Dear All,
My name is Paula and I am 43 years of age and live in Perth, WA
I have found the above entries so helpful, it has allowed me to believe that things can and will get better.
I have cardiac amyloidosis and MM. I have just finished four cycles of the VCD which sadly didn’t bring the number of proteins down. I have recently commenced revlimid instead of the cyclophosphamide and remaining on the velcade and dex. I have everything crossed as my heart failure is worsening.
One of my cardiologists (I have 3!) infomrmed me that I needed to prepare for end of life and to get my affairs into order. It’s probably one of the hardest conversations I have had to be part of. It was all so surreal. It has however, given me a new sense of determination to survive this rare and difficult disease.
I am so happy to have found this discussion forum and can’t wait to chat more.
Paula
