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Jenguin’s Journey – Facing a Different Front: Winning the First Battle & Defeating the Enemy

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Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador

2020 has quickly become a year we will never forget. Months of quarantine have left us eager to get outside, and we fondly remember large gatherings from previous years. In the brain tumor community, it’s been a little disappointing that our usual events and 5Ks have turned virtual this year. I’ve been involved with the Head for the Cure Chicago 5K since 2015, which has directly benefitted my medical center and doctor every year since.

And in June of last year, I decided to travel over five hours to meet up with my siblings in St. Louis. We walked the 5K there to honor our dad who passed away from the same type of tumor that I’m currently fighting. It was a spectacular day despite the rain, and I have a feeling it will continue to be a tradition for me and my sisters.

It seemed only fitting that on the one-year mark of that day, I would have a follow-up MRI. Wearing the gray survivor shirt from that race and a cheery penguin mask, I bravely headed into the hospital, forced to leave my boyfriend behind at the entrance. It had been two months since I started a new course of chemotherapy, and I tried to imagine the damage it dealt to the tumor in my head as I navigated my way downstairs to the highly magnetic area marked with warning signs and into the noisy MRI machine.

Afterwards, we headed home to prepare for a video visit with my doctor to find out the results. Although she was starting to see patients in person again, I was not one of them. I was considered high risk, with depleted blood counts from the previous week to prove it. We kept our fingers crossed until the doctor appeared on my computer screen with the news we were waiting for. Comparing before and after pictures of my brain over video, we saw that the tumor was clearly wounded from this first battle. This meant the only thing standing in between me and another round of chemo was a low neutrophil (white blood cell) count, which I was having re-checked in my weekly counts the following day.

A couple vials of blood and a phone call revealed that my neutrophils were better than ever—doubling in a matter of seven days. I knew this was excellent news, but it also meant it was time for another round of cancer-killing toxins. I can’t say I’m looking forward to receiving this ammunition in the mail (and in my body), but I am looking forward to delivering another fatal eight-week blow to the unwelcome enemy in my head.

Navigating Telehealth During a Pandemic

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The Neuro-Oncology Branch of the National Cancer Institute and Wilmot Cancer Institute of the University of Rochester presented their webinar “Navigating Brain and Spine Tumor Care through Telehealth” on Friday, June 19th.

This webinar covered a variety of topics surrounding telehealth as many brain tumor patients are finding themselves exploring the options of telehealth for their treatment while staying safe during the COVID-19 pandemic.

Watch the full webinar on YouTube

What are the Types of Telehealth Visits?

  • Live Video Conferencing – Using a software like Zoom or Skype you can have a live conversation with members of your medical team.
  • Recorded Visits – Sending previously recorded visits with other medical team members to your primary doctor for review.
  • Remote Patient Monitoring – Typically used for patients needing cardiac, epilepsy, or sleep monitoring while at home.
  • Mobile Health – Using mobile devices to communicate with medical team.

Patients may choose to use one or more of these types of telehealth visits for multiple reasons including;

  • Convenience – Ability for patients to stay home and still see their doctors.
  • Cost – Depending on insurance coverage these visits could save the patient money.
  • Access – Patients may be able to see their team more easily with the help of telehealth.
  • Engagement – Telehealth could improve patients’ engagement and management of chronic conditions.

Dr. Nimish Mohile, Neuro-oncologist at Wilmot Cancer Institute, commented that he can get to know his patients on a more personal level with telehealth because he gets to see a patient’s home and in a comfortable space unlike in a doctor’s office.

There are great advantages to telehealth visits, but there can be some disadvantages as well.

  • Visits – If a patient is seeing their doctor in-person and via telehealth, the number of interactions are increasing meaning the cost may increase as well.
  • Technology – Any barriers or issues from technology could make a telehealth visit unbeneficial.
  • Insurance – Coverage for telehealth visits has been a “gray area”.
  • Physical – A full exam is not possible via telehealth

Preparing For a Telehealth Visit

  • Test Your Equipment – Make sure that both the microphone and camera are working on your laptop, tablet, mobile device.
  • Connect your device to a power source
  • Use wired internet connection when available
  • Close any unnecessary applications open on your device to ensure a clean connection
  • Location – Choose a room in your house/apartment that is well-lit
  • List out any questions and needed information before your visit begins
  • Keep a list of medications, including dosage and frequency, handy for the visit

Once the visit begins, be sure to let your medical team know if there are any issues on your end or theirs with video or audio. A member of your team may ask a patient to walk around the room or make different motions with their face, hands, arms, legs, etc., so be sure your room has enough space to move around safely and in view of the camera.

Some doctors will allow your family or friends to be a part of the visit on their own device if they do not live with you. Check with your team before inviting anyone to join your next visit.

What Can Be Examined With Telehealth?

Not all aspects of a normal visit with a doctor can be accomplished via telehealth, but there is a lot that can be covered.

Neurological Exams

  • Eye movements
  • Facial weakness
  • Strength
  • Walking and coordination

Assessing Cognition

  • Memory
  • Attention
  • Concentration
  • Language

Observation

  • Rashes
  • Thrush
  • Surgical scar
  • Swelling

The following items doctors are unable to assess during a telehealth visit and may require an in-person appointment.

  • Hearing and vision
  • Listening to a patient’s heart and lungs
  • Assessing weakness
  • Checking reflexes
  • Checking for abnormalities in sensation
  • Feeling areas of swelling

For more information and resources about telehealth visits watch the full webinar above or read “What You Need to Know About a Virtual Doctor Visit“.

Jenguin’s Journey – Facing a Different Front: Eating for Battle

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Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador

For us brain cancer patients, it’s enough to be told to start chemotherapy to combat a growing tumor. But on top of it all, while in treatment, I’m forced to change my diet because of one of the chemo drugs. Since I’ve done this treatment before, I’ve already done my homework.

Procarbazine, the P in PCV chemotherapy, is what’s called a MAOI, or monoamine oxidase inhibitor. These types of drugs hinder the ability of a couple enzymes that help us break down an amino acid called tyramine. And if this amino acid builds up too much in our bodies, it can raise blood pressure dangerously high, which could lead to stroke. I have enough going on in my brain as it is, so if I have to say goodbye to eating some of my favorite foods for the time being, so be it.

Since being diagnosed, I’ve tried a few different meal plans. Initially, I cut out meat, then slowly introduced it back in, trying to limit red meat. Later on, I discovered juicing and all the benefits of flooding my system with the nutrients it brings. It’s like giving ammo to my little immune warriors to deliver a fatal blow to the tumor.

I started dating my boyfriend five years ago, when I first did PCV. My restricted diet made our dates at restaurants fairly interesting. My options were limited, and it seemed everything I felt like eating had one of these tyramine-rich ingredients in it:

  • Soy sauce (teriyaki sauce included)
  • Aged cheeses (including cheddar, swiss, provolone)
  • Fermented foods (especially miso, tofu and pretty much any Korean cuisine)

Not to mention the fact that my boyfriend is Korean, and we both enjoy Asian cuisine. The weekend before I started Procarbazine this year, we went on a culinary splurge. Saturday’s dinner was from our favorite ramen restaurant, and Sunday’s was soondubu, a delicious spicy tofu soup from Korea. Thankfully these foods were available for takeout during the pandemic.

Until these diet restrictions are lifted for the next year (or longer), I can still enjoy some other favorites. As a Chicagoan, I love my hometown deep dish pizza, which thankfully uses mozzarella (a fresh cheese). There’s also crab legs for special occasions, and as a special treat, I’m allowed my ultimate vice: ice cream (and frozen custard).

When telling some of my friends about my diet restrictions, they tell me they could not bear to give up some of those things, especially wine and beer, which I have been known to enjoy a glass on very special occasions. But for me, the temporary limitations are worth not risking a stroke, and definitely worth winning this ongoing battle with cancer.

Jenguin’s Journey – Facing a Different Front: Dodging Side Effects During Battle

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Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador

Watching TV, you’re bound to see one of those commercials for a pharmaceutical drug where they list out the side effects, and somewhere in that fast blurb of side effects, you might overhear the words “…which is serious and may result in death.” You might think, “Why would anyone take that medication?!” I think about that sometimes. I’m taking a couple of drugs that come with some pretty awful side effects, but sometimes it’s worth it when the disease you’re dealing with could take your life.

Jenny’s Side Effects

I’ve been tired. I’ve been queasy. I now take an anti-nausea medication to help me cope with the queasiness, but that comes with its own side effects that I have to manage with over-the-counter laxatives, which also might have some side effects. It seems to be a never-ending loop of ailments, and that in itself is exhausting.

This week, I received an antacid to help with some reflux I had been experiencing. After my first dose and some dinner, I felt hot and incredibly itchy. Looking down at my legs, I noticed some red blotches. My entire body had turned into a minefield of hot spots, tempting me to itch them. It soon became clear that I was having an allergic reaction, and the thought of going to the emergency room during a pandemic drove me into a state of panic.

I did whatever I could to keep the explosive itching at bay while staying home. The next day was filled with around-the-clock Benadryl, phone calls with nurses and rest. 48 hours after it all began, I was itch-free and glad to have dodged a visit to the ER.

Next Blood Check

Life as usual continued with my weekly blood check at the local somewhat-empty hospital. I recounted my itchy experience with the oncologist over the phone when he called me with my lab test results. Despite my unfortunate reaction to the antacid, my blood counts remained stable. A bit on the low end, but nothing to warrant any action. I happily took this small victory in what seems to be a long battle.

Breaking Down a Glioblastoma Diagnosis

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Written by Head for the Cure Ambassador, Dr. Simon Khagi.

Dr. Khagi is an Assistant Professor of Medicine and Neurosurgery at the University of North Carolina, Director of the UNC Neuro-Oncology Program, and the Director of the UNC Brain Metastases Program.

Everyone approaches the diagnosis of a brain tumor in their own unique way. After being told of their diagnosis, patients with a glioblastoma can have a range of emotions. If they had prior knowledge of their disease before meeting me for the first time, they may have already taken the time to “Google” what this may mean to them. However, each individual glioblastoma can be as different and unique as the patient that is diagnosed with it.

A glioblastoma (GBM) is a cancer. Occasionally, these may be referred to as tumors. However, the word tumor implies a very different biology and can be disingenuous to the actual implications of being diagnosed with a GBM. Many patients may hear the word tumor and think that it can be readily removed given that it’s distinct and separate from the rest of the brain. The biology of a GBM varies greatly from one patient to another, but we know that these cancers are by no means confined to a solitary ball of cells that slowly gets larger. A GBM has the propensity to spread and diffusely infiltrate various parts of the brain. These areas of disease may not be readily apparent on a brain scan.

Imaging

When patients first present with their symptoms, some form of brain imaging is obtained to determine the cause of their complaints. It may start out with a computer tomography (CT) scan followed by a magnetic resonance imaging (MRI) scan. The diagnosis of a GBM cannot be made based on imaging alone; in fact, many times doctors may need to scan the entire body to rule out the possibility that a brain lesion is not part of a metastatic cancer arising from a different organ. If there are no other areas of disease within the body, the likelihood that the brain lesion represents a GBM is much higher. However, obtaining tissue is key in determining any further course of action.

Surgery

After being given medications for their symptoms (usually steroids with or without antiseizure medications), patients will likely meet with a neurosurgeon to discuss next steps. Ideally, the neurosurgeon they’re meeting has some expertise in the removal of brain tumors. Depending on the expertise of the surgeon, the location of the disease, and the physical fitness of the patient, either a biopsy or a more extensive resection is performed. Studies have shown that more extensive resections can lead to longer survival for patients with GBM. However, a surgeon, no matter how skilled, can never “get it all” given that, even at diagnosis, the disease has diffusely spread beyond what can be visualized during the surgery. 

Making the Diagnosis

After acquiring the tissue sample, a diagnosis can be made by a pathologist. However, that is only the beginning of how we define a GBM. In the past 20 years, there has been an extensive amount of research that has yielded insights into the “genetic drivers” of GBM. These are not the genetics of the patient, but rather of the disease itself. In a way, a GBM is a separate entity from the patient—almost like another person with their own set of genes that is potentiating its own existence. Among the more standard genes that we look at is isocitrate dehydrogenase (IDH), methylguanine methyltransferase (MGMT), and telomerase reverse transcriptase (TERT). Alterations in these genes yield important insights into the potential behavior of the disease, with the MGMT gene alterations predicting either a good or inadequate response to chemotherapy and radiation.

Next Steps

After discharge from the hospital, patients will meet the team that will be taking care of them moving forward. This team is usually comprised of a medical oncologist or a neuro-oncologist, as well as a radiation oncologist. Other members of the team may include a nurse navigator and advanced practice provider (i.e. nurse practitioner or a physician assistant). The initial meeting can be overwhelming, but sets the foundation for how a treatment plan will be formulated. Further genetic testing may be discussed and requested, with these results offering even more insight into the biological behavior of the disease and potential options for novel treatment strategies. It is important to consider the expertise of the team that is taking care of the patient. Clinicians with significant experience in the management of GBM should be a part of the treatment team; particularly, a fellowship-trained neuro-oncologist can provide significant insight regarding novel treatments, management of neurological complications, and clinical trial options. 

Centers with Clinical Trials

Clinical trials play an incredibly important role in the management of GBM. Being plugged into a center with clinical trial options at the time of diagnosis is ideal. If that isn’t an option, then having access to a center with clinical trial options at the time of disease recurrence is the next best thing. In the absence of a clinical trial at the time of diagnosis, a patient could be offered chemotherapy combined with radiation. After the completion of this combined course of therapy, maintenance chemotherapy combined with a device called Optune® may also be recommended.

Chemotherapy and Radiation

The role of chemotherapy and radiation in GBM has been established from clinical trials done almost 20 years ago, which showed a survival advantage in those patients who had chemotherapy combined with radiation versus radiation alone. The theorized mechanism of action of chemotherapy and radiation is that, when combined, the two treatments lead to DNA damage in tumor cells. If a tumor cell has damaged DNA, that cell will stop replicating and potentially die. The hope is these treatments kill off enough tumor cells and leave healthy cells alone, which would lead to a prolonged period of survival and minimal side effects for these patients.

Chemotherapy prescribed after this combination form of treatment entails taking it 5 days on and 23 days off. We call this a 28-day cycle and are repeated 6 to 12 times depending on the rationale of the treating physician. This is meant to keep the tumor from dividing; however, tumor cells may not be dying and, instead, are being kept from dividing. The addition of Optune® is also considered.

What is Optune®?

Optune®, otherwise known as tumor treating fields, is a first-of-its-kind device that is applied externally to a shaved scalp. It uses rapidly alternating electromagnetic fields (similar to radio waves) to interfere with the process of cell division. It is meant to only impact those cells that are rapidly dividing (i.e. cancer cells) and leave normal brain cells alone. In a large randomized clinical trial, the combination of Optune® and chemotherapy yielded a survival advantage compared to just chemotherapy alone.

Additional Chemotherapy

In select patients with glioblastoma who have a poorly functioning MGMT gene (i.e. methylated), there is emerging evidence that the combination of two types of chemotherapy might be more effective than one chemotherapy alone. A study out of Germany evaluated the addition of lomustine (CCNU) and temozolomide (TMZ) with radiation, followed by 42-day cycles of CCNU and TMZ, compared to the standard regimen (described above), and found that the combination prolonged survival significantly. This regimen did not include the use of Optune®. The explanation behind these promising results is that the more chemotherapy a particularly sensitive GBM sees, the better. Of course, tolerance needs to be considered when recommending such a regimen and age plays an important factor in recommending this kind of treatment approach.

Patient’s Age

Age is a very important factor when considering therapy for GBM. Given that the disease afflicts mainly people over the age of 60, a physician needs to take in to account other medical problems of the patient and their baseline “fitness” (i.e. performance status) when deciding on a course of action. For very frail patients, sometimes the best course of action is a short course of radiation or perhaps chemotherapy alone. In others, an abbreviated (i.e. 3 week) combination can be tolerable, as demonstrated in a recent clinical trial in patients over the age of 65. When treating GBM it is very important to listen to the patient and family, and really understand how they feel about potentially losing some quality of life in pursuit of a minimal amount of quantity of life. Values are important.

Importance of Clinical Trials 

Another important aspect of care to consider are clinical trials. The field of neuro-oncology is rapidly evolving and new ways of treating cancer are being tested. Some clinical trials are looking to make radiation even more potent. Other studies are assessing how best to implement immunotherapy by inducing immunological memory through peptide and DNA vaccines. And still others are looking to infect cancer cells with viruses and further stimulate the immune system with medicines that activate a robust response against the virally-infected cancer. There are hundreds of studies that are being run across the country. Any patient who is diagnosed with a GBM, should start the process early in identifying potential studies and inquiring with the center that is running the study about enrollment eligibility. There are lots of caveats to enrollment. Be sure to check out my previous post about clinical trials to understand what to expect and what questions to ask.

Empowering Patients

Living with a GBM is a journey. Along this journey, I recommend to all my patients that they educate themselves about their disease, treatment options, and potential clinical trials for the future. I consider myself a guide in the process and I hope to empower my patients to make informed decisions about their care, to balance the quality-quantity of life equation, and to be advocates for themselves.