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One Year Later?

A MyAmyloidosisTeam Member asked a question 💭
Chandler, AZ

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

October 12, 2023
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A MyAmyloidosisTeam Member

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.

October 15, 2023
A MyAmyloidosisTeam Member

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.

October 12, 2023
A MyAmyloidosisTeam Member

Have you gotten a second opinion (go outside your current treating doctor’s network). By law you are allowed a 2nd option.

October 16, 2023
A MyAmyloidosisTeam Member

That’s interesting that it’s his kappa light chains. My rogue light chains are the lambda!! What type of Amyloidosis your husband have?

October 13, 2023
A MyAmyloidosisTeam Member

My husband’s kappa light chains are 128, waiting for chemo to reduce them.

October 13, 2023

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