NCI-CONNECT Rare Brain & Spine Tumor Network
 

Two-time Oligodendroglioma Survivor: Never Give Up Hope

November 13, 2018, by Jered, a survivor of Oligodendroglioma

Oligodendroglioma Jered

Jered and his wife, Kristin

Credit: NCI-CONNECT Staff

A brain tumor survivor shares his experience with oligodendroglioma and advice for others.

My brain tumor story started when I was a junior in high school in Midland, Texas – although, I didn’t know it at the time. I had multiple concussions playing football and after my fourth concussion, the team trainer recommended that I get an MRI. The MRI showed a small spot on my brain that the doctors initially thought was cortical dysplasia – a birth defect of abnormal cells or tissue – and decided to monitor it every six months with follow-up scans.  Thankfully, I’ve never had any of the typical brain tumor symptoms like headaches, seizures, cognitive impairments or loss of physical functioning.

Life proceeded as normal. I graduated high school and started college in the fall of 2009 at Texas A&M University in College Station, Texas. While at home on college winter break, I had a routine MRI. But this time, the spot had grown and my doctor recommended surgery. The doctors said the surgery could wait until the summer as the tumor had not grown by much. But, after talking it over with my family, we decided it would be best for me to go ahead and withdraw from school and proceed with surgery. On February 8, 2010, at age 19, I had my first brain surgery to remove the tumor from my left frontal lobe. Shortly afterwards, I learned I had a type of cancerous brain tumor called anaplastic oligodendroglioma. Although it stunk to get this diagnosis, there was a silver lining. My tumor contained a deleted chromosome 1P/19q, which made it more susceptible to treatment.

Finding Expert Care

Since oligodendrogliomas are a rare brain cancer, my neurosurgeons referred me to Mark Gilbert, M.D., who at the time was a neuro-oncologist in Houston experienced in treating rare tumors. At 19-years-old, I trusted Dr. Gilbert to give me the best available treatments for my specific tumor type.

I started two years of oral chemotherapy. I took the drug temozolomide for five days and then was off the drug for 21 days. Thankfully, I only experienced some nausea during the time of treatment and was able to return to college while undergoing treatment. I was able to graduate with my Bachelor of Business Administration in Finance in 2013 and then earned my Master of Real Estate Finance in 2014, both at Texas A&M University. I then moved to Houston for a job, but after seven months decided to return to Midland to get into the oil and gas business, which turned out to be a huge blessing.

After my first bout with brain cancer, I had an MRI every other month until I was cleared to have scans every six months in Houston. At one of the routine brain scans, a spot re-appeared in my left frontal lobe. I decided that it would be best for me to see Dr. Gilbert, again, now a neuro-oncologist in the Neuro-Oncology Branch at the Center for Cancer Research, NCI, NIH in Bethesda, Maryland. At 24-years-old, I trusted him with my life and still do today.

Treating My Brain Cancer Recurrence

New tests confirmed the anaplastic oligodendroglioma was back. Therefore, I needed to have my second brain surgery. My second surgery was at the NIH with Kareem Zaghloul, M.D., Ph.D., of the National Institutes of Neurological Disorders and Stroke, on August 28, 2015 (my older brothers’ birthday). Dr. Zaghloul and his team performed a flawless surgery. It went so well that I gave the team a fist bump as I was being carted out of the operating room.

Starting September 2015, my mom and I moved up to Bethesda for me to undergo six weeks of radiation at the NIH. During that time, I had countless care packages and visitors. From my girlfriend, Kristin, who is now my wife, to my dad and brother, I will forever be eternally grateful that God blessed me with such wonderful friends and family. After completing radiation, I returned home to Midland. I had a one month break before starting oral chemotherapy of two drugs, CCNU and Procarbazine, for five months. During this time, I visited my local oncologist weekly for check-ups and blood work. In addition, I traveled to the NIH every other month for blood work, MRIs, and the Natural History Study.

During my treatments, I experienced nausea from chemotherapy, I lost my speech for almost three weeks following my first brain surgery, and had brain swelling from radiation. After my treatments finished, I was often tired, and it took over a year for me to feel like I had all my energy back and to feel completely like myself again. My brain scans have now been clear since August 2015. Praise the Lord! 

My Advice and Hope

I am thankful that God blessed me with a caring and supportive family – my wife, parents and brother. All my prayer warriors and my families’ love is truly humbling. I am thankful for each breath I get to take and my second chance at life. And even more rewarding, I am expecting a baby boy in January 2019. 

I want to tell people don’t ever quit and don’t ever give up hope. Don’t ever ask yourself, "Why is this happening to me?" Trust that the Lord above knows what he’s doing. I have two Bible verses that I leaned on while going through my struggles. Isaiah 55:8-9: “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “For just as the Heavens are higher than the Earth, so are my ways higher than your ways and my thoughts higher than your thoughts.” Jeremiah 29:11: “For I know the plans I have for you, declares the Lord, plans to make you prosper and not to harm you, to give you a future and a hope.”  Always remember you may not be able to change your outcome, but you can ask for God’s help and trust in Him to see you through the hard times. I try not to let myself get caught up in the little things or the everyday worries, I do my best to try and see the bigger picture every day.

I ultimately hope that NCI-CONNECT finds a cure for cancer and brings awareness to the care they provide at the NIH for free. Eliminating the cost burden on patients is significant. I will continue my follow-up care at the NIH and to be thankful for the life I live, which I hope remains cancer-free.

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