a patient’s perspective – janet’s story

Janet has endured a multitude of harsh and debilitating treatments since learning she had Myelodysplastic Syndrome (a form of leukaemia) early in 2002. During this time she also endured a relapse, various chest and lung infections and a kidney malfunction resulting in long hospital stays and a constant battle to maintain a positive attitude.

It was therefore with uncertainty but also hope that in May 2012 she joined a clinical trial using epigenetic Azacitidine/Eltrombopag drugs (see article ‘A Researcher’s Insight’). The Eltrombopag is administered for two weeks to boost the Platelet count. This is then followed by an injection of Azacitidine administered under the skin (subcutaneously) into the abdomen in two doses. The procedure takes place for seven consecutive days (excluding weekends), followed by a break of two and a half weeks, when the procedure is then re-commenced. As an out-patient at Peter Mac, Janet has responded well to the trial and feels she is now able to maintain a reasonably normal lifestyle, something she hasn’t been able to do for almost 12 years.

Coupled with a strict diet containing fruit and vegetable juices, seeds, water with no tea or coffee along with various precautions to limit infections, Janet says she also does careful daily exercise of mind and body, spiritual meditation and prayer which helps her maintain a positive attitude.

“Types of cancers vary widely, in the same way that successful treatments need to be wide and varied,” says Janet. “Whilst most research trials today may be called experimental, over time these will improve greatly. The quality of life for the patients will improve enormously as they benefit from the results of each new stage of research. I would like to congratulate the Snowdome Foundation (and other organisations) for their efforts to provide funding for the fight against blood cancers. Please continue the good work already achieved.”

“Trials require finance and without these trials we shall never find a suitable and satisfactory cure. It is up to all of us – big business and the private donor, to help shoulder the financial burden to help these trials continue”, Janet says.

To date, Snowdome has helped 212 Australian blood cancer patients receive hope through participation on clinical trials.