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MDS patient Birgit credits clinical trial for "feeling great"
Birgit Anthony, who was one of the first people to go on a clinical trial in Australia for azacitidine (Vidaza), describes the drug as "really quite a miracle".
"It's been very good for me and has given me quality of life and hopefully many years of healthy living," said Birgit, 64, of Wodonga/ "One of my doctors recently told me that without it I would have had serious health problems by now. Before I went on the trial, cleaning the shower or making the bed was exhausting for me. Now I can swim a kilometre in 50 minutes which I do three to four times a week."
Prior to her diagnosis with myelodysplastic syndrome (MDS) at the end of 2008, Birgit hadn't been well for two years. She'd been to doctors often about her symptoms of extreme tiredness, having no energy and lots of bruises. It wasn't until March 2008 that her doctor said something wasn't right with her blood and told her to come back in six months, when he'd check everything again. After being prescribed antibiotics for a chest infection in May, Birgit went to Europe on an eight-week holiday to visit family and friends in June.
"I could hardly do anything on this particular holiday and I couldn't come home quickly enough," she said. "I had no energy and went to bed each night after dinner. People I'd seen three years earlier said - 'I don't know what's happened to you', and when I came back, my husband got a bit of a shock because I was so pale. At first I put it down to getting older and dismissed it, but I had a lot of unexplainable bruising."
She went back to her GP in October and was sent off for a blood test. "I'll never forget it - I got a call from the hospital to come in straight away for a blood transfusion because my haemoglobin was dangerously low." Following blood tests and a bone marrow biopsy, Birgit was diagnosed with an agressive form of MDS in November 2008 and referred to a haematologist in Melbourne.
"I was very sick and my prognosis wasn't very good," said Birgit. She was offered two treatment options - radical chemotherapy or a clinical trial for azacitidine. "I knew absolutely nothing about the trial but decided to give it a go. There was a research centre for the trial in Wodonga and I was the first person to go on it there - on 12 February 2009."
Birgit's treatment regimen is two injections of Vidaza each day for seven days, followed by a 21-day break, before starting the cycle again. This month she completes the 24 cycles that make up the two-year trial. During the first 10 months of the trial, Birgit also took thalidomide. She said the azacitidine treatment takes four months to take effect, so to "bump up" her blood levels at the beginning of the trial, she had a blood transfusion in February and another in April 2009.
"At the end of May my blood counts came up, and up and up. My haemoglobin got to 14.4 at one stage, but is usually around 12 - 13. I haven't had a transfusion since April 2009 - that's 22 months!" When the treatment is administered, and for a day or two afterward, Birgit has some temporary nausea which she says is "no big deal and is handled quite well with anti-nausea medication."
"I feel great and have all the energy in the world," said Birgit, for whom 2010 was a fantastic year. She'd travelled with friends to Darwin and through Central Australia and climbed part of Uluru and to the top of Kings Canyon. "All my holidays are planned around the treatment and we plan our life around it too. I've been assured that the medication will continue to be provided to me," said Birgit who had bone marrow biopsies in June and October last year.
"These showed there was very little disease left," she explained. "A fellow diagnosed around the same time as me chose not to go on the trial because he was concerned about negative reports of the side-effects. He told me he's very sorry about that decision. The trial was closed after it got the required 80 patients and he is waiting for the drug (azacitidine) to be approved. Every two weeks he has a transfusion of four units of blood."
Birgit was "over the moon" when her oncologist told her about earlier trials of the drug in New York that have been going over 10 years. "He said, 'there's good news and bad news'. The good news was these patients are still alive today and the bad news - I would have to be on this medication for the rest of my life. I'm glad to have had the opportunity to get on this clinical trial at the right time. It's been a great experience for me and I'm very thankful."
