Hi all.
My recent blood work shows that my M-protein number is greater than 1. My doctor suspects that I have MGUS. I have already completed the full body x-ray and the 24-hour urine test and am awaiting the results. I am scheduled for a bone marrow aspiration this week.
I am just beginning my research into this disease, but most of the information I have been seeing indicates that a bone marrow biopsy is what is needed in order to confirm a diagnosis. I hate to question the doctor at this early stage, but would you request a biopsy?
Since I made the mistake of looking at a bone marrow biopsy / aspiration procedure on Youtube and will definitely be getting a sedative, I don't want to go through again if at all possible.
(I'll introduce myself in the Member Introduction section with more details later.)
Thanks for your response.
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Re: Should I get a bone marrow biopsy / aspiration?
Hi there
It would help if you could share with us the unit of measure for your M-protein, as well as let us know if an FLC (free light chains) test was done. I also assume your CRAB presentation was ok (ie. normal calcium levels, no unexplained anemia, normal creatinine levels, no bones lesion)?
My case involved a low M-protein level (hard to quantify, as it is an IgA protein) with a slightly elevated kappa free light chain level (kappa-lambda FLC ratio of 5). The myeloma specialist we met did not feel strongly about a bone marrow biopsy, preferring to do another blood test over a 3-month period and, based on the recent results, extended it to 6 months, as neither the protein level or the FLC ratio changed (ratio was 5.4 this time around).
His perspective was that a biopsy is a procedure, after all, and in cases where the M-protein and FLC levels are stable, and the clinical presentation is good (i.e., feel great, no infections, unexplained fatigue, ...), monitoring with blood tests was good enough.
I hope this helps.
Ced
It would help if you could share with us the unit of measure for your M-protein, as well as let us know if an FLC (free light chains) test was done. I also assume your CRAB presentation was ok (ie. normal calcium levels, no unexplained anemia, normal creatinine levels, no bones lesion)?
My case involved a low M-protein level (hard to quantify, as it is an IgA protein) with a slightly elevated kappa free light chain level (kappa-lambda FLC ratio of 5). The myeloma specialist we met did not feel strongly about a bone marrow biopsy, preferring to do another blood test over a 3-month period and, based on the recent results, extended it to 6 months, as neither the protein level or the FLC ratio changed (ratio was 5.4 this time around).
His perspective was that a biopsy is a procedure, after all, and in cases where the M-protein and FLC levels are stable, and the clinical presentation is good (i.e., feel great, no infections, unexplained fatigue, ...), monitoring with blood tests was good enough.
I hope this helps.
Ced
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Cedb
Re: Should I get a bone marrow biopsy / aspiration?
Hey slim,
I was diagnosed with MGUS ten years ago. Part of the diagnosis was a bone marrow biopsy. It was not a big deal. If you are asking questions of lay people, instead of your oncologist / haematologist, you might consider finding a doc who will answer your questions in a way that instills confidence.
I recently had a fresh body x-ray and electrophoresis. I see my oncologist once a year, but have urinalysis every six months.
I recently read that monoclonal antibodies of the kind I deal with bind aggressively to beta amyloid, so no Alzheimers for me! Silver lining, et cetera ...
I was diagnosed with MGUS ten years ago. Part of the diagnosis was a bone marrow biopsy. It was not a big deal. If you are asking questions of lay people, instead of your oncologist / haematologist, you might consider finding a doc who will answer your questions in a way that instills confidence.
I recently had a fresh body x-ray and electrophoresis. I see my oncologist once a year, but have urinalysis every six months.
I recently read that monoclonal antibodies of the kind I deal with bind aggressively to beta amyloid, so no Alzheimers for me! Silver lining, et cetera ...
Re: Should I get a bone marrow biopsy / aspiration?
Thanks for both of your replies. My subject should have been: Shouldn't I get a biopsy?
My thought was that since a hole was already going to be punched in my rear end, why not go ahead and do a full biopsy at this time? Doesn't this make sense?
Cebd:
The Serum Protein lists the following:
M COMP 1 (g/dl) 1.37
M COMP 2 (g/dl) 0.20
INTERPRETATION:
M components present identified by immunofixation as subtypes of IgA Kappa (Beta 1 and Beta 2 regions). IgG Kappa is co migrating in the Beta 2 region. M components are co migrating in the Beta 1 and Beta 2 regions, therefore peak quantifications are only an approximation. Recommend serum immunoglobulin quantification by nephelometry. Recommend 24 hour urine collection for protein electrophoresis.
Calcium and hemoglobin levels are within normal range. X-ray results outstanding. Creatinine is 0.94 on a scale of 0.51-0.95 mg/dl.
Willfraser::
"If you are asking questions of lay people, instead of your oncologist / haematologist, you might consider finding a doc who will answer your questions in a way that instills confidence."
This was identified during my annual visit with my breast cancer oncologist. Yep, this will be my second rodeo. She is extremely knowledgeable about breast cancer. Since all of the tests have not been completed and MGUS not yet confirmed, I'm not ready to make the determination that a specialist is needed just yet. She answered my initial 16 questions thoroughly.
"... kind I deal with bind aggressively to beta amyloid, so no Alzheimers for me!" What kind are these?
My thought was that since a hole was already going to be punched in my rear end, why not go ahead and do a full biopsy at this time? Doesn't this make sense?
Cebd:
The Serum Protein lists the following:
M COMP 1 (g/dl) 1.37
M COMP 2 (g/dl) 0.20
INTERPRETATION:
M components present identified by immunofixation as subtypes of IgA Kappa (Beta 1 and Beta 2 regions). IgG Kappa is co migrating in the Beta 2 region. M components are co migrating in the Beta 1 and Beta 2 regions, therefore peak quantifications are only an approximation. Recommend serum immunoglobulin quantification by nephelometry. Recommend 24 hour urine collection for protein electrophoresis.
Calcium and hemoglobin levels are within normal range. X-ray results outstanding. Creatinine is 0.94 on a scale of 0.51-0.95 mg/dl.
Willfraser::
"If you are asking questions of lay people, instead of your oncologist / haematologist, you might consider finding a doc who will answer your questions in a way that instills confidence."
This was identified during my annual visit with my breast cancer oncologist. Yep, this will be my second rodeo. She is extremely knowledgeable about breast cancer. Since all of the tests have not been completed and MGUS not yet confirmed, I'm not ready to make the determination that a specialist is needed just yet. She answered my initial 16 questions thoroughly.
"... kind I deal with bind aggressively to beta amyloid, so no Alzheimers for me!" What kind are these?
Re: Should I get a bone marrow biopsy / aspiration?
Hi Moe,
A bone marrow biopsy is an invasive procedure, as such it's better to only have it if it's necessary.
I think the first question to ask your doctors is: 'Will the results of a bone marrow biopsy make any difference to my treatment?'
If the answer is no, then don't have the biopsy. If the answer is yes then then ask: 'What difference to my treatment might the biopsy results make?'
If the answer is very little, then don't have the biopsy.
It's good to know that having a biopsy wasn't a big deal for Will.
My experience was different. It was pretty bad. It was really bad.
You might be better off not knowing.
If you don't want the details, stop reading now.
I had a biopsy from the sternum, I suggested that I'd heard it was less traumatic to take the sample from one of the the iliac crests on the pelvis but the doctor assured me that the sternum was a better option. He arrived with an assistant, I asked why there was an assistant and he said it was for training purposes – fibber! I asked if the procedure was painful and he said 'It might sting a bit' – big fat fibber!
I had a local anesthetic for the incision in the skin. He then used a small chisel to chip a couple of slivers of bone from the sternum - the local anesthetic meant that the skin incision did not hurt much but the bone chipping was very painful.
I've lived a pretty wild life - I've broken my leg (tibia), various fingers and ribs and had several wounds that required stitches. I've also been stung by scorpions, poisoned (acccidentally!), had burns, major electrocutions and, despite being told I have a high pain threshold, have twice needed morphine for extended periods in my adventures with myeloma.
But I've never experienced pain like the aspiration of bone marrow. It turns out that the 'observer' was there to pin my legs down as I convulsed uncontrollably with pain.
So that's how it was for me. Hopefully it was just due to unskilled personnel or outdated procedures. I would definitely go for the sedative!
Hoping your experience goes better than mine
Best wishes,
Mijji
A bone marrow biopsy is an invasive procedure, as such it's better to only have it if it's necessary.
I think the first question to ask your doctors is: 'Will the results of a bone marrow biopsy make any difference to my treatment?'
If the answer is no, then don't have the biopsy. If the answer is yes then then ask: 'What difference to my treatment might the biopsy results make?'
If the answer is very little, then don't have the biopsy.
It's good to know that having a biopsy wasn't a big deal for Will.
My experience was different. It was pretty bad. It was really bad.
You might be better off not knowing.
If you don't want the details, stop reading now.
I had a biopsy from the sternum, I suggested that I'd heard it was less traumatic to take the sample from one of the the iliac crests on the pelvis but the doctor assured me that the sternum was a better option. He arrived with an assistant, I asked why there was an assistant and he said it was for training purposes – fibber! I asked if the procedure was painful and he said 'It might sting a bit' – big fat fibber!
I had a local anesthetic for the incision in the skin. He then used a small chisel to chip a couple of slivers of bone from the sternum - the local anesthetic meant that the skin incision did not hurt much but the bone chipping was very painful.
I've lived a pretty wild life - I've broken my leg (tibia), various fingers and ribs and had several wounds that required stitches. I've also been stung by scorpions, poisoned (acccidentally!), had burns, major electrocutions and, despite being told I have a high pain threshold, have twice needed morphine for extended periods in my adventures with myeloma.
But I've never experienced pain like the aspiration of bone marrow. It turns out that the 'observer' was there to pin my legs down as I convulsed uncontrollably with pain.
So that's how it was for me. Hopefully it was just due to unskilled personnel or outdated procedures. I would definitely go for the sedative!
Hoping your experience goes better than mine
Best wishes,
Mijji
-
Mijji - When were you/they diagnosed?: 2011
Re: Should I get a bone marrow biopsy / aspiration?
Well, it was a full biopsy. I got through it, but If I ever have another one, I will be asking for a sedative. The Ativan did nothing. Very painful. And Mijji, you're right on all counts. The nurse standing over me and rubbing my arm should have been a hint of what was to come.
6 posts
• Page 1 of 1