Patients & Survivors: Your Brain Tumor Journey

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Patient Stories

Explore inspiring journeys of resilience and hope through our Patient Stories

Brain Cancer Support & Solutions Alliance

About Us Brain tumors present unique challenges, demanding specialized care from diagnosis through treatment. With a shared commitment to addressing these challenges, the Brain Cancer Support and Solutions Alliance leverages the strengths of its member organizations to …

Episode 16 of the Rare Enough Podcast: Featuring Kelly & Evie Fisher

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Comprehensive Resources for Pediatric Brain Tumor Patients And Their Families

Pediatric brain tumors are the most common type of solid childhood cancer and only second to leukemia as a cause of pediatric malignancies. The prognosis of pediatric brain tumors depends on the age at presentation, …

Episode 15 of the Rare Enough Podcast: Featuring Dr. Simon Khagi

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Upcoming Optune Gio Open Houses

Meet actual users and caregivers at an Optune GioTM Open House! You’ll learn more about Optune Gio, an FDA-approved treatment for GBM. Optune Gio users and care partners will discuss their experiences living with GBM …

Strides towards a cure: Northwest Biotherapeutics and DCVax® – L

Northwest Biotherapeutics is making significant strides in the fight against Glioblastoma multiforme (GBM), the most lethal form of primary brain cancer, with their lead product, DCVax®-L. GBM is a devastating disease with a grim prognosis: …

New Grief & Loss Support Group

Join us for our new support group, “Legacy of Hope,” dedicated to caregivers who have lost their loved ones to a brain tumor. We’ve created this group to provide a compassionate and understanding space for …

Glioblastoma Awareness Day: Staying informed and Finding Hope

Glioblastoma (GBM) is one of the most complex, deadly, and treatment-resistant cancers. More than 14,490 Americans are expected to receive a GBM diagnosis in 2023.  It can affect anyone—men, women, and children—regardless of age, background, or lifestyle. GBM does not discriminate based on gender, socioeconomic status, region, age, or political affiliation. Every year, on the third Wednesday of July, GBM Awareness Day is observed to acknowledge the profound impact of this devastating disease and to emphasize the national imperative to advance research, raise awareness, and take action toward finding a cure for glioblastoma.Glioblastoma Awareness Day is a vital opportunity to …

Episode 14 of the Rare Enough Podcast: Featuring Michael & Vanessa Hugo

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Imvax Announces Completion of Enrollment in Phase 2b Clinical Trial of IGV-001

Imvax, a national sponsor for Head for the Cure, has made significant strides in cancer research, recently announcing the completion of enrollment in their Phase 2b clinical trial of IGV-001. This milestone, coupled with successful …

Patient Stories

Episode 14 of the Rare Enough Podcast: Featuring Michael & Vanessa Hugo

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Embracing My New Patient Identity

The thought of embracing my new identity as a brain tumor patient was a daunting journey filled with uncertainties and challenges. However, it was essential to remember that my identity is not solely defined by my medical condition. While it undoubtedly plays a significant role in my life, it doesn’t overshadow the other aspects of who I am as a person. Here are some steps that helped me navigate and embrace my new identity:Acknowledge Your Feelings: It’s okay to feel a range of emotions, including fear, anger, sadness, and even relief.

The Importance of Prioritizing Yourself as a Person Over Your Identity as a Patient

In the journey of facing a medical condition, it’s easy to let the label of “patient” overshadow our sense of self. Whether it’s a chronic illness, a sudden diagnosis, or a long-term treatment plan, the identity of being a patient can consume our thoughts and actions. However, it’s crucial to recognize the importance of prioritizing ourselves as individuals over our identity as patients. Here’s why:Preserving Self-Worth: Being a patient doesn’t define your worth as a person. It’s essential to maintain a healthy sense of self-worth independent of your medical condition. Remembering your talents, strengths, and qualities can help you maintain …

Regaining a Sense of Self as a Brain Cancer Patient

Being diagnosed with a brain tumor is an overwhelming experience that can turn your world upside down. Alongside the physical challenges, the journey often takes a toll on your emotional and psychological well-being, leaving you feeling disconnected from your sense of self. However, amidst the chaos, it’s crucial to remember that you are more than your illness. Regaining a sense of self is a fundamental part of the healing process, and it’s entirely possible with the right approach. Here are some tips to help brain tumor patients reclaim their identity and find inner strength during this challenging time.Acceptance and Self-Compassion:The …

Nurturing Mental Health: Insights and Strategies from Patients and Caregivers

A brain tumor diagnosis brings forth a mass of challenges, not only physical but also emotional and mental. Managing your mental health becomes a crucial aspect of the journey for both patients and survivors. In …

Coping With Survivor’s Guilt: Navigating Life After Brain Cancer

Surviving brain cancer is a triumph, but it often comes with a complex set of emotions, including survivor’s guilt. This guilt arises from the feeling of being fortunate to have survived while others facing similar circumstances did not. Certain thoughts can take over such as, “Why did I survive while others did not?” and “What makes me special?” Coping with survivor’s guilt can be challenging, but it’s essential for long-term mental and emotional well-being. In this article, we’ll delve into the phenomenon of survivor’s guilt in the context of brain cancer survivors and provide tips to help navigate through it.

Forbes Spotlights Cancer Survivor DJ Stewart

Stewart’s journey shows how he overcame challenges with determination and positivity. His experience demonstrates the strength of resilience in facing illness and offers hope to others in similar situations. Stewart’s story emphasizes the importance of patient empowerment and serves as a beacon of hope for those navigating difficult times. Check out the complete feature from Forbes here!

Collaborative Care Against Brain Cancer

Kansas City beneficiary partners, the University of Kansas Cancer Center and Children’s Mercy, collaborated in efforts to treat a pediatric brain tumor patient.