Glioblastoma Awareness Day

Today is Glioblastoma Awareness Day. We wanted to share some facts with you all (scroll to end if you just want to see Tom’s current status).

Glioblastoma Facts & Figures

Glioblastoma (or GBM) is one of the most complex, deadly, and treatment-resistant cancers.

More than 13,000 Americans are expected to receive a GBM diagnosis in 2020.

GBM accounts for 48 percent of all primary malignant brain tumors.

It is estimated that more than 10,000 individuals in the United States will succumb to glioblastoma every year.

The five-year survival rate for glioblastoma patients is only 6.8 percent, and the average length of survival for glioblastoma patients is estimated to be only 12 to 18 months.

Survival rates and mortality statistics for GBM have been virtually unchanged for decades.

Despite first being identified in the scientific literature in the 1920’s, there have only been four drugs and one device ever approved by the FDA for the treatment of glioblastoma.

None of these treatments have succeeded in significantly extending patient lives beyond a few extra months.

Some patients have a glioblastoma upon diagnosis (de novo or primary GBM), while other patients’ tumors start as another, lower-grade type of brain tumor and over time progress into a glioblastoma (secondary GBM). A vast majority of GBM diagnoses are de novo.

Mean age at diagnosis is 64.

In addition to being life-threatening, GBM – and its harsh treatments – inflict devastation upon the brain, which controls cognition, mood, behavior, and every function of every organ and body part.

Many patients will lose their ability to work, drive, and a host of other functions that contribute to one’s sense of self and independence.

Glioblastoma is also one of the more expensive cancers to treat, often leaving patients and families with major financial hardship on top of the burdens of the disease.

Prominent Americans who’ve been lost to this type of cancer include: Beau Biden (son of former Vice President Joe Biden, and former Attorney General for the state of Delaware); Gary Carter (Hall of Fame Major League Baseball player); U.S. Senator Edward “Ted” Kennedy (Democratic politician); U.S. Senator John McCain (Republican politician and former presidential nominee); and Edward “Tug” McGraw (Major League Baseball player and father of country music star and actor, Tim McGraw).

Here’s the link to today’s presentation if you would like to hear more lf the latest on glioblastoma and hear from other survivors and providers:

Watch the Virtual GBM Awareness Day 

And now for the update:

It’s been just over 4 years since Tom’s diagnosis. We recently had Tom’s MRI and two spots have persisted. While they don’t present as typical tumor, one has grown about 1mm from his last scan while the other faded somewhat. We discussed the option of surgery to remove and analyze the spot with his care team but we all came to the conclusion this week that the spot is too small to warrant surgery and again is not indicative of tumor. Hopefully it will go away on its own like the other spots have. We will re-evaluate at the next scan. We are also going to work on getting a second opinion in the event we need a more in-depth consult in the future. Tom feels great, has no symptoms and is still riding his bike as often as possible. As always, thanks for all of your amazing support!

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