask questions, and by asking questions, he improved his treatment outcomes. He was diagnosed as the result of some testing that was done for a medical episode that ultimately turned out to be a transient ischemic attack (TIA), which is often referred to as a mini stroke. During the testing, an x-ray revealed a shadow on his left lung, and a fine needle biopsy confirmed that it was cancer.

Bob says when he talked to the surgeon at the hospital, he wasn’t comfortable with the treatment plan, which included a surgery where his ribs would be cracked. He asked the doctor if the invasive surgery was really the only option, and that question got him referred for a second opinion. “Most doctors encourage a second opinion,” he says. “You have to become educated very quickly about what you’re dealing with.”

Bob says the second doctor won his confidence almost immediately. He recommended a minimally invasive lobectomy of the upper left lung and, although his cancer was stage 1B and did not require chemotherapy, the doctor strongly recommended it. The surgery was successful as was his round of chemotherapy. “I did the entire regimen, rang the bell on my way out the door, and they said I was cancer free,” says Bob. That was seven years ago.

Bob Lawson

A few years after being declared cancer free, Bob decided it was time to address the TIA he’d experienced. The cause of the TIA had never been discovered so Bob had a scan of his carotid artery. His artery was clear, but the technologist noticed something on his thyroid. That something turned out to be cancer. It was a nodule classified as malignant neoplasm, and it was unrelated to his lung cancer. Fortunately, the nodule was completely encapsulated in the tissue and was removed. However, the treatment protocol at the time was to completely remove the thyroid. “I didn’t like the sound of that,” says Bob who once again asked a question. “What would you do,” he asked his doctor. Later that night, Bob says his doctor called him. Because of Bob’s question the surgeon dug a little deeper and spoke with the pathologist who said he wouldn’t remove the thyroid. Bob kept his thyroid and, with the assistance of minimal medication, he’s had no problems with his thyroid since. He says five months after he turned down surgery to remove his thyroid, the nodule he had was declassified as cancer.

However, just ten months after the issue with his thyroid, Bob lost his voice and noticed he was coughing a lot. At the same time, he was experiencing significant pain in his right hip. He attributed the hip pain to not getting any younger and the natural consequences from old injuries, but it bothered him enough that he went in for some tests. The tests revealed a little bit of discoloration on the bone that the doctor said he normally wouldn’t worry about, but since Bob had a history of cancer, he wanted to do a scan of the area. “The scan lit up like a Christmas tree,” says Bob. His lung cancer was back, and it had spread to his right femur and hip. Bob had successful radiation treatment on his hip, but he couldn’t have radiation on the tumor in his lung because of its location near the vagus nerve and vital organs. The tumor location also meant surgery was not an option, so his doctor recommended a targeted monoclonal antibody immunotherapy.

Once again, Bob sought a second opinion. “What I had done when they discovered the hip tumor was called the insurance company and got permission to get a second opinion,” he explains. He actually got the opinion of two other oncologists who both agreed with his doctor’s recommended treatment course, but the second doctor, with Johns Hopkins Medicine, went a step further and said, if the treatment stopped working, he had a clinical trial that Bob might want to consider. So, Bob took home the paperwork for the trial and began immunotherapy treatment with his doctor.

It was a relatively new therapy at the time, and, for a while, it worked to reduce the size of the tumor in his lung. Then, he had two months in a row where his scans showed disease progression, and he was taken off the therapy and given a prognosis of 10 to 18 months to live. He asked his doctor what they were going to do, and his doctor said he could do chemotherapy again. “That was the last thing on earth I wanted to do,” says Bob, who asked his doctor about a clinical trial. The doctor agreed that a trial was probably the best course of action for Bob, but he didn’t have any to recommend.

That’s when Bob pulled the Johns Hopkins clinical trial out of his hip pocket. He’s been having infusions every month for the past 17 months, and he’s really happy with the results. “The tumor is steady or reducing all the time, which is great, obviously,” he says.

Bob remains vigilant about his healthcare and continues to pay attention to what other treatments might be available to him should this trial stop working. He continues to research other trials, sometimes reviewing as many as 20 in a week. “Most people just trust the doctor, and that’s the wrong approach,” he says. “Get a second, third, and fourth opinion, and have something ready to go in case what you’re doing doesn’t work.” Bob has learned that approach through experience, but he hopes his story will help make it easier for others. “How can I best support someone who’s like me,” he often asks himself. “I think that’s something I’d like to do,” he says.


Patients who want to ask questions like Bob did, but aren’t sure what the right questions are, can start here with the PEN downloadable office visit planners available for free at powerfulpatients.org.

Uncovering the Hidden Health Benefits of Garlic

Uncovering the Hidden Health Benefits of Garlic from Patient Empowerment Network on Vimeo.

Recipe: Hidden Garlic Broccoli and Beef

• 1 1/4 lbs flank steak sliced thin
• 1 TBS vegetable oil
• 2 cups broccoli florets
• 2 TBS minced fresh ginger
• 1/4 cup oyster sauce
• 1/4 cup beef broth or water
• 1 TBS brown sugar
• 2 tsp toasted sesame oil
• 1 tsp soy sauce
• 1 tsp cornstarch
• Salt and pepper to taste

History of Garlic

Though the exact origin of garlic is unknown, historians generally agree that it came from Middle Asia. It most likely means that garlic came from West China around the region of the Tien Shen Mountains to Kazakhstan and Kyrgyzstan. Ancient Sumerians from the time of 2600 to 2100 BC used garlic for its healing properties, and some believe that they brought the bulb to China. There’s also evidence that garlic was used as a health remedy for its heating and stimulating properties in China as far back as 2700 BC. In the Chinese principles of yin and yang (or that in good there is bad and in bad there is good), garlic falls into the yang category. Also known as the stinking rose, garlic was used in numerous other ancient civilizations including Indian, Egyptian, Tibetan, Greek, Roman, and others.

Medical Properties of Garlic

Has anyone ever told you to eat some garlic when you’re fighting off a cold? Well, it turns out they’re not wrong in giving you that advice after all. Garlic contains the important substances of sulphur and quercetin that help the body in numerous and unexpected ways. It’s been shown to work as an antibiotic, antioxidant, antibacterial, antifungal, and antihistamine medical agent. And what do all those things mean exactly? They translate to fighting a variety of ailments like the common cold, fungal infections, allergies, and cancer among other things.

Surprising Facts About Garlic

Did you think that was all? No, garlic is touted as a cure-all by many, and the benefits of garlic don’t stop there. Along with these benefits, garlic has also been shown to improve cardiovascular health by turning sulphur into hydrogen sulfide that expands blood vessels and improves the regulation of blood pressure. And if you have skin and hair troubles, garlic can even improve the appearance of your skin and hair. Simply slice a clove of raw garlic and rub it over the affected area of your skin, and the antibacterial properties of garlic help to clear up pimples. Garlic can also help kill bacteria on food like E.coli and salmonella that cause food poisoning, and it is even effective against infections that are resistant to antibiotics like MRSA.


Sources:

ncbi.nlm.nih.gov/pmc/articles/PMC3249897/
health.clevelandclinic.org/6-surprising-ways-garlic-boosts-your-health/
nm.org/healthbeat/healthy-tips/nutrition/health-benefits-of-garlic


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Receive Personalized Support Through PEN’s New Text-Line

Now, you can receive personalized support from our Network Managers by texting EMPOWER to +1-833-213-6657. Each of our Network Managers is a compassionate volunteer who can offer you their first-hand experience with specific cancer types. Whether you’re a cancer patient, or caring for someone who is, PEN’s Network Managers will be here for you at every step of your journey. 

To introduce how you can benefit from the PEN Text-Line, we’ve shared the following FAQs, but please let us know if you have feedback or further questions.

What number do I text?

+1-833-213-6657

Who will receive and respond to my text messages?

Your text will be received by PEN’s Network Manager Coordinator, who will then connect you to the Network Manager best-suited to support your needs. Additional Network Managers may also respond, as we know it can be helpful to receive more than one perspective.

Your initial message to the PEN Text-Line will receive an auto-response, but please know that it will soon be read and personally responded to by a member of the PEN team! 

What types of support can I receive from the Network Managers?

Through their personal experiences with cancer, PEN’s Network Managers are here to offer you community and connection. You can ask us anything! For example:

  • Cancer-focused guidance
  • Online and in-person support groups for patients or care partners
  • Financing options for cancer treatment
  • Identifying clinical trials
  • Recommended webinars
  • What questions to ask your healthcare team
  • Methods for managing stress, and for living in the moment
  • How to share the news of your diagnosis with loved ones and colleagues

We also encourage you to reach out even if you don’t have a specific question; you are not in this alone—there will always be someone from the Patient Empowerment Network team here to listen and offer encouragement. 

Are there other reasons to engage with PEN’s Text-Line?

Definitely! 

Send us your suggestions for our online content and services. For example: 

  • What topics would you like us to cover more, or less often?
  • Do you have suggestions for PEN’s future Empowered #PatientChats
  • Would you like to contribute articles to the PEN blog
  • Do you want to inspire others by sharing the story of your own path to patient empowerment?

Be the first to receive the latest PEN news by texting the word EMPOWER to the Text-Line. You will then be prompted to choose what notifications you would like to subscribe to. For example:

  • Upcoming PEN webinars and other events
  • New content releases from the Network Managers
  • Wellness boosts, such as notes of encouragement and health tips

Is my interaction with the PEN Network Managers Text-Line HIPAA compliant?

Your messages will always be kept in strict confidence, however the PEN Text-Line is not HIPAA compliant. Therefore, we encourage you to use discretion when discussing specific information such as your or other individuals’ names, diagnosis details, etc. Please note that any advice provided by the PEN Network Managers is not medical advice. We also recommend patients refrain from giving other patients medical advice.

Who can I contact for more information or to provide feedback?

Feel free to email Nykema Mpama at kema@powerfulpatients.org.

Message and data rates may apply 

 

Patient Profile: Alexis Chase, PhD

Patient Profile

Alexis Chase, PhD

“To be empowered you have to be open, to want to do it, and to accept where you are.” – Dr. Alexis Chase, An MPN Empowered Patient

Dr. Alexis Chase has had a pretty interesting life, but she doesn’t think that makes her unique. She says she thinks all women have interesting lives. Born congenitally blind in her right eye she was given the name Alexis Elizabeth Lucia Chase. “I’m very proud of my name,” she says explaining the origin. Alexis was the name of a doll her mother had as a girl, and it means protector of mankind. Elizabeth is a family name, and Lucia represents Saint Lucia, the patron saint of the blind. Her mother was a nurse and her father, who was the first to recognize she had a vision issue, had a degree in biology. She was very close with her parents who instilled in her a strong foundation in her Roman Catholic faith. While she was born in Connecticut, she spent most of her adult life in Georgia as a divorced mother who built a successful 27-year career in the prison corrections system. She worked her way up to warden and earned two PhDs, one in religious counseling and one in criminal justice and corrections. After her retirement she became an international advocate and consultant of gender and women’s rights issues that include vocational training, post-incarceration reintegration, and female prisoners with children. She has travelled as far as Afghanistan in her advocacy work, and she is also the proud nana to a cat named Nathan Edgar Chase. She’s done a lot, and much of what she’s accomplished, she’s done while living with cancer.

The first time she was diagnosed with cancer was in 1976. She was in the first trimester of a high-risk pregnancy when she was diagnosed with ovarian cancer. Her doctors thought it would be best to terminate the pregnancy, but she refused. She was determined to have the baby, her daughter, and as soon as she was born, Dr. Chase began treatment for her cancer, opting for an experimental drug that she says saved her life.

At the time, her parents, her desire to live for her daughter, and her strong faith gave her the support she needed. “They were right there with me,” she says of her parents who she is grateful to for her faith. “It’s my great equalizer. My rope of hope,” she says and adds that she can pull on her faith anytime and in any place. “You’ve got to believe in something greater than yourself because definitely we’re not it,” she says.

She’s had no recurrence of the ovarian cancer, but in 1996, during a regular wellness checkup, she was diagnosed with myeloproliferative neoplasms (MPNs), a group of blood cancers that affect the function of bone marrow and can cause a number of complications. In Dr. Chase’s case her MPNs includes iron deficiency, anemia, diseases of the blood and blood forming organs, and hypothyroidism. MPNs are chronic conditions that can transform into another blood cancer and can affect people at any age but are more common in older adults. MPNs are also progressive. Dr. Chase had no symptoms for the first four years after her diagnosis, and wondered if she’d been misdiagnosed, but in 2000 she says she just started to feel like something wasn’t right and that’s when her blood counts started to change. She began taking medication, but in 2020 it stopped working and her cancer team worked to find other medications and therapies to treat her.

MPNs are rare and she doesn’t know anyone else with the same diagnosis, but she says she has an incredible support network through her daughter, her friends that are like family, her church, and her cancer team. “They take great care of me,” she says, but she also takes great care of herself. In fact, she’s very meticulous about taking care of herself. She carefully takes her medications, and she makes herself a priority. She focuses a lot on her mental health and she stresses the importance of mental health for all cancer patients. She says she finds three ways to laugh at herself every day and she chooses six words every day that represent how she’s doing and to help her feel empowered. A recent example, “I feel surrounded by grace today”. Also, part of her self-care is taking the time to listen to calming and soothing sounds and inspirational messages and quotes.

She says it’s a blessing to have the cancer she has because she is able to handle it and it makes her take time to smell the roses. She’s handled it so well that during her career as a prison warden she never let on that she was sick. She managed to schedule her appointments around her work so no one would know. She didn’t want her illness to affect her career.

Always an empowered patient, she’s been known to walk out of a doctor’s office when a situation doesn’t feel right. “It’s important for people to feel like they are being heard and more importantly that they are being listened to.” She says “It’s also important to know what’s going on with your care. You know your body better than anybody.” Dr. Chase likes the Patient Empowerment Network (PEN) because of the resources it provides to help others feel empowered in their own care. “I found PEN and love that I can access it anytime,” she says. She feels it’s important for patients to take charge of their own care plans. “To be empowered you have to be open, to want to do it, and to accept where you are,” she says. Her recommendation to other patients is to read, and comprehend, everything they can about their illness. “If you don’t understand it, you need to have someone explain it to you,” she says and also recommends keeping a journal. “We have to have something tangible. We can’t remember everything.”

While she continues to accomplish a great deal while living with cancer, it’s not always easy. “The chronic cancer fatigue, it will get me. I fight it because I feel like once I give in it would overtake me,” she says. She does experience shortness of breath and plans her days around her energy level. “It slows me down, but I don’t let it stop me. I push myself because I know the next day or the next day I won’t be able to.” Along with continuing her consulting and advocacy work, Dr. Chase loves to travel and hopes to go to Turkey to see the Virgin Mary’s house. “You never know what God has laid out for you,” she says. “I’m still here. I’ve been symptomatic for 20 years and I’m still here.”


Read more patient stories here.

#patientchat Highlights: The Engaged Patient: Utilizing Digital Health

Last week we hosted a “The Engaged Patient: Utilizing Digital Health” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Shared Decision Making is Key

Advocate for Access and Equity

The Patient is a Respected Member of their Care Team


Full Transcript

Bright Hope on the Horizon – Part Four

See the beginning of Sajjad’s story in Part One, Part Two, and Part Three.


Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

In February 2014, two groups of scientists in New York City presented the early data of what can only be described as a phenomenal study with phenomenal results.

In a study using sixteen adult leukemia patients, scientists took samples of each patient’s T-cells and samples of his or her cancer cells. Under laboratory conditions, they trained those T-cells to recognize certain specific traits of that patient’s leukemia cell and then attack to kill it—it was like teaching a drug-sniffing dog to find the cache of heroin. These were called “smart T-cells.”

The next step was crucial, dangerous, and amazingly clever.

The researchers cloned millions of these specially trained T-cells and then went back to the patients and gave them very toxic chemicals that destroyed their “dumb” T-cells—those that were still fooled by the cancer’s camouflaging. They then replaced them with the trained smart T-cells. 

Once infused, the trained T-cells set out like an elite commando force equipped with exact GPS coordinates and hunted down and killed the cancer cells.

The success rate of achieving a complete response was an astounding 88 percent!

The incredible success of that small study, and several others since, has sparked an explosion of interest and further studies by various medical centers and pharmaceutical companies worldwide, who are spending billions of dollars in similar research. These investments are sure to be returned many times over, of course. But it can only mean good things for cancer patients. Costs for adoptive T-cell transfer treatments now are prohibitive for individuals—upwards of $500,000 for one patient, which is totally unacceptable. But that will change in the near future.

And there were complications, of course, with ominous results for one patient. 

In one unfortunate patient, a man from New York City with Her2-positive colorectal cancer, doctors infused T-cells trained to seek out and kill Her2-positive cancer cells. The man went into respiratory arrest within fifteen minutes. His health continued to deteriorate over the next few days despite the best efforts of the medical experts. He died after four days when his lungs shut down completely. There was nothing they could do to save the patient.

An autopsy showed that the patient’s normal lung cells had traces of Her2. The “smart” T-cells had been attacking and killing the healthy lung tissues as well as the cancer.

These trained T-cells are like heat-seeking missiles. They will attack and kill as they have been trained to do—and there was no reversing this once they were set loose.

You lose any control over the missile once it is fired.

This unfortunate incident led to a temporary halt of all further experimentation in this area. The focus was shifted to try to find a way to control these smart T-cells after they were infused into the patient’s bloodstream. How do you stop these commandos if they go rogue? How do you destroy a wayward missile? 

A few different strategies have been developed to accomplish that. One of those is the development of what is called a “suicide gene”—and it is truly the stuff of science fiction. Now scientists can tag T-cells with this suicide gene. If they go haywire and start attacking normal cells, doctors can prompt them to destroy themselves, or commit suicide.

The first couple of the CAR-T Cell Therapies, as these are called, have already received an FDA approval and the newer & better ones are sure to follow.

It is nothing short of amazing. Today we are on the cusp of advances that were not even imagined just a few years ago. Now when someone disconsolately calls me for advice and tells me they have been given no more than two years to live, I tell them not to panic or lose hope. I emphasized that two years is an eternity when it comes to medical advances, the way science is exploding in its efforts to cure cancer.

“Take heart,” I tell them. “Every year, new drugs and modalities are being developed. In two or three years, you have no idea what new miracle drug may come out.” I suggest optimism and advise they focus on positive thoughts, avoid negativity and depression, refuse to panic, eat healthily, remain physically active, meditate, enjoy every little pleasure in life, and, as much as possible, avoid stress. Most of all, do not give up hope.

All that will boost your immune system and will go a long way toward beating this dangerous enemy.

Two years—or even a year—given the ways that science is moving ahead, is a terrific pronouncement. This, in no way, is meant to paint an unrealistically rosy picture. Cancer has been and continues to be an extremely deadly disease. Even though the death rate from cancer has gradually and steadily declined since 1990, there are still far too many patients dying from it. In the United States, cancer continues to be the second biggest cause of death, behind heart disease only. Over half a million patients die from cancer each year in the United States alone. More than eight million lives are lost worldwide.

I am fully aware of all that. Yet, there is no doubt that we are entering a much better and far more hopeful era. At no other time in the history of medicine have we been this tantalizingly close to achieving a major victory against cancer, a game-changing victory that could, possibly forever, change the cancer outlook. 

I believe this with all my heart.

MPN Patient and Caregiver Explain How Colors Impact Their Lives

MPN Patient and Caregiver Explain How Colors Impact Their Lives from Patient Empowerment Network on Vimeo.

Are you conscious of the colors in your home? MPN Network Manager Summer and her care partner Jeff have their respective homes filled with colors that bring them joy. They prioritize mindfulness and positivity as part of Summer’s healthcare journey.

Jeff challenges you to surround yourself with colors that put your mind and body at ease.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Myeloma Treatment Decisions: Insist on Essential Testing

In this podcast, myeloma expert Dr. Amrita Krishnan explains the essential testing that should follow a diagnosis, how the results could impact myeloma therapy, and discusses new and emerging treatments.

Dr. Amrita Krishnan is Director of the Judy and Bernard Briskin Center for Multiple Myeloma Research at City of Hope in Duarte, CA. Learn more about Dr. Krishnan: https://www.cityofhope.org/people/krishnan-amrita.


Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Patient Profile: Liz Sarris

Patient Profile

Liz Sarris

Liz Sarris knows the world of healthcare pretty well. Not only has she had a 40-year career as a nurse, but she’s also had a host of chronic illnesses, which means lots and lots of doctor appointments. As if that weren’t enough, Liz has also been diagnosed with cancer three times – with three different and unrelated cancers! “I’m being watched closely from many angles,” she says. “But the great news is I live to tell the story.”

Her cancer story began in 1988. Her primary care doctor found some unexplained blood in her urine and, unable to dismiss it, referred Liz to a urologist. A scope of her bladder revealed a tumor that was about the size of a pea. Fortunately, it was non-invasive, had not invaded the bladder lining, and was removed. No treatment was required, but she did have to be monitored regularly. For the first two years she was checked every three months, then every six months for the next several years. After that she graduated to annual checkups that continue to this day.

Fast forward to 2014 when she was diagnosed with chronic lymphocytic leukemia (CLL). This time, Liz was seeing an endocrinologist for a thyroid issue when the doctor noticed some abnormalities in her blood work. Further testing led to her CLL diagnosis, which, so far, hasn’t required any medications or treatments other than quarterly check ins. “It is a watchful waiting situation,” she explains.

Then in 2017 things took a turn. Liz’s gastroenterologist, who she sees regularly for two chronic gastrointestinal issues, said that there was a spot on her scans that needed to be checked out. It was a spot they had been watching, but now it was starting to change. The spot turned out to be a neuroendocrine tumor of her pancreas. It was a slow growing tumor and not aggressive, but it was malignant and had to be removed, and there was a chance that it was a lot worse than the doctor thought it was. It meant major surgery that was not at all routine, and because her tumor was in the middle of her pancreas, it was possible that she might lose part of her pancreas and her spleen. Liz wanted the best possible outcome from the surgery, which meant keeping as much of her pancreas as possible, so she started to search for a surgeon. “I wanted to see the right people who were specific to this type of cancer and who do neuroendocrine tumors every day,” she says. “If he’s going to poke around my pancreas, I want to know he’s doing 10, 12, 15 of these surgeries a month.”

First, Liz narrowed her search geographically. She lives in an area that is relatively close to several high-quality medical facilities, and she knew that she didn’t want to be too far away from her family and support system after such a big surgery. Then she started asking questions and doing research. “Because I had engaged myself with good local physicians, I reached out to them for referrals,” she says. She asked her doctors who they would send their wives to and who they themselves would go to. Then she started calling surgeons and made appointments to interview three of them. When she had it narrowed to the surgeon she felt best about, she visited him a second time. “I don’t know if it’s the nurse in me or just who I am,” says Liz about her research process. She says that the doctor she chose made her feel confident, and his approach was more hopeful because he was willing to perform the surgery using a rare technique that meant he would remove the tumor from the center and then reconnect the two sides of her pancreas. Her doctor was upfront with her about all the possible risks and made sure she knew that his plan could change if the surgery revealed a different situation than they were expecting. “Do whatever you have to do to give me the best chance at a healthy life,” she told him and added that she hired him to do the job he would do for his mother, his sister, or his daughter and that she didn’t want to see him again in five years.

Her eight-hour surgery was a success. The tumor was removed, and her pancreas was put back together in what Liz describes as a “creative way.” After her surgery she didn’t require any treatment other than regular monitoring, and so far, all her scans have been good. She credits her successful outcomes in part to having a supportive family, good insurance, and good doctors, but she didn’t have good doctors by accident. She’s very proactive in her own healthcare. “I had the recipe for a good situation, but that doesn’t mean I didn’t have to do the research,” she says.

Her background as a nurse helped her know what questions to ask, but she wants others to know they can ask the same questions and can be just as informed. “You can navigate your care more than you think you can,” she says. “You really have to utilize your resources.” Liz says resources like the Patient Empowerment Network, where patients have access to free online tools such as a checklist of questions to ask the doctor, are great for cancer patients. “There needs to be more empowering,” she says. “Much of what I’ve done my entire career is try to empower patients.” She says that being empowered means being educated, identifying your expectations, and asking questions. “We are willing to ask questions of our auto mechanics about our car’s maintenance and repair, but not of our doctors about our own bodies,” she says.

These days Liz is adjusting her expectations for her own life. In March, Covid-19 interrupted the career she’s been so passionate about when her oncologist told her it wasn’t safe for her to continue to work during the pandemic. “This is not how I anticipated retiring,” she says. With her unique perspective as experienced patient and medical professional, she has a lot of knowledge to share, so now Liz is exploring how she can continue to help other patients learn more about how to navigate the healthcare system and take charge of their own care plans. She’s empowered to empower others.


Read more patient stories here.

Meet a Recent Graduate of Our New Course, Digitally Empowered®

We’d like for you to meet Andrea Caldwell, a recent graduate of our Digitally Empowered® course and digital sherpa® program, conducted in partnership with the Cancer Support Community.

Andrea is already using her newly-gained digital literacy skills to access online healthcare resources. And not just for herself, but to support her Mom’s cancer journey, too. She was kind enough to share the details of her experience in the following video:

Andrea Caldwell Testimonial | I Hope That Other People Join In from Patient Empowerment Network on Vimeo.

Andrea enthusiastically encourages others to participate in these free programs:

“I recently had an emergency situation during which time I wasn’t able to use my cell phone. Thanks to the training I received from PEN’s virtual digital sherpa® program, I was able to use my computer to communicate, which I never would have thought to do before. Thanks to this technology training program, I’m now reconnected to the world.”

If you know an older cancer patient who needs a technology skills boost, tell them about Digitally Empowered®, our free and easy-to-complete course that develops the skills necessary to harness online health resources, including telehealth. 

These and all of our programs are made possible thanks to the generosity of Patient Empowerment Network donors and volunteers like you.

Digital Advocacy and Health Equity for CLL Patients

Telemedicine or telehealth – remote access to healthcare – has become widely used after the arrival of the coronavirus pandemic, especially by cancer patients. But the rise in telemedicine has also brought challenges to the vulnerable populations of Americans over age 65 and to low-income Americans who have struggles getting online. 

Among patients who are over age 65, only 55 percent to 60 percent of them have broadband access from home or own a smartphone. These patients also have challenges with completing information online, with only 60 percent who have the ability to send an email, to complete a form, and to locate a website. Among low-income patients, only 53 percent are digitally literate, and they also have lower rates of Internet use, broadband access, and smartphone ownership compared to other patient groups. 

Empowering Vulnerable Communities

As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) is working to foster change toward achieving equitable healthcare for all. In order to provide practical usage of telemedicine tools, PEN created the TelemEDucation Empowerment Resource Center for chronic lymphocytic leukemia (CLL) patients and their loved ones. Another resource, the digital sherpa™ program, helps cancer patients and their families become more tech-savvy by learning to use technology to their advantage during their cancer journey and beyond.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to CLL patients:

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits:

  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time so that you aren’t rushed when your appointment time arrives.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late.
  • Try your best to remain flexible and to be patient.
  • Try to write down your questions before your appointment to keep on track about things you want to learn during your visit.
  • Remain focused on the main purpose of your visit as much as possible. Polite small talk is fine but keep it to a minimum so that you can get the most out of your visit. 

CLL Patients Who Benefit the Most From Telemedicine

Not every CLL patient will be a good fit for telemedicine visit. Things to keep as top of mind for telemedicine visits:

  • CLL patients who are on active surveillance from their care providers are a natural fit for telemedicine. They can get periodic blood tests from a local laboratory, and the results can be sent electronically for their CLL specialist to evaluate.
  • Patients with high-risk genetic features or rapidly progressing CLL are not the ideal patient for care via telemedicine.

In the time of the coronavirus pandemic, remote monitoring has become part of standard healthcare terms. Some things for CLL patients to know:

  • Though it may be a new healthcare method for many patients, monitoring has actually been used for decades in the care of CLL patients and others with suppressed immune systems.
  • Remote monitoring is used to reduce the risk of infection to those with reduced immune system function, such as those with cancer and CLL.
  • Remote monitoring is a completely safe medical practice for CLL care when a patient’s blood work is monitored on a regular basis. Always ask your doctor if you’re unsure if you’re a candidate for remote monitoring or if you have questions about the frequency of your blood tests.

How Telemedicine Can Improve CLL Care

Now that even more CLL patients have become accustomed to using telemedicine care tools, CLL experts are looking to the future. Looking ahead:

  • Telemedicine can help CLL patients who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • CLL therapies will continue to improve for patients as a higher percentage of CLL patients participate in clinical trials.
  • The improvements in remote monitoring will bring more tools for CLL patients to do routine things like sending their heart rate and other things to their care provider in real time. 

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, CLL patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the TelemEDucation Empowerment Resource Center for informative content about CLL and telemedicine.


Resources for Telemedicine and CLL

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

What Subset of CLL Patients Should Utilize Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What CLL Population Will Benefit Most From Telemedicine?

Remote Monitoring

TelemEDicine ToolBox Visit Checklist

TelemEDicine ToolBox Glossary

 

Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Activate More Remote Monitoring for CLL?

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

What CLL Symptoms Can Be Monitored via Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

digital sherpa™ program

Bright Hope on the Horizon – Part Three

See the beginning of Sajjad’s story in Part One and Part Two


Swimming Upstream: My Struggle and Triumph Over Cancer and the Medical Establishment: New Hope in Cancer Treatment

(Jan 2020)

We all are familiar with the miracle of modern antibiotics. Most infections, even the serious and life-threatening kind, can usually be cured by the proper use of antibiotics. But antibiotics cannot work without help from the patient’s immune system. 

Every day, literally hundreds of times a day, various bacteria and viruses invade our bodies. Yet, we are not constantly sick. Why? Because our immune system is always on guard, ready to fight and destroy every potential enemy. The invaders are promptly killed and the threat is eliminated without us ever becoming aware of it. 

It is only when the bacteria manage to establish a beachhead that we show signs of illness. Even then, the immune system plays a critical role in helping the antibiotics conquer the infection. Antibiotics simply cannot work if the immune system is diseased and unable to help, as in HIV. That is precisely why in HIV even a minor infection can threaten the patient’s life despite the use of antibiotics. Our immune system is the most powerful, sophisticated, efficient, and elite fighting army one can imagine.

So, why does it not fight the cancer and kill it off? For decades, medical scientists have struggled with precisely this question. Why was the immune system actually ignoring the horrid invasion? Why was it sitting quietly by while the cancer invaded and destroyed one vital organ after another until it killed the patient?

It has been only in the last few years that we have realized what was happening.

Cancer is wily and cunning. That, of course, is not a surprise. But researchers have begun to understand that cancer cells actually make themselves invisible to the immune system. We still do not have a complete understanding as to how, but we have learned a few things. 

This we do know: The immune system fights off various invasions through a system of checkpoints. Say, for example, you have strep throat. When the germs first invade, an alarm is triggered which serves to mobilize the body’s immune forces. They attack the strep germs and kill them off. Soon, the immune forces reach a checkpoint where they must stop to receive fresh orders. If the threat persists, the order will be to continue the attack. On the other hand, if the threat has been eliminated, that information will be conveyed to the immune forces, thereby shutting them down. Obviously, we do not want our army to keep firing after the enemy is dead. It will only cause harm to the civilians. Similarly, our immune system must not go on unchecked in order to prevent damage to the normal and healthy tissues. 

So, our immune response is a pattern of repeated starts and stops regulated by a series of checkpoints. 

Scientists have learned that cancer has the ability to trigger checkpoints or manipulate the checkpoint signals. As soon as the immune forces attack the cancer, it initiates a checkpoint signal to terminate that immune response. Cancer has a way of making the checkpoint say—to continue the analogy—”No problems here. The threat is gone. All clear now.” 

So far, we only know about a couple of different ways this is accomplished. But it is very likely that the wily cancer has many other ways to fool the immune system. Our knowledge is still growing by the day.

Once scientists understood that mechanism, they began to develop medicines that neutralized the false checkpoint signals created by the cancer, thus allowing the immune system to continue to attack and kill the cancer cells. These drugs are called checkpoint blockade therapies.

In clinical trials, these medicines have produced a 66 percent success rate against an extremely deadly cancer, malignant melanoma. This is an astonishing success, and we may even improve upon that success as we learn to use different drug combinations and newer and better drugs are developed. Each day brings the dawn of a new hope.  One of the newer checkpoint blockade drugs, Pembrolizumab (Keytruda) has consistently shown encouraging results in a variety of, hitherto untreatable, cancers. 

Another prong in the battle that has brought jaw-dropping positive results is something called adoptive T-cell transfer. This is the stuff of science fiction. And the exciting results it is producing have turned cancer research on its ears.

Using T-cells to kill cancer will put medicine on the cusp of being able to say we have found a cure for cancer. Adoptive T-cell transfer therapy is the most promising technique we have to finally attain the Holy Grail of cancer medicine—to be able to utter those three magical words to the patient: “You are cured!” 

T-cells are our immune system’s killer cells. Think of them in a way as an elite commando force that can seek out and destroy the enemy. The challenge is this: because of mechanisms we are still trying to fully understand, cancer cells camouflage themselves from T-cells. So, how do you make the T-cells “see” this enemy called cancer? If they can see it, they will attack it and destroy it. 

The Best of 2020

As 2021 begins, we would like to take a moment to highlight a few of our most popular posts from 2020 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2020 one for the books, even during a trying year. Your efforts to Patient Empowerment Network are greatly appreciated!

January

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Stage IIB Hodgkin Lymphoma patient, Lindsay, shares her cancer journey from searching for a diagnosis to adjusting to her new mantle of ‘cancer survivor’.

10 Body Signals Warning Health Problems

We should always be aware of what our body is trying to tell us. Here are ten ways our body is signaling that we should be more concerned with our health.


February

How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer? Here are some tips and advice to be the most helpful to cancer patients.

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

Patients need to be aware of the side effects of immunotherapy and vigilant in addressing them with their doctor as they can signal complications.


March

Practicing Self Care In The Time of Coronavirus – How To Mind Your Mental Health And Well-Being During Covid-19

While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. In this blog, you will find tips to help you navigate your way through this time of global crisis.

Health Fraud Scam – Be Aware and Careful

This blog explains what healthcare fraud is and provides tips to help you avoid falling victim to these scams.


April

Cutting Through the Panic in a Pandemic

A list of trusted sources to help you cut through all the information that is being share online about the coronavirus pandemic.

Fact or Fiction: Finding Scientific Publications Infographic

This infographic from our PEN Powered Activity Guide shares her tips for finding and understanding scientific publications.


May

Cancer, COVID, and Change

Cissy White gets used to her new normal dealing with having ovarian cancer during a pandemic, and the challenges and benefits that presents.

Diversity in Clinical Trials Benefits Everyone

It is critical that minority groups are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone.


June

Social Determinants of Hope

Casey Quinlan explains that everyone’s social determinants of health have been impacted by COVID19, but she is seeing strong signals of hope.

Music as Medicine: The Healing Power of Music

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment. Here is a list of some crowd favorites.


July

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis, especially during a global pandemic. Here are some recommendations from cancer treatment experts.

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

A list of 10 quotes and messages of hope and inspiration from patients that can bring you that much needed boost in your day.


August

Turning Your Home Into a Sanctuary

These days we are spending more time at home, so you need to feel like your happy place. Turn your home in a sanctuary in 5 simple steps.

Oncology Social Worker Checklist

Oncology Social Worker, Sara Goldberger, MSSW, LCSW-R, shares her checklist for resiliency during the time of a global pandemic.


September

The Nitty Gritty on Care Partnering

Casey Quinlan provides a short checklist that can be used in any patient-with-a-bedside-care-partner situation.

Are Cancer Survivors More Susceptible To Respiratory Illnesses When Air Quality Is Poor?

A recent study published examines the connection between air pollution and respiratory health among cancer survivors.


October

Patient Empowerment Revisited

In this Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use.

The Power of Journaling During Cancer Treatment

This article is meant to help cancer patients understand just how much journaling can help them emotionally and physically during their treatments.


November

The Caregiver Impact: A Vital Part of Healthcare

Network Managers, Carly Flumer and Sherea Cary, team up to discuss the importance caregivers and some quick tips for caregivers.

5 Ways a Patient Portal Can Improve Your Health Care Experience

This blog shares 5 helpful tips for utilizing your patient portal to the fullest.


December

“Wait, There’s a Good Cancer?”

Carly Flumer shares her thyroid cancer diagnosis story and what it’s like being told you have the “good” cancer.

Chronic Myeloid Leukemia (CML) Patient Profile

A patient story from a chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, patient.