Hi everyone,
I'm a 43 year old male living in Ireland. In general I'm normally healthy enough.
In 2016 I had a bad year for me, with four bad head colds, shingles and an infection after a minor procedure.
It was unusual for me to have health issues, so I went to my GP to talk about it. They did some blood tests and found a slightly low white cell count. Tests three months later showed the same. So, to be safe, they referred me to a haematologist.
The haematologist did further tests, and due to the results she decided to redo them just to confirm. I got the results nearly two weeks ago. She then told me that my white cell count was ok, but I had two issues:
1. My IgG was low (5.84 g/l and the range should be 7 - 16). She basically told me this was possibly the cause of me getting more colds and infections as my antibodies are low. She said it could be common variable immune deficiency (CVID), and that I may end up having to get injections or infusions of antibodies if it's causing problems in my life, but it might not be that serious and it might just be something I have and have to be careful about.
2. That I have monoclonal proteins in my blood and that I have MGUS. She says the levels are very low. In fact, if it helps, I'll type below all the results I was given:
Total Protein: 65 g/l (Range 65 - 85)
Albumin: 46 g/l (Range 35 - 50)
IgG: 5.84 g/l (Range 7 - 16) LOW
IgA: 2.22 g/l (Range 0.7 - 4)
IgM: 0.92 (Range 0.4 - 2.3)
Electrophoresis: Consistent with reduced immunoglobulin
Immunofix. Pentavalent: Monoclonal IgA Type Lambda Band Detected
Paraprotein: Band migrating in the beta zone. Unable to quantify monoclonal band. Please refer to immunoglobulin level for an estimation of the paraprotein level.
She basically said that MGUS could develop into multiple myeloma or lymphoma, but she said the levels are very low and she reckons I could just spend years getting a yearly test to keep an eye on the levels.
Due to the MGUS and the possible CVID, she wants me to see a immunologist, but before then she has scheduled me for a bone marrow biopsy, which is happening on Wednesday.
Obviously, since seeing the haematologist I've been doing research and the prospect of multiple myeloma etc. is scary. I'm trying to figure out how worried I should be. She said the levels were low, but the very next test she's getting is a bone marrow biopsy, and a lot of what I've read online says the biopsy is done 'in some cases' and people 'have even had the biopsy done'. So naturally I'm concerned that that's her next step!
When it comes down to it, I'm wondering how worried I should be. Yes, MGUS itself isn't a nice diagnosis, but I'm trying to figure out if it's more than that already, or if my haematologist is just being careful (which is a good thing!).
Any thoughts/advice would be appreciated, thanks!
J.
Forums
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Jasonb - Name: Jason
- Who do you know with myeloma?: Me - IgA MGUS
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 43
Re: Starting on the MGUS road - how worried should I be?
Hi Jason,
Welcome to the forum.
Did the hematologist also run a serum free light chain assay (look for test results that contain the words "lambda" and "kappa")? IF so, what were those values (including units of measure)?
Monoclonal gammopathies can sometimes lower one or more of your "uninvolved" immunoglobulin levels, which in your case would be either your IgG or IgM level. But you do indeed seem to have a very low monoclonal protein level (M-spike), if they can't quantify it. So, your IgA M-spike is not likely associated with your lowered IgG level.
The next logical thing to check would be your kappa and lambda free light chain values to see how elevated your lambda level is and to establish your lambda/kappa ratio. After that, the next thing to check would be your bone marrow plasma cell percentage level (which is what the bone marrow biopsy will do).
So, while it does seem like you have MGUS based on what you posted here, you will need to know your serum free light chain values and the results of the bone marrow biopsy to definitively say if this is MGUS or not. It does sound like your hematologist is being quite thorough, which is good news.
If it does turn out to be IgA MGUS, the risk of IgA MGUS turning into multiple myeloma or something else requiring treatment is only about 1-2% per year, so I would take heart in that statistic.
Welcome to the forum.
Did the hematologist also run a serum free light chain assay (look for test results that contain the words "lambda" and "kappa")? IF so, what were those values (including units of measure)?
Monoclonal gammopathies can sometimes lower one or more of your "uninvolved" immunoglobulin levels, which in your case would be either your IgG or IgM level. But you do indeed seem to have a very low monoclonal protein level (M-spike), if they can't quantify it. So, your IgA M-spike is not likely associated with your lowered IgG level.
The next logical thing to check would be your kappa and lambda free light chain values to see how elevated your lambda level is and to establish your lambda/kappa ratio. After that, the next thing to check would be your bone marrow plasma cell percentage level (which is what the bone marrow biopsy will do).
So, while it does seem like you have MGUS based on what you posted here, you will need to know your serum free light chain values and the results of the bone marrow biopsy to definitively say if this is MGUS or not. It does sound like your hematologist is being quite thorough, which is good news.
If it does turn out to be IgA MGUS, the risk of IgA MGUS turning into multiple myeloma or something else requiring treatment is only about 1-2% per year, so I would take heart in that statistic.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Starting on the MGUS road - how worried should I be?
Hi Multibilly,
Thanks for the welcome, and thanks for taking the time to reply.
To the best of my knowledge, a serum free light chain assay wasn't run. I'm guessing this is just another test done on the blood? In that case, it might have been done, but I wasn't told the results. I've written down everything on my results sheet, and there's no mention of results from that test on it.
If the serum free light chain assay is a different kind of test, and isn't just something run on the blood they take out of your arm, then it definitely hasn't happened, as blood tests are all I've had so far.
Should I be reading anything into the fact that I'm getting a bone marrow biopsy done before a serum free light chain assay? She is referring me to an immunologist, and one of the reasons why I'm getting the biopsy done is because she said the immunologist will only look for that to be done anyhow, so it's better to have it done before my appointment with them. My haematologist is going to go over the biopsy results with me before I see the immunologist.
I suppose the impression I have is that she expects the biopsy results to 'match' the blood work, i.e., have a vary low value to match the very low value of the IgA M-spike. And I suppose my question is this: am I wrong to have this impression, is it possible that I could be getting worse news than just a 'confirmation' of MGUS from the biopsy?
I had read about the 1-2% chance, but had misunderstood it and assumed that meant that in 20 years time I'd be around the 30% chance of getting it each year. After reading some threads on here, I now understand that while I have a 30% chance of it developing in the next 20 years, it's still only 1-2% in any given year. In other words, if it hasn't developed in 20 years time, there's still only a 1-2% chance of it developing in year 21. That's reassuring, I have to say!
Thanks,
J.
Thanks for the welcome, and thanks for taking the time to reply.
To the best of my knowledge, a serum free light chain assay wasn't run. I'm guessing this is just another test done on the blood? In that case, it might have been done, but I wasn't told the results. I've written down everything on my results sheet, and there's no mention of results from that test on it.
If the serum free light chain assay is a different kind of test, and isn't just something run on the blood they take out of your arm, then it definitely hasn't happened, as blood tests are all I've had so far.
Should I be reading anything into the fact that I'm getting a bone marrow biopsy done before a serum free light chain assay? She is referring me to an immunologist, and one of the reasons why I'm getting the biopsy done is because she said the immunologist will only look for that to be done anyhow, so it's better to have it done before my appointment with them. My haematologist is going to go over the biopsy results with me before I see the immunologist.
I suppose the impression I have is that she expects the biopsy results to 'match' the blood work, i.e., have a vary low value to match the very low value of the IgA M-spike. And I suppose my question is this: am I wrong to have this impression, is it possible that I could be getting worse news than just a 'confirmation' of MGUS from the biopsy?
I had read about the 1-2% chance, but had misunderstood it and assumed that meant that in 20 years time I'd be around the 30% chance of getting it each year. After reading some threads on here, I now understand that while I have a 30% chance of it developing in the next 20 years, it's still only 1-2% in any given year. In other words, if it hasn't developed in 20 years time, there's still only a 1-2% chance of it developing in year 21. That's reassuring, I have to say!
Thanks,
J.
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Jasonb - Name: Jason
- Who do you know with myeloma?: Me - IgA MGUS
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 43
Re: Starting on the MGUS road - how worried should I be?
A serum free light chain assay is a standard blood test that is used to screen for monoclonal gammopathies and is usually ordered along with the other blood tests you already had performed. It would be a little unusual to move to a bone marrow biopsy without first knowing the serum free light chain results, at least in my opinion. You may want to contact her office and ask for a copy of all the lab results.
I'm not a doc and I'm certainly not looking at everything your docs are. But I am guessing that one of the reasons she is running a bone marrow biopsy is to rule out a form of myeloma known as oligolconal IgA myeloma. This is where you can have very little monoclonal IgA protein show up in the blood, yet you might have a higher concentration of myeloma in the bone marrow that may be causing your low IgG (a condition known as "immunoparesis"). A bone marrow biopsy will also help with a differential diagnosis to confirm whether your might have CVID or not.
There are also other forms of myeloma where the disease primarily presents with an elevated serum free light chain value accompanied by either a very small or a non-existent serum m-spike. Hence my reason for asking about your serum free light chain numbers.
Keep in mind that the above variations of myeloma are not that common, so you are probably still looking at MGUS. If your free light chain numbers are relatively normal, it could even be a transient situation where the detection of serum monoclonal protein may be showing up just temporarily and will simply disappear with time. The bone marrow biopsy will likely tell your for sure what's going on. While I know it's hard to do, I would just sit tight and wait for the bone marrow biopsy results rather than speculate what might be going on just now.
I'm not a doc and I'm certainly not looking at everything your docs are. But I am guessing that one of the reasons she is running a bone marrow biopsy is to rule out a form of myeloma known as oligolconal IgA myeloma. This is where you can have very little monoclonal IgA protein show up in the blood, yet you might have a higher concentration of myeloma in the bone marrow that may be causing your low IgG (a condition known as "immunoparesis"). A bone marrow biopsy will also help with a differential diagnosis to confirm whether your might have CVID or not.
There are also other forms of myeloma where the disease primarily presents with an elevated serum free light chain value accompanied by either a very small or a non-existent serum m-spike. Hence my reason for asking about your serum free light chain numbers.
Keep in mind that the above variations of myeloma are not that common, so you are probably still looking at MGUS. If your free light chain numbers are relatively normal, it could even be a transient situation where the detection of serum monoclonal protein may be showing up just temporarily and will simply disappear with time. The bone marrow biopsy will likely tell your for sure what's going on. While I know it's hard to do, I would just sit tight and wait for the bone marrow biopsy results rather than speculate what might be going on just now.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Starting on the MGUS road - how worried should I be?
Thanks again for your response, Multibilly.
I was talking to my haematologist and she is going to check with the lab to see if they did do a serum free light chain assay or not. I'll be seeing her on Wednesday for the biopsy, so she can tell me then.
She also confirmed for me that as far as she's concerned, she's not worried it's anything other than MGUS, and she expects the biopsy to confirm that. Of course, you never know, but it is reassuring.
It'll be a few weeks before I get the results, but hopefully they'll be good ones.
Thanks again for your help, I appreciate it.
J.
I was talking to my haematologist and she is going to check with the lab to see if they did do a serum free light chain assay or not. I'll be seeing her on Wednesday for the biopsy, so she can tell me then.
She also confirmed for me that as far as she's concerned, she's not worried it's anything other than MGUS, and she expects the biopsy to confirm that. Of course, you never know, but it is reassuring.
It'll be a few weeks before I get the results, but hopefully they'll be good ones.
Thanks again for your help, I appreciate it.
J.
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Jasonb - Name: Jason
- Who do you know with myeloma?: Me - IgA MGUS
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 43
Re: Starting on the MGUS road - how worried should I be?
Hi again,
Just a quick update.
Got the bone marrow biopsy done today. It was a little sore and uncomfortable, it reminded me of what it feels like getting a tooth out or something like that. I'm a bit sore now but not too bad really. I got her to show me the needles (afterwards!) and they're quite impressive in size!
The haematologist did an aspiration and a biopsy. She also did something else while she was there. I overheard her talking to the nurse about it, something like an 'R and ?' or 'R.?.?' Not too certain what it was, but she decided to do it now while she was in there.
Anyhow, it all went well enough. I talked to her about the serum free light chain assay and they had done that on my blood, but it was done a couple of days after the blood was taken. My sample was taken over the Christmas period, which caused delays, so they couldn't get correct results. So she also took blood today for that test.
I'll get an appointment in a few weeks where she'll have the results of the biopsy and the serum free light chain assay, and then I'll have a much better idea of where I stand.
Thanks,
J.
Just a quick update.
Got the bone marrow biopsy done today. It was a little sore and uncomfortable, it reminded me of what it feels like getting a tooth out or something like that. I'm a bit sore now but not too bad really. I got her to show me the needles (afterwards!) and they're quite impressive in size!
The haematologist did an aspiration and a biopsy. She also did something else while she was there. I overheard her talking to the nurse about it, something like an 'R and ?' or 'R.?.?' Not too certain what it was, but she decided to do it now while she was in there.
Anyhow, it all went well enough. I talked to her about the serum free light chain assay and they had done that on my blood, but it was done a couple of days after the blood was taken. My sample was taken over the Christmas period, which caused delays, so they couldn't get correct results. So she also took blood today for that test.
I'll get an appointment in a few weeks where she'll have the results of the biopsy and the serum free light chain assay, and then I'll have a much better idea of where I stand.
Thanks,
J.
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Jasonb - Name: Jason
- Who do you know with myeloma?: Me - IgA MGUS
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 43
Re: Starting on the MGUS road - how worried should I be?
I'm sure everything is going to be just fine! Sorry you had to get a bone marrow biopsy. Yuck!
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Starting on the MGUS road - how worried should I be?
Thanks, countrygirl, I appreciate it. The biopsy wasn't too bad. A bit sore, but it's only 10 mins. Took the dressing off this evening and it just looks like a little slice now, and is only sore if I put pressure on the area. Hopefully it will be worth it to get some good results!
J.
J.
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Jasonb - Name: Jason
- Who do you know with myeloma?: Me - IgA MGUS
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 43
Re: Starting on the MGUS road - how worried should I be?
As a fellow MGUS "er" I'm thinking of you as well Jason. Best of luck with the results. Glad the biopsy wasn't too bad and I wish you well during your recovery from the procedure. 2016 was not a great year for me either. Hang in there!
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Starting on the MGUS road - how worried should I be?
Thanks, ricejon!
Still no date for my appointment, and thankfully it's all taking a bit of a back seat at the moment as other, normal, stuff in life has taken over. That's a good thing; I can't spend all my time thinking about this, especially as at the moment there's nothing 'wrong' with me!
Thanks,
J.
Still no date for my appointment, and thankfully it's all taking a bit of a back seat at the moment as other, normal, stuff in life has taken over. That's a good thing; I can't spend all my time thinking about this, especially as at the moment there's nothing 'wrong' with me!
Thanks,
J.
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Jasonb - Name: Jason
- Who do you know with myeloma?: Me - IgA MGUS
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 43
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