Living with Glioblastoma
A journey without a map, in memory of Sen. John McCain
We recently lost John McCain to Glioblastoma multiforme or GBM for short. McCain was one of our nation’s finest public servants. He follows Sen. Ted Kennedy who also died of GBM. These two high-profile cases underscore the challenge and desperate need for more effective treatments for this terrible disease. McCain died 1 year after his initial diagnosis.
GBM is the most common aggressive tumor that can form in the brain. It affects the glial cells, which are some of the most important cells in the brain and make up 90% of the brain. Glial is Greek for the word glue. Glioblastoma tumors don’t spread to other organs but they can occur in any part of the brain. They have been described as ‘octopus-like’ as they have tentacles that spread out through the brain. The most common length of survival following diagnosis is 12 to 15 months, with fewer than 3% to 5% of people surviving longer than five years. Without treatment, survival is typically three months.
Clinical Research:
The conduct of clinical research has been slow in coming. GBM is usually diagnosed late, when prognosis is grim. On one hand, individuals may be likely to choose to participate in a clinical trial since current standard of care has not proving to be effect. On the other hand, there is so little time that often the individual chooses to live their life without the side effects of the therapies that are available. A search for clinical trials there are almost 1000 trials listed but the majority are variations on radiation and chemotherapy and most are still in the early phase of development. Check out the latest research here.
Probably the most significant advancement today is the identification of a gene called MGMT. Studies have found that standard therapy of radiation combined with temozolomide works best for patients who have this MGMT gene turned “off” (methylated). Those patients with MGMT-unmethylated, which is overexpressed in 60 % of glioblastomas and provides an inherent resistance to agents such as temozolomide, have limited options and difficult choices. MGMT is considered to be a prognostic factor for GBM.
A life’s journey with no maps:
As someone who lived this ‘journey with no maps’, I am often asked if I think GBM is becoming more common. This is actually not an easy question for me to answer for three reasons.
First, as a scientist I recognize that our ability to diagnose all cancers earlier results in the perspective that GBM, specifically, is more prevalent. This cancer is very difficult to detect because patients typically complain of symptoms such as confused vision, trouble with memory, dizziness and headaches. The symptoms are somewhat nonspecific, and vary from person to person, and may not persist. The disease is therefore impossible to diagnose based on symptoms alone. Many sufferers are unaware they have the tumor until they start to have seizures. There is no clear way to prevent the disease and the treatment, radiation and chemotherapy, has not changed in years.
Second, the recent diagnosis of very public individuals results in an increase in news covering this very aggressive and still incurable cancer. Senator Ted Kennedy died on August 25, 2009 from GBM at the age of 77. He suffered a seizure in May 2008 while walking his dogs. Kennedy had surgery followed by radiation therapy. He lived less than a year from his diagnosis. Beau Biden started experiencing signs of the tumor in 2010 after complaining of a headache, numbness and at times paralysis, thinking he had suffered from a mild stroke. After years of back and forth with doctors, he was finally diagnosed with the cancer in 2013. He then received radiation and chemotherapy treatments but died 2 years after his diagnosis at age 46. Senator John McCain’s death from GBM on August 25th, 2019 has made this cancer feel like it is becoming more prevalent. Just a little over a year ago after he underwent surgery to remove a blood clot over his left eye. He discontinued all treatment just a few days before his death.
Third, and probably the most important reason, is that my husband, Randy, was diagnosed with GBM in April 2008 and died in April 2010. As a result, I am very active in GBM advocacy groups and people reach out to me with questions and support. Randy’s Club was formed by myself and my two sons in memory of Randy and to develop cannabis products that ‘we wished we had when Randy, a father and husband, was alive’.
Keith L. Black, M.D., a surgical oncologists at Cedars Sinai Hospital in Los Angeles, CA said: “If a disorder of the brain doesn’t already affect you or someone you love, chances are that someday it will.”
This article was written to honor so many individuals, from Ted Kennedy, Beau Biden, and John McCain, and so many others whose journey’s I have shared, and most importantly, to Randy Strause, a wonderful father and husband.
