Hi - I am a 68 yr old female from Adelaide, South Australia. I was diagnosed with WG in 1991. My left eustachian tube, both tear ducts, sinuses and lungs were affected. Treatment started with 85mg Prednisolone, 100mg Cyclophosphamide, Bactrin 2 x daily. This was the middle of July 1991. By the end of Jan 1992, I was taking 38mg Prednisolone, 100 Cyclophosphamide as well as Bactin. I weigh 50 kg. Soon my hair fell out, my torso and face puffed with Prednisolone. I wore a grommet in my left ear which fell out numerous times, had my tear ducts replaced, cataracts removed and lived with a collapsed upper lung lobe. The collapse was dangerously close to a major artery which is why it was left.

I had seventeen good years without any drugs before bladder cancer was diagnosed. This was caused by Cyclophosphamide. My cancer stage was initially T1G3. Bladder removal was recommended and 3 months after major surgery, bladder cancer was found to have metastasised to nearby lymph nodes. This altered my staging to T1G4 -( very frightening). A CAT scan did not find any other involvement. Radiation and chemo followed with its fallout of gut strictures and hair loss but the good news is that I am still around and in relatively good shape. My left lung collapsed totally last year (2016) and doctors were able to find their way into my v distorted left lung to enlarge airways and get the lung working again. This may turn out to be a six monthly proceedure.