Gammopathy Monoclonal and Amyloidosis Monoclonal belly fat biopsy

Posted by elmay @elmay, Aug 2 11:03am

I am having a belly fat biopsy tomorrow. The doctor is looking at Gammopathy Monoclonal and Amyloidosis Monoclonial. Has anyone had this biopsy? Did you need a bone marrow test as well ? I don’t know much about this disease ad yet Any information will be helpful. Thanks. Elmay

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@elmay, how did the abdominal fat pad biopsy go? What are the next steps for you?

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The biopsy was easy. and not painful. The result was negative for Amylodisis Monoclonial. The doctor said that it is MGUS, Monoclonal Gammopathy, which is non-cancer. He does not feel a bone marrow biopsy is needed at this point. He told me to stay as healthy as possible and see him four times a year with blood and urine labs each time. He said he will be watching me carefully for signs of lymphoma since my dad died of it, and there is some evidence of a relationship between MGUS and lymphoma in first generation heredity. I feel like he is taking good care of me.

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Interesting. Thank you. My identical twin has NHL diagnosis and I have MGUS. My hematologists over the years seem disinterested in the twin thing.

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Profile picture for elmay @elmay

The biopsy was easy. and not painful. The result was negative for Amylodisis Monoclonial. The doctor said that it is MGUS, Monoclonal Gammopathy, which is non-cancer. He does not feel a bone marrow biopsy is needed at this point. He told me to stay as healthy as possible and see him four times a year with blood and urine labs each time. He said he will be watching me carefully for signs of lymphoma since my dad died of it, and there is some evidence of a relationship between MGUS and lymphoma in first generation heredity. I feel like he is taking good care of me.

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@elmay glad it went well for you. What caught my eye on your post is that your dad died of lymphoma. No one has ever asked me questions or seemingly had any interest in the fact my Mom died of lymphoma in 1988. I first tested positive for active Epstein Barr in 1989 and I was first diagnosed with MGUS in 2005. After all these years I now have Multiple Myeloma and also Amyloidosis (Light Chain). I started treatment in June 2026. With all the questions I have had over the years of the interrelationship and overlap of symptoms I felt comforted to read there may be a relationship in first generation heredity, and someone has noticed! Thank you!

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Profile picture for mkd54 @mkd54

@elmay glad it went well for you. What caught my eye on your post is that your dad died of lymphoma. No one has ever asked me questions or seemingly had any interest in the fact my Mom died of lymphoma in 1988. I first tested positive for active Epstein Barr in 1989 and I was first diagnosed with MGUS in 2005. After all these years I now have Multiple Myeloma and also Amyloidosis (Light Chain). I started treatment in June 2026. With all the questions I have had over the years of the interrelationship and overlap of symptoms I felt comforted to read there may be a relationship in first generation heredity, and someone has noticed! Thank you!

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@mkd54 I have IgA kappa FLC MM, as of bone marrow biopsy last week with CD138 60% plasma cells in marrow. I will start treatment soon. There are a lot of new options that are inclinical trial. I will likely start I-VRD to knock the deranged plasma cells into remission. I was diagnosed with MGUS in 2017 and SMM last year.

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Profile picture for kayabbott @kayabbott

@mkd54 I have IgA kappa FLC MM, as of bone marrow biopsy last week with CD138 60% plasma cells in marrow. I will start treatment soon. There are a lot of new options that are inclinical trial. I will likely start I-VRD to knock the deranged plasma cells into remission. I was diagnosed with MGUS in 2017 and SMM last year.

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@kayabbott I’m very sorry to hear about your dx but yes, there are so many promising treatment options. Thank you, as always, for sharing your journey. We all learn from you.
Patty

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Profile picture for elmay @elmay

The biopsy was easy. and not painful. The result was negative for Amylodisis Monoclonial. The doctor said that it is MGUS, Monoclonal Gammopathy, which is non-cancer. He does not feel a bone marrow biopsy is needed at this point. He told me to stay as healthy as possible and see him four times a year with blood and urine labs each time. He said he will be watching me carefully for signs of lymphoma since my dad died of it, and there is some evidence of a relationship between MGUS and lymphoma in first generation heredity. I feel like he is taking good care of me.

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@elmay, concerning your bone marrow biopsy question, my hematologist/oncologist and I have decided to wait on a bone marrow biopsy. I was diagnosed gosh, almost 5 years ago now with MGUS. We watched my lab results carefully, and if there is any escalation in my “numbers“ we will reconsider. As long as I’m stable I don’t see the need for the bone marrow biopsy. If my numbers start to get wanky then I’ll have to reconsider. I see my hematologist/oncologist twice a year now. I’m quite comfortable with that.
Have you and your doctor discussed what the threshold would be in order for him or her to need more information?

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Profile picture for Patty, Volunteer Mentor @pmm

@kayabbott I’m very sorry to hear about your dx but yes, there are so many promising treatment options. Thank you, as always, for sharing your journey. We all learn from you.
Patty

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@pmm Darned that miserable AI, typing in the exact BMB statement of "CD138 highlights increased plasma cells comprising 60% of cellular marrow" resulted in AI indicating that was my percent of plasma cells. It is not, but instead the percent of my plasma cells that have the CD138 protein, based on my Oncol (sounds like uncle and he is getting close to being family now). I still have SMM based on my overall bloodwork, lack of CRAB, and "Plasma cells are increased (comprising at least 28% of nucleated cells". Not 60%. I'll find out in the next week or two if I can get on a clinical trial for high risk SMM that uses trispecific antibodies. Medical limbo gets tiring. Deranged plasma cells are slow cancer, so expanded from 13% two years ago to 28% now.

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Profile picture for kayabbott @kayabbott

@pmm Darned that miserable AI, typing in the exact BMB statement of "CD138 highlights increased plasma cells comprising 60% of cellular marrow" resulted in AI indicating that was my percent of plasma cells. It is not, but instead the percent of my plasma cells that have the CD138 protein, based on my Oncol (sounds like uncle and he is getting close to being family now). I still have SMM based on my overall bloodwork, lack of CRAB, and "Plasma cells are increased (comprising at least 28% of nucleated cells". Not 60%. I'll find out in the next week or two if I can get on a clinical trial for high risk SMM that uses trispecific antibodies. Medical limbo gets tiring. Deranged plasma cells are slow cancer, so expanded from 13% two years ago to 28% now.

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@kayabbott As their disclaimer says, “AI can be inaccurate.”

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Profile picture for drtesdell @circawdm

@kayabbott As their disclaimer says, “AI can be inaccurate.”

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@circawdm AI is basically a beefed up search engine that commonly links to the most popular or commercial, rather than peer-reviewed publications and other valid sources (which also have their limitations). Even though I'm a retired research scientist with the federal govt., sometimes we are just searching for answers that are hard to find. So I guess this counts as a govt. disclaimer.

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