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I Have Primary Amyloidosis AL And A Very Swollen Tongue. Has Anyone Had This Problem And Gotten Relief? What Helped?

A MyAmyloidosisTeam Member asked a question 💭
Phoenix, AZ
November 6
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A MyAmyloidosisTeam Member

Somewhat. The taste isn’t as bad as it was but it changes from time to time.

November 7
A MyAmyloidosisTeam Member

I had the CyborD for four months but "relapsed" as my doctor determined. Currently having tests done to figure out best next steps. I see my doctor next week to discuss. Has your tongue swelling gotten any better?

November 6
A MyAmyloidosisTeam Member

What are the doctors saying? And what kind of treatment did you have? I was on CyborD for 6 months and now I’m on maintenance. Velcade every other week and darzalex once a month.

November 6
A MyAmyloidosisTeam Member

I finished 16 weeks of chemo a month ago and the swelling has gotten worse, My neck is swollen and my taste buds are also struggling. Difficult to chew, speak and swallow. Steroids have helped but I don't want to be on them too long. Looking for a better solution.

November 6
A MyAmyloidosisTeam Member

Yes I’ve had this. Treatment does help but still struggling with the taste of food. It can be very frustrating. Are you in treatment now?

November 6

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