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On Monthly Maintenance For AL Amy And I Am Still Feeling Fatigue And Need Daily Naps. Is This Normal?

A MyAmyloidosisTeam Member asked a question 💭
San Jose, CA

Diagnosed in Nov 2022. I completed 1st 6 month chemo infusion shot treatment for AL in June 2023 and now on monthly maintenance with Daratumum After naps I have improved energy that lasts about 4-6 hours. Thanks everyone for any thoughts.

November 19, 2023
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A MyAmyloidosisTeam Member

It is for me. It was a year for me in October that I’m on maintenance chemo. I still need the naps. Especially after chemo and after a bout of diarrhea. Then like you I’m good for a couple of hours. I’m finding by 7 or 8 pm I’m exhausted. It’s ok though. Things could be a lot worse.

November 20, 2023
A MyAmyloidosisTeam Member

I am about a month behind you. I am not sleeping well at night, so after breakfast I tend to need a nap. I also am on Daratumum, plus IV of Gamunex-C.

November 19, 2023
A MyAmyloidosisTeam Member

Good to hear Brian. I think the key is not to try to over do it. I am going to try 4 hours of work on Monday, Wednesday and Friday. That gives me time off in between. For sure jury duty will be a good test. Let me know how it works out.

December 10, 2023
A MyAmyloidosisTeam Member

Thanks Darrell, sounds like you are making some progress which is great. I am evaluating doing some part time work. I am in middle of jury duty. Was selected and case starts after New Years. Will be a good test on my energy level.

December 9, 2023
A MyAmyloidosisTeam Member

Your timeline is about the same as mine. First treatment Nov 30/22. List a lot of weight but starting to put some back. Thinking about going back to work in the mornings for 1/2 days. Hopefully my energy level increased.

December 3, 2023

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