Last Updated: 4/10/2008
I am a 14 month + Glioblastoma brain tumor survivor. I am writing this because there are plenty of reasons for hope! Although I have been a very lucky man, I struggled at first with the diagnosis and had trouble finding survivor stories like mine has become.
Background
I had a seizure while running on a treadmill at work on November 14th, 2006 (that might be the same treadmill in the picture above, but that is a recent picture (more about the importance of exercise in recovery later). I wasn’t having headaches, so in hindsight I was lucky that my body sent a message that something was wrong.
After being taken to the emergency room and getting a CT scan, I was discharged around 3:30 that day - with no restrictions. Since the only test that was negative at the emergency room was my low red blood cell count (due to donating blood the day before), I resumed my normal routine. Since a few people said “I think you had a seizure”, I made an appointment to see my doctor the following Tuesday, since being short on red blood cells won't cause a seizure!
My primary care doctor referred me to a neurologist and helped me get an appointment the next day. I went to see the neurologist Wednesday morning (the day before Thanksgiving). He ordered a brain MRI, took my driver's license number to report to the state, and told me to park my car since by law I must be seizure free for six months before I can drive again. I received a call at home from the doctor that evening at 8:45 p.m. He told me they “saw a “lesion” less than 5 mm in diameter on my right temporal lobe. He said I needed to check-in to the hospital on Friday when I returned from a short Thanksgiving trip, but “have a Happy Thanksgiving”. Now I was faced with the need to tell my teenage children and my family that “I have a brain tumor”. And as you know, just about everything you read on-line will tell you that this is similar to getting the “death sentence.” Fortunately I didn’t accept the “death sentence”. At 56, I was too young and healthy to be thinking about dying.
My “awake” surgery on November 30th was successful. They removed a primary brain tumor and an MRI later that day confirmed that I am “tumor-free”. Unfortunately the tumor was diagnosed as glioblasoma – the worst kind. I was home Friday afternoon. By Sunday I felt about 95% normal. The prognosis? Since the tumor was small and identified early (by the seizure) and it was in a location that was relatively easy to remove, my chances were better than most patients. After the surgery Dr. Arlen Mintz, the surgeon, drew a “bell” curve and said the top of the curve was 12 months, but 2-3% of patients with glioblastoma tumors are long term survivors. That survival rate is better today than it was in 2006 because of medical advances. Since I knew there was a chance for being a long term survivor, I made a commitment to be in that elite group! But the truth was that I was fearful and had to be realistic. What if I only had 6-12 months to live?
I was in good physical shape which has helped my recovery. That would continue to be an asset. I started walking and was on the treadmill two weeks later. My outlook on life changed in many ways. I vowed to continue to focus on the positive! I’ve also gained more appreciation for others - and their loved ones - who have had to go through health situations like this or worse. My family and I have been fortunate.
Monday-Friday radiation therapy started at on December 18th to prevent a reoccurrence of a tumor. I also took Temodar on a daily basis. In late January, I went to the Florida Brain Tumor Association’s annual conference in Fort Lauderdale. I learned a lot and I will never forget David Bailey’s advice to me as a “newly diagnosed GBM patient.” “Find someone worse off than yourself, and help them!” I was surprised by his answer, but I have in fact followed his advice and I will continue to try and help others with brain tumors.
I tolerated the radiation therapy well, but neither the radiation or the Temodar treatment had an impact. The tumor grew back in the same location, so I had a second “resection” surgery in April, 2007.
During the second surgery - which was also successful, I developed a serious infection and a brain abscess. A third surgery (not awake this time) was completed to clean up the infected area, and they put me on some strong antibiotics. They installed a “port” in my chest and they started a 30 day regimen of twice a day antibiotics. The infection was treated successfully.
I started a vaccine therapy in late May/early June of 2007. Initially it seemed to be working and we were optimistic. However on August 2nd, a scheduled MRI showed a third tumor was growing in the original location. The vaccine therapy failed!
Doctors agreed that the next treatment would be a combination of Avastin (which destroys blood vessels and “starves” tumors), and CPT-11, a proven chemo drug that kills cells which could become tumors. My surgeon wanted to operate again, but my oncologist said to try this combo treatment which has had more than a 50% success rate. Dr. Okada also thought that my chances for success with this treatment were increased because of the failed vaccine treatment because my T-cells were worn down from vaccine attacks. So the news about the failed vaccine wasn’t all bad! My first Avastin/CPT-11 treatment was on August 7th, 2007.
My first MRI since the start of the Avastin/CPT-11 treatment was in late September. There was “DRAMATIC improvement”. The tumor had shrunk by over 30%. In the meantime, Avastin/CPT-11 treatments continued with minimal side effects every two weeks. On November 29th, I had another good MRI. Even better than the last one! The protocol was working. On January 31st, 2008 I had another MRI and it was “the best we can expect”. There may be some scar tissue remaining, but doctors are hopeful I can be declared “in remission” this summer.
Other than occasional fatigue, I work full-time and live a normal life. I exercise regularly, play some golf, and even went skiing recently (with a helmet).
My advice for new diagnosed patients
I offer the following advice to newly diagnosed patients, families, and friends:
- Having a Brain Tumor is not a death sentence! It is a reason to change your lifestyle and priorities, but advances in medical treatments have greatly improved the chances for long term survival. There are plenty of reasons for hope!
- Avoid the “C” word. Saying you have a brain tumor is better than saying you have brain cancer. People will want to treat you like your days are numbered in any event, but cancer sounds worse – especially to younger people.
- Don’t underestimate the power of prayer (by people of all religions). I was deeply touched by the outpouring of support from family and friends. Strengthen you spiritual side.
- With all the negative statistics and information on the internet, you need to realize that there are more and more survivors. You just need to find the best doctors for your situation and follow their medical advice – and get second or third opinions if you have any doubt about what you are told. Keep up to date about new treatments.
- Always be thinking about the next step – and keep pestering your doctor if necessary. What needs to happen if the current treatment fails? Time is of the essence, so you can’t waste time between protocols – “t” cells are very aggressive.
- Exercise, eat healthy foods, and discipline your lifestyle.
- Don’t try and work as hard as you did before (assuming you go back to work)
- Push yourself to live a normal life, but get plenty of sleep
- Every day is a gift, so enjoy life!
Update: 4/22/2008
On March 13, 2008, I had a hemorrhage in my brain. After a CT scan a week later, I still had a blood mass in my brain, which pressed to the left and created weakness on my left side. I started home rehab therapy to reduce the weakness. Since the blood mass wasn’t absorbed by the body, my surgeon elected to perform surgery on April 14th. Fortunately the surgery was able to reduce the blood mass and
I had immediate improvement in functionality and reduced weakness. I am currently looking for a new treatment to replace Avastin/CPT-11 and should know what the next step is by the end of April. It is important to be optimistic and I certainly am. I will have another update in June
