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Clinical Trials Represent the Pinnacle of Medicine

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Dr. Roy Jensen: Director, The University of Kansas Cancer Center
Director, Kansas Masonic Cancer Research Institute

I think clinical trials really represent the pinnacle of medicine. And the way that you go about designing a trial, implementing a trial, you know the first step is to determine what is the standard of care for this particular condition. And that is option one.

You’re basically guaranteed that you are going to have the best thinking up until this point helping to design and influence your care. So that’s the first thing.

The second thing is that we’re nowhere near where we need to be in terms of the efficacy of our care and what we’re doing for brain cancer patients in particular.

It is a tough, tough diagnosis with a really hard road of hope. If we’re going to make progress, then we have to treat everybody according to the best possible care that we know and then try something new.

If we keep trying the same approach over and over we’re never going to make any progress.

Clinical trials are all about the possibility of us making progress. And while the ultimate prognosis remains very tough we have made progress. Radiation therapy has evolved. The introduction of Temozolomide has significantly extended life. We have made huge strides in terms of supportive care to improve the quality of life for individuals diagnosed with brain cancer.

And all of that was made possible by clinical trials.

Stress and Burnout in Brain Tumor Caregivers

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When a loved one gets a brain tumor diagnosis, someone must step into the crucial role of caregiver. This is a brave step to take, full of its own stresses and challenges, in addition to sharing in much of the stress that the patient is under. And while caregivers are understandably focused on putting the health and well-being of their loved one first, they’re often not prepared for just how hard their own road will be.

Caregiver stress syndrome, sometimes called caregiver burnout, is a form of chronic stress, which may show up in the form of physical, mental, and emotional exhaustion. It may take the form of anxiety and depression. 

Two older adults in fleece jackets, holding arms as they walk down the street.
Caregivers are an invaluable part of the brain tumor community. For anyone taking on this stressful role, remember that connecting with people, finding space for yourself, and keeping perspective can help you keep your head above water. Photo by Jack Finnigan on Unsplash

And if you’re starting to feel this way, it’s important to understand that a) this is common and normal, b) you’re not a failure or a bad person if you’re experiencing it, and c) there are ways of coping beyond silent suffering. Whether you have early signs of caregiver stress, or you’ve been dealing with it for a while, you can still stop the spiral, stay connected to other people, and not lose yourself. 

So why does caregiver stress happen? It’s easy to tell ourselves at first that nothing is more important than doing everything we can for our loved one while they’re in the trial of their life. Yet even when you deeply believe in what you’re doing, it can take all that you have to give and more. Better understanding of the road ahead can help you be ready.

Causes

Some of the causes, according to the Cleveland Clinic: 

Role confusion: It can be difficult for a person to separate her role as caregiver from her role as spouse, lover, child, friend or another close relationship. Caregiving may become the primary dimension of the relationship and you may feel like your needs from the relationship have been lost.

Unrealistic expectations: You may expect that caregiving will be a duty that makes you happy. But in many cases it can make you sad or stressed or angry, especially if your loved one’s state is worsening. 

Lack of control: Caregiving comes down to directing resources for a loved ones care. Often caregivers find that the resources they need, whether money, time, knowledge, assistance, and good advice, can’t be found. 

Excessive demands: No one person can do everything, but often caregivers feel like they’re expected to be a superhero. This expectation can come from yourself, from the patient, or from other loved ones and supporters. But nobody can do it all and trying to may lead to consistent feelings of failure.  

Prevention

Whether you recognize symptoms of caregiver stress or not, it’s always worthwhile to do some things that prioritize your own well-being as well as your loved one’s. 

  • Talk about your stresses, fears, and frustrations with someone you trust. 
  • Accept help. Look to cancer organizations, churches, support groups, and groups of friends and family. Don’t be afraid to ask — people care about you and want to help.
  • Be realistic. While it’s important to hold on to hope, remember that whether your loved one gets better or not is mostly out of your hands. 
  • Set aside time for you. Taking care of yourself doesn’t stop just because you’re taking care of somebody else. Not only are you allowed to do something just because it makes you happy—it’s important to do so.
  • Set your own health goals. Think about the foods and activities that will keep you strong and positive, and figure out how to get those on a regular basis. Share your goals with supporters and allow them to help you. 
  • Go to a professional. A counselor, therapist, social worker, or clergy member will understand what you’re going through and will be happy to provide a nonjudgemental ear.
  • Join a group. Sometimes it can feel like you’re the only person in the world who knows your situation, but there are others walking the same road. So don’t walk alone. 

Acts of Kindness: Remembering Steve Damm

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10 years ago, family and friends gathered to celebrate what would have been Steve Damm’s 41st birthday. They released balloons with personal notes to celebrate his life after he passed away from a glioblastoma.

The next year, Tyra, Steve’s wife, and their two children had a cake, but they weren’t sure how to celebrate. “And then it was weird. It was a sad day and we were like it’s really horrible to have a birthday when the person’s not there. And we didn’t know what to do,” said Tyra.

That birthday inspired the next birthday and the several after. On what would have been Steve’s 43rd birthday, the Damm family created “43 Acts of Kindness”. They were concerned they may not be able to complete the task, but through the power of social media, they had more than 400 acts of kindness that year.

Each year this tradition continues in Frisco, Texas, and even across the country and globe. Whether you purchase a stranger coffee or lunch, make a generous donation, or deliver a friendly card, the point is to simply be kind to others.

Along with the Damm Family and Head for the Cure, Brains for the Cure encourages you to be #DammKind today in support of Steve, his family and friends, and all those who have been affected by brain tumors.

Today is Steve Damm’s 51st birthday. Help celebrate his life and legacy by spreading kindness, even if it’s just one act. You can learn more about today’s celebration on the Check on Steve blog.

Staying Strong as a Caregiver: Day to Day Life Changes

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Written by: Courtney Benisch – Regional Relationship Coordinator for Head for the Cure

Once you become a caregiver, your life changes instantly. Roles will reverse in the household and it will change the way you go about doing things day to day. As a 23-year-old caregiver, I made a drastic life change after my mom was diagnosed with a Glioblastoma in 2016: I immediately moved back in with my parents to help take care of her. Thankfully, my step-dad, brother, and I all had jobs that were flexible and allowed us to spend as much time with my mom as we could.

Suddenly your life is filled with doctor’s appointments, therapy appointments, and your “normal” life schedule isn’t so “normal” anymore. You learn more medical terms in a few doctor’s appointments than you would ever expect to in a lifetime. I learned more about short-term and long-term disability, and what Explanation of Benefits were in a matter of one phone call than I expected to before I was 50. I remember telling my mom’s best friend that my brother and I doubled our age seconds after my mom was diagnosed.

Since I lived with my parents again, yes that meant home cooked meals, but it also meant learning all the names of the different medications my mom was now taking: chemotherapy pills, anti-nausea pills to offset the chemo, steroids, blood thinners, the list goes on and on. Plus, you have to recite those and the dosages every time you go into a doctor’s visit. Did I mention knowing the side effects, too? My mom developed blood clots from one of her chemotherapy treatments, and we had to constantly check for the symptoms. She did unfortunately develop them, and we had to go to the emergency room at 4am one morning because it was so bad.

Due to the location of the tumor in my mom’s brain, she had to attend physical therapy and occupational therapy throughout her treatment. My step-dad and I would take turns taking her to these so the other could do things around the house, catch up on work, or even take a nap. My mom had severe balance issues, so the physical therapy was supposed to help her regain strength in her legs and better her balance. She was dependent on holding onto something while walking, whether it was a walker, the kitchen counter, or our hand.

Brain tumors are unlike any other tumor due to the nature of their location. Where they are in the brain has a huge effect on a person’s functions more than any other tumor would.  Occupational therapy was needed because my mom’s memory loss and lack of cognition. We weren’t sure if she was going to remember how to brush her teeth or take a shower, so that’s what OT helped with. She had homework to do after each visit, just like I had homework growing up after school.

As a caregiver you live through everything the patient is going through day in and day out. For me, that still is the hardest part. You cognitively see how this disease affects a person drastically. The biggest change for me was my perspective on life. I woke up every morning not knowing if it was going to be the last day with my mom, and that changes you. You realize life is way too short to sweat the small stuff and you can’t plan your life years out. Everyone who knew my mom enjoyed each day with her as they could, and I know we all cherish that to this day.

As I mentioned in my previous article, being a caregiver doesn’t stop. You will carry that title for the rest of your life, and you should do so with pride. You honored your loved one in the best way possible, just being there for them through thick and thin. Whether your loved one is here with us today or has passed, they know that you did the best you could during a very difficult time.

Brains for the Cure is a different kind of resource for patients and caregivers and it is helping people adjust to their new “normal” life the best they can. If I knew about it when my mom was sick, it would have made things a lot easier on us. The Patient Resource Guide is an amazing item that BFTC created and it can help you in so many ways. It gives you definitions for all the medical terms that come into your life, it has a space to write any notes the doctor may give you, and more. You can print out your own guide here.

Optune® Ambassador Program – Patient Story – Ashley M.J.

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Written by Optune® Ambassador Ashley M.J.

Hello everyone, my name is Ashley. If I had to describe myself in one word, it would be “grateful”. I love my faith. I love my family. I love my life. I intend to do everything possibly to keep it that way. I’d like to take this opportunity to thank Novocure for making it possible for me to share my story with you today.

Though I live in Texas now, I was raised in a traditional Southern home in L.A.–that’s lower Alabama, as the locals call it. My parents chose for Mom to be at home full-time raising my two sisters and me while Dad ran his shrimp boats. We were not a wealthy family, but my sisters and I never knew–our parents and grandparents doted on us so much!

I’ve always been a very active person. Heavier subjects bored me in school–I was one of the kids in drama club and band! I was and have continued to be involved in my church and Rotary club. Any time I had the opportunity to be a part of a community or team, I would take it.

Speaking of teams, I am a huge football fan. My favorite college team is the Crimson Tide–Roll Tide Roll! If it’s Alabama or the Dallas Cowboys playing, don’t you dare get between me and the TV! Much of the time, I don’t pay a lot of attention to what the referees are saying, but I enjoy it. I don’t have to know the rules of football to have fun. I just enjoy it. I’ve learned that with enough determination, you can choose to enjoy just about anything.

After high school, I raised four perfectly imperfect children–primarily as a single parent–and that was challenging. But I do my best to face difficulties with grace and determination. Far from perfect myself, I know how to take a difficult and painful situation and change it for the better. In the classic book Pollyanna, it’s called the “Glad Game”. I made sure my kids knew how to play it, too. It’s hard to believe they’re all grown up now.

Just a few winters ago, I was at a stoplight in my Chevy pickup and another driver ran a red light and hit me. My dad had given me that truck years before, and I’d named it Precious–I name things sometimes. In that accident, Precious saved my life, but I sustained a concussion from the impact.

The initial MRI/DTI indicated only that injury and nothing else, but a later MRI showed a tumor. That was a tough conversation; my physician assistant and I both cried while she told me. We sat knee to knee in a dimly lit exam room. She said, “Ashley, I’ve never had to say this to a patient before. But there was a radiologist watching your MRI. There’s something there. It could be cancer.”

After that, I didn’t really have enough time to process everything. I was immediately placed in a cocoon of safety at the hospital. After imaging, I was admitted. I felt insulated and protected. I underwent surgery, truly never fearing what the biopsy might reveal or what the outcome might be. The tough part came when I had to call my kids and my parents to tell them, and that was hard.

I was told very gently at my post-op that the tumor wasn’t benign. I appreciated that. How could you look at someone with 30 staples in her head and say, “It’s malignant, and we didn’t get all of it during the operation,” and not feel awful about it? I was diagnosed with grade 4 brain cancer–glioblastoma, or GBM. I started radiation and chemo.

I prayed a lot throughout the whole period. A lot. I was 54 years old by that point, which I knew was something to celebrate. I kept thinking how wonderful it would be if I got another 54. Then something interesting showed up in the news; the Chicago Cubs had won the pennant for the first time in 108 years, which, if you’re counting, is 54 times two. That reminded me to hold on to hope because crazy things really do happen sometimes! I may not get another 54 years–very few people live to be 108, but I thought that was pretty neat!

The surgeons were unable to remove the whole tumor. I began radiation and temozolomide (TMZ) but my radiation oncologist also decided to tell me about Optune, a wearable, portable FDA-approved treatment for GBM in adult patients. Before beginning treatment, we talked about the potential benefits and side effects. But I trust my medical team. I was ready to try it!

Shaving my head was quite the experience. My hair has always been one of my vanities; it was thick, blond, and below my shoulders. I really liked my hair, but I knew shaving it was something I had to do in order to use Optune. nCompass™ support at Novocure provided an electric shaver, and a friend of mine who is a hairstylist took care of it for me. It’s gone–on array change days, my bald head is very apparent. On the bright side, showers are much quicker now. See? I’m playing the “Glad Game!”

Learning to use Optune was an adjustment for me in every way. For a while, I was on TMZ and Optune at the same time, but during a later MRI, imaging found three new spots on my brain. My doctor decided that for me, the TMZ wasn’t doing its job. We moved to other treatments and continued with Oputne, which I had already come to appreciate.

Remember when I told you I name things? I named this Optune Hope. She goes everywhere with me. I wear special hats to protect her from rain and the Texas sun when I’m out, and someone is always available to change her arrays for me. All of my kids are grown now, but two of them have chosen to live with me, and they are a huge help. I even have a carabiner rigged by the toilet, so I can hang her there when nature calls. If I’m in a public restroom, I drape the cord over the back of my neck and hold her out and away from me. These aren’t difficult adjustments to make, but they sometimes take consideration and planning.

I no longer drive and have tapered off some of my community involvement. The loss of independence I’ve experienced because of my condition can be frustrating. I’ve always been a giver and extremely self-sufficient, so it’s been a challenge for me to ask for and accept help from others. But I am grateful to be alive and have the opportunity to spend more time with those I love.

I am selective with my activities, choosing to engage in things that make a difference to others and bring me joy. With my doctor’s permission, I remain active in my church and Rotary club and view city council meetings live via online streaming. I’ve lived in the same house for almost three decades, so I have a strong network of truly good people who get me where I need to go and bring me positive energy.

I am continuing to learn how to practice self-care. In my quest to improve my overall health, I work with a dietitian to make healthier food choices. One room in my home is now devoted to yoga and free weights, which I do with the okay from my doctor. I would be remiss if I stated any of this is easy, but I don’t mind the effort!

The team at Novocure has been uplifting and positive throughout my treatment. My nCompass™ Device Support Specialist (DSS) visits me monthly to check in with me, and my nCompass™ care coordinator calls regularly to help me reorder supplies if I need them.

It is important that people use Optune as much as possible, and the percentage of time they spend doing this is referred to as their monthly usage. My doctor mentioned that Optune is recommended to be used at least 75 percent of the time, which translates to 18 hours a day, including time spent sleeping. My DSS tracks my monthly usage reports. As far as side effects, I did have some skin irritation, which I managed with help from my doctor. On array change days, I dry brush my scalp and apply coconut oil to keep the area moisturized, being sure to thoroughly wash it off and dry my scalp before replacing the arrays.

Sometimes people ask me what I’m wearing on my head, and I just explain to them that it’s a treatment for brain cancer. I don’t mind talking about it. I’ve had folks ask me if it’s a cool cap–I don’t even know what that is. I explained to my four-year-old grandson that I’ve got a boo-boo on my head, and this could help.

My life with GBM is very different, but it’s very good. I choose to enjoy it. I fill my life with good things and positivity. When I was discharged from the hospital after my operation, a physician assistant told me, “You’re not gonna break, Ashley! Live your life!” More recently, another specialist said to me regarding my treatment plan, “We’re not outta bullets.” I just loved that. It seems that since my diagnosis, others around me are playing the “Glad Game”, too.

I love my faith. I love my family. I love my life. I intend to do everything possible to keep it that way.

Thank you.