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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.

There is No Such Thing as a Good Brain Tumor

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Written by Molly Marco – Head for the Cure Ambassador and Anaplastic Astrocytoma Survivor

Malignant vs. Benign

As a malignant brain tumor patient, or in more understandable layman’s terms a brain cancer patient, I always struggled to find the same passion and empathy for benign brain tumor patients. It feels a bit, like, “Whatever. It’s NOT cancer, so it isn’t as deadly. It’s not the same and I’m jealous.”

I’m not entirely wrong…it’s not cancer, but I am also definitely not entirely correct. Like malignant tumors, it’s not simply a matter of type and grading. In fact, the tumor location is often just as critical if not more so than the designation of malignant or benign. An inoperable or inaccessible tumor can be just as deadly as a cancerous tumor.

All Brain Tumors Effect the Body

The whole body is important, and ideally, every single piece should be working properly. But we can often live a full life with broken bits and missing pieces. The brain itself is one of those necessary components in our body. We can function without a few pieces. We can manage depending on what pieces those are, and what they effect. Overall, all types of brain tumors are tricky and affect each person in different ways.

It’s hard for the folks without these issues to understand. A person in a wheelchair due to the side effects of a brain tumor may not necessarily have an aggressive malignant brain tumor such as a glioblastoma. Sometimes it’s a low-grade jerk in a nasty location. In contrast, the casual observer wouldn’t even notice that I have a high-grade malignant tumor because of the tumor location unless I was actively seizing and falling off a bar stool.

There are also sleeper tumors such as a Meningioma, which is for the most part a benign tumor to my knowledge. But a lot of folks won’t even know they are living with this tumor until it has grown quite large becoming deadly. If the tumor is growing in an area that makes it inoperable, there isn’t much to be done beyond radiation.

The good news is that if someone has a benign tumor in an operable location, has a good neurosurgeon, and participates in necessary rehab, they’ll likely get back to their normal lives. For example, an acoustic neuroma is another benign tumor that grows on the nerve used for balance and hearing. They can grow quite large. It can cause loss of hearing, tinnitus, feeling of having what I call “the spins” (dizziness), or blurred vision.

Recovery is Different for Everyone

My grandma had an acoustic neuroma behind one of her ears when she was in her 60s in the 1970s. She had a successful surgery and while the doctors told her it would be weeks for her recovery, she was on a plane and traveling to Argentina just two weeks later. However, some acoustic neuroma patients may need more rehab depending on size and location of the tumor. Kelly Stafford, wife of Detroit Lions’ Matthew Stafford, was diagnosed recently with the same tumor, and had a 12 hour surgery. Recovery takes some time. Her balance was off. She still had to deal with dizziness. It’s not easy for anyone to go through brain tumor treatments, and no two patient’s treatments are the exact same.

It’s important to understand that while not all brain tumors are cancer, that doesn’t make them a fun walk in the park in comparison.

There are No Good Tumors

I remember learning that my brain tumor was a “middle of the road” malignant tumor, an anaplastic astrocytoma. There’s no real fix, and “Middle of the road” still stinks. It’s supposed to come back and get me at some point, either as itself as a recurrence or heightened as a GBM. I learned that a lot of other patients are weirdly told similar things like, “You have the good one”, if they have a low-grade Oligodendroglioma. What’s weird is that I know patients with “the bad one”, a GBM, who have outlived patients with “the good one” or the “middle of the road” tumors. There is no “good” brain tumor. Benign brain tumors aren’t “the good kind.” I mean, if I had to pick, I’d still rather have a non-terminal, fully operable, benign brain tumor over a terminal malignant one.

ALL brain tumors suck in different ways. They take up space they don’t own. I don’t like it. You shouldn’t either.

Staying Strong as a Caregiver: The Year of Firsts

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

From the second your loved one gets diagnosed with brain cancer your world is turned upside down. From that point on, your life will be a new kind of “normal.” There are many aspects outside of daily life that will be different; one of them being celebrations and holidays. The first year after your loved one gets diagnosed, you will see these special days in a different way and getting through them is different as well.

When my mom was diagnosed with a Glioblastoma in March of 2016, it was a week before her 50th birthday. We had been planning a surprise party for her, but life had other surprises in store for us. We shifted around a few things, but we were able to have a little party for her in the hospital as she was recovering from surgery and in physical therapy. We still made it a special day, despite the changes in our lives.

We also celebrated my birthday, as well as my stepdad’s, and Thanksgiving when my mom was in treatment. Celebrating these holidays while a loved one is going through a disease like this is hard, but it also makes you look at them with a different perspective. We didn’t know if it was going to be her last few holidays with us, so we made the most of each and every one of them.

The hardest part for my family and I each year is Thanksgiving through Christmas. Those should be the holidays where you are the happiest, but it has been the toughest part of the year for us by far. My mom was in hospice for Thanksgiving and passed a few weeks later on December 10th. We were so thankful we had family come into town that year for Thanksgiving and be by our side for the hardest part of our lives.

Christmas was my mom’s favorite holiday and she decorated our house every year. After her passing, we weren’t sure if we wanted to hang up decorations. It was hard, but we put up the Christmas tree anyways and attempted to make it look like she would have. My brother, stepdad, and I did our best, and I think that was a good starting point in the grief process. It was the first major holiday after her passing, and we got through it together as a family.

The first year after your loved one’s diagnosis or passing is simply put, hard. Especially when it intertwines in the grieving process. For me, I mentally checked each holiday and birthday off a list after my mom passed, and after the first year, I felt like I had a weight off my shoulders. I thought if I can make it through the first year of all these special moments in my life without my mom, I could keep doing it. It makes you stronger as a whole and also makes you lean on your family members more.

Holidays and birthdays have been different since my mom’s passing, but I’m starting new traditions with my family and friends. The celebrations are a little bittersweet, but it also makes them a little more special. As a caregiver, you sometimes feel bad for celebrating these types of days when your loved one is going through this horrible disease, but you shouldn’t. If you weren’t going through this situation, you would still be celebrating birthdays or holidays, so why would this make it any different? This disease puts a new perspective on life, and you should celebrate that to the fullest.

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.

Genome Sequencing as a part of Brain Cancer Treatment

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DNA tests have become more and more popular to determine hereditary traits, ancestry, food sensitivity, and even to find out your dog’s exact breed. Now, some doctors are using genome sequencing as a more common practice to help treat brain tumors and brain cancer.

What is a genome?

A genome is the complete set of genes or genetic material present in a cell or organism.

What is genome sequencing?

Genome sequencing is determining the order of DNA bases (As, Ts, Cs, Gs) that make up an organism.

What are the benefits to genome sequencing?

Genome sequencing can help determine a targeted therapy for tumors or cancer treatment based on a patient’s specific genetic make-up. A certain gene mutation could determine a better course of treatment for one patient versus another. For tumor genome sequencing, both tissue from the tumor and healthy tissue is taken during surgery or a biopsy so the genetic make-up can be compared.

Making Genome Sequencing Part of Standard of Care

In collaboration with other institutions, the University of Michigan’s C.S. Mott Children’s Hospital is leading studies of the benefits of genome sequencing for pediatric cancer cases, and especially for brain cancer. “Brain cancer is the leading cause of cancer death among children. We have to shift the paradigm in how we manage these cases. Younger patients with high risk or relapsed brain cancer urgently need novel effective therapies based on the unique biology of each child’s specific tumor,” Carl Koschmann, M.D.

It is a large task to commit to genomic testing, but the results can isolate genetic mutations that could be helping the cancer grow, and could help determine a better treatment plan specific to each patient.

Sequencing Plays Role in Treating High Risk Pediatric Brain Tumors

Tumor DNA Sequencing in Cancer Treatment