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Notable News: December 2019

While 2019 is nearing its end, there are all kinds of new beginnings in cancer research. Scientists are finding new and exciting discoveries that could lead to fine-tuned cancer treatments specific to each person, each type of cancer, and each response the body has to treatment. Using tropical flowers, mitochondria, and an off switch for cells, researchers keep finding new paths to treatment for even the most difficult and deadly cancers. Of course, that doesn’t mean we need to forget about prevention; there continues to be new information about how our lifestyles could affect our cancer risk, right down to our hair color.

A trip to the hair salon might mean an increased cancer risk, reports ecowatch.com. A study by the National Institutes of Health shows that permanent hair dyes and chemical hair straighteners might put women at an increased risk for cancer. The study found that women who used permanent hair color were nine percent more likely to get breast cancer. Black women, though less likely to use hair dye, had the most notable risk. They showed a 45 percent higher risk of developing breast cancer. Women who used hair straighteners had an 18 percent higher risk of breast cancer. Frequency of use posed a problem, too. Hair products can contain more than 5,000 chemicals, including formaldehyde, which is a known carcinogen. This study’s findings aren’t enough to draw a definitive link between the hair products and breast cancer, and no warnings have been issued about using hair products, but the findings do indicate that more research needs to be done to determine whether or not there is a connection. Read more about this study here.

Wouldn’t it be great if you could just switch off a cell to prevent tumors from growing and spreading? It might be possible, reports medicalxpress.com. Researchers have discovered what could be a new cancer immunotherapy treatment for patients who haven’t responded to other types of immunotherapy. The study, done on mice, shows that many tumors display the molecule MR1, which keeps the body from fighting the cancer cells. Researchers found that when they gave the mice an antibody that blocked the MR1 cell, cancer fighting cells could come in to slow cancer growth and prevent it from spreading. With this new information, doctors would be able to screen patients to see if they have the MR1 cell, and determine if they would respond to the potential new immunotherapy. Researchers now want to apply what they’ve learned to human tumors. You can learn more about the findings here.

Another treatment-related discovery is that there might be an alarm at the molecular level that serves as an alert when cancers have become resistant to treatment, reports sciencedaily.com. Mitochondria, which are present in most cells, can sense DNA stress which can indicate when cancer cells have developed resistance to chemotherapy, researchers found. The findings could lead to new cancer treatments that would prevent chemotherapy resistance, making it more effective. See the details about this discovery here.

Also from sciencedaily.com, we’ve learned that a tropical flower might hold the answer to treating pancreatic cancer. The plant, Uvaria Grandiflora, grows in Malaysia, Indonesia, Thailand, and the Philippines, and its flower contains a chemical that researchers have used as a model to create three new molecules which they hope could treat pancreatic cancer. All three of the molecules have shown that they kill pancreatic cancer cells in a Petri dish, and while the potential drug trials are more than five years away, these molecules could become new drugs for treating pancreatic cancer that would be more effective and less toxic than current treatments. You can find more information here.

As you say goodbye to 2019, we hope you will continue to say hello to Patient Empowerment Network. We will continue to provide you the latest in cancer research news as we continue in our mission to empower patients, family members, and caregivers in innovative ways. We’re particularly proud of our digital sherpa™ program, which you can learn more about at voice.ons.org. Learn how the sherpas are used to enhance the experience of patients and nurses as told by Regina White, RN, MS, OCN at Moffitt Cancer Center in Tampa, Florida. Check it out here.

Happy, Healthy, New Year to all!

What Not to Say When You Don’t Know What to Say

We don’t always talk much about how to talk to each other when illness comes calling. People tend to feel awkward and uncomfortable, often blurting out words that are meant to be encouraging and helpful, but end up being exactly the opposite. Many people just don’t know what to say but, more importantly, many people just don’t know what not to say. Let’s start the conversation with some of the most common comments and why you shouldn’t say them.

The Positive Attitude Comments

These comments, on the surface, seem harmless enough, but they tend to minimize what the person is going through. Comments such as, Be strong, You’re so Brave, Be sure to pray about it, orYou’ll beat this with a positive attitude, oversimplify the challenges of being sick and undergoing treatment. While it’s nice to be hopeful, no matter how positive or prayerful he or she may be, there is no guarantee that the person is going to “beat it” or get well and people who are sick don’t need the added pressure of staying strong and brave through all the ups and downs of their illness.

The Grander Plan Comments

Sometimes, when the people we love are sick, we want an explanation or want to assign some sort of meaning to it, but when faced with a scary diagnosis your loved one may not be receptive to your philosophical approach. Comments that include, God has a plan for youYour illness happened for a reason, or You must have something to learn from this experience, can imply that you think the person is supposed to be sick and that can come across as pretty insensitive.

The Comparison Comments

There are as many ways to be sick as there are people who are sick and just because you know two people with the same diagnosis does not mean that they will be sick in the same ways. Comments along the lines of, I know someone who had your exact same illness and had it so much worse than you and then they fully recovered, just aren’t helpful. Your loved ones need your support and comparing them to others is not supportive.

The Dismissive Comments

When someone is going through something difficult it’s natural to want to try to cheer them up by pointing out a silver lining, but unfortunately that strategy can backfire. Comments like, You don’t look sickIt could be worse, and You got the good version of your illness, are dismissive and insulting. People who are sick aren’t able to ignore the impact of their illnesses, and the people in their lives shouldn’t either.

The Advice Comments

Chances are, if you have a friend who has been diagnosed with an illness, you will want to do whatever you can to help, including offering advice. While your intentions are good, your words might not be appreciated. Saying things like, You should practice gratitudeYou shouldn’t use your illness as a crutch, and Maybe you should change your diet and/or exercise routines, are comments that, instead of being helpful, tend to imply that the person is somehow to blame for her illness; if only she would follow your advice she wouldn’t be sick.

So, what can a well-meaning friend or loved one say? Most patients prefer honesty over cliches. Simply stating, “I’m here for you,” goes a long way. And, if you feel flustered, it’s okay to say that you don’t know what to say, but that you would like to help.

This post was inspired by one of our Empowered Patient Chats. You can find the schedule of upcoming chats and join the conversation here.

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Patient Profile: Kirk Beck

Patient Profile

Kirk Beck

Prostate and Head and Neck Cancer

What is significant to Kirk Beck is not that he’s had cancer. He delivers his story with minimal detail about his diagnosis, his treatment, and the subsequent life-threatening complications he endured as casually as he might tell you what he had for breakfast. It’s not until his wife Kelly joins the conversation that the full impact of Kirk’s medical history becomes clear.

“He wouldn’t have lived to be 50,” says Kelly of the first time Kirk was diagnosed with cancer. They weren’t married then, but it’s not lost on Kelly that their marriage never would have happened if he hadn’t survived. “It was caught very early and he was lucky,” she says. What’s lucky is that Kirk’s prostate cancer was detected at all. It was the mid-90s and he was 44, much too young to have a prostate screening in those days, but Kirk had a friend with the disease so during a routine physical he insisted, despite his doctor’s protest, that he get tested.

That test ultimately resulted in his diagnosis and a radical prostatectomy. Through the help of his brother, a physician, he sought treatment at Johns Hopkins Hospital where the surgery was done using the “nerve-sparing” technique — which helped prevent side effects such as urinary incontinence and sexual dysfunction. The surgery was a success, the cancer hadn’t metastasized, and Kirk didn’t require chemotherapy or radiation. “I got operated on and came home,” he says and in the 20 plus years since he’s had no recurrence or side effects.

He did, however, get another cancer diagnosis. This time he had tonsil cancer in October 2005. Within days his tonsil became extremely swollen. He had surgery the next month, followed by chemotherapy and radiation which was accompanied by a drug designed to protect his salivary glands from the radiation. This time there were complications. By New Year’s Eve he was back in the hospital and then again, after his second round of chemo, at the end of January 2006. He had what he calls episodes of extreme pain. “It was excruciating. Unbearable,” he says.

What he had was a blood clot, portal vein thrombosis, which is a rare condition to which he had a very rare reaction, and his small intestine had begun to die. He was unable to digest food and was vomiting a lot. His body had created what is known as collateral veins which were enough to keep him alive, but not enough to prevent damage to his small intestine. The hospital told Kelly that there was nothing more they could do. He was too high risk for surgery, they said. She was advised to contact hospice care.

“If I had listened to them, he would be dead. I just knew deep down this wasn’t supposed to be happening this way,” says Kelly, who instead of calling hospice called Kirk’s brother, the doctor, and got Kirk back to Johns Hopkins where they were able to save his life.

Of course, it wasn’t that simple. Kirk required intensive and careful treatment of his clot, continued radiation for his cancer treatment, and surgery to remove the damaged area of his small intestine. The process was scary and daunting and full of unpleasant details, but that is not what Kirk chooses to focus on. “If you look at it properly, it’s a gift. Not a penalty. Not a punishment. It’s an opportunity to reconsider your perspective on life,” says Kirk.

“It was a great experience. It might be strange to say, but its what I believe. It’s not something I want to go through again, but it was priceless. It changed my entire life and made me a lot more appreciative.” That is what is significant to Kirk. Not having cancer twice. Not having a life-threatening blood clot, but the living that he has done and the opportunity that these experiences have given him to help others. “I’ve been able to share my story and offer help to others that I couldn’t have offered without the experience. People knew I was speaking the truth. There’s no fiction in it. I try to give people a real and truthful perspective and that is invaluable.”

Kelly has a similar take away. She says the experience afforded her a new perspective, but also made her a strong advocate for patient empowerment. “Don’t always accept what they say. Be an advocate,” she says. “If you have a bad feeling and you are not getting answers, go elsewhere. There are so many places you can go for information. Take advantage of every opportunity. Having a good, strong advocate will save your life.”

In addition to his two bouts with cancer, Kirk has had a number of pretty considerable medical issues over the course of his 67 years, but he’s never let any of it slow him down. “Everyone has their own journey and also their own destination,” says Kirk who believes that a positive attitude is crucial to recovery. “You just can’t allow yourself to be destroyed by these situations.”

The Best of 2017

As 2018 begins, we would like to take a moment to highlight the top 10 most popular posts from 2017 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated.

How to Read and Understand A Scientific Paper

This guide will teach you how to read a scientific research paper so that you can come to an informed opinion on the latest research.

Presentation Tips for Patient Advocates: Developing Effective Speaking Skills

As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. If you follow this step-by-step guide it will help you to help you become a more confident, prepared, and persuasive speaker.

How to Weigh Up the Benefits and Risks of Treatment…And Why It’s Important That You Do

This blog explores the question, “Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?”

Mapping the Patient Information Journey

Health information needs to change as you move along the patient pathway and research has shown that access to the right information at the right time delivered in the right way leads to an increase in a patient’s desire and ability to have a more active role in decision-making.

How to Cope With Cancer-Related Fatigue

Marie describes cancer-related fatigue (CRF) and six different ways for patients to manage it.

Patient Profile: Elizabeth Carswell

Elizabeth Carswell’s story of AML and how her child keeps her going is shared in this patient profile.

What Not to Say When You Don’t Know What to Say

Inspired by an Empowered #patientchat, Jennifer Lessinger put together a list of the most common comments patients hear and why you shouldn’t say them.

The Advocate’s Guide to Reporting Live from Conferences and Events

Marie shares her guidelines and tips for preparing to report live from your next conference or event.

The DisCONNECT OF CANCER

This blog discusses how a diagnosis and cancer can affect your relationships.

Patient Advocacy: Ten Tactics for Mastering Social Media Success

Here are ten tactics you can use to master social media, make your cause better known, and grow your online influence.

Notable News

Knowledge is power, but staying on top of and researching all the latest headlines can be a time-consuming and daunting process. That’s why we’re doing it for you. That’s right. We’ll keep an eye on the most interesting and newsworthy developments of the past month or so and then we’ll summarize them for you here. We’ll even provide you with links to the more detailed articles at the end of each summary. The best part? We’re starting right now.

There’s a lot of buzz about immunotherapy and rightly so. This month an article on time.com featured a successful immunotherapy test trial in which a young leukemia patient’s own immune cells were used to fight her cancer. The genetically modified immune cells are called chimeric antigen receptor (CAR) T cells and with one application they can be used to train the body to fight the cancer cells, hopefully, indefinitely. The modified cells are basically drugs living inside the body. That means patients won’t need to take regular doses of medications or be subject to other, sometimes unpleasant, treatments. There is a huge push for the Food and Drug Administration to move the therapy beyond the testing phase so more people can benefit. So far, the results are promising. Two men underwent the CAR T therapy in 2010 and both remain in remission today. Researchers are proceeding with caution though. The CAR T cells are individualized, therefore very expensive, and so far the process only works on some types of blood cancers There are also some pretty intense side effects. When the modified cells enter the body and start killing off the cancer cells the immune system response is acute and can include things like high fever, difficulty breathing, and kidney failure. All told, the latest developments in immunotherapy are worth keeping an eye on. Read more here. You can also learn more about it here. And even more, including a bit about the history of the research and the men behind the research here.

An unexpected hurdle has emerged in cancer research: not enough patients. Hard to believe, but as reported by nytimes.com earlier this month, there are more drugs and clinical trials than there are patients to test them on. Here’s why. Inspired by the latest developments in the aforementioned immunotherapy, companies are in overdrive and have created a surge in trials for new drugs that use the body’s own immune system to combat cancer. These drugs have the potential to yield a huge profit should the FDA give the stamp of approval. None of the companies want to be left out of the earnings so they are all trying to develop their own version of drugs that treat similar cancers. That alone is enough to spread thin the eligible patients. Factor in the specificity of some of the trials and the patient pool decreases even more. In addition, the rapid increase in trials have made some of the major medical facilities wary and they have dialed back their participation. You can find more details here.

A routine blood test may soon be the best method of early detection. Researchers in Japan have developed a method that uses a single drop of blood to test for 13 cancers. The test is relatively inexpensive, would be done as part of a comprehensive medical exam, and use a molecular substance called MicroRNA to detect the cancers in early stages. Clinical trials are underway as of earlier this month. This promising development was reported at pressherald.com and more details can be found here.

Stay tuned. In the months to come, we’ll help keep you informed which will help keep you empowered.