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Brains for the Cure Partners With GammaTile®

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Brains for the Cure (BFTC) is thrilled to announce a new partnership with the creators of GammaTile®, GT Medical Technologies, to provide resources and guidance for caregivers of brain tumor patients.

BFTC is made possible by donations to the Head for the Cure Foundation. BFTC was launched as an online patient navigator in 2017 to help patients understand, manage, and cope with all the twists and turns of a brain tumor diagnosis. After a re-launch in 2019, BFTC provides resources, news updates, and video testimonials to help patients through their journey. The next phase, complete in 2020, focuses on supporting caregivers who are an integral part of a patient’s diagnosis.

GT Medical Technologies has a purpose of “improving the lives of patients with brain tumors.” Their FDA-cleared device, GammaTile®, was created to address an unmet need.

GammaTile® Therapy is a Surgically Targeted Radiation Therapy (STaRT) that is implanted in the last five minutes of a brain tumor removal surgery, and immediately begins delivering radiation treatment to remaining tumor cells.  Patients receive their radiation while going about their daily lives, without the need for follow up appointments for radiation treatments.  By getting a head STaRT on fighting the tumor, GammaTile® Therapy can extend local recurrence-free survival with minimal complications, reduced patient and caregiver burden, and assured treatment compliance.

Together, BFTC and GammaTile are committed to supporting brain tumor patients, but they want the caregivers in the brain tumor community to feel the same amount of support as an important part of the patient’s team. The Brains for the Cure Caregiver Initiative will be powered by a grant from GammaTile®. 

Brains for the Cure looks forward to this growing partnership with GT Medical Technologies and continuing to serve caregivers and patients through their brain tumor journey.

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.

Jenguin’s Journey – Facing a Different Front: Round 1

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

Change of Plans

In the brain tumor community, we “Go Gray in May” for Brain Tumor Awareness Month. I personally like the hashtag #GrayMatters, because I love the play on words.

This year, I was prepared to kick off this important month with a trip to Capitol Hill, where I was joining a bunch of fellow “thrivers” to advocate for more funding to the awesome researchers working on a cure for this disease. Unfortunately, COVID-19 foiled these plans, and the event was turned into a virtual one. Forced to stay home and send an email instead, I knew it just wouldn’t have the same impact as a meeting in-person with my members of Congress. As disappointing as this was, it turned out for the better as I headed into treatment.

Education Day

The clock was ticking, and Day 1 of my first chemotherapy cycle was quickly approaching. Beforehand, I headed back to the hospital to get my blood drawn and meet with the nurse. My boyfriend was not allowed in the building with me this time, so he dropped me off and I proceeded through the automatic doors of the cancer center. Getting used to the drill, I lifted my hat as I approached the temporary table in front, so the women behind it could scan my forehead and ask me a few questions before handing me a card with the word “APPROVED” and my temperature handwritten on it.

After a quick blood draw in the lab, I went upstairs where the waiting room had tape over some of the chairs to prevent people from sitting too close to one another. Thankfully, it wasn’t long until the nurse led me to a room where she would educate me on my treatment. I received a folder full of information on the chemo drugs and a calendar outlining my next couple months of pills, lab tests, and remote doctor visits.

Beginning Treatment

I’ve done these drugs before. It’s a well-established chemotherapy for brain cancer, a cocktail of three drugs called PCV: Procarbazine, CCNU and Vincristine. The first two are capsule form, and the third is given over IV. Last time, Vincristine gave me peripheral neuropathy, so I stopped it and continued on the other two (PC). This time, I’m foregoing the third entirely, and sticking to the first two (which is enough).

I went home to await the delivery of these two tumor-killing toxins. Bringing the packages inside reminded me of Snow White accepting her poison apple. Cycle 1 started with my first dose of CCNU, otherwise known as Lomustine. It’s an agent so strong that I have to wait 8 weeks between doses, with constant monitoring of my blood levels.

One week later, and it was Day 8 of my first cycle. I started the day off with some labs at my local hospital. A quick call from my oncologist told me everything was normal, and I finished the night with my first dose of Procarbazine, which I reluctantly take every night for 14 days.

It’s the beginning of a long journey, during a very unique time in history. I’m actually glad they are requiring face coverings in public now; it allows me to fit in with my own protective gear.

What COVID-19 means for cancer patients: Roundup

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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

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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!