Articles

From a new study showing that the iCanQuit smoking cessation app is more likely to work than typical guidelines, to the House unanimously passing the Veteran’s Prostate Cancer Treatment and Research Act, here’s what’s happening in the cancer landscape this week. 

Friday Frontline: Smartphone app encourages smoking cessation, House passes Veteran’s Prostate Cancer Treatment and Research Act, and More

Finding the best care team can make all the difference for patients with diseases like multiple myeloma.

Program Leads Patients With Cancer on ‘The Right Track’

Some cancers and treatments can result in cognitive changes that affect thinking, learning, processing or remembering information. These changes can affect many aspects of life such as the ability to work or even to do everyday tasks. Find out whether you have an increased risk of cognitive changes.

Cognitive Changes After Cancer Treatment

Each person responds to treatment differently. No one knows in advance how effective cancer treatment will be. There's also no way to know how long anyone will live—with or without cancer.

Life Expectancy With Cancer

My sister, Mary Schueller, M.S.N., RN-BC, AOCNS, CHPN, is a great example of what it’s like to devote your career to helping others. She truly cares for those in her path and tries to help in whatever way she can. She tirelessly helped our family navigate all the difficult and winding roads when dealing with cancer diagnoses that affected all our lives. Her nonstop efforts helped resolve many of our family’s daily concerns.

In 1994, our father, who was a dairy farmer and vegetable grower in rural Wisconsin, received a diagnosis of multiple myeloma. He underwent numerous rounds of radiation and chemotherapy in a town that was more than 20 miles from the farm he ran with our mother.

They both taught us to be hard workers and support one another, no matter what it was we were going through. Our mother, for the most part, transported him to and from appointments, but it was Mary who immediately gave us other five siblings folders filled with papers and articles to explain the process. Because of her position as an employee of Hospital Sisters Health System, she was able to share a lot of information with us and attend many of our father’s appointments and treatment sessions.

She was very patient with our mother and answered many of our family’s questions when we didn’t understand things. Sadly enough, our father passed away in 1996 under hospice care after numerous attempts at treatments. Then, in the early 2000s, our mother received diagnoses of various medical issues, the last of which was vulvar cancer, and we started the whole cancer journey again. As the one who lived nearest our mother, who had moved to an assisted living facility closer to her doctors and hospitals, Mary ended up responsible for most of her care.

Mary worked tirelessly in her own daily job as an oncology clinical nurse educator, which involved traveling several days a week to another major Wisconsin city through rain, sleet and snow, and then came back to our mother to continue nursing her through all the daily events that are involved in cancer care and treatment.

I honestly can say that I never heard her complain about being the one responsible for our mother’s care. She set up a page on the CaringBridge website so that we would all get updates and could help in small ways, which was so wonderful for those of us who did not live close by. Our mother underwent various radiation, surgical and chemotherapy modalities, which Mary so expertly navigated because of her experience in the field.

Whenever one of us had a question, we posted it on the CaringBridge site, and she would explain it to us in lay terms. I don’t know where we would have all been had Mary not been there to help with all this. Going through this cancer journey for the second time with our other parent was taxing, to say the least, and Mary provided the comfort and support we needed until our mother passed away in 2017, also under hospice care.

Besides holding a bachelor’s and a Master of Science degree in nursing, Mary has various oncology and gerontological certifications that demonstrate her continual pursuit of knowledge in the ever-changing medical world. She has held many positions throughout her more than 41 years of employment at Hospital Sisters Health System, including nursing assistant, staff registered nurse, oncology nursing specialist and even interim chief nursing officer, giving her a vast amount of knowledge that she is happy to share.

Mary is a member of many different organizations, including the Oncology Nursing Society; the Southeastern Wisconsin Oncology Nursing Society, of which she is past president; the Northeastern Wisconsin Oncology Nursing Society; and the Hospice and Palliative Nurses Association. As a member of the Oncology Nursing Society, Mary was part of the first delegations of nurses to visit China and Cuba.

As if she didn’t already have enough to fill her hours, she also stays involved in her community by being an American Red Cross blood donor; a participant in the PROMISE study, which is testing healthy people for signs of multiple myeloma; a Sheboygan County Cancer Care Fund board member; an Alverno College school of nursing volunteer assessor; a volunteer with the American Cancer Society; and past chair of the Wisconsin State leadership board. She was actively involved in the Tobacco-Free Sheboygan County Coalition and served as co-chair for many years. She continues to be involved with many of the American Cancer Society Relay for Life events and has been on various additional committees.

Whew! I’m exhausted just writing down some of the things she does. I don’t know how she keeps going. Cancer is exhausting, time-consuming and unforgiving at times. I thank God all the time that Mary was able to help my large, extended family navigate our cancer journey while providing support for our parents. She showed great medical knowledge, patience and love and continues to be incredibly helpful on a daily basis to everyone she touches. She is truly an extraordinary healer on so many levels!

Mary Schueller devoted her entire career to helping others with cancer, and the devotion she displayed to that cause is what makes her an extraordinary healer.

What Devoting A Career to Help Others with Cancer Looks Like

A dear friend I have known for many years gave me a call on his way home from the hospital on one Saturday night. His wife just had breast cancer surgery. He was uplifting as always and happy to talk, sharing news about her and what they had to do in the following months. We talked about our faith and how our lives have gone through some detours.

As I listened to him, I paused … I was reliving some of the moments of the past year. It has been almost a year since my first appointment with my breast cancer surgeon, Dr. Pat Whitworth. I can still smell the cool October air.

On October 16, 2019, my life drastically changed, and I had to embrace a completely new journey. The past 11 months have brought many transformations with a lot of sweet “aha” moments and pure tears of joy. It has been a year of deep forgiveness and healing. It was my personal journey to find my anchors and evaluate many priorities in my life, let go of the things that did not matter anymore and say yes to the happy me.

Looking back at the past year, my quest was to embrace the change and find love tucked in my heart that I somehow lost a few years ago following my divorce. As I write this, the sunshine that peeks through the curtains reminds me of the good days ahead … Sometimes you might ask yourself, “Why do I go through all these challenges and trials.”

Then I realized, I was providing support to a dear friend and his wife who too had breast cancer. At the end of the call, my friend asked what I did differently that brought me out of the fear zone and into the warrior mode.

There was a pause then I answered, “It was my choice to either let life happen to me or pray for God’s wisdom to make the right decisions and be proactive in my healing journey.”

We have a blind faith and maybe it is important to be faithful, but the truth is that healing does not happen by doing nothing. It takes bold faith and action. It requires discovering who you are and finding your way.

You can choose to find your calm and your anchor. You can choose to stay positive. You can also surround yourself with women who have been in your shoes and could give you solid advice.

There is an amazing level of inner strength that you feel coming from these warriors. They might be fragile and petite, but they are strong.

Every day is a battle. But we have a choice to make things happen every day. We can look at our life as an opportunity to grow even when it hurts, or we can give up and not care.

So, let’s highlight some things you must become to get through any life challenge, especially breast cancer.

Being a strong woman is more than being a female version of a Roman Gladiator. There is nothing that can be compared to the strength you find when cancer attacks your body and you learn to love yourself even more. Being strong is the only choice you have and first you will cry, break down, fall apart and then you will gradually put yourself back together. Every day I would affirm I choose life. Because tomorrow is not guaranteed. You give the best to yourself first.

Speak your desires into existence. Speak healing and love into your life. That is where your strength is hidden. It is the power of your words that changes your mindset, changes your energy, and changes your life. Those words can bring peace or cause stress.

The first time I came to Dr. Whitworth’s office, there was a poster on the wall about managing stress. 

 was an amazing way to identify where you were on your healing journey.

Gratitude has led me to experience more love and the hardest thing I had to do was to learn to accept love as well. Many strong women often do not know how to love themselves fully and they have a hard time accepting love and care from others. Often it is a cultural thing or a family thing. In my Russian culture, women were taught to never complain and take care of their lives. We were taught to survive and get through times of crisis with a smile.

When you learn to accept love, you will feel worthy. And when you feel worthy of being loved and appreciated for who you are, your life will change. Your transformation will happen fast when you learn to accept love and love yourself. Because everything you will do in your life will come from the place of love for who you are, including your healing, your relationships, your career, and your business. Everything will change.

Allowing others to help you and accepting care and love is something I had to learn in the past few years. You want to be Wonder Woman, ready to take on any challenge. When you agree with the idea that having help is totally cool, you finally realize once you accept love you can give more love back into the world. Your heart is finally healing and everything else falls in place. You are more motivated to do things you have delayed for a long time and you are motivated to change your lifestyle.

Good support system and solid medical team

I have been very blessed to have an amazing surgeon. He is an incredible doctor who has been a big blessing in my life and has encouraged me to practice mindfulness and work on reducing stress.

I am grateful for my friends that provided an amazing holistic health education.

I am grateful for my church friends who supported me in so many ways. I am so grateful for my dear friends who reminded me how strong I was and who prayed for me and my healing.

I am grateful for my book agent Julie who inspired me to write and share real life experiences.

I am grateful to my sons who are my rock and joy. They are my miracles. They are my true loves.

I am grateful to my parents from whom I have managed to hide the truth about the breast cancer diagnoses for many months and finally gave in and revealed the news. I am grateful they stayed calm.

I am grateful for this journey and for my life.

Are you grateful for your inner circle? Make sure to tell them today.

When you truly embrace your strength, find gratitude and self-love and surround yourself with loving and positive people, magic things can happen.

Tatyana Gann is a publicity strategist, mindset coach, writer, lifestyle advocate and breast cancer thriver. Her aim is to inspire women to tell their story to heal their mind and body. Tatyana resides in Nashville with her two sons. You can follow her on Instagram 

Looking to change your mindset when facing down breast cancer? Here are 3 hacks to keep you calm and happy. 

3 Mindset Hacks That Can Keep Women Facing Breast Cancer Calm and Happy

My name is Timothy Green. I am 39 years old. When I was a patient in the oncology unit at NewYork-Presbyterian’s Columbia University Irving Medical Center in New York City, I had the privilege of having Nadeen Robinson, M.S.N., RN, OCN, as my nurse. I strongly and wholeheartedly believe that she is deserving of recognition for so many reasons.

I have extreme anxiety, depression and PTSD and now am dealing with a disease in my brain and lymphoma, as well, my doctors believe. In addition, now I am deaf and severely vision impaired. This may sound cliché, but there is just something about Nadeen. In a world where so many are succumbing to mental illness — specifically, suicide — that calm is refreshing to me. To be completely honest, I was scared out of my mind, but there was something about her coming in with that smile and that infectious energy that calmed me and put my mind at ease.

She constantly sought ways to help me improve my ability to communicate with the staff and elevate my vision. Nadeen got me whiteboards, markers and an eraser so I could communicate with the nurses and doctors and know what was going on. She would sit with me and use the whiteboard to tell in detail the plan for the day as she broke down the doctor’s findings. 

I know that seems like a normal thing to do for a deaf person; however, it was her action, her time and her intent that made the difference to me. It gave me a sense of security and control in a world where one can easily get lost with full vision and hearing, let alone impaired.

As if that was not enough, Nadeen would excitedly come in each day with a new kind or color of marker with a built-in eraser, decorated board or something else that was fun to make me smile. One day she had a rolling iPad she borrowed from another nursing unit. She was so excited, as if it was something that would benefit her, and that was truly amazing. We used the iPad to connect face-to-face with a hearing-impaired person and use sign language.

I am just learning sign language, as this is all new for me, and though my ability to communicate was limited, her effort made me feel so cared for and that she had my best interest in mind. It made me feel like I mattered in a way that encouraged me to want to be better each day. Her willingness to go above and beyond is as amazing as her bedside demeanor and above anything I have ever encountered.

Nadeen’s attention to detail, willing attitude, knowledge and generosity, both on and off the clock, seem far superior to those of most in the medical field. She has been exceptional at working with me in my time of need to help with both my disability and personal care. She got me out of my room and into the hallways each day to walk around as she had everyone cheer me on, encouraging me to stay independent and not fall victim to my disability. 

I was in need of some personal items because I was staying longer than expected, and I didn’t have help because my girlfriend left while I was in the hospital due to her anxiety about all that was happening. Nadeen noticed my struggles and used her own time and money to get my clothes laundered. When you are 6 feet, 3 inches tall and 303 pounds, it’s hard to fit into a hospital bed and even more so the gowns, so you can understand how important it is to have your own clothes. Nadeen added some extra items I needed to help me feel normal throughout my stay in the hospital.

After my discharge, I needed to go to another unit, and Nadeen reached out to the admitting staff there to make sure I did not lose my bed. She assisted me with the entire process until I was in my room because I had no one with me who could help. This was not your everyday act of kindness, and it really means a lot to me that I matter to someone so special.

Health care needs more Nadeens. Her level of care is unmatched, and her endless energy and eagerness to care for her patients go far beyond expectations and the call of duty. She is not just extremely knowledgeable and professional; she has what nursing is all about, taking her oath to heart and beyond. The oncology team is fantastic, but Nadeen is definitely an example for all. I am happy to have met her. I feel like she is not only my nurse but also my dear friend. The love she displays for her job and people in general goes far beyond extraordinary. Nadeen literally changed my life.

I was feeling extreme anxiety and depression when I was in the oncology unit, and deaf is a strange place to be, but Nadeen helped me find peace with who I am and how to cope. I could write all day about how important she is, not just to me but to all the cancer patients, as well as to the hospital itself, based on her quality of work. I am asking with my whole heart and soul for you to consider her for this award, because she sets the gold standard for nursing and is the glue that holds her unit together.

One patient recounts how his oncology nurse's love for healing helped him on his treatment journey.

Oncology Nurses Have A Love for Healing

Blood cancer treatment is looking far different than it did years ago, and as a result, patients are surviving longer — and often with fewer side effects.

, we’re honing in on some of the most exciting updates in the treatment of patients with mantle cell lymphoma, including a new chimeric antigen receptor (CAR)-T cell therapy that was approved just a few months ago. The new therapy, which involves programming a patients’ own cells to fight cancer, is helping patients with the dis- ease live longer, better lives. However, CAR-T cell therapy is not without downsides.

For many, the treatment can be extraordinarily expensive. Another feature story in this issue discusses the hefty price tag of CAR-T cell therapy, as well as financial assistance programs that help patients pay for this treatment.

Although the past decade has brought breakthroughs in treatment for adult blood cancers, advances for pediatric blood cancers seemed few and far between. That, however, is changing. Researchers, nonprofit organizations and patients are collaborating to test new therapies for children to bring more options to young patients.

Our third feature story delves into the coming of age for pediatric blood cancer research and highlights a few families who have benefitted from it.

No cancer breakthrough is possible without clinical trials. But many patients are hesitant to participate because they fear they’ll be treated with an ineffective agent or, worse, a placebo. Dr. Susan M. O’Brien, a hematology oncologist at UCI Health in Orange, California, who is actively involved in clinical trials, discusses these misconceptions and the potential benefits of enrolling.

Also in this issue: Mary DeRome of the Multiple Myeloma Research Foundation explains a program that helps patients get the right team, the right tests and the right treatment, including the right clinical trials.

I hope you find this special issue of CURE® both useful and enlightening.

In this special hematology focused issue of CURE® we look at all the promising treatments and research for both adults and children with blood cancers. 

New Therapies for Adults and Children With Blood Cancers Hold Promise

Mantle Cell Lymphoma (MCL), as described in this issue of CURE®, has an interesting and inspiring story. It was one of the first cancers known to have a genetic abnormality-chromosomal translocation t(11;14).

This mutation causes an over expression of the protein cyclin D1, which drives cells to grow, ultimately become malignant and then multiply. However, until recent years, t(11;14) and other mutations were only used to diagnose MCL, not as a target in treating the disease. MCL was treated like most other lymphomas, with chemotherapy and steroids and then eventually Rituxan (rituximab).

Like many times with cancer, scientific discoveries broke the stalemate of MCL that had become refractory, meaning it stopped responding to treatment. Additional cancer promoters were discovered, including Bruton tyrosine kinase (BTK) — an enzyme that promotes cancer proliferation. 

That eventually led to drugs that inhibited BTK to be tested — and effective in — refractory MCL. Continued study of the disease also found more targets, leading to other drugs like Venclexta (venetoclax). Most recently, Tecartux (brexucabtagene autoleucel), a genetically engineered T cell therapy was approved for MCL treatment. All the while, researchers are still studying cyclin D1 and the cell cycle pathways it controls, in a continued quest for more treatments for MCL.

Outcomes continue to improve for patients with MCL, as the disease has gone from being highly resistant and difficult to treat to one of the more curable types of blood cancers, thanks to newer and intelligently designed drugs — many that are the fruits of basic science research. 

This highlights the critical value of clinician expertise in diagnosis and treatment. In this day and age, we hope that telemedicine and simple awareness can bring these treatments to more patients who need them, improving outcomes and quality of life for all with the disease.

Mantle Cell Lymphoma (MCL), as described in this issue of CURE®, has an interesting and inspiring story. It was one of the first cancers known to have a genetic abnormality-chromosomal translocation t(11;14).


Closer to a Cure for Mantle Cell Lymphoma

Bonnie Annis is a breast cancer survivor, diagnosed in 2014 with stage 2b invasive ductal carcinoma with metastasis to the lymph nodes. She is an avid photographer, freelance writer/blogger, wife, mother and grandmother.

A cancer diagnosis can cause a person to feel a wide range of emotions like fear, anger, shock, dread, grief, or loss. Often those emotions come suddenly like a crazy whirlwind and other times, they sneak up quietly, one by one. No matter how they come, all of them are normal.

I remember sitting in the doctor’s office after my diagnosis hearing her speak but being unable to process her words. They came in cartoonish fashion and sounded like Charlie Brown’s teacher, from Charles Shultz classic comic series, “Peanuts.” All I could hear was, “Waa wa wa waa, wa waaa wa waa.” Nothing made sense.

The words, “You have breast cancer,” can feel like being handed an instant death sentence, but though it feels that way, it isn’t necessarily a fact. Breast cancer is a highly treatable disease.

When I was diagnosed with breast cancer six years ago, I learned a lot. And, I’d like to share some of the most practical information in hopes of helping others.

Breast cancer isn’t usually a medical emergency. That means there’s usually plenty of time to process information and emotions. Give yourself space and grace. There’s no reason to rush into making decisions. You have time to think.

It’s a good idea to enlist the help of a trusted family member or friend. You’ll be receiving a lot of medical information and it’s a good idea to have someone accompany you to appointments. The person who joins you can jot down notes and vital information. This will allow you to be present in the moment without worrying about details.

You’re not alone. While it may feel like you’ve been thrust into a battle you weren’t expecting to fight, you won’t be the only soldier on the field. Your medical team will want you to be well informed. Their goal is for a good outcome.

At some point in the early stages of your care, you’ll be assigned a nurse navigator. The nurse navigator can help provide answers to questions you may feel uncomfortable posing to your doctor. The nurse navigator will also help keep you stay on top of upcoming appointments. This person will become your advocate. Learn to trust and rely on them. No question or concern is too insignificant. They’ve heard it all before, so ask away.

You’ll also have a tumor board. A tumor board is a group of doctors who collaborate on your individual case. They work together to coordinate your treatment and care. It may feel odd knowing you’re being discussed on a regular basis, but by working together, they can ensure you receive the very best care.

It’s OK to cry. Cancer is a scary word, and everything associated with cancer carries a feeling of uncertainty. Give yourself permission to cry and don’t be afraid to let others see your emotions.

Hit something! Get angry if you must. Anger is a powerful emotion and one many try to control, but in situations like receiving devastating health news, it’s acceptable to express frustration and anger. Anger won’t solve any problems but sometimes, those feelings can allow a person to process information and move forward.

Tell others about your diagnosis when you’re ready. A cancer diagnosis is personal. The diagnosis will undoubtedly cause you to feel emotional pain and shock. It will more than likely have the same effect on your loved ones. Adjusting to the news takes time. Communicate the information to others when you’re strong enough and do it on your terms.

Find your people and build your tribe. You may or may not have an emotional support team in immediate family members. Sometimes it’s necessary to reach outside your family unit and rely on a trusted friend(s). Look for those who are attentive and optimistic. Positivity will be beneficial to your recovery.

You may find new friends through a breast cancer Facebook group or other online support groups. Community will be a vital part of your healing process.

Communication is key. Talking about cancer during the initial phase of diagnosis will be challenging, but necessary. You’ll need a confidant to share thoughts, feelings, and fears with, but you’ll also need someone who is non-judgmental and understanding. You have the power to choose when and if you want to share information. Some people find it helpful to set up a website for sharing information with multiple people easily. 

 is a free website many have found helpful. Don’t feel pressured to share publicly, but if you choose to do so, do it your way.

Don’t believe everything you read or hear. It’s easy to fall prey to information overload. Be careful! One of the first traps many newly diagnosed patients experience is a need to know. As soon as you find yourself near that slippery slope, pull back! There’s so much information on the internet, in books, and from survivors it’s easy to be overcome with details. Most doctors’ offices or treatment centers provide helpful, documented information to aid in guiding you through treatment options. If they don’t offer reading material, ask for it. Or check reputable websites.

There are also several very good books with helpful information: 

Remember, knowledge is power. The more information you have about your disease, the less power it has over you.

When in doubt, speak out! If information is unclear, ask questions. The doctor and medical team work for you. You have a right to clear, concise answers.

Remember, you’re only human. From the day of diagnosis forward, you’ll be required to make decision after decision. Some of them will be small and others large. Some will be required immediately, and others will not. All these decisions can bring about feelings of stress. An unknown future can be frightening, but there are more people surviving breast cancer today than in the past.

The best piece of advice I can offer is to cling to hope. That’s what’s helped me the most along with choosing to live one day at a time.

“Sometimes even to live is an act of courage.” ― Lucius Annaeus Seneca

Remember, knowledge is power. The more information you have about your cancer, the less power it has over you.

Practical Tips for People Newly Diagnosed with Cancer

As oncology nurses, we know that birthdays are a privilege denied to many. Our stem cell transplant unit has been fortunate to have had a great champion of birthdays in Courtney Ebbeskotte, RN.

On one occasion, she noted that one of our patients was about to turn 21 and discovered that on his birthday, he would be admitted to the hospital for his final round of chemotherapy. During his second-to-last hospital stay, Courtney made arrangements with his mother and her fellow staff members to throw a surprise party during his next admission. 

When he arrived, he was met with streamers, a cake and enthusiastic nurses and patient-care techs shouting “Surprise!” It made his birthday and final hospital admission an experience to remember.

Another time, she found that she and one of her patients shared a birthday the upcoming week. Although not scheduled to work on her birthday, Courtney came to the floor and delivered a bouquet of balloons to the patient. She has wholeheartedly celebrated patient milestones and was among our unit’s most enthusiastic participants whenever a patient completed the 5K, half- marathon or full marathon that are part of our unit’s walking program. If she wasn’t the nurse to send a group text arranging the finish-line celebration, she would most certainly be one of the first to respond and stand by, ready to cheer.

Courtney has been a champion not only of current birthdays but also of patients reaching more birthdays. Every shift, she would strive to motivate her patients to do what was in their best interest for recovery, whether that meant eating and drinking more, walking just a few laps in the halls or sitting up in a chair for at least one meal. She is particularly effective in motivating non- compliant patients. 

When she served as our unit representative on the pressure ulcer prevention team, she strove to motivate her fellow workers in an effort to help us help them. She accounted for the patients needing frequent repositioning and placed reminders, which she designed and redesigned, on the patient doors and inside the rooms. She would hold us accountable and inspire us to be better healers.

Many patients owe their birthdays, both the ones celebrated now and those they can celebrate in the future, to the compassion, work ethic and healing nature of Courtney Ebbeskotte.

Oncology nurses are there for many moments on the cancer journey and can help champion important milestones that might otherwise go by unnocticed. 

Oncology Nurses Help Champion Patient Milestones

Clinical trials are essential in the development of new cancer therapies, yet many patients have misconceptions about clinical trials that may make them apprehensive to enroll in one.

, CURE® spoke with Dr. Susan M. O’Brien, a hematology oncologist at UCI Health in Orange, California, who is actively involved in clinical trials as director of the UCI Health Sue and Ralph Stern Center for Cancer Clinical Trials and Research. O’Brien discusses the importance of clinical trials for advancing the field of chronic lymphocytic leukemia (CLL) and offers advice for patients who may be interested in a trial but don’t know where to start.

What are the different kinds of clinical trials, and why are they important?

: Clinical trials come in a lot of different flavors. They can be trials of new agents, completely novel agents that don’t yet have FDA (Food and Drug Administration) approval. And they could be drugs that are next generation. So for example, we have a BTK (Bruton tyrosine kinase) inhibitor, but ... some company might think that they have a better BTK inhibitor. There can be trials looking at treatments for relapse disease; there (can) be trials looking at initial frontline (treatments).

I think a lot of people sometimes have the misconception and anxiety of enrolling in a clinical trial because they might be treated with a placebo. That’s very rare to see in a cancer trial. I don’t think I’ve ever seen (a CLL clinical trial) in patients who need treatment where there’s any kind of assignment to a placebo.

I think it’s important for a patient to consider a clinical trial, particularly with the novel agents if they’re available. ... Think about the fact that Imbruvica (ibrutinib) completely changed the landscape for CLL. It’s really been a total game changer. Consider how long it takes to get a drug FDA approved, and that one, by the way, went really fast. What that means is that people who are on the clinical trials actually have access to the drug years before that drug becomes FDA approved. So it can really get you access to novel, great drugs before they’re even out there for the rest of the community to use.

We also have to keep in mind that clinical trials are very important because (they’re) the only way we get new drugs. Every drug that is approved by the FDA had to be tested in usually more than one clinical trial. (The phase 1 trial determines) the appropriate dose, and the second trial looks at how well people respond. And then when we go to what we call phase 3; those are the randomized trials where a patient is randomly assigned to what’s usually considered the standard of care or to the newer drug. 

There are different places along the way where we have to accumulate that trial data before it goes to the FDA for approval. That’s why people who happen to get on a great drug can have years of early access to it before it even gets approved.

Can you talk a bit more about the misconceptions that people have about clinical trials that may make them apprehensive?

I think some people have anxiety (and think), “You’re experimenting on me.” We don’t like to call it experimenting. But yes, you can think of it as the fact that you are testing out a drug that maybe has not been given to a lot of people.

If you’re (on a phase 1 trial), then yes, you are one of the first people ever to get that drug. If you’re on a phase 2 trial, you’re looking at response (to the drug): We’ve already defined the dose, we know what the dose is, we know what the (side) effects are. People did get (the drug) before you, and (it was deemed promising enough to move) forward to phase 2. By the time it gets to phase 3 — where you’re randomly comparing it to standard of care — there’s plenty of knowledge. (There’s often already publicly) presented data or published data from the prior clinical trials, so you are going into a trial to get ... a drug or combination that you (might not be able to) get outside the trial. But hopefully that’s something that will benefit you and then benefit society as a whole if (it) leads to subsequent approval of that drug.

How can patients learn more about clinical trials?

Of course the Leukemia & Lymphoma Society is a great (resource) that really helps to match up patients with trials in their area. This is one of the issues about clinical trials: It’s probably easier for patients in larger metropolitan areas to participate than it might be for someone who lives in a really rural area where they’re not that close to their medical center. They have to be able to get there.

There are certain trials where the larger centers will partner with smaller practitioners. ... In some of the cooperative groups, that hub-and-spoke model is how they operate. So for example, there are major academic centers, but then there are affiliated, much smaller centers that participate in those trials too. So cooperative group trials are sometimes easier for patients to have access to because of their design. And you don’t have to (go) to one of, say, the four centers that’s doing that trial. So that can be really helpful.

A number of different sites can be really helpful when trying to identify trials, particularly in a certain region, (because you probably don’t want) a patient who lives in Arizona (to have) to fly to New York on a weekly basis. I mean, that’s realistically not going to work. There are other trials at major centers where they have to go to the trial to enroll, but some of the treatment — particularly if it’s an oral agent that the patient takes themselves — can actually be administered at home.

So those kinds of trials, the patients do have some back and forth to the trial center, but much less than if it’s a drug that actually has to be delivered at the trial center. Some do, some don’t. There are a variety of possibilities, even for people who don’t live in highly populated metropolitan areas, to potentially (participate) in a clinical trial.

Clinical trials lead to new cancer treatments — and can give a patient access to effective drugs years before they’re made available to the public.

Clinical Trials are Fueling Medical Breakthroughs in Cancer

Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools—We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.

It is a delightful, small treat. Here I am in my comfy spot with my nail file and wooden nail stick. I am a long-term cancer survivor stealing a precious moment to tidy up my ragged fingernails. Is that sweet but a little sad? That’s what I was going for.

What I mean is — in the months and years since a cancer diagnosis, remember to practice self-care. Some of us tend to forget about self-case as we get pulled back into our busy lives and routines.

Maybe it really isn’t so bad, and maybe this is just a shoutout to the sweetness of the simple things. You know, like enjoying a sunset or watching the birds fly across the sky. Or, how about the not-so-simple (or inexpensive) things, like a mani-pedi or a two-hour massage or a long observant walk?

Why is self-care so difficult? This is about more than money. Sometimes I do make selfish choices, usually purchases to feather our nest or my wardrobe or to work on a home improvement project, but the precious gift of time for self-care? That can often be a different story for cancer survivors who are filled with anxiety and fear of recurrence. Here is how this 10-year cancer survivor would do it differently if she could go back in time:

It is OK not to be OK. After my double mastectomy, I was back at the doctor’s office a couple weeks later, not understanding why it was taking so long to heal. I think there are quite a few survivors who try to get back on their feet too quickly and then we wonder why we crash and burn or become exhausted and resentful. Sometimes it is our own fault — we quickly get back up to full speed and rush around trying to take care of everyone and everything else before we are quite healed or ready.

You know how precious it is. Please give yourself time to heal. After getting to still be here 10 years after my first cancer diagnosis, my main regret is not giving myself the gift of time. No one could have done this for me. Treat yourself to the little things and the big things. Sometimes “things” aren’t really things but intangibles that can improve our happiness — like connecting with nature or having meaningful conversations.

Time after time I have rediscovered that this just works. Even glass-is-half-empty people like me benefit from focusing on the good rather than the bad daily. Hey, you are still here. Most days I try to mentally list three things that make me feel grateful. Sometimes I put them in my journal and other times, I just think it through without writing anything down.

Even as an introvert, I think many of us have had too much alone time due to the pandemic. Lengthy alone time can get me all twisted and wrapped up in my own thoughts. Instead, helping someone else can help me heal too. Helping someone else can be more fulfilling than lengthy navel gazing. It can be a form of self-care too. Give it a try.

Finally, consider unplugging a little from our amazing electronic devices. Yes, it can be handy and distracting to have instant access to news, shows, Facebook, and more, however sometimes unplugging can be more soul healing. You know yourself best, so try and figure out what works best for you and do not be afraid to give yourself the precious gift of self-care during and after your cancer journey. You deserve this.

You know yourself best, so try and figure out what works best for you and do not be afraid to give yourself the precious gift of self-care during and after your cancer journey. You deserve this.

Cancer Survivors Must Remember to Practice Self-Care

September was named Childhood Cancer Awareness Month to draw attention to the leading cause of death by disease for children under the age of 14.

® Talks Cancer podcast, we chat with Dr. Tanja Gruber, the new chief of pediatric hematology, oncology and stem cell transplantation at Stanford Children’s Health, about how the field of pediatric cancer has evolved over the last decade and where the landscape is headed in the future, thanks to advances in treatments like immunotherapy.

Gruber also discusses the idea that late effects of treatment need to be taken into consideration when creating a therapeutic plan, and offers some advice to newly diagnosed patients and their families.

Podcasts

In this week’s episode of the CURE® Talks Cancer podcast, we chat with Dr. Tanja Gruber, the chief of pediatric hematology, oncology and stem cell transplantation at Stanford Children’s Health, about how pediatric cancer treatment is evolving thanks to advances in treatments like immunotherapy, and what parents should do after their child receives a diagnosis.

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