Hi Everyone,
I was diagnosed in 2009 with a small paraprotein band IgM and have blood tests yearly. The figure then was 3.78, but the paraprotein band was so small it could not be quantified. My IgM does rise and my last test indicated a larger rise from 4.2 in 2013 to 4.3 in 2014 and my last test was 4.8. My GP wants to repeat test in three months, saying my paraprotein level is so small that it still cannot be quantified.
All this confuses me and I become extremely anxious. Any advice would be most welcome. I am 67 years old female and recently retired.
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Re: Four years on - confused & anxious
Hi Circles,
This is a little hard to follow, so allow me to ask a few questions.
What were you diagnosed with? It's really rare to have IgM-type multiple myeloma. A monoclonal gammopathy involving IgM usually turns out to be something other than multiple myeloma.
Are the values you are referring to in your post your IgM levels or your paraprotein levels?
What is the type of paraprotein that is listed in the various lab results, including your immunofixation (IFE) test? When referring to your paraprotein level, the test results should list a combination of one immunoglobulin (IgG, IgM, etc) plus another value like lambda or kappa.
What are the units of measure (mg/dL, etc) for these numbers?
Have you ever been seen by a multiple myeloma specialist?
This is a little hard to follow, so allow me to ask a few questions.
What were you diagnosed with? It's really rare to have IgM-type multiple myeloma. A monoclonal gammopathy involving IgM usually turns out to be something other than multiple myeloma.
Are the values you are referring to in your post your IgM levels or your paraprotein levels?
What is the type of paraprotein that is listed in the various lab results, including your immunofixation (IFE) test? When referring to your paraprotein level, the test results should list a combination of one immunoglobulin (IgG, IgM, etc) plus another value like lambda or kappa.
What are the units of measure (mg/dL, etc) for these numbers?
Have you ever been seen by a multiple myeloma specialist?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Four years on - confused & anxious
Hi Multibilly,
I thank you for responding. I saw a haemotologist (at my insistence) when first diagnosed with MGUS, here in Liverpool.
The doctor informed me that my level of paraprotein was unquantifiable, and "I was not to worry, go home, and enjoy your life," and that I should be monitored every year to check my serum immunoglobulin.
No one explained what that meant, so I googled it and became very confused. The level of immunoglobulin was 3.78 and paraprotein again unquantifiable approximately 2 years ago when my level rose to 4.2.
I paid to see a private consultant in order to have more clarification. He explained that my MGUS would rarely result in multiple myeloma but Waldenstroms macroglobulinemia or something akin to that.
What I cannot understand is why the levels are rising. The levels I refer to are IgM levels, as the paraprotein levels are still unquantifiable. I was told by the first consultant that if my IgM rose to 10 then I would be referred to a haemotologist.
I have not had any other tests by anyone save yearly blood tests, save for my GP requesting a further blood test in 3 months. When I asked why, she informed me that it had risen sharply and wanted to monitor.
Thanks, Circles
I thank you for responding. I saw a haemotologist (at my insistence) when first diagnosed with MGUS, here in Liverpool.
The doctor informed me that my level of paraprotein was unquantifiable, and "I was not to worry, go home, and enjoy your life," and that I should be monitored every year to check my serum immunoglobulin.
No one explained what that meant, so I googled it and became very confused. The level of immunoglobulin was 3.78 and paraprotein again unquantifiable approximately 2 years ago when my level rose to 4.2.
I paid to see a private consultant in order to have more clarification. He explained that my MGUS would rarely result in multiple myeloma but Waldenstroms macroglobulinemia or something akin to that.
What I cannot understand is why the levels are rising. The levels I refer to are IgM levels, as the paraprotein levels are still unquantifiable. I was told by the first consultant that if my IgM rose to 10 then I would be referred to a haemotologist.
I have not had any other tests by anyone save yearly blood tests, save for my GP requesting a further blood test in 3 months. When I asked why, she informed me that it had risen sharply and wanted to monitor.
Thanks, Circles
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Circles
Re: Four years on - confused & anxious
Hi Circles,
When I mentioned that a rising IgM could signify "something else", I was alluding to the possibility of something like WM. Having said that, I am totally unfamiliar with how one monitors WM patients for disease progression, and what the potential nuances are for monitoring that particular disease.
Did you ever have a bone marrow biopsy to confirm the presence of WM? With WM, one specifically looks for a particular kind of cell in the bone marrow to confirm the presence of WM.
When I mentioned that a rising IgM could signify "something else", I was alluding to the possibility of something like WM. Having said that, I am totally unfamiliar with how one monitors WM patients for disease progression, and what the potential nuances are for monitoring that particular disease.
Did you ever have a bone marrow biopsy to confirm the presence of WM? With WM, one specifically looks for a particular kind of cell in the bone marrow to confirm the presence of WM.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Four years on - confused & anxious
Hi Multibilly,
No, I have only had two professional consultations and never had any invasive test. I'm not sure where you are, I am in England.
The impression I was given is that my figures are so low that they don't actually mean much. However, having to have blood tests yearly and I am such a wuss frightens the stuffing out if me.
I know WM is a cancer and to me that is so scary. I have cried since being diagnosed in 2009 and can honestly say it has ruined my life. I know that it is irrational, but not being medically qualified it's confusing and I do not get copies of test results, just verbal reports. But I thank you for taking time and trouble in responding to me. I am grateful.
Regards
No, I have only had two professional consultations and never had any invasive test. I'm not sure where you are, I am in England.
The impression I was given is that my figures are so low that they don't actually mean much. However, having to have blood tests yearly and I am such a wuss frightens the stuffing out if me.
I know WM is a cancer and to me that is so scary. I have cried since being diagnosed in 2009 and can honestly say it has ruined my life. I know that it is irrational, but not being medically qualified it's confusing and I do not get copies of test results, just verbal reports. But I thank you for taking time and trouble in responding to me. I am grateful.
Regards
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Circles
Re: Four years on - confused & anxious
Given that your paraprotein level is unquantifiable, I would take a lot of solace in that fact and try not to fret.
I'm in the USA, but you have similar rights to copies of your medical records in the UK.
http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68
I'm in the USA, but you have similar rights to copies of your medical records in the UK.
http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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