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Diagnosed with both multiple myeloma and amyloidosis: Anyone else?
I have recently been diagnosed with multiple myeloma/ amyloidosis. Just wondering if anyone has this and would love to know more about what others are going through- symptoms, how did find out you had it, what treatment you are receiving etc. I’m a 62 year old female. Took a long time to diagnose mine. Any help or input would be greatly appreciated.
Mary
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MM but last year's fat pad biopsy showed no amyloidosis. However my doc wants to do a few more tests to be sure and to test heart function before I start some kind of treatment soon.
@sb428, I moved your question to this existing discussion group of people who have both multiple myeloma and amyloidosis, like @huron @cemeterygal01 @mkempson42 @naiviv @mgm4kc and others.
- Diagnosed with both multiple myeloma and amyloidosis: Anyone else? https://connect.mayoclinic.org/discussion/multiple-myelomaamyloidosis/
@sb428, what is your treatment plan?
I was diagnosed in 2021 by Stanford Amyloid Center. They recommended the regimen called dara-CyBorD and my local cancer center did my treatment. The doctors are amazed at how well the treatment worked for me. They say they never expected to see me walking around the way I do. Last year they gave me the option of stopping treatment. I decided to keep doing the monthly daratumumab to be sure to maintain my condition. My kidneys are doing better so we don't worry about going on dialysis anymore. My immune system is severely compromised so I don't go to meetings or things where there are a lot of people in a closed area. My kids and grandkids stay away from me for a week if they have been traveling. I wear a N95 mask whenever I go out. I have shortness of breath so can only do things for a few minutes then have to rest to let my heart rate do down. I have not seen people mentioning having both multiple myeloma and light chain amyloidosis so was wondering how many of us are out there and how long they have survived after stabilizing their condition.