I've been reading lots of others posts to try to gather as much info as I can as well as several links which have been posted, but I'm still confused and unclear.
Does having an IgA paraprotein of 12 g/L (1200 mg/dL) mean that it's likely to be myeloma? Is that level consistent with MGUS, smoldering or the fact I have symptoms also will that put me into active?
Is there anything else that could be causing this paraprotein?
Am I going to have to have a BMB? How bad is a BMB, I've heard it's awful!
How quickly will all the tests to lead to a diagnosis happen?
Will it take weeks or months to get a diagnosis?
So sorry for all the questions!
Kath. X
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Fozz - Name: Kath
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS Jan 2015
- Age at diagnosis: 44
Re: Does an IgA of 12g/L mean I will have to have a BMB?
Hi Kath,
An elevated IgA level can be due to several things. See:
http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2
"High levels of IgA may mean that monoclonal gammopathy of unknown significance (MGUS) or multiple myeloma is present. Levels of IgA also get higher in some autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus (SLE), and in liver diseases, such as cirrhosis and long-term (chronic) hepatitis"
In any case, it's going to be important that you distinguish between the total IgA level and the monoclonal portion of that IgA (if any is present). As I think I mentioned before, it was a little ambiguous just what lab value you were listing on your other post. A value of 12 g/L sounds like it is your total IgA level and not just the monoclonal portion of the IgA (again, if any monoclonal IgA protein is present). Do you actually have copies of the lab reports that were done earlier?
You should be able to get a much better idea of whether some stage of multiple myeloma (MGUS, smoldering, etc) is in play here after you get a more complete set of lab tests. If you get the tests listed in the laboratory section of the link below, your hematologist will have a much better idea of whether a stage of multiple myeloma might be in play and whether he/she would then need to proceed with a BMB or radiological imaging.
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
I found my own experience with a BMB to be no worse than a trip to the dentist and I wouldn't think twice about getting another one. But others have had different experiences. See this link for some other comments. As Mark11 would say, the "search bar on the forum (including the advanced search function) is your friend".
Regarding how long it takes to get diagnosed, I guess it depends on your particular medical system.
In the USA, I get my routine labwork done every two months on a Monday and I then see my oncologist three days later to discuss the results. It took about a week for me to get my BMB results back. It takes a couple of days to get radiologists reports for PET/CTs and xrays. But I've read of folks having to wait much longer for their various test results.
Which country or state do you live in? Maybe others in that same locale on this forum could share their experiences regarding their waits.
Hope this helps.
An elevated IgA level can be due to several things. See:
http://www.webmd.com/a-to-z-guides/immunoglobulins?page=2
"High levels of IgA may mean that monoclonal gammopathy of unknown significance (MGUS) or multiple myeloma is present. Levels of IgA also get higher in some autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus (SLE), and in liver diseases, such as cirrhosis and long-term (chronic) hepatitis"
In any case, it's going to be important that you distinguish between the total IgA level and the monoclonal portion of that IgA (if any is present). As I think I mentioned before, it was a little ambiguous just what lab value you were listing on your other post. A value of 12 g/L sounds like it is your total IgA level and not just the monoclonal portion of the IgA (again, if any monoclonal IgA protein is present). Do you actually have copies of the lab reports that were done earlier?
You should be able to get a much better idea of whether some stage of multiple myeloma (MGUS, smoldering, etc) is in play here after you get a more complete set of lab tests. If you get the tests listed in the laboratory section of the link below, your hematologist will have a much better idea of whether a stage of multiple myeloma might be in play and whether he/she would then need to proceed with a BMB or radiological imaging.
http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf
I found my own experience with a BMB to be no worse than a trip to the dentist and I wouldn't think twice about getting another one. But others have had different experiences. See this link for some other comments. As Mark11 would say, the "search bar on the forum (including the advanced search function) is your friend".
Regarding how long it takes to get diagnosed, I guess it depends on your particular medical system.
In the USA, I get my routine labwork done every two months on a Monday and I then see my oncologist three days later to discuss the results. It took about a week for me to get my BMB results back. It takes a couple of days to get radiologists reports for PET/CTs and xrays. But I've read of folks having to wait much longer for their various test results.
Which country or state do you live in? Maybe others in that same locale on this forum could share their experiences regarding their waits.
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Does an IgA of 12g/L mean I will have to have a BMB?
Thank you again for your reply Multibilly.
I live in East Yorkshire and going on the run around they're giving me with just getting these blood results out of them I'll probably be waiting a while!
I was promised a copy of the fax for today which the consultant had sent to the gp and when I got there there's no record of it on the system and the secretary has gone home and the gp who the fax was sent to is off today! AGGGH
I asked for a print out of what few results they do have on their system. So until Monday, this is all I have:
! Haemoglobin 115.0g/L (120.00 - 160.00g/L)
! Total white cell count 3.7 10*9/L (4.00 - 11.00 10*0/L)
Platelet count 180 10*9/L (150 - 400 10*9/L)
Red blood cell 4.39 10*12/L (4.00 - 5.20 10*12/L)
! Haematocrit 0.352 (0.36 - 0.46)
Mean corpuscular volume 80.2 fL (80 - 100 fL)
Mean corpusc haemoglobin 26.2 pg (26.00 - 34 pg)
Red blood cell distribution width 15.7 (11.5 - 16.5)
! Neutrophil count 1.90 10*9/L (2.00 - 7.70 10*9/L)
Lymphocyte count 1.40 10*9/L (0.80 - 3.40 10*9/L
Monocyte count 0.38 10*9L (0.20 - 0.80 10*9/L)
! Eosinophil count 0.02 10*9/L (0.04 - 0.40 10*9/L)
Basophil count 0.01 10*9/L (0.01 - 0.10 10*9/L
IgM 0.66g/L (no reference range but I believe it is normal)
IgG 5.9g/L (again no reference range but I believe it is low)
IgA 12g/L (again no reference range but I believe it is high)
Serum Albumin 37g/L (no ref but believe normal)
Serum total protein 68g/L (no ref but believe normal)
Thank you!
I live in East Yorkshire and going on the run around they're giving me with just getting these blood results out of them I'll probably be waiting a while!
I was promised a copy of the fax for today which the consultant had sent to the gp and when I got there there's no record of it on the system and the secretary has gone home and the gp who the fax was sent to is off today! AGGGH
I asked for a print out of what few results they do have on their system. So until Monday, this is all I have:
! Haemoglobin 115.0g/L (120.00 - 160.00g/L)
! Total white cell count 3.7 10*9/L (4.00 - 11.00 10*0/L)
Platelet count 180 10*9/L (150 - 400 10*9/L)
Red blood cell 4.39 10*12/L (4.00 - 5.20 10*12/L)
! Haematocrit 0.352 (0.36 - 0.46)
Mean corpuscular volume 80.2 fL (80 - 100 fL)
Mean corpusc haemoglobin 26.2 pg (26.00 - 34 pg)
Red blood cell distribution width 15.7 (11.5 - 16.5)
! Neutrophil count 1.90 10*9/L (2.00 - 7.70 10*9/L)
Lymphocyte count 1.40 10*9/L (0.80 - 3.40 10*9/L
Monocyte count 0.38 10*9L (0.20 - 0.80 10*9/L)
! Eosinophil count 0.02 10*9/L (0.04 - 0.40 10*9/L)
Basophil count 0.01 10*9/L (0.01 - 0.10 10*9/L
IgM 0.66g/L (no reference range but I believe it is normal)
IgG 5.9g/L (again no reference range but I believe it is low)
IgA 12g/L (again no reference range but I believe it is high)
Serum Albumin 37g/L (no ref but believe normal)
Serum total protein 68g/L (no ref but believe normal)
Thank you!
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Fozz - Name: Kath
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS Jan 2015
- Age at diagnosis: 44
Re: Does an IgA of 12g/L mean I will have to have a BMB?
Waiting does suck. We all hate it and I can understand your frustration.
I'm not a doc, but I don't believe you can draw any conclusions from just this data that would point you to any stage of multiple myeloma versus some other underlying condition. You really need some additional test results to start to make this sort of call.
I know it's easier said than done, but try not to jump to worst-case scenarios while you wait to get the additional lab results.
I'm not a doc, but I don't believe you can draw any conclusions from just this data that would point you to any stage of multiple myeloma versus some other underlying condition. You really need some additional test results to start to make this sort of call.
I know it's easier said than done, but try not to jump to worst-case scenarios while you wait to get the additional lab results.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Does an IgA of 12g/L mean I will have to have a BMB?
Thanks Multibilly,
I forgot to mention that not included in the lab results print out are the results I was given over the phone which are the monoclonal spike lambda although I don't know at what level. Microglobulin beta 2 was mentioned although I know nothing more about that. I had hoped the print out would have shown them but apparently those results are in the hospital system and the gp doesn't have them.
Also to mention are recurrent and severe infections requiring iv antibiotics or several courses of oral. Mainly pneumonia and pyelonephritis. I also have a very tender lower rib and painful thighs. I have lost over 2 stone in weight. 10 stone 10 lbs (150 lbs; 68 kg) to 8 stone 6 lbs (118 lbs; 53.5 kg).
Thanks again.
Kath. X
I forgot to mention that not included in the lab results print out are the results I was given over the phone which are the monoclonal spike lambda although I don't know at what level. Microglobulin beta 2 was mentioned although I know nothing more about that. I had hoped the print out would have shown them but apparently those results are in the hospital system and the gp doesn't have them.
Also to mention are recurrent and severe infections requiring iv antibiotics or several courses of oral. Mainly pneumonia and pyelonephritis. I also have a very tender lower rib and painful thighs. I have lost over 2 stone in weight. 10 stone 10 lbs (150 lbs; 68 kg) to 8 stone 6 lbs (118 lbs; 53.5 kg).
Thanks again.
Kath. X
-
Fozz - Name: Kath
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS Jan 2015
- Age at diagnosis: 44
Re: Does an IgA of 12g/L mean I will have to have a BMB?
Kath-
It is important to have the monoclonal spike and the beta 2 values. These are both important in the diagnosis of myeloma. Have you asked to have skeletal x-rays? I would bet in the UK that those would have to be done before NHS would approve your having MRI or CT/PET scans to see if you have bone lesions. Other tests to pursue for myeloma are the Freelite (free light chain) test which gives the levels of kappa and lambda lite chains in the blood and the ratio of kappa/lambda, a 24 hour urine analysis, and a chem profile that includes kidney function tests like creatinine.
If these tests point to you having myeloma, then the bone marrow biopsy is important to do to see what percentage of plasma cells are in your bone marrow and, if they do genetic studies on biopsies, what gene changes there are. BMB's aren't fun, but they are important for diagnosis and possible treatment. I've only had one at time of diagnosis because my myeloma is easily tracked through blood work.
In the US results of the initial testing and appointment to see the oncologist for results happen pretty quickly, at least in Philadelphia at the cancer centers. It took 1 week to get all of the blood, urine and x-ray results during the oncologist consultation. Based on those results he did the BMB right then. It was another 2 weeks before I got those results in consultation and the diagnosis of smoldering myeloma and a plan of action, watch and wait. I then looked for a myeloma specialist for a 2nd opinion and had to wait 2 months to get my initial appointment. But his recommendation was also watch and wait. So, the time to the appointment was ok. Except for anemia, I wasn't symptomatic at the time. I also opted to stay with the specialist as my only oncologist since I live 1 mile from his office and I felt secure with him.
If you can convince your GP to do all of the additional testing and it comes out that you have myeloma at some level, I would suggest that he refer you to a myeloma specialist, not a general oncologist. As you know, you will probably have to wait a while, but it will be worth it. If you are very symptomatic, it might be worth seeing a general oncologist and maybe starting treatment, but ask if that person will consult with a specialist before starting treatment. In the US it is very common for a local oncologist to consult with the specialist that you have seen so that if you live a distance from where the specialist is you can be treated by the local doctor and see the specialist a couple times a year, or less.
Good luck with trying to find out what is going on with you,
Nancy in Phila
It is important to have the monoclonal spike and the beta 2 values. These are both important in the diagnosis of myeloma. Have you asked to have skeletal x-rays? I would bet in the UK that those would have to be done before NHS would approve your having MRI or CT/PET scans to see if you have bone lesions. Other tests to pursue for myeloma are the Freelite (free light chain) test which gives the levels of kappa and lambda lite chains in the blood and the ratio of kappa/lambda, a 24 hour urine analysis, and a chem profile that includes kidney function tests like creatinine.
If these tests point to you having myeloma, then the bone marrow biopsy is important to do to see what percentage of plasma cells are in your bone marrow and, if they do genetic studies on biopsies, what gene changes there are. BMB's aren't fun, but they are important for diagnosis and possible treatment. I've only had one at time of diagnosis because my myeloma is easily tracked through blood work.
In the US results of the initial testing and appointment to see the oncologist for results happen pretty quickly, at least in Philadelphia at the cancer centers. It took 1 week to get all of the blood, urine and x-ray results during the oncologist consultation. Based on those results he did the BMB right then. It was another 2 weeks before I got those results in consultation and the diagnosis of smoldering myeloma and a plan of action, watch and wait. I then looked for a myeloma specialist for a 2nd opinion and had to wait 2 months to get my initial appointment. But his recommendation was also watch and wait. So, the time to the appointment was ok. Except for anemia, I wasn't symptomatic at the time. I also opted to stay with the specialist as my only oncologist since I live 1 mile from his office and I felt secure with him.
If you can convince your GP to do all of the additional testing and it comes out that you have myeloma at some level, I would suggest that he refer you to a myeloma specialist, not a general oncologist. As you know, you will probably have to wait a while, but it will be worth it. If you are very symptomatic, it might be worth seeing a general oncologist and maybe starting treatment, but ask if that person will consult with a specialist before starting treatment. In the US it is very common for a local oncologist to consult with the specialist that you have seen so that if you live a distance from where the specialist is you can be treated by the local doctor and see the specialist a couple times a year, or less.
Good luck with trying to find out what is going on with you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Does an IgA of 12g/L mean I will have to have a BMB?
I'm so pleased to have found someone else with raised IgA. Can't remember mine at the moment, will dig them out. I know it's high and I have anti smooth muscle and high basophil too.
Under hepatologist in Leeds, just been told fatty liver but not happy with that. Surely these suggest something else? Like you am thinking the worst.
Under hepatologist in Leeds, just been told fatty liver but not happy with that. Surely these suggest something else? Like you am thinking the worst.
Re: Does an IgA of 12g/L mean I will have to have a BMB?
Hi,
I am also in the UK in Devon. It is hellish to get any info or blood test results, I have a constant battle. My MGUS was found when being tested for severe rib pain three years ago which led to me being diagnosed with multiple sclerosis which i have apparently had since my early 20's and I'm 47 now! I struggled for a year to get referred to a heamatologist. I'm IgA too, only 6 g/l at moment, started at 3, i was told they don't worry till it reaches 20/30 g/l.
I continued to have rib pain and was given a skeletal survey which found a lesion on my skull and a bone marrow biopsy which i was told was 'ok' (never saw results). I now am seen every two months due to having problems with high platelets and blood clots in my arm this year, which may or may not be connected to the paraprotein, but they don't know. They usually see people every six months then if stable every year in the UK.
I would ask whether you are going to have a skeletal survey (x rays) and bone marrow biopsy and free light chain blood test. I don't know what the criteria is to do that test and my latest registrar (see different docs every appointment) said she wasn't going to do it as it wasn't necessary and was too expensive at £300!
I'm also anaemic which can be one of the symptoms of multiple myeloma. When I asked what they thought about the lytic lesion on my skull, I was told that's why I get seen more frequently. I would recommend that you ask your haematologist to explain everything fully to you as they don't seem to unless you ask!
I hope that you get better and more thorough care than I have experienced. The bone marrow isn't too bad. Just zone out and ask if they can give you something to relax you which, again, they don't seem to offer in the UK.
Best of luck with it all,
Angelina.
I am also in the UK in Devon. It is hellish to get any info or blood test results, I have a constant battle. My MGUS was found when being tested for severe rib pain three years ago which led to me being diagnosed with multiple sclerosis which i have apparently had since my early 20's and I'm 47 now! I struggled for a year to get referred to a heamatologist. I'm IgA too, only 6 g/l at moment, started at 3, i was told they don't worry till it reaches 20/30 g/l.
I continued to have rib pain and was given a skeletal survey which found a lesion on my skull and a bone marrow biopsy which i was told was 'ok' (never saw results). I now am seen every two months due to having problems with high platelets and blood clots in my arm this year, which may or may not be connected to the paraprotein, but they don't know. They usually see people every six months then if stable every year in the UK.
I would ask whether you are going to have a skeletal survey (x rays) and bone marrow biopsy and free light chain blood test. I don't know what the criteria is to do that test and my latest registrar (see different docs every appointment) said she wasn't going to do it as it wasn't necessary and was too expensive at £300!
I'm also anaemic which can be one of the symptoms of multiple myeloma. When I asked what they thought about the lytic lesion on my skull, I was told that's why I get seen more frequently. I would recommend that you ask your haematologist to explain everything fully to you as they don't seem to unless you ask!
I hope that you get better and more thorough care than I have experienced. The bone marrow isn't too bad. Just zone out and ask if they can give you something to relax you which, again, they don't seem to offer in the UK.
Best of luck with it all,
Angelina.
Re: Does an IgA of 12g/L mean I will have to have a BMB?
Thank you all for your replies.
Hopefully this week will see a few more pieces of the jigsaw. I'm seeing the haematologist in Leeds privately so hopefully he will have a bit of time to spend with me going through results and explaining things.
I've tried so hard to forget about it over the weekend, but it's hard. Shame we can't just plug ourselves into a computer for diagnostics like a car! It would be easier!
I'll keep you posted as the week unfolds.
Kath. xx
Hopefully this week will see a few more pieces of the jigsaw. I'm seeing the haematologist in Leeds privately so hopefully he will have a bit of time to spend with me going through results and explaining things.
I've tried so hard to forget about it over the weekend, but it's hard. Shame we can't just plug ourselves into a computer for diagnostics like a car! It would be easier!
I'll keep you posted as the week unfolds.
Kath. xx
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Fozz - Name: Kath
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS Jan 2015
- Age at diagnosis: 44
9 posts
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