Hello all- I was just diagnosed with Primary AL on June 1, after being sick with everything under the sun for probably 15 months for sure. Finally ended up in the hospital in May with pretty bad congestive heart failure on both sides , whereas a year before I had moderate diastolic dysfunction on the left side; my kidneys were down to 50% function- spilling lots of protein, probably worse now. A kidney biopsy yielded the amyloidosis diagnosis, and I was fortunate enough to start on velcade almost right away. I have completed 2 rounds, and the lambda light chains numbers has really, really dropped.
What I am so afraid of is that all these symptoms are showing up now and I never feel good anymore. Is this because the amyloidosis is getting worse? I am on my week off of the chemo, so I have not had it for 9 days and don't know why I can't breathe well, sleep well, digest well, I am swelling up at night, my skin itches and is somewhat rashy. I am miserable; have called my doctor and got meds but do you ever feel good again? Does this mean it's not working? Am I going to die? By the way, my heart was too damaged for a stem cell transplant and it feels worse than a month and a half ago. I am 55 and have a 6 year old daughter. I am so scared; I do not want to leave her and my other kids behind so soon. Thanks for sharing your experiences or advice.