Diagnosed with both multiple myeloma and amyloidosis: Anyone else?

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.

Initial diagnosis of MGUS in 2005, in 2025 after 20 years of monitoring, and increasing pain that I suspected may be bone pain, and increasing Proteinuria a Bone Marrow Biopsy did reveal Smoldering Multiple Myeloma through my local Oncologist. After family and friend refundsI did seek a second opinon and after several months of further through Nebraska Medicine including a kidney biopsy my Diagnosis changed to Multiple Myeloma with Amyloidosis, AL (Lambda Light Chain). Both of my providers are coordinating, which I so appreciate! I began treatment June 2026 of Daratumumab and CyBorD, that I receive locally. It is going very well except for the sleeplessness (I assume this is from the Dexamethasone). Being monitored for concerns with my immune storm also. So glad to hear of your positive experience sb428!

@mkd54
What organs has the amyloidosis affected you? My heart and kidneys are affected so that is why I have shortness of breath. I also now have neuropathy so the bottom of my feet tingle all the time. When I did my 6 month dara-CyBorD treatment all I did was treatment, eat and sleep and was very weak.

@sb428 Thank you for your response! My kidneys are affected. I am being monitored for heart and awaiting a heart MRI, but that it is 5 months from now. I have had other heart related issues for 19 years, so cardiologist is not sure if other issues are amyloidosis. Off and on neuropathy in hands and feet, but not very bothersome. I have completed week 6 of my 6 month treatment. I am noticing each week it takes me a little longer to “recover” from treatment. Is that how it was for you? So far I get a few bursts of energy each week to try and keep up with life, but less of those each week. I am 72 and thankful I am at an age and stage with less ongoing responsibilities!

@mkempson42 this has not been a diagnosed issue for me, but one I have wondered about. Over many years there have been times I have had comments that x-rays have shown healed fractures even though the tests were being done for unrelated issues. Unresolved pain in my leg is what finally got me to push for bone marrow biopsy after 20 years of MGUS. I am now diagnosed with MM and Amyloidosis. I appreciate your question and do hope you are doing well.

@mkd54
I got weaker as the treatment progressed. At one point I was so weak I couldn't walk to the bathroom. My daughter put me on my computer chair and rolled me to the bathroom. At one point I started getting diarrhea. So buy the diarrhea medicine to have on hand if you start getting diarrhea. You don't want to have to run to the store at the last minute for medicine. You should follow the diarrhea BRAT diet if you get diarrhea. My daughter made chinese rice porridge for me because it is easy to eat. I was 81 when I did the treatment.