HOULTON, Maine — Warren Tweedie, of Houlton, could not seem to shake off feeling ill so he decided to consult his primary care provider.
“It began with a persistent cough,” said Warren. “For several months from 2010-2011, I worked with my primary care provider to figure out if I had some sort of infection or asthma, but nothing was working. I didn’t feel any better. Christine Thomas, PA-C, was great. She never gave up on trying to figure out what was wrong with me.”
At the end of spring in 2011, Warren went for blood work which revealed he was anemic. This came as a surprise to Warren as it had never showed up before. He was referred to Dr. Vatsala Kirtani, a hematologist/oncologist at TAMC’s Aroostook Cancer Care.
“Dr. Kirtani found it strange that I would suddenly be anemic since it doesn’t usually pop up in an otherwise healthy person,” said Warren.
Warren was sent for more in depth blood tests. When the results came in he was given the terrible news that he had cancer.
“To make matters worse, we needed more tests to determine exactly what kind of cancer I had,” said Warren. “Fear of the unknown was the worst part.”
After a few more tests, Warren was told he had an extremely rare form of blood cancer: Waldenstrom’s macroglobulinemia. Only 1,800 people are diagnosed with this type of it in the United States annually, and most of those patients are over 70 years old. Warren was 51 years old when diagnosed.
“I looked up my diagnosis online on a Friday and read that my life expectancy was only a few years,” said Warren. “I was worried and had to wait until Monday to talk to my doctor about it. I should not have believed the outdated data that I found online.”
Dr. Kirtani consulted with her former co-workers and peers in New York and at Dana-Farber Cancer Institute for their thoughts on treatment options for such a rare type of cancer. Fortunately, Dana-Farber had a Waldenstrom’s macroglobulinemia expert who was about to begin a clinical trial on a new medication.
“We went to Dana-Farber to have blood work done in order to prepare for the clinical trial,” said Warren. “They needed to determine if I was a candidate and create a plan for me.”
Warren began the trial in January of 2012 and continued with it until March. He began to feel intense pain in one of his legs and was sent for a PET scan. The scan showed Warren had a cancerous spot near his spine that was not reacting to the trial drugs he was taking. Due to the location of the spot, it could not be biopsied either.
“The decision at that point was rigorous chemotherapy,” said Warren. “I began my six sessions in May of that year and was fortunate that I was only occasionally nauseous. I lost my hair as I was told I would, but that’s all back now.”
A follow-up PET scan revealed that Warren no longer had spots in any lymph nodes and was now able to enter into a maintenance phase of chemo. Blood tests have shown that Warren’s levels have remained normal.
“The last two years have been hectic,” said Warren. “Travelling for treatment and still trying to work full-time was difficult, but my family and my co-workers were very supportive.”
Over the course of his treatment, Warren managed to only miss a handful of workdays due to creative scheduling and accommodating co-workers.
“I’m extremely grateful for the support of my family and friends,” said Warren. “Everyone needs help or support when they’re fighting cancer. Reach out to your community, your church, and your friends and family. They want to help; they just need you to tell them how they can help you.”
