Hi,
I recently posted seeking myeloma specialists for my mother. We are in Sydney, Australia and are now waiting to see a specialist at the Royal Prince Albert.
My mum got her test results today which had been ordered a few weeks ago.
Bone marrow biopsy showed 10% plasma cells. I was bracing myself for a higher number. I understand MGUS is under 10%, so she is just on that, which we took as good news?
Blood tests had a few concerning numbers though:
Kappa free light chains 592 (normal 3.3-19.4)
Lambda free light chains 11.4
Kappa lambda ratio 51.9 (normal 0.3 - 1.7)
Borderline anemia with hemoglobin of 118 (normal 119 -160)
Red cell count 3.7 (normal 3.8-5.8)
ESR was also out 122 (normal 1-35)
Immunoglobulin A was 21.77 (normal 0.6-3.96)
Albumin was ok but a little low at 38 (normal 37-50)
Total globulin was high: 45.
X-rays showed some areas of concern - small regions of reduced attenuation in the skull and leg which could indicate myeloma but which were inconclusive.
I would be grateful for your comments if you are familiar with these types of results. The kappa free light chain number is very high. What does this mean? Is the mild anaemia and suspicious x-ray of concern even though the percentage of plasma in the bone marrow seems to be at the lower end?
Many thanks.
GMM
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Re: MGUS, smoldering, or symptomatic multiple myeloma?
Hi GMM,
First off, I'm not a doc, so please verify all this with your mom's doctors.
This does indeed look like MGUS, just being on the border of smoldering multiple myeloma.
Note that you should also be tracking your mom's calcium and creatinine levels to keep an eye out for hypercalcemia and reduced kidney function, respectively. In addition to the creatinine level, the eGFR is an additional number to keep an eye on with respect to kidney function.
While not a very exact number in IgA patients, it's also useful to track the "M-spike" (aka M-protein, paraprotein, abnormal protein, etc), which can be found on the serum protein electrophoresis test. But looking at her IgA level, her M-spike must be less than 3 g/dL (30 g/L), which also keeps her within the boundaries of an MGUS diagnosis.
Anemia by multiple myeloma "CRAB" standards is considered as a hemoglobin level of < 10 g/dl (100 g/L) or 2 g/dL (20 g/L) < normal. So, she is still well above that level.
Her free light chain (FLC) ratio is fairly high, but I wouldn't call it "very high". If the FLC ratio approaches 100, then some doctors may consider initiating treatment at that time. See:
S Vincent Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders", The Myeloma Beacon, Oct 26, 2014
Given there were some suspicious findings on the xray, I might suggest a follow up PET/CT or MRI to confirm if they may be related to multiple myeloma or not. Certainly bring a copy of the radiological results and CD of the image session to the second doctor for a second opinion.
Unfortunately, IgA MGUS patients have a slightly higher risk of evolving into higher forms of multiple myeloma such as smoldering multiple myeloma or symptomatic multiple myeloma.
With these numbers, I imagine that her doctor will be monitoring her every 10-12 weeks for the first year or so.
Lastly, whenever you post any numbers on this forum, it's very helpful if you also include the units of measure. Different labs and countries all use different units of measure.
Hope this helps a bit.
First off, I'm not a doc, so please verify all this with your mom's doctors.
This does indeed look like MGUS, just being on the border of smoldering multiple myeloma.
Note that you should also be tracking your mom's calcium and creatinine levels to keep an eye out for hypercalcemia and reduced kidney function, respectively. In addition to the creatinine level, the eGFR is an additional number to keep an eye on with respect to kidney function.
While not a very exact number in IgA patients, it's also useful to track the "M-spike" (aka M-protein, paraprotein, abnormal protein, etc), which can be found on the serum protein electrophoresis test. But looking at her IgA level, her M-spike must be less than 3 g/dL (30 g/L), which also keeps her within the boundaries of an MGUS diagnosis.
Anemia by multiple myeloma "CRAB" standards is considered as a hemoglobin level of < 10 g/dl (100 g/L) or 2 g/dL (20 g/L) < normal. So, she is still well above that level.
Her free light chain (FLC) ratio is fairly high, but I wouldn't call it "very high". If the FLC ratio approaches 100, then some doctors may consider initiating treatment at that time. See:
S Vincent Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders", The Myeloma Beacon, Oct 26, 2014
Given there were some suspicious findings on the xray, I might suggest a follow up PET/CT or MRI to confirm if they may be related to multiple myeloma or not. Certainly bring a copy of the radiological results and CD of the image session to the second doctor for a second opinion.
Unfortunately, IgA MGUS patients have a slightly higher risk of evolving into higher forms of multiple myeloma such as smoldering multiple myeloma or symptomatic multiple myeloma.
With these numbers, I imagine that her doctor will be monitoring her every 10-12 weeks for the first year or so.
Lastly, whenever you post any numbers on this forum, it's very helpful if you also include the units of measure. Different labs and countries all use different units of measure.
Hope this helps a bit.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, smoldering, or symptomatic multiple myeloma?
Thank you Multibilly. I really appreciate your comments, which are very informative.
We are seeing the specialist in 2 weeks. I will ask about further investigations given the suspicious areas on the xray. Wouldn't it be strange, though, to have bone damage without a higher plasma cell count in the bone marrow, or is that number not really so important?
Do you know of any articles about the risk of IgA myeloma progressing vs. other types?
I don't want to focus my mum on this increased risk. Hopefully it doesn't eventuate for her, but I just want to know what I should be asking the doctor.
Thank you again.
We are seeing the specialist in 2 weeks. I will ask about further investigations given the suspicious areas on the xray. Wouldn't it be strange, though, to have bone damage without a higher plasma cell count in the bone marrow, or is that number not really so important?
Do you know of any articles about the risk of IgA myeloma progressing vs. other types?
I don't want to focus my mum on this increased risk. Hopefully it doesn't eventuate for her, but I just want to know what I should be asking the doctor.
Thank you again.
Re: MGUS, smoldering, or symptomatic multiple myeloma?
It's important to understand that bone marrow biopsy results are hit and miss since the disease is not spread evenly throughout one's bone marrow. Therefore you can have a 1% bone marrow plasma cell reading on one test and a different bone marrow plasma cell count on the same day if the second sample were simply taken elsewhere on the patient's body. So, one shouldn't automatically write off any suspicious radiological findings based on a bone marrow plasma cell reading alone.
Regarding the risk of progression with respect to IgA, you can start with these links:
"MGUS And Smoldering Multiple Myeloma: Experts Identify Risk Factors For Disease Progression And Establish Monitoring Guidelines - Part 1: MGUS," The Myeloma Beacon, Aug 16, 2010
"Is IgA multiple myeloma more aggressive?" (forum disc. started Aug 9, 2014)
The advanced search engine (at the top of the page you are viewing) within the Beacon is your friend. Just use key words like "risk of progression IgA".
Regarding the risk of progression with respect to IgA, you can start with these links:
"MGUS And Smoldering Multiple Myeloma: Experts Identify Risk Factors For Disease Progression And Establish Monitoring Guidelines - Part 1: MGUS," The Myeloma Beacon, Aug 16, 2010
"Is IgA multiple myeloma more aggressive?" (forum disc. started Aug 9, 2014)
The advanced search engine (at the top of the page you are viewing) within the Beacon is your friend. Just use key words like "risk of progression IgA".
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, smoldering, or symptomatic multiple myeloma?
Good morning GMM,
I am pleased that you have your appointment in 2 weeks sorted so that you can start getting some more definite answers.
Have you faxed through those results to RPA? I sent everything ahead of time so the doctor had time to read through them first.
I wish your mum the very best and she is very lucky to have your love and support through this tough time. Take care of yourself as well.
I am pleased that you have your appointment in 2 weeks sorted so that you can start getting some more definite answers.
Have you faxed through those results to RPA? I sent everything ahead of time so the doctor had time to read through them first.
I wish your mum the very best and she is very lucky to have your love and support through this tough time. Take care of yourself as well.
Re: MGUS, smoldering, or symptomatic multiple myeloma?
Hi Aussie Annie,
I did fax through the test results. The doctor will have it all by the time we see him. Mum wants to move over to RPA for care and management. Thank you for your recommendation. I've also been asking anyone I can in the medical world about the best specialists and RPA has been the main recommendation.
Thank you for your support. Wishing you all the best also.
Thanks also Multibilly. I hope we haven't been led into a false confidence with the bone marrow results.
GMM
I did fax through the test results. The doctor will have it all by the time we see him. Mum wants to move over to RPA for care and management. Thank you for your recommendation. I've also been asking anyone I can in the medical world about the best specialists and RPA has been the main recommendation.
Thank you for your support. Wishing you all the best also.
Thanks also Multibilly. I hope we haven't been led into a false confidence with the bone marrow results.
GMM
6 posts
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