April marks one year since I started with blood tests, etc. with a hematologist. Before testing today, I was told I have B-cell non-Hodgkin lymphoma and MGUS. My 2 flow tests and 1 FISH test I had last summer did not indicate which NHL I have at this point.
Today I had the second set of tests relating to multiple myeloma. I won't have all of them back until next week. The one I did get back today says my WBC is now 29.1 (up from 20 in December.) My globulin level is below normal at 2.1 and my GFR-other has dropped from 76 to 55 (below normal). Also, my platelets have been on a slow decline, still above normal, but now below 200.
I have not had a bone marrow biopsy (BMB) yet because it didn't seem to warrant it, but, after just this one test back and having felt 'crappy' with back aches, nausea, and fatigue, then seeing these numbers, do you think it is time to have the BMB?
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Re: Should I have a bone marrow biopsy?
Hi Alyce,
How have your M-spike, free light chain values, creatinine, HgB and calcium values changed between your first test and your latest test?
Also, did you get a PET/CT or a full-body skeletal survey (xray) when you were first diagnosed?
How have your M-spike, free light chain values, creatinine, HgB and calcium values changed between your first test and your latest test?
Also, did you get a PET/CT or a full-body skeletal survey (xray) when you were first diagnosed?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I have a bone marrow biopsy?
I won't know if the others have changed until I get those back on Tuesday.
Previously my calcium level has been fairly level (9.5 to 9.9), Hgb has been steady at 13.3, creatinine steady around 0.63-0.68. I had one test where a minute amount of the M-protein showed up, but not in a 24-hour urine test. I had a full body scan last summer and just had a bone density test done this Tuesday (don't have results yet). I won't know if my free light chain values have changed until I get the Tuesday report for that also. Guess I was taken back with the changes in my GFR-other change. Started last year at 94, then 76 and now 55.
When first tested, results listed possible CD5-negative CLL, splenic marginal zone lymphoma, or lymphoplasmacytic lymphoma. Mantle cell was ruled out as was hairy cell lymphoma.
At my December appointment, we discussed a BMB and agreed when something more showed up, we would then move forward with the BMB. He cautioned me that even that wouldn't necessarily give us the answer.
Previously my calcium level has been fairly level (9.5 to 9.9), Hgb has been steady at 13.3, creatinine steady around 0.63-0.68. I had one test where a minute amount of the M-protein showed up, but not in a 24-hour urine test. I had a full body scan last summer and just had a bone density test done this Tuesday (don't have results yet). I won't know if my free light chain values have changed until I get the Tuesday report for that also. Guess I was taken back with the changes in my GFR-other change. Started last year at 94, then 76 and now 55.
When first tested, results listed possible CD5-negative CLL, splenic marginal zone lymphoma, or lymphoplasmacytic lymphoma. Mantle cell was ruled out as was hairy cell lymphoma.
At my December appointment, we discussed a BMB and agreed when something more showed up, we would then move forward with the BMB. He cautioned me that even that wouldn't necessarily give us the answer.
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AStark47 - Name: Alyce
- Who do you know with myeloma?: Me possibly
Re: Should I have a bone marrow biopsy?
It was in December when the small amount of M-protein showed up that my hem/onc said I also had MGUS. Then when I realized these next tests were all geared towards multiple myeloma, again I started being more concerned with my specific changes, like the GFR-other.
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AStark47 - Name: Alyce
- Who do you know with myeloma?: Me possibly
Re: Should I have a bone marrow biopsy?
Hello Alyce,
It sounds like you have many things going on. I am MGUS as well. Do you have any idea what your M-spike was? It would have been listed as 0.0 mg/dL most likely. Even if you know what it tested at when you were first diagnosed, that would be helpful. Free light chain results are important too.
I am not familiar the other conditions you mention, so I can only speak to the MGUS. Knowing these values would make it easier to see if a BMB is a good idea, since that was your question.
I can certainly understand the concern you have. It is frightening to have unusual test results, especially when there isn't a complete resolution to your diagnosis.
I ultimately had a BMB and I'm glad I did. It confirmed the MGUS diagnosis.
Toni
It sounds like you have many things going on. I am MGUS as well. Do you have any idea what your M-spike was? It would have been listed as 0.0 mg/dL most likely. Even if you know what it tested at when you were first diagnosed, that would be helpful. Free light chain results are important too.
I am not familiar the other conditions you mention, so I can only speak to the MGUS. Knowing these values would make it easier to see if a BMB is a good idea, since that was your question.
I can certainly understand the concern you have. It is frightening to have unusual test results, especially when there isn't a complete resolution to your diagnosis.
I ultimately had a BMB and I'm glad I did. It confirmed the MGUS diagnosis.
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
Re: Should I have a bone marrow biopsy?
First off, I'm totally out of my depth in providing any guidance, given all that you have going on.
But I'm with Toni on this. If you never had a BMB, it seems like it would be a good idea to get one done, if only to confirm your MGUS diagnosis.
Note that a GFR of lower than 60 mL/min/1.73 m2 for a prolonged period of time can suggest some sort of kidney disease/impairment. I am going to therefore guess that your doctor is going to want to get to the bottom of why your GFR is dropping, and will also want to re-run some of the blood work in the near future.
But I'm with Toni on this. If you never had a BMB, it seems like it would be a good idea to get one done, if only to confirm your MGUS diagnosis.
Note that a GFR of lower than 60 mL/min/1.73 m2 for a prolonged period of time can suggest some sort of kidney disease/impairment. I am going to therefore guess that your doctor is going to want to get to the bottom of why your GFR is dropping, and will also want to re-run some of the blood work in the near future.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I have a bone marrow biopsy?
Toni,
My M-protein was less than 0.1 g/dL. That's why I had the Bence Jones test, which showed no protein.
I have read where you can have multiple myeloma without expression of the M-protein - rare, but it can happen. My kappa free light chain was 0.98, kappa/lambda free light chain ratio 1.22, and lambda free light chain 0.81.
I had another one done today and get those results Tuesday.
My M-protein was less than 0.1 g/dL. That's why I had the Bence Jones test, which showed no protein.
I have read where you can have multiple myeloma without expression of the M-protein - rare, but it can happen. My kappa free light chain was 0.98, kappa/lambda free light chain ratio 1.22, and lambda free light chain 0.81.
I had another one done today and get those results Tuesday.
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AStark47 - Name: Alyce
- Who do you know with myeloma?: Me possibly
Re: Should I have a bone marrow biopsy?
Alyce,
It is true there are variations of multiple myeloma where there is little or no impact on the serum M-spike. There are also versions of multiple myeloma where there is additionally little or no impact on the free light chain values (i.e. non-secretory multiple myeloma). In those rarer cases, you really need to have a BMB to confirm the presence and level of the disease.
It is true there are variations of multiple myeloma where there is little or no impact on the serum M-spike. There are also versions of multiple myeloma where there is additionally little or no impact on the free light chain values (i.e. non-secretory multiple myeloma). In those rarer cases, you really need to have a BMB to confirm the presence and level of the disease.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I have a bone marrow biopsy?
Oops - the light chain results I posted previously were from last April and I did have another one in November. Those numbers were:
Kappa free light chain 1.01,
Lambda free light chain 0.94
Kappa / lambda ratio 1.08.
So the numbers were different but still within the acceptable range.
I've pretty much decided that the BMB is going to have to happen so will set it up when we meet with the hem/onc on the 30th.
Thanks for all of your help/comments. Very comforting knowing there are those out there that have gone through similar situations or can give some responsible answers to questions.
I will let you all know what the outcome is.
Kappa free light chain 1.01,
Lambda free light chain 0.94
Kappa / lambda ratio 1.08.
So the numbers were different but still within the acceptable range.
I've pretty much decided that the BMB is going to have to happen so will set it up when we meet with the hem/onc on the 30th.
Thanks for all of your help/comments. Very comforting knowing there are those out there that have gone through similar situations or can give some responsible answers to questions.
I will let you all know what the outcome is.
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AStark47 - Name: Alyce
- Who do you know with myeloma?: Me possibly
Re: Should I have a bone marrow biopsy?
Alyce - yes, please do let us know how things turn out. Wishing the best for you 
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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
10 posts
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