Hello,
I have seen my doctor regarding my MGUS 4 months and I'm seeing them again next month. My question is they say I am low risk because my blood work only shows MGUS and I don't meet any other criteria because I don't have lesions or calcium etc.
I live in Los Angeles CA and currently go to Harbor UCLA. My doctor says he is a multiple myeloma specialist. But meeting criteria is very new to me.
Thank you.
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Re: MGUS criteria?
Hi dkstephens,
You are correct, all very confusing. Do you mind disclosing what test you have had that determined MGUS. I was considered MGUS for a little over 3 years, but just recently was diagnosed with smoldering myeloma after a bone marrow biopsy showed 15% to 20% myeloma cells. My markers have always been super high light chain levels.
You are correct, all very confusing. Do you mind disclosing what test you have had that determined MGUS. I was considered MGUS for a little over 3 years, but just recently was diagnosed with smoldering myeloma after a bone marrow biopsy showed 15% to 20% myeloma cells. My markers have always been super high light chain levels.
Re: MGUS criteria?
Hi Dkstephens,
Welcome to the forum. You might want to consider registering on the forum to make it easier for folks to help you out and to help find your earlier posts as folks respond to you over time.
It's going to be important to track your M-spike, lambda and kappa free light chain values, your type of MGUS (IgG lambda, etc), calcium, creatinine, and hemoglobin to see if your MGUS continues to hold steady. If your doctor isn't giving you copies of these lab results, or if you don't have access to them online, you might want to ask your doctor for these at each visit.
Also, did you have a bone marrow biopsy when you first diagnosed? The key things you want to know from this test are your bone marrow plasma cell percentage and your FISH results.
Did the doctor do an xray or a PET/CT or MRI when you were told that you had no bone lesions?
Folks on this forum can help you to start to sort out any or all of these results.
If you would like to get a second opinion on your diagnosis (which I always think is a great idea), let us know and folks on this forum can make some recommendations as to where to find an additional specialist in the LA area to talk to.
Welcome to the forum. You might want to consider registering on the forum to make it easier for folks to help you out and to help find your earlier posts as folks respond to you over time.
It's going to be important to track your M-spike, lambda and kappa free light chain values, your type of MGUS (IgG lambda, etc), calcium, creatinine, and hemoglobin to see if your MGUS continues to hold steady. If your doctor isn't giving you copies of these lab results, or if you don't have access to them online, you might want to ask your doctor for these at each visit.
Also, did you have a bone marrow biopsy when you first diagnosed? The key things you want to know from this test are your bone marrow plasma cell percentage and your FISH results.
Did the doctor do an xray or a PET/CT or MRI when you were told that you had no bone lesions?
Folks on this forum can help you to start to sort out any or all of these results.
If you would like to get a second opinion on your diagnosis (which I always think is a great idea), let us know and folks on this forum can make some recommendations as to where to find an additional specialist in the LA area to talk to.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
3 posts
• Page 1 of 1