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My Glioblastoma Journey

Diagnosis & Initial Treatment

I was diagnosed with glioblastoma (GBM) on Thanksgiving 2023. My journey began with brain surgery on December 3, 2023, followed by a gross total resection on December 26, 2023. The pathology confirmed IDH wild-type glioblastoma, MGMT methylated.

Treatment Timeline

Radiation & Initial Chemotherapy

I completed 42 days of radiation therapy (5 times per week) combined with 180mg of temozolomide chemotherapy daily. After finishing radiation and ringing my bell, I moved to the next phase of treatment.

Maintenance Chemotherapy

I initially received 360mg of chemotherapy daily for 5 days, but requested a lower dosage because it was so hard on my body. I completed 3 rounds of maintenance chemo at 250mg for 5 days each cycle.

Optune Therapy

I started using the Optune device on April 18, 2024. I wear it in a kangaroo shirt (as if it were a baby) so my hands are free and I can maintain mobility.

Finding Better Care

After several MRIs, I realized my local cancer center had no other GBM patients and hadn’t treated any for years. They were not up to date on the newest treatments. I asked Mayo Clinic for a second opinion and was accepted into their program. I wish I had done it from day one!

Mayo Clinic Consultation

On July 15, 2024, I met with the Mayo Clinic surgeon. Before considering surgery, he wanted specific tests to determine if we were dealing with tumor growth or something else. Both radiation oncology and neurology recommended a perfusion MRI before proceeding.

​Radiation was ruled out as an option until at least a year from my last treatment. Both teams discussed Avastin and Lomustine as treatment options.

Current Treatment & Results

I started Avastin treatment, which has brought similar side effects to chemotherapy—fatigue, loss of appetite, and daily headaches that I wake up with. However, the combination of the perfusion MRI and Avastin has shown no new growth and a shrinking enhancement ring. I’ve now had over a year’s worth of MRIs showing no new growth thanks to Avastin.

Current Medical Team & Status

Primary Care: Dr. Johnson at Duke University, accessed through the VA’s Virtual Oncology Network

Disability Status: 100% VA service-connected disability

MRI Schedule: Every two months for monitoring

Medications & Management

  • Eliquis for blood clot prevention

  • Avastin infusions monthly

  • RSO suppositories for symptom management

  • Weaned off Dexamethasone after 5 months (that was challenging)

  • Previously on Keppra (caused severe mood changes, was switched to Gabapentin, no longer taking)

Ongoing Health Challenges

Blood Clots

I developed a thoracic blood clot on April 25, 2024. Despite being on blood thinners, I continue to experience multiple blood clots.

Physical Therapy & Mobility

I’ve been participating in a virtual physical therapy program for a couple of months. The reality is that if you don’t use your body, you lose all muscle and stamina. I’m exhausted walking just a few feet, but I’m working on building strength.

IVC Filter

An IVC filter was placed and later removed on May 14, 2024.

Lifestyle & Adaptations

Daily Life

  • Recently retired (no longer teaching for income, only when I see an opportunity to enlighten)

  • No alcohol consumption

  • Minimal sugar intake

  • Sugar-free protein drinks when stomach is upset or appetite is low

  • Sleep is crucial - I rest a lot

Travel & Adventure

Despite my diagnosis, I have traveled extensively: - Flown almost every weekend since my initial hospital release - Traveled around the world - Costa Rica - Albuquerque - Miami - Hawaii (multiple trips) - Cruised on ships - Helicopter rides - Swimming

I travel with my wheelchair and medical bag, but I don’t let GBM stop me from living.

Lessons Learned

What I Wish I’d Known: - I wish I had shaved my head before getting my radiation mask made. Once it’s made, you can’t change ANYTHING, and my head had glue, staples, and blood on it during the molding process. - I wish I had gone to Mayo Clinic from day one instead of starting at a center with limited GBM experience.

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What’s Helped: - Advocating for myself and seeking second opinions - Staying active and traveling despite the diagnosis - Finding creative solutions (like the kangaroo shirt for Optune) - Adjusting medications when something isn’t working - Leaning on faith and walking with God through this journey

Medical Details for Healthcare Providers

Tumor Characteristics: - IDH wild-type glioblastoma (more aggressive form) - MGMT methylated (favorable response to temozolomide)

Surgical History: - Initial surgery: 12/3/2023 - Gross total resection: 12/26/2023 - Right temporal craniotomy with resection cavity

Imaging History: - Multiple MRIs showing initial concern for progression (April-July 2024) - Perfusion MRI (August 2024) showed decreased Enhancement - Recent imaging suggests necrosis rather than new tumor growth - Current status: No new growth, shrinking enhancement ring

Genetic Testing: - Tempus xF and xT testing completed - MMR panel: MLH1, PMS2, MSH2 (weak), MSH6 present - Various mutations identified: PIK3CA, NF1, PTEN, TERT, TP53, CDKN2A, MTAP

Moving Forward

I continue to monitor my condition with regular MRIs every two months. While I face challenges with fatigue, blood clots, and limited mobility, I remain committed to living life fully. I’m retired now, which allows me to focus on my health, travel when I’m able, and share my story to enlighten others when opportunities arise.

Through it all, I walk with God and maintain my fighting spirit. This journey has taught me resilience, the importance of self-advocacy, and that life doesn’t stop just because you have glioblastoma.

Contact

I'm always looking for new and exciting opportunities. Let's connect.

info@mysite.com

123-456-7890 

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