Hello all,
My 65 year old father received a diagnosis of MGUS today from an oncologist. We knew this was a possibility due to his labs drawn by his primary care doctor last month being abnormal.
I have been doing a lot of reading here and I expected to go to today's appointment and hear that before a diagnosis could be made that further tests would need to be done (additional labs, a bone survey, and a possible bone marrow biopsy). However the oncologist said that his M-spike is "not malignant" and that he sees no need for tests right now. He recommends we wait three months and then repeat his lab work and get a bone survey.
The labs we have from last month are as follows:
IgG 1936 mg/dL (694-1618) High
IgA 54 mg/dL (81 - 463) Low
IgM 10 mg/dL (48-271) Low
Kappa 73 mg/dL (74 - 295) Low
Lambda 580 mg/dL (32 - 156) High
Kappa/Lambda ratio 0.1 (1.3 - 2.7) Low
M Spike 1.7 g/dL
Note: Restricted band / M-Spike migrating in gamma globulin region
Beta 2 Microglobulin 2.94 mg/L (< or = 2.51) High
Urine immunofixation was normal.
Creatinine, BUN, calcium were all normal.
I expected the doctor to order a CBC since that was not originally checked last month, so we don't know if anemia is an issue. My father also recently developed severe lower back pain that lasted a week and has now improved, but there is still some slight pain.
I am uncomfortable with waiting, but my father thinks I am overthinking this. I think he needs to seek a second opinion. Any thoughts or input is greatly appreciated. We are new to this and overwhelmed. I hate to add worry to my father's life by pushing this issue but I don't want to wait if this is not the best course of action.
Thank you!
Forums
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Helen521 - Who do you know with myeloma?: father (Smoldering)
- When were you/they diagnosed?: Sept 2016
- Age at diagnosis: 65
Re: MGUS diagnosis today, but should more tests be run?
Your dad's M-spike and free light chain ratio are modest, which is good news. But given he has back pain in conjunction with these markers, I find it hard to understand why a skeletal survey is being postponed for 3 months. BTW, the general wisdom these days is to use a PET/CT or whole body MRI for initial diagnostic purposes, so I would inquire about perhaps using one of those imaging modalities. See https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
I also find it hard to believe that an onc would make a diagnosis without even seeing a CBC, if only to have those results as a baseline. A CBC is a fundamental (and inexpensive) test and routine monitoring testing should include a CBC, comprehensive metabolic panel, SPEP, serum immunofixation, quantified immunoglobulins and a serum free light chain test.
Given your concerns, it might indeed make sense to get a second opinion from a top multiple myeloma specialist. Keep in mind that you can always use your current onc (or another onc of your choosing) for routine testing and monitoring and only go to the multiple myeloma specialist for an initial second opinion or if any key markers head south.
If you let us know what city your father is in, folks on the forum can make some recommendations.
I also find it hard to believe that an onc would make a diagnosis without even seeing a CBC, if only to have those results as a baseline. A CBC is a fundamental (and inexpensive) test and routine monitoring testing should include a CBC, comprehensive metabolic panel, SPEP, serum immunofixation, quantified immunoglobulins and a serum free light chain test.
Given your concerns, it might indeed make sense to get a second opinion from a top multiple myeloma specialist. Keep in mind that you can always use your current onc (or another onc of your choosing) for routine testing and monitoring and only go to the multiple myeloma specialist for an initial second opinion or if any key markers head south.
If you let us know what city your father is in, folks on the forum can make some recommendations.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis today, but should more tests be run?
Thank you, Multibilly. I appreciate your response. I was very surprised as well that the oncologist wanted to wait three months for the CBC.
I had the impression that a diagnosis couldn't be officially made until they had other data like the CRAB criteria (some of which my father is missing) and also the bone marrow biopsy. I had read that if an M-spike is above 1.5 g/dL, a bone marrow biopsy is often indicated. When I questioned the oncologist, he said he is not sure where I heard this from, and that they go by 2.5 g/dL.
We live in-between Philadelphia and Hershey, Pennsylvania. I know both areas have doctors who specialize in myeloma and MGUS. I am strongly encouraging my father to seek a second opinion at one of these places, but I understand that he is also trying to process all of this info.
Once again, thank you for your input.
I had the impression that a diagnosis couldn't be officially made until they had other data like the CRAB criteria (some of which my father is missing) and also the bone marrow biopsy. I had read that if an M-spike is above 1.5 g/dL, a bone marrow biopsy is often indicated. When I questioned the oncologist, he said he is not sure where I heard this from, and that they go by 2.5 g/dL.
We live in-between Philadelphia and Hershey, Pennsylvania. I know both areas have doctors who specialize in myeloma and MGUS. I am strongly encouraging my father to seek a second opinion at one of these places, but I understand that he is also trying to process all of this info.
Once again, thank you for your input.
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Helen521 - Who do you know with myeloma?: father (Smoldering)
- When were you/they diagnosed?: Sept 2016
- Age at diagnosis: 65
Re: MGUS diagnosis today, but should more tests be run?
My blood tests revealed an M-spike last September / October. But my specialist didn't diagnose multiple myeloma (he knew it was either that or MGUS) until a bone marrow biopsy was performed along with the bone scan.
Donnie
Donnie
Last edited by Donnie on Wed Jul 06, 2016 10:00 pm, edited 1 time in total.
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Donnie - Name: Donnie
- Who do you know with myeloma?: self
- When were you/they diagnosed?: October, 2015
- Age at diagnosis: 61
Re: MGUS diagnosis today, but should more tests be run?
I've come across a few posts on this site where a bone marrow biopsy wasn't ordered based on an MGUS diagnosis with a very low M-spike and low serum free light chains (and one of the forum's Medical Advisors agreed with that approach in at least once case). But you might want to read this post by Dr. Kaufman.
Note that since the time of Dr. Kaufman's post, cytogenetics has become one of the often-used factors to help assess risk of progression in smoldering multiple myeloma patients.
In any case, it strikes me that a 1.7 g/dL M-spike would be enough to warrant a bone marrow biopsy. In fact, 1.7 g/dL was my exact M-spike level at the time of my diagnosis. By virtue of having a bone marrow biopsy, I was then unfortunately diagnosed with smoldering myeloma instead of MGUS, since my bone marrow plasma cell percentage from the biopsy was found to be 11% (but I at least had clean cytogenetics
). In the first couple of weeks of the diagnostic process, I also had a skeletal survey, DEXA scan, and a PET/CT.
Note that since the time of Dr. Kaufman's post, cytogenetics has become one of the often-used factors to help assess risk of progression in smoldering multiple myeloma patients.
In any case, it strikes me that a 1.7 g/dL M-spike would be enough to warrant a bone marrow biopsy. In fact, 1.7 g/dL was my exact M-spike level at the time of my diagnosis. By virtue of having a bone marrow biopsy, I was then unfortunately diagnosed with smoldering myeloma instead of MGUS, since my bone marrow plasma cell percentage from the biopsy was found to be 11% (but I at least had clean cytogenetics
). In the first couple of weeks of the diagnostic process, I also had a skeletal survey, DEXA scan, and a PET/CT.-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis today, but should more tests be run?
Once again, I really appreciate the info, Multibilly. My father is receptive to the idea of a second opinion, so we are currently trying to get in to see a myeloma specialist at Hershey Medical Center.
I'm still confused why the oncologist said an M-spike of 1.7 is not malignant. I understand the criteria for multiple myeloma is an M-Spike of greater than 3.0 g/dL. However, isn't that the also the case for smoldering multiple myeloma?
I realize that there are other factors that play into a diagnosis which is why I pushed for a second opinion after hearing this original doctor. He just confused me because he was saying with an M-spike of 1.7 there is no need for further testing right now.
I'm still confused why the oncologist said an M-spike of 1.7 is not malignant. I understand the criteria for multiple myeloma is an M-Spike of greater than 3.0 g/dL. However, isn't that the also the case for smoldering multiple myeloma?
I realize that there are other factors that play into a diagnosis which is why I pushed for a second opinion after hearing this original doctor. He just confused me because he was saying with an M-spike of 1.7 there is no need for further testing right now.
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Helen521 - Who do you know with myeloma?: father (Smoldering)
- When were you/they diagnosed?: Sept 2016
- Age at diagnosis: 65
Re: MGUS diagnosis today, but should more tests be run?
Actually, the M-spike threshold of 3.0 g/dL is only used as one of the factors to help differentiate smoldering multiple myeloma from MGUS. But be clear that you can have a diagnosis of smoldering multiple myeloma with an M-spike less than 3.0 g/dL if your bone marrow plasma cell % is > 10%. This is in fact is my own exact situation.
You can also be diagnosed with multiple myeloma with an M-spike that is less than 3.0 g/dL since a diagnosis of multiple myeloma is based solely on whether one has a bone marrow plasma cell percentage that is > 10% and exhibits one of the CRAB criteria (hypercalcemia, renal insufficiency, anemia or bone destruction), and/or one of the new SLiM biomarker criteria (serum free light chain ratio > 100, > 1 focal lesions or > 60% bone marrow plasma cell percentage).
When I was first being diagnosed and had an M-spike level of 1.7 g/dL, there were a couple of weeks where my doctors thought I had symptomatic multiple myeloma by virtue of a suspicious finding on my skeletal survey that was thought to be a lytic lesion. Thankfully, a PET/CT later proved that it wasn't a lytic lesion. But I could very well have been diagnosed with symptomatic multiple myeloma with an M-spike of 1.7 g/dL.
So, the fact that one has an M-spike of 1.7 g/dL does not in itself indicate that there isn't an underlying malignancy that might be causing damage to one's body.
You can also be diagnosed with multiple myeloma with an M-spike that is less than 3.0 g/dL since a diagnosis of multiple myeloma is based solely on whether one has a bone marrow plasma cell percentage that is > 10% and exhibits one of the CRAB criteria (hypercalcemia, renal insufficiency, anemia or bone destruction), and/or one of the new SLiM biomarker criteria (serum free light chain ratio > 100, > 1 focal lesions or > 60% bone marrow plasma cell percentage).
When I was first being diagnosed and had an M-spike level of 1.7 g/dL, there were a couple of weeks where my doctors thought I had symptomatic multiple myeloma by virtue of a suspicious finding on my skeletal survey that was thought to be a lytic lesion. Thankfully, a PET/CT later proved that it wasn't a lytic lesion. But I could very well have been diagnosed with symptomatic multiple myeloma with an M-spike of 1.7 g/dL.
So, the fact that one has an M-spike of 1.7 g/dL does not in itself indicate that there isn't an underlying malignancy that might be causing damage to one's body.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis today, but should more tests be run?
Just wanted to post an update. My father saw a myeloma specialist a few days ago. While at the university hospital, he had further blood work done, the bone survey x-ray, and the bone marrow biopsy completed.
We are waiting for results on most of these tests now. The x-ray results came back and are slightly confusing to me. They said "4 millimeter lucent lesion in the right femoral neck and proximal femoral diaphysis, indeterminate. These foci could represent areas of osteopenia or alternatively lytic lesions."
I'm not really sure how to interpret those results, so any guidance would be appreciated? I am guessing the doctor will order a different test to investigate these lesions further. We have a call into him.
Thanks to everyone for the advice. We felt so much better in the hands of this doctor compared to the last one.
We are waiting for results on most of these tests now. The x-ray results came back and are slightly confusing to me. They said "4 millimeter lucent lesion in the right femoral neck and proximal femoral diaphysis, indeterminate. These foci could represent areas of osteopenia or alternatively lytic lesions."
I'm not really sure how to interpret those results, so any guidance would be appreciated? I am guessing the doctor will order a different test to investigate these lesions further. We have a call into him.
Thanks to everyone for the advice. We felt so much better in the hands of this doctor compared to the last one.
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Helen521 - Who do you know with myeloma?: father (Smoldering)
- When were you/they diagnosed?: Sept 2016
- Age at diagnosis: 65
Re: MGUS diagnosis today, but should more tests be run?
Hi Helen,
These ambiguous xray results sound very similar to my initial radiological exam results. After my initial xray, a multiple myeloma specialist I went to see then ordered a PET/CT, which provided clarity on the situation (turns out I didn't have any lytic lesions). Alternatively, the doctor could order a spinal MRI to help clear up the findings.
This is a really good article on the various imaging methods and tradeoffs used when diagnosing multiple myeloma related skeletal issues:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
Good luck.
These ambiguous xray results sound very similar to my initial radiological exam results. After my initial xray, a multiple myeloma specialist I went to see then ordered a PET/CT, which provided clarity on the situation (turns out I didn't have any lytic lesions). Alternatively, the doctor could order a spinal MRI to help clear up the findings.
This is a really good article on the various imaging methods and tradeoffs used when diagnosing multiple myeloma related skeletal issues:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
Good luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS diagnosis today, but should more tests be run?
Hello!
Some of my father's bone marrow biopsy results have started to come back in his patient portal. Specifically, the cytogenetics. His report reads:
BM Result Summary: Normal interpretation. No clonal abnormality was apparent.
Result: 46, XY[20]
Is this the test that would list the percent of plasma cells? Or would that be part of the FISH testing or something else entirely? I am not sure how to read those results.
Thanks!
Some of my father's bone marrow biopsy results have started to come back in his patient portal. Specifically, the cytogenetics. His report reads:
BM Result Summary: Normal interpretation. No clonal abnormality was apparent.
Result: 46, XY[20]
Is this the test that would list the percent of plasma cells? Or would that be part of the FISH testing or something else entirely? I am not sure how to read those results.
Thanks!
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Helen521 - Who do you know with myeloma?: father (Smoldering)
- When were you/they diagnosed?: Sept 2016
- Age at diagnosis: 65
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