My husband was diagnosed with retro peritoneal DDLS last year. Surgery was unsuccessful and he’s now receiving palliative chemo to help his symptoms. He’s absolutely amazing despite losing 2 stone, all of his hair and most of his energy. The clinical trial we were hoping for has been withdrawn so we’re just hoping for as long a time as possible although the Oncologist is saying its a case of months now. 
Has anyone else experienced this dreadfully cruel type of cancer. Its very rare apparently but I would dearly like to chat to someone about this. 
Thank you x