Meaning that without knowing the results of your 24-hour urine test and / or any other tests that led your doctor to give you a specific diagnosis of MGUS, it may not be anything to worry about at all ... and it certainly isn't a more advanced stage of multiple myeloma. Continuing to track your numbers makes a lot of sense. But I would really get a second opinion to see if there is even anything to be worried about in the first place.
Again, I'm not a doc, so only a doc can make this call.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have I progressed from MGUS to multiple myeloma?
I went to the doctor's office for a copy of my 24-hour urine test
Protein total 4.7. 0 to 15.0
Protein 24 calculated 68.2 30.0-150.0
M spike %. 0
M spike 24 hr 0
Albumin U 100.00
An apparent normal immunofixation pattern.
This test was done February 2015.
Protein total 4.7. 0 to 15.0
Protein 24 calculated 68.2 30.0-150.0
M spike %. 0
M spike 24 hr 0
Albumin U 100.00
An apparent normal immunofixation pattern.
This test was done February 2015.
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
Again, nothing seems to be suggesting you have a plasma cell disorder based on your 24-hour urine test results ... at least to me as a layman.
But why not get a second opinion from a multiple myeloma specialist to help eliminate the specter of MGUS?
But why not get a second opinion from a multiple myeloma specialist to help eliminate the specter of MGUS?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have I progressed from MGUS to multiple myeloma?
Thank you for all your answers and encouraging words. I have an appointment with my doctor on Wednesday and I am going to have many questions now that I have learned so much from you. I wrote all my questions down because I get so nervous and forget to ask my questions. I am also asking for a PET/CT.
I also have an appointment at MD Anderson April 25th.
Debi
I also have an appointment at MD Anderson April 25th.
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
Debic,
Sounds like you are on the right track. I still always write down all my questions of my doctors and record the audio of my appointments on my smartphone. Good luck with your appts.
Sounds like you are on the right track. I still always write down all my questions of my doctors and record the audio of my appointments on my smartphone. Good luck with your appts.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have I progressed from MGUS to multiple myeloma?
Multibilly,
Well, I went to the doctor today and must say I am frustrated. We went over all of my blood work; I had it all graphed out showing my
Kappa / lambda went from 0.82 to 5.17 in one year
Serum lambda went from 6.97 to 1.58
Serum kappa went from 5.73 to 8.17
Still no M-spike
All CBC in range, except lymph% is 44.2
She said I have light chain MGUS and will check blood again in June.
I asked for a PET/CT. She said insurance will not pay if I am only MGUS. She wants to do x-rays. I know I have read that isn't the best. Should I do the x-rays?
Thanks,
Debi
Well, I went to the doctor today and must say I am frustrated. We went over all of my blood work; I had it all graphed out showing my
Kappa / lambda went from 0.82 to 5.17 in one year
Serum lambda went from 6.97 to 1.58
Serum kappa went from 5.73 to 8.17
Still no M-spike
All CBC in range, except lymph% is 44.2
She said I have light chain MGUS and will check blood again in June.
I asked for a PET/CT. She said insurance will not pay if I am only MGUS. She wants to do x-rays. I know I have read that isn't the best. Should I do the x-rays?
Thanks,
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
Hi Debic,
Have you ever been imaged since MGUS was first suspected?
Insurance company policies seem to be like snowflakes when it comes to covering various imaging modalities. No two are alike and sometimes approvals seem to be subject to the luck of the draw depending on who at the insurance company is doing the approval.
I'm therefore not convinced that an insurance company would automatically reject your request for a PET/CT or whole body MRI since these are now the new IMWG standards for initially diagnosing multiple myeloma patients. See:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
I might therefore suggest submitting the request for a PET/CT based on your FLC ratio increase and see what happens. If the pre-approval is rejected, then I might suggest going for the xray skeletal survey. Yes, xrays have their drawbacks relative to PET/CTs when it comes to early detection of bone issues, but they are still quite a good diagnostic tool - and xrays incur quite a bit less radiation exposure than PET/CTs.
This is a really great article on multiple myeloma imaging tradeoffs:
P Kapoor, "To PET or not to PET" (forum posting, July 24, 2014)
Have you ever been imaged since MGUS was first suspected?
Insurance company policies seem to be like snowflakes when it comes to covering various imaging modalities. No two are alike and sometimes approvals seem to be subject to the luck of the draw depending on who at the insurance company is doing the approval.
I'm therefore not convinced that an insurance company would automatically reject your request for a PET/CT or whole body MRI since these are now the new IMWG standards for initially diagnosing multiple myeloma patients. See:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
I might therefore suggest submitting the request for a PET/CT based on your FLC ratio increase and see what happens. If the pre-approval is rejected, then I might suggest going for the xray skeletal survey. Yes, xrays have their drawbacks relative to PET/CTs when it comes to early detection of bone issues, but they are still quite a good diagnostic tool - and xrays incur quite a bit less radiation exposure than PET/CTs.
This is a really great article on multiple myeloma imaging tradeoffs:
P Kapoor, "To PET or not to PET" (forum posting, July 24, 2014)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have I progressed from MGUS to multiple myeloma?
Multibilly,
No, I have never had images done. I will call my insurance company tomorrow . When I had breast cancer 9 years ago, they were really good about approving all my tests. I feel the doctor is thinking I am overreacting to the numbers. I have gone to this cancer clinic since my breast cancer, but she's a different doctor then I had for breast cancer.
Debi
No, I have never had images done. I will call my insurance company tomorrow . When I had breast cancer 9 years ago, they were really good about approving all my tests. I feel the doctor is thinking I am overreacting to the numbers. I have gone to this cancer clinic since my breast cancer, but she's a different doctor then I had for breast cancer.
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
Hi Debi,
My husband was also diagnosed as MGUS based on his IgG, M-spike of 1.0 g/dL, and free light chains. They did an x-ray and found some possible L1/L2 fractures and a lucent area on his head (possible venous lake).
As a result of the suspicious x-ray, the oncologist said to do a bone marrow biopsy. If it came back 10% or higher, then he could do a PET scan. I always wondered if he needed 10% in order to follow up with a PET scan. I never asked because the bone marrow biopsy showed 10%, and we were able to move forward with the PET scan (which came out all clear).
Since the bone marrow biopsy came back 10%, he is now listed as having 'multiple myeloma' - though it is truly 'smoldering'. I always wonder if that is for insurance purposes. Very odd.
My husband was also diagnosed as MGUS based on his IgG, M-spike of 1.0 g/dL, and free light chains. They did an x-ray and found some possible L1/L2 fractures and a lucent area on his head (possible venous lake).
As a result of the suspicious x-ray, the oncologist said to do a bone marrow biopsy. If it came back 10% or higher, then he could do a PET scan. I always wondered if he needed 10% in order to follow up with a PET scan. I never asked because the bone marrow biopsy showed 10%, and we were able to move forward with the PET scan (which came out all clear).
Since the bone marrow biopsy came back 10%, he is now listed as having 'multiple myeloma' - though it is truly 'smoldering'. I always wonder if that is for insurance purposes. Very odd.
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Have I progressed from MGUS to multiple myeloma?
Brandyjoco,
I had a bone marrow biopsy, and it came back zero cells, so she said they would not allow a PET scan. I am going to have the x-rays and see what they show.
How is your husband feeling? Are they looking at any type of treatment? So glad to hear the PET scan was clear. So many questions and no answers.
Debi
I had a bone marrow biopsy, and it came back zero cells, so she said they would not allow a PET scan. I am going to have the x-rays and see what they show.
How is your husband feeling? Are they looking at any type of treatment? So glad to hear the PET scan was clear. So many questions and no answers.
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
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