Diagnosed with both multiple myeloma and amyloidosis

@cemeterygal01 Welcome to Mayo Clinic Connect! Having received a new diagnosis can sure be unsettling, definitely.

Multiple myeloma and amyloidosis are two different disorders. i am curious which one you were diagnosed with. Then we can address your concerns!
From WedMD: https://www.webmd.com/cancer/multiple-myeloma/multiple-myeloma-with-amyloidosis
And from Amercan Association of Hematologists: https://ashpublications.org/blood/article/138/17/1514/477397/Why-is-amyloidosis-not-multiple-myeloma

When do you see the doctors, next?
Ginger

I have both. I have an oncologist locally where I get my treatments (Peacehealth cancer center) and I had a consultation/2nd opinion at Fred Hutch in Seattle.
I see my dr once a month before treatment. I just saw her yesterday.

@cemeterygal101 Wow, that is quite the combination to have at the same time. It seems like the two are juxtaposed to each other, and I am very interested to hear what your team will talk to you about for treatment going forward.

In my situation, I was first diagnosed with MGUS [monoclonal gammopathy of unspecified significance]in 2017, advanced to SMM [smoldering myeloma in 2018] and then multiple myeloma in 2019. All of these were way ahead of the curve time-wise for advancement, seeing that people usually go for years if not decades before moving to the next level. There were many tests including bone marrow biopsy, CT scans, MRIs and bloodwork. I have been on oral chemo since August 2021.
Ginger

@cemeterygal01, as you gather information on your particular combination of both amyloidosis and multiple myeloma, you may also be interested in these older discussions:

- Treatment for amyloidosis and multiple myeloma https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/
- Current diagnosis is Amyloidosis and multiple myeloma https://connect.mayoclinic.org/discussion/what-a-shocker/

Is there anyone here with a confirmed diagnosis of multiple myeloma with amylidosis?

Hi @mkempson42, Welcome to Mayo Connect where members come together to offer support and encouragement to others. It can help us feel not so alone when facing a rare condition.
There are a couple of members who also have MM and Amyloidosis. I’ve posted the links below where you’ll find members @cemeterygal01 and @beckyoutlaw1115 discussing their stories with others.

~Diagnosed with both multiple myeloma and amyloidosis
https://connect.mayoclinic.org/discussion/multiple-myelomaamyloidosis/
—Treatment for amyloidosis and multiple myeloma https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/
– Current diagnosis is Amyloidosis and multiple myeloma https://connect.mayoclinic.org/discussion/what-a-shocker/

When were you diagnosied? Are you currently in treatment?

I’ve been diagnosed with both.

So sorry to hear this about both being coupled as in your case!
Amyloidosis sometimes seems to be a result of the light chains getting deposited in your organ tissue, some types of monoclonal gammopathys tend to do that and others don’t. I have heard that this is more seldom gamma M protein but I am not sure.
I guess you probably know more by now.
Which myeloma do you have?
Wishing you all the best!!
Mascot

I have been.
Mary

I don’t know a whole lot more. It is all so complicated to me. All I know is all my different symptoms and learning how to cope with them.
Someone else asked me what of myeloma I have too. I don’t think I’ve been told. They just say I have meltiple myeloma.