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Re: Newly diagnosed with MGUS
I have the Mirena IUD now so i no longer have periods but when i did they were heavy. I had an upper GI and nothing was found. Apparently i had something called angioectasia's in my colon. I had 2 of them and the GI doctor fixed it.
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
Re: Newly diagnosed with MGUS
Hi MrsM,
I'm glad you found us, but I'm sorry you need to be here.
How long ago did you have the Mirena placed? If it's been longer than about 4 weeks, your hemoglobin should have had enough time to recover from the heavy menstrual bleeding.
8.5 is quite low for hemoglobin. No wonder you feel tired!
Keep us posted on what happens!
Tracy
I'm glad you found us, but I'm sorry you need to be here.
How long ago did you have the Mirena placed? If it's been longer than about 4 weeks, your hemoglobin should have had enough time to recover from the heavy menstrual bleeding.
8.5 is quite low for hemoglobin. No wonder you feel tired!
Keep us posted on what happens!
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Newly diagnosed with MGUS
Hi Tracy,
I'm still confused by all of this but I feel like I'm slowly learning by coming here. I have had my Mirena since January and I haven't had a period since March. My periods stopped pretty quickly this time. I had a Mirena once before. I'm scheduled for an infusion on Thursday.
I just saw some of my lab results from my free light test and I don't know how to make sense of any of it. Still waiting on my SPE results.
I'm still confused by all of this but I feel like I'm slowly learning by coming here. I have had my Mirena since January and I haven't had a period since March. My periods stopped pretty quickly this time. I had a Mirena once before. I'm scheduled for an infusion on Thursday.
I just saw some of my lab results from my free light test and I don't know how to make sense of any of it. Still waiting on my SPE results.
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
Re: Newly diagnosed with MGUS
Hi Everybody. I just received my FLC test results back and i dont understand how to read them. Can someone help me out? Im new to all of this.
IGG 1690 High mg/dL 610-1616
Free Kappa Light Chain 26.46 High mg/L 3.30-19.40
Free Lambda Light Chain 11.35 mg/L 5.71-26.30
K/L FLC Ratio 2.331 High 0.260-1.650
Undetected antigen excess is a rare event but cannot be excluded. If these free light chain results do not agree with other clinical or laboratory findings, please contact the laboratory.
IGM 40 mg/dL 35-242
IGG 1690 High mg/dL 610-1616
Free Kappa Light Chain 26.46 High mg/L 3.30-19.40
Free Lambda Light Chain 11.35 mg/L 5.71-26.30
K/L FLC Ratio 2.331 High 0.260-1.650
Undetected antigen excess is a rare event but cannot be excluded. If these free light chain results do not agree with other clinical or laboratory findings, please contact the laboratory.
IGM 40 mg/dL 35-242
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
Re: Newly diagnosed with MGUS
Hi MrsM,
These FLC values are only a bit out of whack and seem consistent with "typical" MGUS, and in particular IgG-Kappa MGUS.
Your IgG level is also not that high and is just over the upper limit, but I'm guessing you likely have at least a small M-spike (monoclonal IgG) that accounts for your IgG being a bit elevated. As mentioned before, you can find your M-spike value (might be called abnormal protein, paraprotein, M-protein, etc) on your serum protein electrophoresis test, which your doc should have ordered.
But your hemoglobin level continues to be worrisome to me. There are forms of multiple myeloma where the disease doesn't register or only registers slightly on one one's serum and urine tests. Given your low hemoglobin and the fact that you were diagnosed with MGUS, I'd still recommend seeking out a top multiple myeloma specialist to rule out whether some kind of monoclonal gammopathy is causing you to be so anemic.
These FLC values are only a bit out of whack and seem consistent with "typical" MGUS, and in particular IgG-Kappa MGUS.
Your IgG level is also not that high and is just over the upper limit, but I'm guessing you likely have at least a small M-spike (monoclonal IgG) that accounts for your IgG being a bit elevated. As mentioned before, you can find your M-spike value (might be called abnormal protein, paraprotein, M-protein, etc) on your serum protein electrophoresis test, which your doc should have ordered.
But your hemoglobin level continues to be worrisome to me. There are forms of multiple myeloma where the disease doesn't register or only registers slightly on one one's serum and urine tests. Given your low hemoglobin and the fact that you were diagnosed with MGUS, I'd still recommend seeking out a top multiple myeloma specialist to rule out whether some kind of monoclonal gammopathy is causing you to be so anemic.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with MGUS
Ok. Well that is a relief to know it's not so bad. Can I keep my oncologist and still have a myeloma specialist?
My husband is just as concerned as you are. He thinks I need a bone marrow biopsy and take a look at my bones.
Thanks again for your input.
My husband is just as concerned as you are. He thinks I need a bone marrow biopsy and take a look at my bones.
Thanks again for your input.
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
Re: Newly diagnosed with MGUS
MrsM,
Absolutely, you can keep your local oncologist. This is in fact exactly what I do, as do some other folks on the forum.
Specifically, I have a local oncologist that routinely sees me, but he is not a multiple myeloma specialist. But I got a second opinion from an out-of-state specialist and will now pretty much only use that specialist to provide guidance to my local oncologist regarding any treatment and/or consult on any significant change in my markers that I might encounter in the future.
A bone marrow biopsy doesn't sound like a bad idea to me, but you might consider doing it under the guidance of the specialist (who can then best interpret the results and make sure all the right additional tests such as iFISH, etc are included).
Absolutely, you can keep your local oncologist. This is in fact exactly what I do, as do some other folks on the forum.
Specifically, I have a local oncologist that routinely sees me, but he is not a multiple myeloma specialist. But I got a second opinion from an out-of-state specialist and will now pretty much only use that specialist to provide guidance to my local oncologist regarding any treatment and/or consult on any significant change in my markers that I might encounter in the future.
A bone marrow biopsy doesn't sound like a bad idea to me, but you might consider doing it under the guidance of the specialist (who can then best interpret the results and make sure all the right additional tests such as iFISH, etc are included).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with MGUS
Ok, Great! Thank you very much!
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
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