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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
January 29, 2023
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A MyAmyloidosisTeam Member

Theresa I’m in same boat, April will be 6 mos of chemo. They’re indecisive about stem cell treatment. The gastro issues with the dumping is really troubling.

February 17, 2023
A MyAmyloidosisTeam Member

About 20-25% of AL patients will qualify for a SCT. Some are too sick to withstand the rigors of a SCT when first diagnosed but they may quality after a successful response to chemo and given time for their organs to heal. It really depends on the organ involvement and how early in the disease process the diagnosis was made.

February 4, 2023
A MyAmyloidosisTeam Member

Dear Paula,

Thank you for the information. I'll mention what you said to my oncologist. I've been on the daratumumab along with bortezomib and cyclophosphomide and dexamethasone. My lamba light chain tests keep going up and down. I was down to 65 and now it is back up to 85. Normal range is 5-26. I'm half way through cycle 5. I have 1 and 1/2 cycles to go.
Warmest regards,
Millard

February 18, 2023
A MyAmyloidosisTeam Member

Millard which combination of drugs have you been on? When the numbers don't respond to treatment, it is not uncommon to change to something else. There are several different options that can be tried. CyBorD+Daratumumab is considered to be the standard of treatment, but not everyone responds to those drugs. About half of patients respond to daratumumab. Venetoclax is a newer drug that is seeing success in patients who have the (11:14) translocation marker in their blood.

February 18, 2023
A MyAmyloidosisTeam Member

I had a stem cell transplant 2 and one half years ago. It's a bit tough but well worth it. My light chains are normal and I feel fine

August 26, 2023

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