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Real members of MyMyelomaTeam 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.

Anyone have both MM and amyloid proteins (I am not sure if that is the same as amyloidosis or just like a risk factor)?

A MyMyelomaTeam Member asked a question 💭
Pittsburgh, PA

I am 48 and found out I had a tumor on my left ninth rib (which is basically gone at this point into a calcified...something) late last year. Seven months into treatment my 2nd bone marrow biopsy revealed I have amyloid proteins so they pulled me off revlimid. I'm struggling to try to understand how big of a deal this is. Articles about having both are a little out of date (just bc what's known changes so dramatically so quickly - I can't really find anything past like 2023) and I'm struggling… read more

July 21 (edited)
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MyMyelomaTeam

First, it's completely understandable to feel overwhelmed — navigating myeloma alone is a lot, and adding this new piece makes it even more complex. You're asking exactly the right questions.

To clarify the difference: amyloid proteins and AL amyloidosis are related but not the same thing. AL amyloidosis is the condition Show Full Answer

First, it's completely understandable to feel overwhelmed — navigating myeloma alone is a lot, and adding this new piece makes it even more complex. You're asking exactly the right questions.

To clarify the difference: amyloid proteins and AL amyloidosis are related but not the same thing. AL amyloidosis is the condition that develops when abnormal light chain proteins clump together and build up in organs and tissues, causing damage. Having amyloid proteins detected could be an early indicator, which is likely why your care team acted quickly by adjusting your treatment. About 15% of people with myeloma also develop AL amyloidosis, so while it's not the most common scenario, it's not uncharted territory either. When both conditions are present together, treatment plans do need to be adjusted — for example, certain chemotherapy drugs that could stress the heart, kidneys, or nerves are typically avoided. Many of the same treatments used for myeloma are also used for AL amyloidosis, including:

- Daratumumab (Darzalex Faspro) — FDA-approved for both conditions
- Bortezomib (Velcade) — used for both, which may be relevant given you were pulled off Revlimid
- Cyclophosphamide (Cytoxan) — another chemotherapy option used in both
- Autologous stem cell transplant — may be considered depending on your overall health

Immunomodulatory drugs like Revlimid (lenalidomide) can still play a role in some cases, but it makes sense that your team reassessed given the new findings. The communication struggle with your care team is real and worth addressing directly. A few things that might help:

- Ask specifically what organs, if any, are showing signs of amyloid involvement — this matters a lot for prognosis and treatment choices
- Request a referral to a myeloma specialist or an amyloidosis center if you haven't already — these dual-diagnosis cases really benefit from specialized expertise
- Write down your questions before appointments so nothing gets lost in the moment
- Ask your team to explain the "why" behind each treatment change in plain language

Other MyMyelomaTeam members have shared similar frustrations about feeling like they're piecing together information on their own — you're definitely not alone in that experience.

July 21
A MyMyelomaTeam Member

This is so helpful thank you!

July 21
A MyMyelomaTeam Member

Renee,
AI says, “To confirm your diagnosis or find where the amyloid is located, doctors often pair a bone marrow biopsy with an abdominal fat pad aspirate- combining the two tests pushes the detection rate for AL amyloidosis up to nearly 90%.”
I have a heart condition, so they suspected I might have amyloidosis. I had a fat pad biopsy done. It was actually very easy and caused me no pain.
The smartest thing you can do now is get a second opinion from a MM Specialist. The Multiple Myeloma Research Foundation has a list of MM Specialists around the country. Your current Hematologist or Oncologist will be happy to work with them. This is normal for MM. It’s too complicated and when you add amyloid protein, it gets more complicated, because they now have to be careful what medications they can give you. The MMRF always recommends a 2nd opinion. HTTPS://www.themmrf.org
They have Counselors you can communicate with. I have and it is amazing. Online they have a Patient Handbook which you can download or print. I printed mine, because I wanted to make notes. I hope this helps.
Paula🌹

The MMRF | Multiple Myeloma Research Foundation
The MMRF | Multiple Myeloma Research Foundation
https://www.themmrf.org
July 21

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