I have MGUS and am 49 years old. I am on the border of smoldering multiple myeloma, with an M-spike of 2.2 and 10% plasma cells in my bone marrow. When I was diagnosed, I had a PET scan that showed no lesions. My FLC ratio has increased to 9.23, a 40% increase in the last 3 months.
My bones have been aching and recently my ankle started to hurt so bad I that I couldn't walk. I called my multiple myeloma specialist who told me that MGUS has no symptoms and that it would not cause my ankle pain.
My primary care physician told me to see my rheumatologist. She had x-rays done that showed no problems, but a month later, and because I was still in pain, she did an ultrasound and sent me for more x-rays. Nothing showed up again, but my leg was hot and swollen, so she sent me for an MRI. The MRI was positive for a stress fracture. She sent me the report and it said I had an 8 cm stress fracture in my lower tibia.
My doctor told me that my multiple myeloma specialist should be told about this and she referred me to an orthopedic surgeon. I will see her Monday for evaluation.
When I called my multiple myeloma specialist, he said that the fracture had nothing to do with my MGUS.
So my question is this:
If MGUS affects your bones and can weaken them, then how can this not be related? I do not run or exercise much. I am not overweight and eat healthy. I haven't done much of anything that would cause a stress fracture. How is a stress fracture different than a lesion?
I think 8 cm is pretty big, so how do we know that my bone was not weakened in some way that caused my bone to fracture?
Forums
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8oclockcoffee - Name: Brenda
- Who do you know with myeloma?: Myself, Father, Aunt, and Grandfather
- When were you/they diagnosed?: 08-2013
- Age at diagnosis: 47
Re: Tibia fracture - how is it different than a bone lesion?
Brenda,
A myeloma-related lesion is caused by a couple of different processes related to the disease that interferes with the normal bone formation and bone re-generation. The resulting lesion is localized in a given spot or spots on the bone.
But MGUS can also weaken and increase the overall porosity of bones, thereby making one more susceptible to bone fractures. This can occur without lesions being present.
Have you ever had a DEXA scan to see if you have osteoporosis? An xray or MRI won't reveal if you have osteoporosis. I am smoldering and I get a DEXA scan every year or so. They are quick and easy and don't involve too much radiation.
Note that if you have significant osteoporosis due to the MGUS, that potentially technically qualifies as being a symptomatic CRAB event for multiple myeloma. So, it's something to keep an eye on.
Hope this helps.
A myeloma-related lesion is caused by a couple of different processes related to the disease that interferes with the normal bone formation and bone re-generation. The resulting lesion is localized in a given spot or spots on the bone.
But MGUS can also weaken and increase the overall porosity of bones, thereby making one more susceptible to bone fractures. This can occur without lesions being present.
Have you ever had a DEXA scan to see if you have osteoporosis? An xray or MRI won't reveal if you have osteoporosis. I am smoldering and I get a DEXA scan every year or so. They are quick and easy and don't involve too much radiation.
Note that if you have significant osteoporosis due to the MGUS, that potentially technically qualifies as being a symptomatic CRAB event for multiple myeloma. So, it's something to keep an eye on.
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: Tibia fracture - how is it different than a bone lesion?
Multibilly,
Yes, I recently has a DEXA scan. The results are below:
Osteopenia - low bone mass, Z-score -1.2 Note: "If patient has a fracture that occurred with trauma equivalent to a fall from a standing position or less, then the diagnosis is osteoporosis."
Here are the results of my MRI:
There is a long segment of pretibial and periosteal edema deep to the MR sensitive marker at the anterolateral distal tibial shaft with focal periostitis and a longitudinal fracture cleft measuring approximately 8 cm in length (extending from 2 cm to 10 cm above the ankle joint line) with associated bone marrow edema compatible with a longitudinal stress fracture. The surrounding muscles and remaining soft tissues are normal.
My rheumatologist sent me to an orthopedic surgeon. She said that this is not a typical fracture and is considering a biopsy.
My multiple myeloma specialist is insisting this has nothing to do with MGUS.
I am so confused and want to feel better.
Would you have a biopsy of your fracture if this was the case?
Yes, I recently has a DEXA scan. The results are below:
Osteopenia - low bone mass, Z-score -1.2 Note: "If patient has a fracture that occurred with trauma equivalent to a fall from a standing position or less, then the diagnosis is osteoporosis."
Here are the results of my MRI:
There is a long segment of pretibial and periosteal edema deep to the MR sensitive marker at the anterolateral distal tibial shaft with focal periostitis and a longitudinal fracture cleft measuring approximately 8 cm in length (extending from 2 cm to 10 cm above the ankle joint line) with associated bone marrow edema compatible with a longitudinal stress fracture. The surrounding muscles and remaining soft tissues are normal.
My rheumatologist sent me to an orthopedic surgeon. She said that this is not a typical fracture and is considering a biopsy.
My multiple myeloma specialist is insisting this has nothing to do with MGUS.
I am so confused and want to feel better.
Would you have a biopsy of your fracture if this was the case?
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8oclockcoffee - Name: Brenda
- Who do you know with myeloma?: Myself, Father, Aunt, and Grandfather
- When were you/they diagnosed?: 08-2013
- Age at diagnosis: 47
Re: Tibia fracture - how is it different than a bone lesion?
Hi Brenda,
I'm really out of my depth making any sort of recommendation on how to proceed in this situation. Perhaps somebody more qualified on this particular subject could comment.
I'm really out of my depth making any sort of recommendation on how to proceed in this situation. Perhaps somebody more qualified on this particular subject could comment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tibia fracture - how is it different than a bone lesion?
Hi Multibilly,
In your post you mentioned,
"MGUS can also weaken and increase the overall porosity of bones and could make them more susceptible to fractures."
Is there a difference in the type of osteopenia or osteoporosis between monoclonal disorders vs other forms of bone loss? Is one type worse?
Also, does MGUS cause more bone loss?
In your post you mentioned,
"MGUS can also weaken and increase the overall porosity of bones and could make them more susceptible to fractures."
Is there a difference in the type of osteopenia or osteoporosis between monoclonal disorders vs other forms of bone loss? Is one type worse?
Also, does MGUS cause more bone loss?
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Dianem
Re: Fracture in tibia - how is it different than a bone lesi
Hi Dianem,
Sorry, but I'm not qualified to answer your questions, so somebody more qualified would need to comment. But I can point you to a couple of articles on the issues of bone weakening with MGUS.
E Terpos and MA Dimopoulos, "Less strength and more fractures for MGUS bones," Blood, Jan 30, 2014 (full text)
JN Farr et al, "Altered cortical microarchitecture in patients with monoclonal gammopathy of undetermined significance," Blood, Jan 30, 2014 (full text)
Sorry, but I'm not qualified to answer your questions, so somebody more qualified would need to comment. But I can point you to a couple of articles on the issues of bone weakening with MGUS.
E Terpos and MA Dimopoulos, "Less strength and more fractures for MGUS bones," Blood, Jan 30, 2014 (full text)
JN Farr et al, "Altered cortical microarchitecture in patients with monoclonal gammopathy of undetermined significance," Blood, Jan 30, 2014 (full text)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tibia fracture - how is it different than a bone lesion?
Thanks Multibilly - I have learned so much from you about MGUS.
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Dianem
Re: Tibia fracture - how is it different than a bone lesion?
It is known that MGUS patients have a higher risk of fractures (perhaps two-fold) than the general population, often associated with osteopenia or osteoporosis. This is different than typical age-related osteopenia/osteoporosis, and may reflect greater bone resorption and decreased bone production in MGUS patients.
I would usually start a bisphosphonate in this scenario, such as yearly zoledronic acid (Zometa) or equivalent, and this can be discussed with your myeloma specialist and/or rheumatologist.
I wouldn't consider this active myeloma that requires treatment, though if there is progressive osteoporosis and/or recurrent fractures despite adequate bisphosphonate treatment, then this could be considered down the road, even in the absence of classic "lytic" myeloma bone lesions.
I would usually start a bisphosphonate in this scenario, such as yearly zoledronic acid (Zometa) or equivalent, and this can be discussed with your myeloma specialist and/or rheumatologist.
I wouldn't consider this active myeloma that requires treatment, though if there is progressive osteoporosis and/or recurrent fractures despite adequate bisphosphonate treatment, then this could be considered down the road, even in the absence of classic "lytic" myeloma bone lesions.
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Dr. Adam Cohen - Name: Adam D. Cohen, M.D.
Beacon Medical Advisor
Re: Tibia fracture - how is it different than a bone lesion?
Dr. Cohen,
Thank you so much for your reply. It means a lot when doctors take the time to reply!
Brenda
Thank you so much for your reply. It means a lot when doctors take the time to reply!
Brenda
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8oclockcoffee - Name: Brenda
- Who do you know with myeloma?: Myself, Father, Aunt, and Grandfather
- When were you/they diagnosed?: 08-2013
- Age at diagnosis: 47
Re: Tibia fracture - how is it different than a bone lesion?
Brenda,
Did you ever get any feedback on arranging a BMB? Or a new DEXA scan? I think you mentioned in a previous post that you were going to see one of your doctors last Monday?
Just wondering how things are turning out for you ...
Toni
Did you ever get any feedback on arranging a BMB? Or a new DEXA scan? I think you mentioned in a previous post that you were going to see one of your doctors last Monday?
Just wondering how things are turning out for you ...
Toni
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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