Has Anyone With AL Been On Chemo, Achieved Complete Response And Then On Maintenance Chemo? | MyAmyloidosisTeam

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Has Anyone With AL Been On Chemo, Achieved Complete Response And Then On Maintenance Chemo?
A MyAmyloidosisTeam Member asked a question 💭

Every time I ask how long I have to keep doing the chemo it’s always for the foreseeable future. I’m on it every other week. It would be nice to be done with it. At least for a while. 😞

I guess I should just be grateful it’s working!

posted September 28, 2023 (edited)
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A MyAmyloidosisTeam Member

As I understood it there is a limit on how many weekly infusions I could receive without having an adverse reaction. I don't know for sure what drug was the concern. The doctor did tell me they were monitoring me with blood work to know when I had reached the limit. I reached full remission before I reached the limit and now get Darzalex Fastpro every 28 days.

posted October 7, 2023
A MyAmyloidosisTeam Member

Yes I am grateful it is working. Hoping to take a break also.

posted October 14, 2023
A MyAmyloidosisTeam Member

I was on chemo for 6 months, then went to every other week for 6 months. Finally reached CHR.
I had a 3 month respite (which was great except then I had Dysautonomia (nerve damage) from the chemo. So I’ve been fighting nausea, com, diarrhea and low BP for the last few months. Just starting to feel better and had my first maintenance Darzalex shot yesterday. I assume they watch your light chain numbers and if they start to climb they will resume some sort of chemo regimen. Sure is nice not having to go in for treatment every week though! Fingers crossed 🤞

posted October 13, 2023
A MyAmyloidosisTeam Member

Yes, I was on Daratumumab+Dexamethasone maintenance therapy for I think over a year and a half at least. I think they want to be as sure as possible that your remission is what My Doctor calls "firm"remission. They are now doing blood work every three months and told me to report any concerning symptoms. It probably depends on what drug(s) are being used too.

posted October 6, 2023
A MyAmyloidosisTeam Member

Diana3 the only time I feel stiff is when I overdo anything like cleaning or gardening. I have to learn I can do as much as I used to 😿

Very frustrating.

posted October 3, 2023

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