Cedb,
Thank you for your reply. I have your everyday symptom of a 57-year-old; things hurt sometimes, but not enough to stop me from doing things. The only symptom I seem to have become aware of is my skin around my neck and shoulders feels like when you have done too much exercising. It burns, but not all the time. Not sure if that is anything. Could just be stress!
One last question: How do you know your M-spike number?
Debi
Forums
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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,
The level of your M-spike is usually listed with your serum protein electrophoresis (SPEP) results. If one was found, it will say something like "Abnormal protein band", "Monoclonal protein band", and then the amount. The units will be g/dL or g/L in most cases. Somethings they will be mg instead of g.
The serum immunofixation (IFE, or sometimes just IF) just says whether a monoclonal protein was found, but not the amount. It also will say what type of monoclonal protein was found, something like "IgG kappa" or "IgA lambda".
Hope this helps a bit.
The level of your M-spike is usually listed with your serum protein electrophoresis (SPEP) results. If one was found, it will say something like "Abnormal protein band", "Monoclonal protein band", and then the amount. The units will be g/dL or g/L in most cases. Somethings they will be mg instead of g.
The serum immunofixation (IFE, or sometimes just IF) just says whether a monoclonal protein was found, but not the amount. It also will say what type of monoclonal protein was found, something like "IgG kappa" or "IgA lambda".
Hope this helps a bit.
Re: Have I progressed from MGUS to multiple myeloma?
Thank you. I found it it. It says:
Protein total 6.3 g/dl
Albumin 56%
Alpha-1 globulin 3.3
Alpha-2 globulin 10.1
Beta globulin 17.6
Gamma globulin 13.0
A/G ratio 1.3
No monoclonal band observed
Debic
Protein total 6.3 g/dl
Albumin 56%
Alpha-1 globulin 3.3
Alpha-2 globulin 10.1
Beta globulin 17.6
Gamma globulin 13.0
A/G ratio 1.3
No monoclonal band observed
Debic
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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?
Debbi
I am not a doctor. However, from what I can see with your data, my conclusion would be that
you do not have an m-spike.
This does not rule out the possibility of a type of MGUS which does not produce an m-spike (see my response earlier). However, based on your free light chain data (abnormal, but very low) and the fact that no m-spike is measured, you should be feeling reassured that it probably is just "possibly" a MGUS.
Please let us know how it goes. Local GPs seem to have such a limited understanding of myeloma that a slightly out of range values freaks them out, and then they freak us out! The good thing is you may have a small MGUS which has now been flagged very early on. Should it ever progress, you would be treated very early. This is a very good thing with myeloma.
I am not a doctor. However, from what I can see with your data, my conclusion would be that
you do not have an m-spike.
This does not rule out the possibility of a type of MGUS which does not produce an m-spike (see my response earlier). However, based on your free light chain data (abnormal, but very low) and the fact that no m-spike is measured, you should be feeling reassured that it probably is just "possibly" a MGUS.
Please let us know how it goes. Local GPs seem to have such a limited understanding of myeloma that a slightly out of range values freaks them out, and then they freak us out! The good thing is you may have a small MGUS which has now been flagged very early on. Should it ever progress, you would be treated very early. This is a very good thing with myeloma.
-
Cedb
Re: Have I progressed from MGUS to multiple myeloma?
JimNY, Cedb and CherylG,
Thank you so much for all your information. You have been such a blessing to take the time to help me understand. I know each of you are dealing with your own health concerns.
I got one part of the BMB back, the cytogenetics. It says: Interpretation: normal female karyotype in all cells analyzed. Now I wait until next Wednesday for the rest of the results and my doctor appointment!
Debi
Thank you so much for all your information. You have been such a blessing to take the time to help me understand. I know each of you are dealing with your own health concerns.
I got one part of the BMB back, the cytogenetics. It says: Interpretation: normal female karyotype in all cells analyzed. Now I wait until next Wednesday for the rest of the results and my doctor appointment!
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?
Does anyone know how long it takes to get BMB results back? I have an appointment next Wednesday but wonder if that is when the report is back or when the doctor had an opening. I did find some results on my see your chart which I posted yesterday. Makes me wonder if they have all the results.
Debi
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,
There are actually several different sections/tests that make up the total report that you get when you have bone marrow biopsy. Some of these tests take longer than others to complete, so they may dribble in at different times. It really depends on the facility and their backlogs on when you would start to see these reports surface.
I got my complete report back in one week, but I believe that was quite fast. I've read of others taking two or more weeks to get their results back.
If you've never seen a BMB report before, be sure you walk through it page-by-page with the doctor and record the conversation or take some great notes. These reports are very difficult for a layman to interpret and figure out on their own.
There are actually several different sections/tests that make up the total report that you get when you have bone marrow biopsy. Some of these tests take longer than others to complete, so they may dribble in at different times. It really depends on the facility and their backlogs on when you would start to see these reports surface.
I got my complete report back in one week, but I believe that was quite fast. I've read of others taking two or more weeks to get their results back.
If you've never seen a BMB report before, be sure you walk through it page-by-page with the doctor and record the conversation or take some great notes. These reports are very difficult for a layman to interpret and figure out on their own.
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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,
Thank you. Do you have any suggestions on where to look to understand the report?
I felt like the first time I saw the doctor she was talking and because this was such a shock I was not understanding anything she was telling me. My husband will be coming this time but I want to know what I should ask. I have known I had MGUS since 2012 but wasn't too concerned. So when she said it is time we do a BMB, I couldn't even think to ask her any questions because in February my numbers were good and in July they weren't.
Anything you think I should ask?
Debi
Thank you. Do you have any suggestions on where to look to understand the report?
I felt like the first time I saw the doctor she was talking and because this was such a shock I was not understanding anything she was telling me. My husband will be coming this time but I want to know what I should ask. I have known I had MGUS since 2012 but wasn't too concerned. So when she said it is time we do a BMB, I couldn't even think to ask her any questions because in February my numbers were good and in July they weren't.
Anything you think I should ask?
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?
I've never found a site that explains how to read these things. But the takeaways you want to make sure you understand when you leave the doctor's office are:
1. What is my bone marrow plasma cell percentage (BMPC)? Does this confirm MGUS or smoldering multiple myeloma?
2. Are there any deleterious genetic mutations that were found on my FISH and metaphase cytogenetic analyses? Can you please list those mutations for me? Could you tell me if any of these mutations are the same as listed in this link?
https://tinyurl.com/nzv2jju
3. Do the flow-cytometry results confirm/suggest myeloma?
4. Do the microscopic analysis and staining tests confirm myeloma or something else?
5. What is my exact diagnosis based on all these tests? Does anything suggest a negative prognosis to you? If yes, what specifically concerns you?
...and ask for a copy of the report for your own records.
It's really easy to get sidetracked and/or shocked during these meetings with the doctor, no matter how much homework one does. That's why I always record my meetings on my smartphone.
1. What is my bone marrow plasma cell percentage (BMPC)? Does this confirm MGUS or smoldering multiple myeloma?
2. Are there any deleterious genetic mutations that were found on my FISH and metaphase cytogenetic analyses? Can you please list those mutations for me? Could you tell me if any of these mutations are the same as listed in this link?
https://tinyurl.com/nzv2jju
3. Do the flow-cytometry results confirm/suggest myeloma?
4. Do the microscopic analysis and staining tests confirm myeloma or something else?
5. What is my exact diagnosis based on all these tests? Does anything suggest a negative prognosis to you? If yes, what specifically concerns you?
...and ask for a copy of the report for your own records.
It's really easy to get sidetracked and/or shocked during these meetings with the doctor, no matter how much homework one does. That's why I always record my meetings on my smartphone.
-
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 your answers, I am going to print out these questions. I have a recorder from when I had breast cancer; I didn't think about my phone.
Debi
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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