Sylva’s Story

16.11.2023

Within Royal Perth Hospital (RPH), a team of dedicated haematologists are conducting clinical trials to improve patient outcomes.

On average, up to 100 patients a month come into haematology at RPH to take part in clinical trials. One of those patients was a Perth great-grandmother, Sylva Harben.

Sylva had been diagnosed with a rare type of blood cancer that occurs within the bone marrow called myelofibrosis.

With myelofibrosis, normal bone marrow is replaced with scar-like material called “fibrosis”. This process disrupts the normal production of blood cells and causes the bone marrow to fail. It leaves patients feeling tired, weak and in pain.

Sadly, the prognosis for myelofibrosis is poor - there is no cure other than a special kind of treatment called a bone marrow stem cell transplant. However, this option isn’t available to most patients with myelofibrosis due to the high-risk nature of the procedure.

After Sylva was diagnosed with myelofibrosis, she spent a number of years receiving treatment but was seeing no improvement. It was at that time that RPH Haematologist Dr Hun Chuah suggested Sylva join a clinical trial to combine her current treatment with a new compound.

At that point, Sylva required a blood transfusion every one to two weeks to help manage her condition and was depending on pain relief to help with her cancer pain.

Sylva decided to join the clinical trial hoping that, even if it couldn’t help her, at least it could help someone else. However, she soon started to see an improvement from the new treatment.

“I think it is a wonder drug - I have improved so much. I started having transfusions weekly. Now it’s November and I haven’t had a transfusion since April last year,” Sylva shared recently.

Thanks to the research happening at RPH, Sylva’s life started getting back to normal.

Before starting on the trial Sylva was struggling with severe fatigue and was having to give up many of her everyday activities.

“I had to give up lawn bowls, going on tour and was having to rest constantly. It was having a big impact on my life.”

Now Sylva can enjoy dinner with her friends and spending time with her great-granddaughters.

“The clinical trial is ongoing and gives patients with myelofibrosis an option and hope outside standard treatment which is often limited,” shares Sylva’s doctor, Dr Hun Chuah.

Sylva believes that without the clinical trial, the myelofibrosis would have killed her by now.

“I think I would have died by now. There is no cure for what I have. Certainly, this new drug is keeping it at bay.”

Research is the key to finding new treatments to help patients like Sylva.

This Christmas Sylva will be having big Christmas celebrations with her family. With all her children, grandchildren and great-grandchildren coming to Perth, there will be multiple Christmas celebrations in December.

“Christmas will be here at my house this year and a few years ago that wouldn’t have been possible,” Sylva shared, but thanks to the new treatment her fatigue is under control.

“I wouldn’t be here without the research team – I am lucky to be on this wonder drug. For me it is lifesaving.”

Thank you to all our donors who help fund lifesaving research that helps patients like Sylva access new treatments.