Diagnosed MGUS, September 2014. Because of much back and hip pain and presence of psoriasis since 2013, was checked for psoriatic arthritis. Discovered MGUS.
M-Spike stays around 1.01 g/dL (10.1 g/L)
Gama Globulin High at 1.63
Kappa/Lambda ratio 11.09, diagnosed as IgG kappa MGUS.
All blood tests within normal range.
Had lumbar MRI for much back pain. MRI showed much osteoarthritis, osteoporosis, and cysts. Marked change since had spinal fusion in 2013 and hip replacement 2014. Before 2013, enjoyed excellent health, exercised regularly, toured Italy and England in 2012, and managed to keep up with 30 something grandchildren.
MRI found no lesions but did find "Diffuse patchy marrow signal."
As much pain continued, had biopsy and aspiration done. Here are the results.
Cellular bone marrow (40-50%) with mild plasmacytosis (10-20%).
Consistent with involvement by plasma cell dyscrasia. Diagnosis includes MGUS versus form of plasma cell myeloma, including smoldering myeloma. Bone marrow aspirate counted 9% plasma cell.
Still awaiting gene, chromosome profiling.
Questions:
1. Bones of spine degenerate with MGUS?
2. When and how to treat a 76 year old woman? Should I wait for CRAB symptoms?
Apologize for my ignorance. Still very new to this. Trying to learn and fortunately have doctor who answers questions and explains everything. He is waiting for final findings to discuss. but I would love to know how others my age have handled their illness, progression, medication, etc.
Forums
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Confusing bone marrow biopsy results
Hi Smarty,
Welcome to the forum!
Have you ever had a PET/CT scan, full body MRI, or full body skeletal survey (xray)? You may want to discuss whole-body imaging with your doctor since multiple myeloma related lesions can show up other than on one's spine.
One can definitely experience bone degeneration such as osteoporosis that is associated with MGUS and smoldering multiple myeloma.
If the osteoporosis is severe in an MGUS patient, then the International Myeloma Working Group (IMWG) recommends the use of bisphosphonates (BPs) such as Zometa or Aredia (these are not anti-myeloma drugs per se, but are instead bone strengthening drugs). See:
E Terpos et al., "International Myeloma Working Group Recommendations for the Treatment of Multiple Myeloma–Related Bone Disease," Journal of Clinical Oncology, June 2013 (full text of article)
Related Beacon news article: "Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, June 26, 2013
Excerpt from JCO article:
If you are ever classified as being symptomatic and/or require multiple myeloma treatment, there definitely are also multiple myeloma treatments that are tailored to somebody of your age. But a multiple myeloma specialist is best suited to make the call on when that treatment should begin.
Hope this helps ...
Welcome to the forum!
Have you ever had a PET/CT scan, full body MRI, or full body skeletal survey (xray)? You may want to discuss whole-body imaging with your doctor since multiple myeloma related lesions can show up other than on one's spine.
One can definitely experience bone degeneration such as osteoporosis that is associated with MGUS and smoldering multiple myeloma.
If the osteoporosis is severe in an MGUS patient, then the International Myeloma Working Group (IMWG) recommends the use of bisphosphonates (BPs) such as Zometa or Aredia (these are not anti-myeloma drugs per se, but are instead bone strengthening drugs). See:
E Terpos et al., "International Myeloma Working Group Recommendations for the Treatment of Multiple Myeloma–Related Bone Disease," Journal of Clinical Oncology, June 2013 (full text of article)
Related Beacon news article: "Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, June 26, 2013
Excerpt from JCO article:
BPs are recommended for the treatment of osteoporosis in MGUS in doses used for patients with osteoporosis (grade C). Dual-energy x-ray absorptiometry (DEXA) scan should be considered for patients with MGUS because of their reported increase in skeletal related events (SREs) compared with age-matched controls (grade B)".
If you are ever classified as being symptomatic and/or require multiple myeloma treatment, there definitely are also multiple myeloma treatments that are tailored to somebody of your age. But a multiple myeloma specialist is best suited to make the call on when that treatment should begin.
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: Confusing bone marrow biopsy results
Thanks for your welcome and info. I could not find much verification for the bone pain and degeneration when no lesions found. I have had whole body x-ray and lumbar spine MRI.
I will definitely look into bisphosphonates and more info on bone deterioration, as I hope to stay active as long as possible. I'm certainly learning that there is much to learn about multiple myeloma, so appreciate the Beacon and all of you.
Will let you know results of gene, chromosome tests. Thanks again. Smarty
I will definitely look into bisphosphonates and more info on bone deterioration, as I hope to stay active as long as possible. I'm certainly learning that there is much to learn about multiple myeloma, so appreciate the Beacon and all of you.
Will let you know results of gene, chromosome tests. Thanks again. Smarty
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Confusing bone marrow biopsy results
To give this a name, smoldering (asymptomatic) multiple myeloma would be appropriate. The bone marrow plasma cells are presumably kappa restricted. We use the core biopsy plasma cell percentage when determining the percentage of plasma cells in the bone marrow and presumably that is the 10-20% number.
The MRI criteria for multiple myeloma is a discrete lesion greater than 5 millimeter in size. The patchy bone marrow signal would not meet this criteria.
If you have osteoporosis detected by DEXA scan, bone strengthening medicine should be used to prevent fractures.
Hope this helps.
The MRI criteria for multiple myeloma is a discrete lesion greater than 5 millimeter in size. The patchy bone marrow signal would not meet this criteria.
If you have osteoporosis detected by DEXA scan, bone strengthening medicine should be used to prevent fractures.
Hope this helps.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Confusing bone marrow biopsy results
Thank you, doctor.
My readings have changed very little, indicating I have had smoldering multiple myeloma since September 2014. As mentioned, extreme bone deterioration last few years. I have not had full body MRI, only lumbar region since 2013. Lumbar region results show much deterioration since 2013. The results may be hindered because of 3, 4 and 5 fusion and left hip replacement. Both surgeries within 2 years.
My main concern is bone deterioration, as I have been very active, going to the gym, walking, etc.
Will the cytogenetic test results determine whether or not I should start bisphosphonate treatment or will that be up to my doctor and perhaps myself?
Also, my lumbar spine MRI showed osteoarthritis, lumbar spondylosis and canal decompression, foramen encroachment cysts and patchy marrow signal may be related to multiple myeloma. No cortical breaktrough or epidural scar or paraspinal soft tissue.
Should I have full body MRI?
Any help is very appreciated.
My readings have changed very little, indicating I have had smoldering multiple myeloma since September 2014. As mentioned, extreme bone deterioration last few years. I have not had full body MRI, only lumbar region since 2013. Lumbar region results show much deterioration since 2013. The results may be hindered because of 3, 4 and 5 fusion and left hip replacement. Both surgeries within 2 years.
My main concern is bone deterioration, as I have been very active, going to the gym, walking, etc.
Will the cytogenetic test results determine whether or not I should start bisphosphonate treatment or will that be up to my doctor and perhaps myself?
Also, my lumbar spine MRI showed osteoarthritis, lumbar spondylosis and canal decompression, foramen encroachment cysts and patchy marrow signal may be related to multiple myeloma. No cortical breaktrough or epidural scar or paraspinal soft tissue.
Should I have full body MRI?
Any help is very appreciated.
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Confusing bone marrow biopsy results
Thought I was smoldering but maybe MGUS. After about a year of light chain ratio of 10 - 11, my latest reading is kappa 38.6 (high), lambda 7 and light chain ratio 5.51. As I am no longer over 8, my diagnosis is not early myeloma. Not yet received M-spike. 3 months ago it was 0.98 g/dL.
My bone scan 3 months ago shown diffuse pattern and 20 - 30 % plasma cells. Does this mean I am improving without any medication? Or is this a fluke?
Appreciate if any understands this better than I do.
Marti
My bone scan 3 months ago shown diffuse pattern and 20 - 30 % plasma cells. Does this mean I am improving without any medication? Or is this a fluke?
Appreciate if any understands this better than I do.
Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Confusing bone marrow biopsy results
Hi Smarty - Your diagnosis is still smoldering myeloma because your plasma cell percentage is over 10 percent, which is what Dr. Valent mentioned. When the plasma cell percentage in your bone marrow is over 10 percent, then you have smoldering myeloma, regardless of how high your M-spike or free light chain ratio is.
Free light chain ratios and M-spikes can vary a bit in smoldering patients. Just as an example, see the lab results Multibilly, who has smoldering myeloma, has posted here:
https://myelomabeacon.org/forum/post31839.html#p31839
Good luck!
Free light chain ratios and M-spikes can vary a bit in smoldering patients. Just as an example, see the lab results Multibilly, who has smoldering myeloma, has posted here:
https://myelomabeacon.org/forum/post31839.html#p31839
Good luck!
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Jonah
Re: Confusing bone marrow biopsy results
Thank you, Jonah. Seeing Multibilly's charts was enlightening. I meant to say my plasma cell reading was 10 to 20 %. For some reason, my doctor calls my condition between MGUS and multiple myeloma. No matter, I feel fine and try to eat good diet and exercise as you all do.
Best to all, Marti
Best to all, Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Confusing bone marrow biopsy results
Hi "SMarty"
I've found it odd that at first I was told once switching to a major cancer center last year that I was diagnosed with smoldering myeloma, but yet now my primary myeloma specialist refers to my case at times as MGUS, though my IgG kappa M spike has doubled in the past year since my last bone marrow biopsy, which indicated 10% plasma cell count with 91% of all plasma cells in marrow as aberrant, consistent with a plasma cell neoplasm.
Besides the 2x rise in M spike since the bone marrow biopsy last year, I've developed immunoparesis (IgM continues to drop into mid 20's, effective "healthy" IgG is near 400).
I'm guessing that at times they refer to my case as MGUS instead of smoldering myeloma because it is not an a high risk type of smoldering myeloma.
I guess the mixed signals / complicated diagnosis process is what brings so many folks to this forum.
It's certainly not as clear cut as my wife's leukemia, which is definitely an "active" but controllable (at this time) blood cancer. Barely in our 40's, we've suddenly had our fair share of medical appointments, tests, bone marrow biopsies (nearly 10 together), and active chemo treatment for her.
My bone marrow diagnosis from 2014 (which seemed to meet smoldering myeloma criteria):
Bone marrow (right), core and clot specimen; touch imprint and aspirate smears:
Immunohistochemistry shows that plasma cells represent ~10% of marrow cells.
Aberrant plasma cells detected, 91% of total plasma cells, consistent with plasma cell neoplasm. Aberrant plasma cells CD38+, CD138+, CD19(partial), CD20(+), CD28(-), CD56(-), CD117(+), cyto-Kappa(+), cyto-Lambda(-).
Please correlate with flow cytometric analysis for further evaluation of disease.
Addendum BMB diagnosis :
The percentage of plasma cells is reassessed in clot specimen.
CD138 positive cells (plasma cells) represent 10% of marrow cells by immunohistochemistry on clot specimen.
I've found it odd that at first I was told once switching to a major cancer center last year that I was diagnosed with smoldering myeloma, but yet now my primary myeloma specialist refers to my case at times as MGUS, though my IgG kappa M spike has doubled in the past year since my last bone marrow biopsy, which indicated 10% plasma cell count with 91% of all plasma cells in marrow as aberrant, consistent with a plasma cell neoplasm.
Besides the 2x rise in M spike since the bone marrow biopsy last year, I've developed immunoparesis (IgM continues to drop into mid 20's, effective "healthy" IgG is near 400).
I'm guessing that at times they refer to my case as MGUS instead of smoldering myeloma because it is not an a high risk type of smoldering myeloma.
I guess the mixed signals / complicated diagnosis process is what brings so many folks to this forum.
It's certainly not as clear cut as my wife's leukemia, which is definitely an "active" but controllable (at this time) blood cancer. Barely in our 40's, we've suddenly had our fair share of medical appointments, tests, bone marrow biopsies (nearly 10 together), and active chemo treatment for her.
My bone marrow diagnosis from 2014 (which seemed to meet smoldering myeloma criteria):
Bone marrow (right), core and clot specimen; touch imprint and aspirate smears:
Immunohistochemistry shows that plasma cells represent ~10% of marrow cells.
Aberrant plasma cells detected, 91% of total plasma cells, consistent with plasma cell neoplasm. Aberrant plasma cells CD38+, CD138+, CD19(partial), CD20(+), CD28(-), CD56(-), CD117(+), cyto-Kappa(+), cyto-Lambda(-).
Please correlate with flow cytometric analysis for further evaluation of disease.
Addendum BMB diagnosis :
The percentage of plasma cells is reassessed in clot specimen.
CD138 positive cells (plasma cells) represent 10% of marrow cells by immunohistochemistry on clot specimen.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
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