Good Morning:
I am so confused! I was diagnosed with MGUS in late April 2016 and had a lovely oncologist / hematologist that left no stone unturned. I am IgG kappa, M-spike of 0.5 g/dL (5 g/L) and 6% plasma cells in the bone marrow. All my other numbers are normal, including the free light chain ratio, although I was borderline anemic and thought that might be more related to the fact I was a blood donor (every 56 days like clockwork).
I also have very bad osteoporosis in my femoral necks on both hips and my spine, and osteopenia as well as "lucency" on the back of my skull and in the long bones of both arms. I have had a compression fracture to my left elbow when I fell at the dog park. I had one infusion of Reclast (zoledronic acid).
I have since relocated and am seeing a new oncologist who is an multiple myeloma specialist in Seattle. He wants to start me on Zometa (zoledronic acid) infusions every 3 months for a year. Of course, I worry about the risk of osteonecrosis of the jaw (ONJ), but think it is probably minimal.
Here's the confusion: When does the type of bone involvement I have become the "B" in CRAB?
Also, I have had rib pain on and off for years. It radiates almost as if it is moving across my ribs, sometimes so bad I can't sleep. I have also had the same sensation on my pelvic and pubic bones. When asked about it, my GP asked if I did Pilates and then told me that core body pain is normal, but he had nothing else to offer. The first oncologist said there was nothing on my skeletal survey to indicate rib pain. The myeloma specialist's PA told me the rib pain was probably related to my osteoporosis, I thought osteoporosis was painless until fracture occurred. My new GP said that my osteoporosis is NOT related to the MGUS in any way, which is contrary to what my other doctors have said.
Can someone help to clarify and maybe offer some reason for the pain in my ribs? It is worrisome to me, not to mention highly uncomfortable, and I am just not getting any clear guidance on this issue!
Still blessed to be at MGUS only and not progressed to multiple myeloma. Thank you for your help.
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Re: MGUS and bone involvement
Hello wbayman1959,
I previously had MGUS with similar bone imaging findings as yours – osteopenia, lucencies of the long bones, focal lesions of the skull – and even though I have graduated to smoldering multiple myeloma, these findings are not considered qualifies for the "B" in CRAB. I believe it has to be lytic lesions or bone plasmacytomas.
J
I previously had MGUS with similar bone imaging findings as yours – osteopenia, lucencies of the long bones, focal lesions of the skull – and even though I have graduated to smoldering multiple myeloma, these findings are not considered qualifies for the "B" in CRAB. I believe it has to be lytic lesions or bone plasmacytomas.
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: MGUS and bone involvement
Hi Wendy,
Your diagnosis of MGUS seems a bit understated to me. I would think that the 'B' in the CRAB criteria was quite obvious.
I had a similar situation at diagnosis, with 'lucent lesions', a diagnosis of osteopenia, rib pain, and then unfortunately, compression fractures of the spine. I was also taking Pilates classes, but misinterpreted my aches and pains as being due to gardening or something like arthritis creeping in. It wasn't until I had a scan for bone density that the osteopenia problem was found, as part of a routine medical check up, and until a few months later, with an X-ray skeletal survey and also blood tests and a bone marrow biopsy, that the myeloma Stage 3 was diagnosed.
So, I don't want to scare you, but hopefully you will get to what stage of myeloma that you are in now, if any beyond MGUS. Having treatments with the bisphosphonate, Aredia (pamidronate) also strengthened my bones again! Aredia is a drug that is a another option from Zometa.
Good luck!
Your diagnosis of MGUS seems a bit understated to me. I would think that the 'B' in the CRAB criteria was quite obvious.
I had a similar situation at diagnosis, with 'lucent lesions', a diagnosis of osteopenia, rib pain, and then unfortunately, compression fractures of the spine. I was also taking Pilates classes, but misinterpreted my aches and pains as being due to gardening or something like arthritis creeping in. It wasn't until I had a scan for bone density that the osteopenia problem was found, as part of a routine medical check up, and until a few months later, with an X-ray skeletal survey and also blood tests and a bone marrow biopsy, that the myeloma Stage 3 was diagnosed.
So, I don't want to scare you, but hopefully you will get to what stage of myeloma that you are in now, if any beyond MGUS. Having treatments with the bisphosphonate, Aredia (pamidronate) also strengthened my bones again! Aredia is a drug that is a another option from Zometa.
Good luck!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: MGUS and bone involvement
Welcome to the forum, Wendy.
The question you bring up is a natural one. Here's a forum discussion on the subject with lots of feedback and insights that I think you'll find helpful:
"When are bone loss diseases considered a symptom of myeloma?" (started Sep 18, 2014)
Good luck!
The question you bring up is a natural one. Here's a forum discussion on the subject with lots of feedback and insights that I think you'll find helpful:
"When are bone loss diseases considered a symptom of myeloma?" (started Sep 18, 2014)
Good luck!
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JimNY
Re: MGUS and bone involvement
Thank you all for your input. It was all very helpful in one way or another!
I can't help but being a little anxious. I don't have an appointment with the specialist until September.
To those of you that have experienced the rib pain, when and how did it resolve? At this point, I can't really seem to convince anyone that it is a concern, let alone painful, and I am trying to figure out how to deal with it. It does seem that rib pain occurs at times, as presenting with multiple myeloma, yet my lab numbers do not meet that diagnosis. Is it possible to have such pain with MGUS only?
Thank you all again
I can't help but being a little anxious. I don't have an appointment with the specialist until September.
To those of you that have experienced the rib pain, when and how did it resolve? At this point, I can't really seem to convince anyone that it is a concern, let alone painful, and I am trying to figure out how to deal with it. It does seem that rib pain occurs at times, as presenting with multiple myeloma, yet my lab numbers do not meet that diagnosis. Is it possible to have such pain with MGUS only?
Thank you all again
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wbayman1959 - Name: WendyB
Re: MGUS and bone involvement
Hi again Wendy,
My rib pain must have resolved after my initial treatment, which put me into a very good partial remission. I think that was a few weeks into my induction treatment. If you squeezed around the ribs, you could feel if the pain was still there. Maybe the bisphosphonate treatments also helped to heal the ribs.
I never was diagnosed with MGUS, or even smoldering myeloma, so I couldn't say anything about those conditions, but I had aching ribs for at least a few months before the diagnosis.
Hope that helps!
My rib pain must have resolved after my initial treatment, which put me into a very good partial remission. I think that was a few weeks into my induction treatment. If you squeezed around the ribs, you could feel if the pain was still there. Maybe the bisphosphonate treatments also helped to heal the ribs.
I never was diagnosed with MGUS, or even smoldering myeloma, so I couldn't say anything about those conditions, but I had aching ribs for at least a few months before the diagnosis.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
6 posts
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