They told John he only had a month left to live…he knew he had to keep fighting
John Bannon was told he had about a month left to live. For over a decade, John searched for relief to try to manage his increasingly severe nosebleeds. Bleeds so bad that he became known as “the nosebleed guy” to the local ambulance team – and so severe he was reliant on 2 to 4 units of blood every other week. In a matter of months, John went from 220 pounds down to 165. His organs were beginning to fail.
John had tried everything, it felt like. He had multiple cauterizations at Yale and UPenn, made a trip to San Diego to try Avastin, had his nose embolized at Columbia; none of it was effective in getting the bleeds under control. “It felt like there was no hope, but I wasn’t going to give up,” John said. “I knew I had to keep fighting. Between my wife and I, we have 11 children and 17 grandchildren. Five of my kids have HHT, and some of my grandkids do as well. I was determined to find something before I left this planet that would help them not struggle like I had.”
In June 2018, the Bannons noticed that Cure HHT was hosting a walk in Brooklyn, NY. By that point, John was in a wheelchair and too weak to attend. But his daughter made the trip. There, she told her father’s story to Marianne Clancy, Cure HHT’s Executive Director. “Marianne told my daughter: I have a doctor,” John remembers. Six days later, John and his wife Suzanne were at Cleveland Clinic meeting with Dr. Joseph Parambil, the Director of the HHT Center of Excellence at Cleveland Clinic, to discuss a new, repurposed cancer drug called Pazopanib that had been showing promise in early trials with HHT patients.
“At that point, I was skeptical because I had tried everything,” John says. “But Dr. Parambil was so positive and so confident. He said, ‘We’re going to be friends and be seeing each other for a long time.’”
John started the drug, and eventually also received sclerotherapy treatment in combination with it. “We were just waiting for the shoe to drop and the bleeds to get bad again,” Suzanne remembers. “But it never did. It felt like we could finally breathe again.”
Six years have passed since that visit, and John has never needed another transfusion. His hemoglobin is steady in the 13s.
“I turn 74 this April. I never thought I would see that number,” John says. “It’s all because of the work these people do – Cure HHT and doctors like Dr. Parambil who care so much. My hope is that my grandkids will have a better life than I had. And if they can benefit from my condition, that’s all I can ask for. That’s legacy.”
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When John started the drug, then known by the commercial name of Votrient, it was owned by pharmaceutical company Glaxo-Smith-Kline (GSK) and was being used at a lower dose in early-stage clinical studies for HHT. However, GSK sold the drug to Novartis and they were no longer interested in continuing the use of Votrient/pazopanib in HHT-related trials.
It was then that Cure HHT made the bold and unprecedented decision to raise the funds necessary to manufacture a low-dose compound of the drug ourselves. In October, recruitment officially launched for the pazopanib clinical trial in hopes it becomes the first FDA approved HHT treatment, making the drug more accessible for HHT patients everywhere. Click here to learn more about the pazopanib clinical trials.