Hello !
My name is Merryl. I was diagnosed with MGUS in July by a local hematologist / oncologist, but given continued blood findings, particularly increasing lambda free light chain levels, and continuing to feel progressively unwell, I am being seem by a myeloma specialist next week and had my bone marrow biopsy yesterday. I am 48, married, have 2 teenage boys in high school, and live in Los Angeles.
I have been lurking and reading all of your stories and posts since July and have found all of you to be so inspiring and informative.
I look forward to getting to know you all and to tapping into the wealth of experience that exists here.
Merryl
Forums
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Merryl - Name: Merryl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: I am currently 48
- Age at diagnosis: 48
Re: Diagnosed with MGUS but undergoing further evaluation
Thank you for your introduction, Merryl.
One of the common questions people newly diagnosed with MGUS or smoldering multiple myeloma have is whether their disease is progressing to active, or "symptomatic," multiple myeloma, which is the form of multiple myeloma that almost always is treated. (MGUS and smoldering myeloma, in contrast, typically are not treated, unless in the case of smoldering myeloma there are clear signs it is rapidly progressing to symptomatic disease and will reach that stage in the near future.)
The criteria for a diagnosis of active multiple myeloma are very specific and clearly defined. They are summarized in this forum post:
"Criteria for a multiple myeloma diagnosis"
As mentioned in the above post, a doctor is likely to start treatment of multiple myeloma if the patient meets the criteria for a diagnosis of symptomatic multiple myeloma, particularly if the criteria are met that indicate that the myeloma is causing organ damage (the so-called "CRAB" criteria). Some doctors may opt not to treat myeloma that is technically classified as symptomatic, but does not appear to be causing any organ damage. This is a judgement call that rests on both the experience of the physician and their access to a patient's entire case history (something we here in the forum do not have).
There also are explicit criteria for smoldering myeloma and for MGUS, a condition related to myeloma. The criteria for these diagnoses are described in these posts:
"Criteria for a smoldering multiple myeloma diagnosis"
"Criteria for an MGUS diagnosis"
All three of the above posts can be found pinned to the top of the "Do I have multiple myeloma?" section of the forum.
Should it be determined that you have multiple myeloma that requires treatment, you can find links to discussions about many of the treatment options in this post, which is pinned at the top of the "Treatments & Side Effects" section of the forum. You also can find many helpful forum discussions simply by typing one or two relevant keywords in the forum search box (e.g., "Velcade", or "RVD", or "neuropathy").
Good luck!
One of the common questions people newly diagnosed with MGUS or smoldering multiple myeloma have is whether their disease is progressing to active, or "symptomatic," multiple myeloma, which is the form of multiple myeloma that almost always is treated. (MGUS and smoldering myeloma, in contrast, typically are not treated, unless in the case of smoldering myeloma there are clear signs it is rapidly progressing to symptomatic disease and will reach that stage in the near future.)
The criteria for a diagnosis of active multiple myeloma are very specific and clearly defined. They are summarized in this forum post:
"Criteria for a multiple myeloma diagnosis"
As mentioned in the above post, a doctor is likely to start treatment of multiple myeloma if the patient meets the criteria for a diagnosis of symptomatic multiple myeloma, particularly if the criteria are met that indicate that the myeloma is causing organ damage (the so-called "CRAB" criteria). Some doctors may opt not to treat myeloma that is technically classified as symptomatic, but does not appear to be causing any organ damage. This is a judgement call that rests on both the experience of the physician and their access to a patient's entire case history (something we here in the forum do not have).
There also are explicit criteria for smoldering myeloma and for MGUS, a condition related to myeloma. The criteria for these diagnoses are described in these posts:
"Criteria for a smoldering multiple myeloma diagnosis"
"Criteria for an MGUS diagnosis"
All three of the above posts can be found pinned to the top of the "Do I have multiple myeloma?" section of the forum.
Should it be determined that you have multiple myeloma that requires treatment, you can find links to discussions about many of the treatment options in this post, which is pinned at the top of the "Treatments & Side Effects" section of the forum. You also can find many helpful forum discussions simply by typing one or two relevant keywords in the forum search box (e.g., "Velcade", or "RVD", or "neuropathy").
Good luck!
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• Page 1 of 1
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