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September 24, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Still Rare After 50 Years: Andrea’s Rare Cancer Story

Posted at September 9, 2021 09:00 am by Rohan Narayanan

One month after his 35th birthday, my father, Kenneth, died of leiomyosarcoma (LMS). The journey was quick. He coughed up blood and it brought him into surgery. Massachusetts General Hospital diagnosed him, and he died in another hospital closer to my hometown five months later. 

As a child, I had no capacity to understand nor grieve his death. At 35, the same age he was when he passed, I began to grieve and I have not stopped. I am 55 now and I realize his… Read More

September 17, 2021

TOPIC: Patients & Members, Advocacy, Patient Stories, Voices of Rare Cancer

A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

Posted at September 9, 2021 09:00 am by Rohan Narayanan

Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were ineffective in reducing her pain. Early detection is needed in diagnosing chondrosarcoma, and we found a lack of information available about the disease. 

Other false assumptions and misinformation were communicated… Read More

September 10, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Sharing Makayla’s Voice for Rare Cancer Day

Posted at September 9, 2021 09:00 am by Rohan Narayanan

At the age of 14, I was diagnosed with a rare form of GI tract cancer called gastrointestinal stromal tumors (GIST). 

Living with a rare disease is incredibly complicated, and you must learn how to be your own best advocate. Someone else may have the same disease, but everyone’s experience is going to be drastically different. 

Initially, there was not a lot of knowledge of GIST. Although… Read More

September 3, 2021

TOPIC: Patients & Members, Patient Stories, COVID-19, Voices of Rare Cancer

Martin’s Fight Against Waldenstrom Macroglobulnemia

Posted at September 9, 2021 09:05 am by Rohan Narayanan

I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My knees shook when I was referred to a hematologist and oncologist in 2010. I was given a diagnosis of Monoclonal gammopathy of undetermined significance (MGUS). I was told that I had an indolent lymphoma that may or may not develop, and that I should “go… Read More

August 27, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

A Life Saving Reminder – Loren’s Rare Cancer Journey

Posted at August 8, 2021 09:00 am by Rohan Narayanan

In 2001, I was diagnosed with ocular melanoma. What makes ocular melanoma rare is that only 2,500 people are diagnosed with it each year. Following my diagnosis in October of 2001, I went through numerous tests at Sylvester Cancer Center. In November, I was admitted into the hospital where they implanted a metal plate into my left eye with 20 seeds of radiation, which was removed after a week.  

The doctor continued to see me every six months, and in… Read More