I have been monitored for MGUS for seven years. Abnormal FLC (recent jump from 7 to 13), immunosuppression of uninvolved immunoglobulins.
Recently, an MRI for something else found a bone lesion in my sacrum. Recent DEXA also shows osteopenia. Local onc did a bone marrow biopsy (BMB) and says I have myeloma, even though only 5% plasma cells. Majority of clonal cells show chromosome 13 deletion and 11 trisomy. I realize there are a number of negative factors for someone with MGUS, but can a myeloma diagnosis be made with only 5% plasma cells on BMB?
I live in a small town and the onc I saw is generalist who sees all sorts of cancers. I have an appointment and will travel to the myeloma clinic at Seattle Cancer Care Alliance for a second opinion in a couple of weeks.
I'm just wondering, in the meanwhile, do any of you have a myeloma diagnosis with a low percentage of plasma cells on BMB?
Thank you.
Oh, and I guess I should say this is my first time posting. I am 55 years old and diagnosed two weeks ago. I was glad to find this forum.
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pamallyn - Name: Pam Allyn
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 56
Re: Myeloma diagnosis with only 5% plasma cells?
Hi Pamallyn,
Welcome to our community. I hope you'll become one of our MGUS regulars
Your local oncologist may be more up on things myeloma-related than you realize, although that doesn't mean that he/she is correct in making a diagnosis of multiple myeloma in your case.
As you probably have heard, there are new criteria for the diagnosis of multiple myeloma that were published a few months ago. You can read about them here:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
If you read these criteria carefully, you'll notice that there is no bone marrow plasma cell percentage requirement for a multiple myeloma diagnosis. This is one of the changes between the new criteria and the old diagnostic criteria, which, among other things, required at least 10% plasma cells at diagnosis for a multiple myeloma diagnosis.
None of this means, however, that you have multiple myeloma.
First of all, as you'll see in the comments to the article I mentioned above, the new criteria are really meant to be applied to patients who have been newly diagnosed with myeloma or a myeloma-related condition such as MGUS. In your case, you've been in an MGUS state for 7 years, so the the new criteria really should be applied with care.
Second, from what you've written, it seems that the only symptoms of myeloma that you have so far a single bone lesion. If you don't have anemia, kidney damage, or elevated calcium levels in your blood, this could mean that you have a solitary bone plasmacytoma, rather than multiple myeloma.
So I'm not sure a diagnosis of multiple myeloma is actually warranted in your case.
What has been happening with your M-spike, serum free light chain levels, and serum free light chain ratio in the past year or two? Also, do you have any signs of anemia or kidney damage?
In any case, you are doing exactly the right thing by scheduling an appointment with a myeloma specialist. Be sure to bring with you to that appointment a well organized summary of your key lab values and imaging results from the past several years, and also prepare a list of questions you want to ask. If you can, bring someone else with you to the appointment, or ask to record it on your cell phone or some other way.
Hope this helps. Let us know if you have any other questions.
Good luck!
Welcome to our community. I hope you'll become one of our MGUS regulars
Your local oncologist may be more up on things myeloma-related than you realize, although that doesn't mean that he/she is correct in making a diagnosis of multiple myeloma in your case.
As you probably have heard, there are new criteria for the diagnosis of multiple myeloma that were published a few months ago. You can read about them here:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
If you read these criteria carefully, you'll notice that there is no bone marrow plasma cell percentage requirement for a multiple myeloma diagnosis. This is one of the changes between the new criteria and the old diagnostic criteria, which, among other things, required at least 10% plasma cells at diagnosis for a multiple myeloma diagnosis.
None of this means, however, that you have multiple myeloma.
First of all, as you'll see in the comments to the article I mentioned above, the new criteria are really meant to be applied to patients who have been newly diagnosed with myeloma or a myeloma-related condition such as MGUS. In your case, you've been in an MGUS state for 7 years, so the the new criteria really should be applied with care.
Second, from what you've written, it seems that the only symptoms of myeloma that you have so far a single bone lesion. If you don't have anemia, kidney damage, or elevated calcium levels in your blood, this could mean that you have a solitary bone plasmacytoma, rather than multiple myeloma.
So I'm not sure a diagnosis of multiple myeloma is actually warranted in your case.
What has been happening with your M-spike, serum free light chain levels, and serum free light chain ratio in the past year or two? Also, do you have any signs of anemia or kidney damage?
In any case, you are doing exactly the right thing by scheduling an appointment with a myeloma specialist. Be sure to bring with you to that appointment a well organized summary of your key lab values and imaging results from the past several years, and also prepare a list of questions you want to ask. If you can, bring someone else with you to the appointment, or ask to record it on your cell phone or some other way.
Hope this helps. Let us know if you have any other questions.
Good luck!
Re: Myeloma diagnosis with only 5% plasma cells?
Hello again Pamallyn,
Just wanted to follow up quickly on my posting from this morning.
When I wrote that, in the new diagnostic guidelines for multiple myeloma, "there is no bone marrow plasma cell percentage requirement," I was partly right, partly correct.
I checked into it a bit more and, as I suspected when I made my posting this morning, there has been a change in this requirement from the old diagnostic criteria to the new. It is now possible to be diagnosed with multiple myeloma, under the new criteria, without having more than 10 percent plasma cells on a standard bone marrow biopsy.
However, for a multiple myeloma diagnosis to be made in that case, there would have to be a biopsy of a bone lesion or tumor outside the bone that demonstrates that the lesion or tumor is a plasmacytoma (myeloma tumor).
The rest of what I wrote is still valid. Unless you have one of the "CRA" of the "CRAB" criteria, or one of the three "myeloma defining events" described in the new criteria, then you could just have a solitary bone plasmacytoma.
Sorry if this has added to your confusion. Let us know if you have more questions and I, or someone else here, will see if we can be of help.
And, again, good luck!
Just wanted to follow up quickly on my posting from this morning.
When I wrote that, in the new diagnostic guidelines for multiple myeloma, "there is no bone marrow plasma cell percentage requirement," I was partly right, partly correct.
I checked into it a bit more and, as I suspected when I made my posting this morning, there has been a change in this requirement from the old diagnostic criteria to the new. It is now possible to be diagnosed with multiple myeloma, under the new criteria, without having more than 10 percent plasma cells on a standard bone marrow biopsy.
However, for a multiple myeloma diagnosis to be made in that case, there would have to be a biopsy of a bone lesion or tumor outside the bone that demonstrates that the lesion or tumor is a plasmacytoma (myeloma tumor).
The rest of what I wrote is still valid. Unless you have one of the "CRA" of the "CRAB" criteria, or one of the three "myeloma defining events" described in the new criteria, then you could just have a solitary bone plasmacytoma.
Sorry if this has added to your confusion. Let us know if you have more questions and I, or someone else here, will see if we can be of help.
And, again, good luck!
Re: Myeloma diagnosis with only 5% plasma cells?
Cheryl, thank you for replying. Based on this article, I think the myeloma specialist will order more imaging. The one bone lesion found on MRI was found on an MRI of pelvis only, related to arthritis. So if there are more lesions, it must be multiple myeloma. But if only the one, it could be solitary plasmacytoma with minimal marrow involvement. Then maybe they would do radiation?
I find the waiting stages rather difficult. I became aware of the lesion in November, and rather thought the diagnosis would be multiple myeloma. But there was waiting to see the oncologist, waiting for the BMB, waiting for the results, and now waiting to see a specialist in Seattle.
I'm trying to focus on just living, not waiting, but it's a little hard.
I find the waiting stages rather difficult. I became aware of the lesion in November, and rather thought the diagnosis would be multiple myeloma. But there was waiting to see the oncologist, waiting for the BMB, waiting for the results, and now waiting to see a specialist in Seattle.
I'm trying to focus on just living, not waiting, but it's a little hard.
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pamallyn - Name: Pam Allyn
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 56
4 posts
• Page 1 of 1