Well, my vocabulary sure has expanded in these last few days. I had some routine bloodwork done recently and monoclonal gammopathy IgG lambda was detected. To be honest, I have no knowledge of bone marrow, blood cells, and I should have paid better attention in biology class!
A little history: I'm a 46 year old mother of 3, with low vitamin D and osteopenia, but otherwise in good health. I like to jog; however, I sometimes get pain in my lower back and outside hip (which I have always attributed to jogging).
My question is, which follow up tests should I be requesting from my doctor? He is requesting me to do a 24-hour urine test (with bloodwork) and hip X-ray, and he has referred me to a hematologist.
Should I feel comfortable that this will cover the bases? And that the hematologist will take things from there?
I feel like I need to do a little research before meeting the specialist, so that I have the questions I need answers to.
Thanks, just trying to keep everything in perspective.
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Re: MGUS detected - where do we go from here?
Hi Lisa,
Welcome to the forum. You sound pretty together on this subject having only been recently diagnosed.
Do you have the lab test results that the doctor already ran?
In general, you want to do the following tests:
Serum Protein Electrophoresis (SPEP)
Serum Immunofixation (this was almost certainly already done if you know your are IgG-Lambda type MGUS)
Free Light Chain Assay
Quantified Immunoglobulins
Comprehensive Metabolic Panel
CBC
Beta2 Microglobulin (at least the first time you are tested)
24-hour urine, at least initially.
Vitamin D deficiency is common with a lot of myeloma patients, so your Vitamin D level should be measured every once in awhile. If you are low, it's good to take a high quality D3 supplement and perhaps also a calcium supplement. You also may need to take more than the standard 600-800 units of Vitamin D to get and keep your Vitamin D level in the normal range.
I might hold off on the hip xray and instead push for a whole-body MRI or a PET/CT scan (lesions associated with myeloma can pop up in many different places, not just in the spine and hips). These imaging modalities are the new standards for imaging newly diagnosed patients suspected of having a monoclonal gammopathy and your GP may not be aware of this. You may also want to get a fresh DEXA scan to judge the current severity of your osteopenia. See this article for some of the new diagnostic criteria:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteri
Most importantly, folks on this forum would suggest not just going to a hematologist/oncologist, but instead to seek out one that specializes exclusively in multiple myeloma. If you let us know what city you are in, folks can make some recommendations as to where to go. You also might want to consider doing the imaging under the guidance of the specialist.
Depending on what all the above tests reveal, your specialist might then consider ordering a bone marrow biopsy.
Lastly, if the diagnosis is indeed MGUS, keep in mind that the risk of it progressing to symptomatic multiple myeloma is only about 1%/year.
Hope this helps a bit.
Welcome to the forum. You sound pretty together on this subject having only been recently diagnosed.
Do you have the lab test results that the doctor already ran?
In general, you want to do the following tests:
Serum Protein Electrophoresis (SPEP)
Serum Immunofixation (this was almost certainly already done if you know your are IgG-Lambda type MGUS)
Free Light Chain Assay
Quantified Immunoglobulins
Comprehensive Metabolic Panel
CBC
Beta2 Microglobulin (at least the first time you are tested)
24-hour urine, at least initially.
Vitamin D deficiency is common with a lot of myeloma patients, so your Vitamin D level should be measured every once in awhile. If you are low, it's good to take a high quality D3 supplement and perhaps also a calcium supplement. You also may need to take more than the standard 600-800 units of Vitamin D to get and keep your Vitamin D level in the normal range.
I might hold off on the hip xray and instead push for a whole-body MRI or a PET/CT scan (lesions associated with myeloma can pop up in many different places, not just in the spine and hips). These imaging modalities are the new standards for imaging newly diagnosed patients suspected of having a monoclonal gammopathy and your GP may not be aware of this. You may also want to get a fresh DEXA scan to judge the current severity of your osteopenia. See this article for some of the new diagnostic criteria:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteri
Most importantly, folks on this forum would suggest not just going to a hematologist/oncologist, but instead to seek out one that specializes exclusively in multiple myeloma. If you let us know what city you are in, folks can make some recommendations as to where to go. You also might want to consider doing the imaging under the guidance of the specialist.
Depending on what all the above tests reveal, your specialist might then consider ordering a bone marrow biopsy.
Lastly, if the diagnosis is indeed MGUS, keep in mind that the risk of it progressing to symptomatic multiple myeloma is only about 1%/year.
Hope this helps a bit.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS detected - where do we go from here?
Thanks so much for that info. It's really appreciated and helpful.
I am thinking that I should hold off on any panic...until there is something to panic about. This reminds me of my experience, about 2 years ago, when a mass was discovered in my breast. I was told that the mass could stay the same, or grow over time, and that I would undergo more frequent, regular monitoring. So far, all is good!
So, in this case, unless the tests reveal something, I can assume that I will just be monitored more frequently than I was before. Out of curiosity, if the test results are stable over time, how long will doctors continue to monitor (after 2 years? 5 years? Forever?)
Finally, I'm from Toronto, Canada. Would love to hear any suggestions/opinions regarding best clinics/specialists in the area.
PS: Just one more thought....has there been any link to MGUS and stress? I've had a particularly stressful year, with the loss of 3 family members. Of course, I know stress should always be managed, but I'm wondering if there are any studies related to this.
I am thinking that I should hold off on any panic...until there is something to panic about. This reminds me of my experience, about 2 years ago, when a mass was discovered in my breast. I was told that the mass could stay the same, or grow over time, and that I would undergo more frequent, regular monitoring. So far, all is good!
So, in this case, unless the tests reveal something, I can assume that I will just be monitored more frequently than I was before. Out of curiosity, if the test results are stable over time, how long will doctors continue to monitor (after 2 years? 5 years? Forever?)
Finally, I'm from Toronto, Canada. Would love to hear any suggestions/opinions regarding best clinics/specialists in the area.
PS: Just one more thought....has there been any link to MGUS and stress? I've had a particularly stressful year, with the loss of 3 family members. Of course, I know stress should always be managed, but I'm wondering if there are any studies related to this.
Re: MGUS detected - where do we go from here?
Lisa,
There are a few folks from Canada on this site that will probably chime in.
If the diagnosis is MGUS, you would probably get tested every 3 months or so for a couple of periods. This may then extend out to every 6 months and then perhaps yearly, depending on the doctor and your specific numbers and risk factors. You would unfortunately want to keep getting tested at least annually or so for the rest of your life.
There is actually a clinical trial under way that is analyzing the question of stress with respect to changes in one's genes for MGUS and SMM (smoldering multiple myeloma) patients. But I don't think anybody can say with any scientific certainty that stress can be the cause of developing monoclonal gammopathy in the first place.
"Genomic and Psychosocial Effects of the 3RP on Patients With MGUS and Smoldering Multiple Myeloma," clinical trial at several Boston, MA centers (full information at clinicaltrials.gov)
There are a few folks from Canada on this site that will probably chime in.
If the diagnosis is MGUS, you would probably get tested every 3 months or so for a couple of periods. This may then extend out to every 6 months and then perhaps yearly, depending on the doctor and your specific numbers and risk factors. You would unfortunately want to keep getting tested at least annually or so for the rest of your life.
There is actually a clinical trial under way that is analyzing the question of stress with respect to changes in one's genes for MGUS and SMM (smoldering multiple myeloma) patients. But I don't think anybody can say with any scientific certainty that stress can be the cause of developing monoclonal gammopathy in the first place.
"Genomic and Psychosocial Effects of the 3RP on Patients With MGUS and Smoldering Multiple Myeloma," clinical trial at several Boston, MA centers (full information at clinicaltrials.gov)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS detected - where do we go from here?
Here we go again ...
As part of my routine physical testing, I also had a mammogram done this week. The next day, I was called to come in for a magnification mammogram for a suspicious new cluster of calcifications.
Given that I am still just learning about MGUS, I need to ask ... would this be related to MGUS? I guess I just feel anxious that there are TWO NEW conditions that need further investigation, so I wonder if one is causing the other?
I was hoping for a test result without any suspicion of anything! lol
Any advice would be truly appreciated.
As part of my routine physical testing, I also had a mammogram done this week. The next day, I was called to come in for a magnification mammogram for a suspicious new cluster of calcifications.
Given that I am still just learning about MGUS, I need to ask ... would this be related to MGUS? I guess I just feel anxious that there are TWO NEW conditions that need further investigation, so I wonder if one is causing the other?
I was hoping for a test result without any suspicion of anything! lol
Any advice would be truly appreciated.
Re: MGUS detected - where do we go from here?
Hi Lisa,
I hope you are not diagnosed with MGUS, but if you are diagnosed with MGUS, you will be referred to a hematologist for observation, and then at some point, the hematologist would likely eventually send you to myeloma clinic at Princess Margaret Hospital on hospital row, for some direction on which way to proceed.
It is not known what exactly causes MGUS, it is more common in men than women, and more common among agricultural workers exposed to pesticides etc.
M Brigden and C Venner, "Monoclonal gammopathy and primary care," British Columbia Medical Journal, Feb 2014 (full text of article)
Keep in mind the end summary of the article
I hope you are not diagnosed with MGUS, but if you are diagnosed with MGUS, you will be referred to a hematologist for observation, and then at some point, the hematologist would likely eventually send you to myeloma clinic at Princess Margaret Hospital on hospital row, for some direction on which way to proceed.
It is not known what exactly causes MGUS, it is more common in men than women, and more common among agricultural workers exposed to pesticides etc.
M Brigden and C Venner, "Monoclonal gammopathy and primary care," British Columbia Medical Journal, Feb 2014 (full text of article)
Keep in mind the end summary of the article
Since more than 70% of patients with MGUS discovered incidentally are in the low-risk category for progression, and because MGUS itself occurs predominantly in older individuals, more than 90% of patients diagnosed with MGUS today will probably never develop multiple myeloma or another malignant plasmaproliferative disorder.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: MGUS detected - where do we go from here?
Hi Lisa,
I'm not a doc, so check with yours.
But if you have a diagnosis of MGUS, it would make sense to me to be vigilant about the development of any potential extramedullary plasmactyomas. These are similar to the plasmacytomas that most often occur in the bones of multiple myeloma patients, but instead develop elsewhere in the soft tissues of one's body. A simple needle biopsy or a PET/CT could confirm the nature of any suspicious area in the breast. But note that calcifications show up all the time on mammographs and are often not a reason for concern.
http://www.cancer.org/treatment/understandingyourdiagnosis/examsandtestdescriptions/mammogramsandotherbreastimagingprocedures/mammograms-and-other-breast-imaging-procedures-what-does-doc-look-for
As far as I know there is no currently established relationship between a monoclonal gammopathy and breast cancer (I remember looking into this before since my family has BRCA2 gene carriers).
Hope the calcifications turn out to be nothing.
I'm not a doc, so check with yours.
But if you have a diagnosis of MGUS, it would make sense to me to be vigilant about the development of any potential extramedullary plasmactyomas. These are similar to the plasmacytomas that most often occur in the bones of multiple myeloma patients, but instead develop elsewhere in the soft tissues of one's body. A simple needle biopsy or a PET/CT could confirm the nature of any suspicious area in the breast. But note that calcifications show up all the time on mammographs and are often not a reason for concern.
http://www.cancer.org/treatment/understandingyourdiagnosis/examsandtestdescriptions/mammogramsandotherbreastimagingprocedures/mammograms-and-other-breast-imaging-procedures-what-does-doc-look-for
As far as I know there is no currently established relationship between a monoclonal gammopathy and breast cancer (I remember looking into this before since my family has BRCA2 gene carriers).
Hope the calcifications turn out to be nothing.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS detected - where do we go from here?
Hi Lisa,
Any update to share? Regarding an oncologist for your MGUS, there are plenty of haematologists that are excellent in Toronto. It depends which part of the city you're in as to where you get referred. You may also wish to request a 2nd opinion from a myeloma specialist at Princess Margaret.
My wife was diagnosed with MGUS in 2002. She had blood work done annually until 2015 when she had a spike. She was initially treated at North York General, then transferred to Princess Margaret for her transplants.
We only have the best things to say about both institutions and the doctors that she saw.
Wish you the best!
Any update to share? Regarding an oncologist for your MGUS, there are plenty of haematologists that are excellent in Toronto. It depends which part of the city you're in as to where you get referred. You may also wish to request a 2nd opinion from a myeloma specialist at Princess Margaret.
My wife was diagnosed with MGUS in 2002. She had blood work done annually until 2015 when she had a spike. She was initially treated at North York General, then transferred to Princess Margaret for her transplants.
We only have the best things to say about both institutions and the doctors that she saw.
Wish you the best!
-
SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
8 posts
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