Mum has been out of hospital for a week and a half!! the minute she got out she felt a bit better, though incredibly weak and still needing a wheelchair. But oh so happy!! it makes such a difference not being there anymore and not having a hospital mattress to sleep on. Although we are still not home yet (we have had to relocate from the country for her treatment) it was a much needed change to improve her health, both physically and mentally.
She's lost a lot of weight due to a loss of taste - has anyone else had this side effect with the drug? She can taste strong flavours but most food has a bitter after taste... we are trying an array of food but it's tough finding anything that she likes and doesn't feel nauseated eating.
The other side effect is getting her platelets back up again. Transfusions 3 x a week are helping, and they are slowly creeping back up again. Haemoglobin is stable though! Until her platelets have improved we will stay in the city, and the Dr is keeping her on 200mg for now. The CLL appears to be under control and lymph nodes have shrunk.
All in all, much improvement... we just need to get some food into her!!!