I’m Not Average: Jack’s Journey Battling Rare Blood Cancer

When Jack began to feel winded during daily power walks, little did he know it was the beginning of his journey with Waldenström macroglobulinemia (WM), a rare and incurable blood cancer.

Jack was just 58 and had a successful career in IT and a busy home life. When he received the life-changing news, he faced a five-year survival rate, and the possibility of not seeing the birth of his grandchildren.  

Jack’s diagnosis was not an easy feat for his medical team.  WM is a very rare type of non-Hodgkin lymphoma. According to the American Cancer Society, only 1,500 people are diagnosed with WM each year in the United States.

At the time of his diagnosis, there were no FDA-approved treatments, so he’s taken a variety of medicines approved for other types of lymphomas and leukemias and participated in five clinical trials to try to help find a treatment for his cancer. These innovative medicines kept his cancer at bay for 10 months, but last spring, he learned his cancer had relapsed.

Although his cancer has returned, Jack is able to continue controlling his disease thanks to scientific research and innovation. If he does become resistant to his current therapies, the first-ever drug approved to treat WM has become available.  

Since his diagnosis, Jack has made some compelling changes in life. He retired from his career as an IT research analyst and is now a patient advocate for others with rare diseases.

 “I’m convinced that all of the work that is being done by pharmaceutical and biotechnology firms will deliver something that will extend my life and help me beat my cancer,” he said.

Jack’s story is part of PhRMA’s new campaign, I’m Not Average, featuring inspirational stories from individuals about the powerful impact that innovative cancer medicines have had on their lives.

For more information on the campaign, please visit http://www.fromhopetocures.org/patients.

Join the conversation about advances and innovations in cancer medicines using the hashtag #NotAverage.