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What COVID-19 means for cancer patients: Roundup

April 3, 2020 by Hayley Anthony

National Cancer Institute: What People with Cancer Should Know

The National Cancer Institute, the federal government’s leading cancer division, has released a set of guidelines and frequently asked questions. They cover topics like whether cancer patients are at elevated risk, ways cancer patients can protect themselves, and what questions you should ask your medical providers and clinical trial research teams.

https://www.cancer.gov/contact/emergency-preparedness/coronavirus

Centers for Disease Control and Prevention: Coronavirus (COVID-19)

The scientists and officials at the Centers for Disease Control and Prevention (CDC) are the top authority for the American public about matters related to infectious disease. The NCI and other cancer-focused have told their patients, who may have compromised immune systems due to chemotherapy or other factors, to be especially mindful of the CDC’s instructions.

https://www.cdc.gov/coronavirus/2019-ncov/index.html

Vox: Coronavirus and Cancer Treatment: How doctors and patients are managing the pandemic

Vox reporters found that the best research conducted so far shows that cancer patients may be at considerably higher risk than others of needing hospitalization, intensive-care treatment, and ventilator breathing support, should they get the coronavirus, compared to the general public. Nevertheless, oncologists across the country are doing everything in their power to safely continue their patients struggles. The report covers the brave and difficult choices patients and their doctors are making together to simultaneously battle cancer and coronavirus.

https://www.vox.com/2020/3/20/21186681/coronavirus-cancer-treatment

New York Times: Her Cancer Surgery Was Canceled at a Hospital Bracing for Coronavirus

We’ve all read the reports of hospitals cancelling all elective surgeries because they’re facing a surge of coronavirus patients. It’s important to note, elective may be more expansive than you think. If you expect that elective surgeries only mean cosmetic procedures or the like, this article makes it clear that elective not only encompasses surgeries that are not life-saving, it may even include surgery for just about any condition that is not immediately life-threatening.

https://www.nytimes.com/2020/03/14/us/coronavirus-covid-surgeries-canceled.html

Coronavirus.gov

This site provides the latest guidelines and orders from the federal government. It is a collaborative effort by the White House, the CDC, and the Federal Emergency Management Agency (FEMA). Your home state likely has a similar site where the orders and guidelines put out by your governor will be collected. It’s a good idea to search for these on Google (search “coronavirus [your state]” and look for a link that ends in .gov.

https://www.coronavirus.gov/

Finding Support Throughout Your Journey

March 17, 2020 by Laura Cooke

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

When I was first diagnosed, I was so overwhelmed by everything coming at me—I didn’t know where to turn or what to do. I was still taking everything in and wondering what came next.

Once that tornado settled down, I wanted to talk to other people in a similar situation. I wanted to know what to expect. I wanted reassurance, but I also wanted “real talk”; from the doctors and nurses, but more than anything I wanted to know the experiences of my fellow patients. I think we often need both; “What does this mean?” v. “What does this feel like?”

Early on, right at diagnosis, my neuro-oncologist and nurses (my brain A Team) made sure I had pamphlets and information about what organizations and groups are available to me. Yours should, too. If not, start bothering them to start doing that. Some hospitals have monthly group meetings for specific cancers, including brain cancer. If not, here are some organizations to look into: Gilda’s Club, National Brain Tumor Society, American Brain Tumor Association, Imerman Angels, and Twitter’s monthly #BTSM (Brain Tumor Social Media) chats.

Gilda’s Club

I live very close to a Metro Detroit Gilda’s Club, so that was one of my first stops. Because of my seizures, I couldn’t drive for 6 months (+2 more months when I had a seizure right before my craniotomy). I walked to the closest support place. Gilda’s Clubs are great. They are very cozy and have lots of activities such as yoga, art, cooking, and support for patients. You can be 25 years in remission or wearing your Optune device. It doesn’t matter. It’s a great way to interact not only with brain cancer patients, but people going through similar journeys with different cancers.

Gilda’s Clubs are in several cities including New York, Kansas City, Chicago, and Twin Cities.

National Brain Tumor Society (NBTS)

Aside from the outstanding annual Head to the Hill event in Washington D.C., NBTS also hosts monthly social media chats. Many of these people are active and social on other medias, so it’s comforting—you feel like you’re in a live chat with friends (because you are). If you’re new, you’re ushered right in and will have people with advice and information.

Learn more about NBTS here.

American Brain Tumor Association (ABTA)

I first knew about ABTA because I basically came home with a briefcase full of ABTA booklets. I didn’t have to ‘Dr. Google’ Anaplastic Astrocytoma because I had a booklet all about it thanks to this organization. I had also heard of ABTA because one of my buds in my hospital’s brain group talked about a conference in Chicago. I went when I was nearing the end of my chemo cycles and wanted to meet people and learn things. That was the meeting of one of my first Twitter #BTSM chat friends, Sabine. I learned a lot. I also participated in one of their BT5Ks the following year (even got to be on my local news talking about my brain cancer patient experience).

Learn more about ABTA here.

Imerman Angels (IA)

They are so cool. An organizations that links patients together, AND links caregivers with other caregivers. It’s one of the first things I did because I was stuck at home: I couldn’t drive, I was exhausted, and still healing. I wanted to know what someone else went through who had my same diagnosis (Anaplastic Astrocytoma) and was similar to me (female and mid-30s). I was almost immediately linked with someone (a “mentor”). I wasn’t a fan of phone calls (you can even say what kind of interaction you want: phone, email, both), so she emailed me right away and answered my questions about what to expect from radiation and my Temodar. A year or so in, I felt more impulse to help newly diagnosed or people in more rural areas with less access to fellow cancer comrades. I moved away from being a mentee, and onto being an IA mentor. I love it. Being able to help someone else, gives me courage and strength.

Learn more about Imerman Angels here.

#BTSM (Brain Tumor Social Media) chats on Twitter: First Sunday of every month at 9:00 PM EST

You don’t have to have a Twitter account to observe, but I highly recommend having one to fully participate in the chats and to take advantage of the company, the knowledge, the feedback, and perspectives. Start by following @BTSMchat account on Twitter. Here’s a guide on how to participate in these chats. You can make friends really quickly. Sometimes it helps just to follow some of the long-time followers on the account, pretty soon you’ll get the hang of things. Because of the amazing folks here, I learned about events (such as Head to the Hill), and when I go to these events, no matter where I am (D.C., Chicago, Detroit, Los Angeles, or San Francisco)—I feel like I have friends. I have name/memory issues, so it’s kind of crazy. I know people more by their Twitter handle (by repeatedly using them, I think it’s a long-term memory!) than by their actual name.

You may feel alone when you are newly diagnosed or experiencing a new growth or worried about someone you love. I want to reassure you in at least this one small way: You are NOT alone. And pretty soon, you can be the person helping other people navigate their journey. And when you’re helping, suddenly the anxiety you were feeling starts to diminish. THAT gives me PURPOSE.

Learn more about Molly’s story by following her on Twitter, Instagram, or Facebook!

Continuing the Fight After Surgery

February 28, 2020 by Laura Cooke

Written by Head for the Cure Ambassador Anna Blackwell

When you’re diagnosed with any life-threatening disease, your life flashes before your eyes. You’re quick to think about the worst-case scenarios. You’re quick to resort to a countdown, as if you’re awaiting your demise. It’s beyond intimidating, and you feel immeasurably alone. I was 12 years old when my life flashed before my eyes. At 3:34 PM on February 11^th, 2016, my life had changed forever.

My Diagnosis

At 3:34 PM, I received a text from my mother stating that I had a brain tumor, and that my dad was picking me up from school. I burst into tears as soon as I saw my father. As we walked to the car he told me that we were on our way to meet my brain surgeon. Within 5 minutes, I had gone from a normal kid to a kid undergoing brain surgery.

We drove in silence on the way to Medical City in Dallas. We made our way up the 4 floors to the doctor’s office, scared of what was next. My surgeon, Dr. Sacco, walked in and went over my brain MRI taken earlier that morning. He explained that the tumor was the size of a golf ball, and that it needed to be removed soon, as half of my vision had already been affected, and more would soon follow suit. We scheduled my brain surgery for Friday, February 25^th, 2016. The only Friday I have yet to fret.

The build up to February 25^th was unlike any other. Those 2 weeks went by so slow, and yet so fast. The immense support I had from friends and family was the only thing helping me put one foot in front of the other. It’s hard to think that bad circumstances yield unity, but they do. Family and friends are great like that. They helped make the days go by fast in a good way. So fast to where, before I knew it, it was February 23^rd.

February 23^rd, 2016 was the day of my pre-op appointment. Pre-op seems scary, but in-actuality, it’s pretty similar to a check-up. They took my temperature, blood pressure, weight, and height. They made sure I was good to go into surgery, and that I wasn’t fighting a common cold, or anything that could affect the surgery. Pre-op went smoothly, vitals were good (I had a minor fever, but overall controlled), and everything was set. Within 48 hours, my life would forever be changed.

Surgery Day

February 24^th went by quickly and then it was the big day. February 25^th. Brain surgery. I woke up at 5 AM, tossed on my lucky shirt, and then we headed off to the hospital. I was feeling a mix of emotions as we headed back to Medical City; fear that I’d never wake up, excited that I might start to feel better, worried about how my friends and family are going to stress out all day. It was an intimidating process, but before I knew it, we were at the hospital, then we were in the waiting room, then we were being taken back, then I was being wheeled into the operating room.

Fear started to take over as I was being wheeled down the long, dark hallway. I began to scream “I don’t have a good feeling about this!” and “Help!” I vividly remember entering the operating room and seeing the knives, and the helmet they drilled into my skull. I remember counting down for the anesthesia. 100…99…98…97…96…95…94…93…92.

I woke up with my surgeon staring over me. He stuck a pen in my face, waved it around, and asked what he was holding. I quickly answered in that sort of “Why would you even ask me that” sort of tone. Needless to say, my response brought a lot of immediate relief to the fears that surrounded my family. I was going to be okay. Things were going to be alright.

Although the surgery was successful, and we had removed 90% of the tumor, it was still hard to put a positive spin on the events that had occurred. People often have this perception that post-surgery everything is okay. The person is back to normal and life will continue. And, as much as I would love to say that this was true, it wasn’t. Not in the slightest.

Effects of My Tumor

Due to my tumor, I had lost my peripheral vision on the right side of both eyes. And due to where my tumor was located (in the occipital tract and left temporal lobe) I struggled with basic things like reading, language, comprehension, navigating through a grocery store, picking up a pencil, and other basic tasks. I often found myself giving up. A lot.

I grew up the gifted kid. And here I was, in 7^th grade, with the vocabulary and reading level of a 4^th grader. A huge setback. I worked hard and my sophomore year I ended up reading my first book. A collegiate textbook about world history and my comprehension seemed to increase when I passed my College World History course and got college credit.

Navigating through busy areas proved difficult as well, but I went to vision therapy for over a year and got a Peli Lens on my glasses which acted as a mirror directed towards my vision deficit. After a lot of practice and setbacks, I’m now able to navigate through an arena filled with 25,000 people with minimal problems and get around my 6A high school relatively easily.

Picking up a pencil still proves relatively difficult to this day. I write with my right arm and due to the location of my tumor I lost all the strength on my right side. I’ve gone to physical therapists on and off throughout the years but have been working extensively with a physical therapist and chiropractor for the past 2 months. We’ve seen remarkable results and my handwriting is starting to go from “doctor-writing” to “high school girl handwriting.” There’s still a long way to go, but I have hope. 4 years later and I’m on the track to getting my right side back.

Continuing to Fight

I had brain surgery nearly 4 years ago. It’s been and continues to be an increasingly difficult uphill battle. There are so many emotions that flood your body from the time you’re diagnosed, to the day you have surgery, to years later. I wish that people didn’t have to go through this battle. If you’re currently undergoing surgery or treatment, are recovering or have been recently diagnosed, or just know someone who is fighting the battle, know you aren’t alone. And that together, we will get through this. And one day, one day soon, I hope we will find a cure.

GT Medical Technologies Announces FDA Clearance of Expanded Indication for GammaTile Therapy

January 28, 2020 by Laura Cooke

Earlier today, GT Medical Technologies of Tempe, Arizona announced patients with newly diagnosed malignant tumors are now eligible to receive FDA-cleared GammaTile® Therapy in addition to patients with recurrent brain tumors.

“We are pleased to offer GammaTile Therapy to patients who are newly diagnosed with malignant brain tumors, in addition to patients with recurrent brain tumors,” said Matthew Likens, president and CEO of GT Medical Technologies. “This is a significant step forward that expands our ability to improve the lives of patients with brain tumors. Patients receiving GammaTile Therapy immediately after the removal of a brain tumor will have the peace of mind that they are accelerating their radiation treatment and targeting residual tumor cells where treatment is most needed to help prevent recurrence.”

Learn more about GT Medical Technologies, GammaTile Therapy, and the expanded indication from the U.S. Food and Drug Administration (FDA) here.

Staying Strong as a Caregiver: Taking Care of Yourself

January 15, 2020 by Laura Cooke

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

The role of being a caregiver is all in the name, caring for someone else in any type of capacity. We care for our loved one battling a terrible disease 24/7, but do we ever return the favor to ourselves? Being a caregiver for my mom took a toll on me and my family mentally, physically, and most of all, emotionally. We never thought to take a step back and care for ourselves when my mom was fighting her battle with brain cancer because our focus was on her, and any doing anything else felt selfish. I want you to know that you are not the only ones who have felt this way.

Being a caregiver is a title you will have for the rest of your life, but at a point you realize it goes both ways: caring for your loved one and yourself. After my mom was diagnosed with a Glioblastoma, I naturally took the role of the leader. I made sure my mom, stepdad, and brother were all doing okay, but I never looked inward. I internalized everything because I knew I had to keep strong for my family.

After my mom passed, I moved out of my parents’ house, moved back in with friends and returned back to work. I thought that going back to living how I did before my mom got sick was the easiest way to grieve. I would distract myself by immersing myself into work, going on trips, and distracting myself any way I could. I was wrong and I am still paying for it to this day mentally and emotionally.

According to the Anxiety and Depression Association of America 40%-70% of caregivers show symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.

There isn’t a certain way to process trauma or grief, but there are healthy and non-healthy ways to go about it. There is a reason why they call it the “stages” of grieving because you go through them in different ways and at different times of your life. Knowing myself, I knew I had to talk to someone about what I had gone through. The hospice facility that my mom was at offered counseling, so I started going right after she passed.

When I moved back in with friends, I started to feel like a “normal” 20-something again, but I was still internalizing every feeling about my losing my mom. My new normal wasn’t what I thought it would be. I would get headaches from the stress, my anxiety skyrocketed, and depression set in. I knew at that point I would need to see a licensed psychologist. It took a while to find the right one, but when I did, it helped immediately.

My family and I have learned to manage our grief in different outlets that work for us. We still participate in Head for the Cure events around the country to honor my mom. My step dad helps out with a local non-profit, BeHeadStrong, since they were a huge part in helping us when my mom was sick. Also, as a high school teacher my brother has connected with other students who have gone through the same thing.

There is no shame in going to talk to someone about your life and your feelings, and as a caregiver I felt like there was a stigma about going to therapy. Even three years after my mom’s passing, I continue to go because the one thing I’ve learned is that grief will be with you forever, but you are in control of how you manage it. As a caregiver, at any age, you need to take care of yourself too. Whether it is taking mental health days, going to concerts, talking with a therapist, the options are endless.

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