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Learning More About Clinical Trials

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Brains for the Cure was launched to be an online online patient and caregiver program to provide resources and information through their journey with a brain tumor. According to a study done by the National Brain Tumor Society (NBTS) only 42% of patients were informed about clinical trials by their medical team.

What is a Clinical Trial?

Where Can You Find Clinical Trials?

Patients, or their caregiver, can ask their doctor about clinical trials taking place within their center, but sometime a patient will need to travel, if able, to participate in a trial. Doctors should always be consulted when deciding whether or not to participate, but a database of clinical trials can be found at ClinicalTrials.gov.

What Should You Ask About Clinical Trials?

Some important questions to ask a doctor about clinical trials are;

  • How does the treatment work to treat my brain tumor?
  • How often do I have to be seen in the clinic or hospital?
  • How could the trial affect my daily life?

More questions can be found in the Brains for the Cure Patient Resource Guide.

Where Can I Hear More About Clinical Trials?

Did you know that Brains for the Cure has a video library with more than 200 videos from patients, caregivers, and doctors covering a wide variety of topics? We do! Check out the Clinical Trials playlist.

Where Can I Learn More?

National Cancer Institute: The National Cancer Institute offers great resources to explore if you want to know more about clinical trials options available. They also have a listing of clinical trials for brain tumor patients taking place at the NCI.

Keeping a Positive Mindset

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

To be honest, I never really liked it when non-cancer/non-brain tumor folks immediately, knee-jerk advised me to, upon hearing of my grading and diagnosis, “Be positive! You got this!”

Yes, no kidding: I GOT this. I am absolutely positive I GOT cancer. That being said, I’ve been guilty of telling others the very same thing. Often, we simply don’t know what to say and we’re trying to give you the most unobtrusive, helpful few words we have at the hand.

But I have learned one thing over the last few years– the positive mindset can be quite useful. I wouldn’t call it a “fix” or a “cure”, but it can help you play the cards you have better.

Life is a total hodge-podge of things that happen and keep happening, and while it doesn’t often seem like it, we can only really control what we’re going to do with the hodge-podge pile of things that appear to randomly be tossed at us.

I have found that the best way for me to tackle challenges, disappointment, fear and grief is to allow myself to have those feelings. I cry. I acknowledge the jealousy I feel toward those who appear to have no real challenges or viewable disappointment. I feel those feels! I acknowledge my ugly side, my fearful side. But after giving myself however long I need to have those feelings I move on. Because, after a while, those feelings have no other use. I have stuff to do. Even as simple as laundry or making dinner or walking the dogs. The diagnosis and difficulties may interfere with goals and plans, even time-tables, but the diagnosis doesn’t own YOU.

Sometimes the worst things that happen to you can be flipped. It’s completely within your wheelhouse. You must find the way to get yourself there, but eventually after the fear, the hurt, and the anger your best side, your inner best, it’s there. You have a choice. To continue to mourn the life you might’ve had, OR, live the life you are given with all the love and juice and passion you have. Time is irrelevant. It doesn’t matter. It’s neither here nor there, nor a thing we can control. We control our NOW. That is all. And that can be enough.

Upward and onward. Ever, ever onward!

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!

How Brain Tumor Treatment Impacted One Survivor’s Finances

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Written by Head for the Cure Ambassador Angela Merckle

I remember one fall day in 2015, my physician saying, “Your brain tumor has grown and we must intervene with treatment”. I was quick to elect for radiation therapy given its effectiveness in destroying cancer cells with no regard to anything outside of remaining focused on a successful treatment.

It wasn’t soon after that the bills started rolling in. Although I had employer-based insurance, there was a sudden level of financial stress pouring in. Dealing with a new brain tumor diagnosis is enough in itself, but add the medical bills to it and you begin to think you will never recover. The hospital graciously gave me contacts for financial counselors and a folder filled with resources.

Finding Resources

I made an appointment with the financial counselor immediately and, believe it or not, he confirmed there wasn’t much they could do for me financially. I remember being in that office and crying with both my sister and mother by my side. I was a single mother at the time and living with very little excess financially. He explained how I would not qualify for assistance because of my age and life expectancy for my diagnosis. How could this be? I thought about the option of taking short term disability during my treatment, however, after speaking  with the financial counselor, I simply could not risk the pay cut. I had to sacrifice my well-being during treatment to continue to work full time to even afford the treatment at all.

I explored the option of payment plans available to help those in need, but I soon learned that they are not willing to work with you forever. I was sent to collections. I was naïve to think the diagnosis would allow some grace given the time of desperation. As I continued to exhaust all resources, I quickly learned just how little help there is to ease the financial strain.

I could no longer maintain the payment plan and debt collectors were beginning to hound me. My follow-up MRI scan revealed the radiation was successful and the tumor shrunk, but now I was questioning if I could even afford the 3-month follow-up plan I was on. At a time when I should be celebrating, I often would ask myself, “Should I have elected for treatment?”. One diagnosis and treatment was enough to financially wipe me clean of everything I had worked for. I was forced to file for bankruptcy. Even when speaking with my lawyer he mentioned, “Will this be an on-going monitoring for the rest of your life, or do you see it ending?”.

Financial Struggle

Apparently, if there is no end to it, you will constantly be struggling financially. As you can imagine, that left me with little hope for getting back on my feet one day. Again, fighting back tears, I succumbed to filing as no other option was available. As I signed the bankruptcy paperwork, he too needed a form of payment. I could not even afford the lawyer there to help relieve me of my financial burdens this brain tumor and treatment had cost me. Because I could not pay him in full that day, I was forced to then set up a payment plan over many years. How ironic that I could not pay my medical bills, however, ended up on a payment plan to file bankruptcy.

I must admit this whole process left me angry. I thought, couldn’t there be a ‘get out of jail free’ card for those going through cancer much like you see in the Monopoly game? I didn’t ask for this nor had planned for this. We all plan for retirement. Should we also plan for a possible life changing diagnosis requiring treatment? I know I am not the only one facing a financial struggle and I also know many people going through similar circumstances who are forced to make medical decisions based on their financial needs.  

Personal Lessons from Treatment

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Written by Head for the Cure Ambassador Emalee Barto

So, you’ve just discovered the ‘BIG C’. I know you’ve probably got a million thoughts swirling around in your head right now, so please get cozy and let’s talk about crafting a treatment plan.

Lesson Number 1:  I am not living with cancer. Cancer is living with me. 

The moment I received my brain tumor diagnosis, my life automatically shifted out of autopilot to survival mode. Survival mode serves many purposes, but operating in a permanent state is not one of them. One of the most profound moments during my journey was when I realized that cancer was living with me. This was my body, my brain, my future – taking ownership over my treatment plan was empowering. 

I certainly was not equipped to navigate a brain tumor diagnosis. Heck, I thought my seizure was a heart attack! But like anything else, I started to identify those who were brain experts. It is the same as any other facet of your life. If you find yourself in jail, call your lawyer. If you’ve got a leaky pipe, call your plumber. You get the point – find the experts! Even if it means finding just one medical professional that you know and trust. Ask them for recommendations or referrals.

People are always looking for ways to help during a crisis and this is the perfect way to put them to work. Depending on your specific diagnosis, you may work with a Primary Care Physician, a neuro-oncologist, radiation oncologist, neurologist, endocrinologist, neuro psychologist, and a nurse navigator. This is the core group of medical professionals that worked on my treatment plan. I also found it incredibly helpful to identify a friend or family member that can work closely with my health insurance company and my employer. I quickly learned that it never hurts to ask one trusted individual to help provide status updates to your community of supporters during the initial diagnosis period. This allows you time to focus on healing and keeps the social media crazies at bay! Trust me, this time will be a blur and you are in the eye of the hurricane. Investing in your medical team upfront will make for a strong foundation – trust me, just when you think it can’t get any crazier, it will.   

Lesson Number 2: Get a 2nd Opinion. Always!  

Welcome to the great buffet of brain tumor treatment options! Would you like a side of radiation with that? How about a little chemotherapy? When it comes to a brain tumor diagnosis there is a typical standard of care that is followed among all professionals. Quick plug, this standard of care hasn’t been updated in a devastatingly long time, seriously look it up!

The standard of care typically includes assessing whether or not the tumor is operable, attacking the tumor with radiation, and finally smothering the tumor with some chemotherapy. Easy enough, right? While there may be standard of care every brain tumor diagnosis is different. It is important to discover the best approach for you. Knowledge is power. I was able to make an informed decision on my treatment plan because I gathered as many facts as I could along the way. This can be time consuming and overwhelming, but again the investment here will pay off in the end. Invest in yourself and GO get that second opinion. Heck, if you’re an overachiever, go get three or four opinions. You will never regret having too much information. 

Lesson Number 3: One size does NOT fit all.

Lucky you! A brain tumor diagnosis is not like your favorite pair of leggings; one size does not fit all! Simply because your aunt’s cousin’s friend of a friend’s long lost brother has lived the last 45 years with a brain tumor does not mean that their method of treatment is what is best for you. It is ok to say ‘no’, it is ok to say ‘yes’, and it is ok to say ‘one moment, let me think on that’. Treatment plans differ based on a multitude of factors; such as diagnosis, location of the tumor, age, etc. Don’t be afraid to take a step back and truly weigh the risk verses the reward. And please do me a favor – review the medical risk disclosure forms before you sign them! If you have questions, speak up and ask. Never, ever forget that this is your body, your journey, and your choice. Every person deserves to be treated with dignity and respect. Remember – you are not living with cancer. Cancer is living with you. Own it – I like to think of it as a ‘Choose your own adventure’ situation. There is no right or wrong answer. 

Lesson Number 4: Cancer is not a common cold; so don’t treat it like one! 

Remember when I mentioned how important it is to get cozy with your medical team? Surprise! You’ll be regularly checking in with these folks for weeks, months, and even years from now. Got off on the wrong foot? No worries, I believe donuts can fix anything. I’ve even heard bringing the staff donuts can get you favorable scan results! Just kidding! Though it may help you stay on the nurse’s good side the next time you have a blood draw. After the initial shock of a brain tumor decimates and long after you’ve rang that post radiation/chemotherapy bell, there will be lasting side effects of the medical trauma you’ve been through. Yes, I said trauma – your life may resemble a Lifetime movie right now! Remember, one size does not fit all. If your healing journey looks different than another’s, that is ok. After this experience some individuals may have physical challenges that require follow-up physical, speech, or occupational therapy. They may even need help reintegrating into the workplace and seek legal counsel to help navigate tricky disability laws. Others may experience psychological challenges that require anti-depression medication, infertility counseling, or even coping mechanisms to mourn the loss of relationships. A disruption to our nervous system is serious – this is not the time to treat your health like a common cold. The residual effects of a brain tumor can linger for a long time and unfortunately, may even return in time. Yikes – that got really serious there for a moment! Let’s get back to the donuts…

Lesson Number 5: You are not alone. 

Seriously, we are never going away! Welcome to the terrible, awful, horrible ‘Big C’ club! I’m sorry we had to meet this way, but I can promise you that you will never be alone, and I will never run out of brain tumor jokes. Please know that your Head for the Cure family is always ready and willing to help you. Together we can defeat brain cancer!