One Year Later?
I have AL Amyloidosis
I completed 6 months of weekly CYBORD+D plus 6 months bi-monthly CYBORD+D treatments-last treatment was July 2023
I reached CHR and now 3 months later my lambda light chain numbers are barely creeping up.
It is 27.
I just started today on Darzalex Faspro once monthly. My doctor is talking about starting the WHOLE treatment process again in January. The CYBORD+D. Just wondering, is this usual? I just don’t think I can handle another 6 months of treatment. I was sick all… read more
I started the Darzalex once a month since August. Labs are normal, light chains good, so I’ll stay on this for 18 mos my Dr said. In Jan 2024 , will get bone marrow rechecked.I hope yours gets better Jan.
I wish I had something insightful to share but I am only in the 3rd month of my maintenance (monthly Darzalex Faspro). Sending prayers and positive vibes your way.
Have you gotten a second opinion (go outside your current treating doctor’s network). By law you are allowed a 2nd option.
That’s interesting that it’s his kappa light chains. My rogue light chains are the lambda!! What type of Amyloidosis your husband have?
My husband’s kappa light chains are 128, waiting for chemo to reduce them.
Carpal Tunnel. Surgery 5 Years Ago. Before Wild Amyloidosis Diag. Carpal Came Back 1 Year Later. Now Exploring New Ways Forward. Help?
I've Been On Tafamidis 3yrs Now. Thought I'd Be A Goner By Now. Must Be Working . Anyone Else Passing The 3yr Mark On Tafamidis?
I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?