On the 13th October Romy started a new phase of her treatment, 13-CIS Retinoic Acid, an oral medicine designed for severe acne, this medicine was discovered to help mature the cells in neuroblastoma into normal cells. The medicine is administered twice a day at home but with lots of warnings to not get any on our skin, to dispose of the syringes carefully in a separate waste bag etc. For Romy, the main side effects will be extremely dry skin and cracked lips, even to the point of being painful. More serious side effects can include raised fat levels in the blood and liver dysfunction. She is on the medicine for two weeks at a time with breaks in between.
Helen & Tom