Barry Gore | Aplastic Anemia and MDS International Foundation

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Barry Gore

As a young man, Barry Gore was a top-40 celebrity disc jockey, complete with an adoring fan club in the Greater Boston area. But like most first jobs, it lost its luster and he settled into sales and marketing while getting his MBA.

He became the owner of a prosperous machine manufacturing business that his son now runs. But when he was still in his fifties, a family history of heart disease finally caught up with him. Barry’s internist directed him to a cardiologist, suspicious that his complaint of chest pain was more than acid reflux. He was right, and Barry underwent triple-bypass surgery.

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Disease

Twenty years and 27 stents later, Barry felt like he was developing another blockage. He went back to his regular cardiac team at Mount Sinai Hospital in New York.

They quickly began prepping him for an angioplasty, believing that he needed a stent again. The first step was conducting a complete blood count. Barry was preparing himself psychologically for what he thought would be his 28th stent. Instead, the doctor told him that he didn’t know how he even got to the hospital alive with a hemoglobin of only five. Barry simply said that it hadn't been easy.

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Treatment

The hematologist/oncologist was called in, and Barry was stabilized after three days of transfusions. He soon had a bone marrow tap. His MDS diagnosis was so severe that they gave him six to nine months to live.

That was five years ago. As he says, “I fooled them!” He was put on Vidaza, and they were able to stop transfusing him in 61 days. Barry says that to this day, his doctor doesn’t know why it worked on him so well and so fast. “But it’s not a fun life,” he told us. One week every month, he needs to have five consecutive days of chemotherapy and suffer the intense intestinal side effects that go along with it. 

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Education

Because of his longstanding cardiac condition, Barry already had a first-rate team in place at a leading medical institution close to home, so the former Air Force chaplain's MDS was swiftly identified and his care began without delay.

He and his wife were also quick studies on the biology of MDS and the treatment options that were right for him. While he doesn’t exactly say that they consider his successful treatment a miracle, he does refer to the prayers that are said for him at the Western Wall on the Temple Mount in the Old City of Jerusalem as a gift that makes a difference to his peace of mind.

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Support

Barry has been to two AAMDSIF Patient and Family Conferences recently and really enjoys the opportunity to mingle and socialize with people who are living the same way as he is. “They’re just as scared as you, maybe more so."

"But being together at the conferences helps each of us recognize that there is hope. People say to me, 'You look fine,' and I say, 'Yeah, because I’m getting good treatment.'” Knowing that the average person may not have access to the right kind of specialist, Barry believes he was very fortunate. “I was already being treated for my heart by a great medical team at a great institution, and they found the MDS. People like to hear that you can live with MDS – especially the newly diagnosed.”