Hi all,
In some pre-op consultations for a total knee replacement, the surgeon wanted continued follow up for my mother due to a low hemoglobin level (9.6 gm/dL). He didn't want to operate of course at this level.
So her PCP referred her to a hematologist to work out why she has had this chronic anemia for the last couple of years. Iron levels are fine, B12 levels are fine. So those are not the causes.
Well, in more advanced blood work this past week, the words MGUS and possible multiple myeloma entered the conversation which no one was expecting. I am trying my best not to freak out, but le'ts be real, at some times it works and at others it simply doesn't.
I'm spending a lot of time educating myself, and based on all of my research I now know that MGUS / multiple myeloma is a very variable disease. I do know that the M-protein is present and in my understanding if anemia is present then it is no longer MGUS?
Here are some numbers that I know of (sorry I don't have the ranges on the print out)
* Total protein - 8.0
* M protein - 0.65 g/dL (in beta region, IgG type lambda monoclonal protein)
* Hemoglobin - 9.6
* Kappa light chain - 4.75 mg/dL
* Lambda Light chain - 5.07 mg/dL
* 0.94
The plan of attack at this point is to do some nutritional supplements due to low lab values in certain areas (i.e., folic acid, B6, D) for about 2 weeks and check hemoglobin.
I would assume if it doesn't go up, then there would be a bone marrow biopsy and x-rays in our future. No bony lesions that we know of at this time.
Thanks all,,
Heather
Forums
8 posts
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Re: Waiting for diagnosis - MGUS, or myeloma?
HI there,
I am not a doctor or nurse, but a MGUS patient who also has hemoglobin levels of around 90, and have for many years, long before MGUS arrived. I also have stage 3B stable kidney disease, most likely due to an autoimmune disease which causes inflammation. Again, had the kidney issue long before the MGUS was discovered. The anemia has been classified as the anemia of chronic disease (ACD), probably due to my autoimmune condition. The anemia is also likely due to my kidney dysfunction. Ironically, other than feeling the cold more, and loving the heat, I have no other symptoms and my body has totally adapted to the low numbers as my normal.
Over the three years since my MGUS diagnosis, blood and renal issues are stable, but FLC assay jumped up and M protein went to 2 (Canadian value). The thing which still kept me MGUS back in January is the result of the bone marrow biopsy, which only showed 5% plasma cells.
So, what I am saying is the whole picture has to be taken into account. If your Mom's anemia is not due to MGUS, but another cause, which is highly possible, too, she will be MGUS, if her bone marrow shows plasma cells of under 10%.
My best advice would be to consult a multiple myeloma specialist, even just once, rather than a community hematologist, who sees many cancers, and does not zoom in on just MGUS, smoldering multiple myeloma, or multiple myeloma. If the bone marrow biopsy is done, and is fine, no need to put her through unnecessary radiation if she is not having bone pain ( or so says my specialist!). Of course, if it is MGUS, ensure that she is followed every 6 months, at least, and things can and do change( I am proof of that, too!).
So, yes you can have anemia, and yes, it can still be MGUS – very much so. I am total proof of that for the past three years.
Hope this helps and takes some of your fear for your Mom away. Stay positive and go out and do something fun together.
I am not a doctor or nurse, but a MGUS patient who also has hemoglobin levels of around 90, and have for many years, long before MGUS arrived. I also have stage 3B stable kidney disease, most likely due to an autoimmune disease which causes inflammation. Again, had the kidney issue long before the MGUS was discovered. The anemia has been classified as the anemia of chronic disease (ACD), probably due to my autoimmune condition. The anemia is also likely due to my kidney dysfunction. Ironically, other than feeling the cold more, and loving the heat, I have no other symptoms and my body has totally adapted to the low numbers as my normal.
Over the three years since my MGUS diagnosis, blood and renal issues are stable, but FLC assay jumped up and M protein went to 2 (Canadian value). The thing which still kept me MGUS back in January is the result of the bone marrow biopsy, which only showed 5% plasma cells.
So, what I am saying is the whole picture has to be taken into account. If your Mom's anemia is not due to MGUS, but another cause, which is highly possible, too, she will be MGUS, if her bone marrow shows plasma cells of under 10%.
My best advice would be to consult a multiple myeloma specialist, even just once, rather than a community hematologist, who sees many cancers, and does not zoom in on just MGUS, smoldering multiple myeloma, or multiple myeloma. If the bone marrow biopsy is done, and is fine, no need to put her through unnecessary radiation if she is not having bone pain ( or so says my specialist!). Of course, if it is MGUS, ensure that she is followed every 6 months, at least, and things can and do change( I am proof of that, too!).
So, yes you can have anemia, and yes, it can still be MGUS – very much so. I am total proof of that for the past three years.
Hope this helps and takes some of your fear for your Mom away. Stay positive and go out and do something fun together.
Re: Waiting for diagnosis - MGUS, or myeloma?
Heather,
You say that you Mom has no bony lesions that you know of. How was that established? Especially since she has a knee problem, it should be investigated to be sure that it is not related to potential myeloma activity, which can affect the bones. Although her M-spike is not high, I think she should have a full myeloma work-up, if she hasn't already. Her light chains look good, which is encouraging. But, she is pretty anemic, and if she has been for a couple of years, as you indicated, the reason should be established. Take her to a myeloma specialist, if you can. If you tell us where you live, folks on the forum will be happy to make recommendations.
Sorry you have to be here, but you are in the right place to help your Mother. She is very lucky to have you watching out for her.
Good luck.
Ellen Harris
You say that you Mom has no bony lesions that you know of. How was that established? Especially since she has a knee problem, it should be investigated to be sure that it is not related to potential myeloma activity, which can affect the bones. Although her M-spike is not high, I think she should have a full myeloma work-up, if she hasn't already. Her light chains look good, which is encouraging. But, she is pretty anemic, and if she has been for a couple of years, as you indicated, the reason should be established. Take her to a myeloma specialist, if you can. If you tell us where you live, folks on the forum will be happy to make recommendations.
Sorry you have to be here, but you are in the right place to help your Mother. She is very lucky to have you watching out for her.
Good luck.
Ellen Harris
Re: Waiting for diagnosis - MGUS, or myeloma?
Hi Heather,
Sorry to hear about your mom's situation.
Did the doc run a serum ferritin and serum iron binding capacity test?
What's the normal reference range for the hemoglobin level that you cited?
Unless you can get the hemoglobin level up through the aforementioned vitamin supplements or attribute the anemia to another disorder, I imagine that the doc would do some additional tests such as a bone marrow biopsy and radiological imaging. I say this because your mom would be considered anemic by multiple myeloma standards if her hemoglobin is 2 g/dL below the lower limit of normal or <10 g/dL and the anemia can definitely be attributed to her monoclonal gammopathy. Anemia attributable to a monoclonal gammopathy, accompanied by a greater than 10% bone marrow plasma cell percentage (verified via a bone marrow biopsy) or the presence of a biopsy-proven plasmacytoma (initially detected via radiological imaging), is sufficient for a diagnosis of symptomatic multiple myeloma.
This thread might also be helpful to you:
"Counteracting anemia" (started July 22, 2014)
Let us know how things turn out and good luck!
Sorry to hear about your mom's situation.
Did the doc run a serum ferritin and serum iron binding capacity test?
What's the normal reference range for the hemoglobin level that you cited?
Unless you can get the hemoglobin level up through the aforementioned vitamin supplements or attribute the anemia to another disorder, I imagine that the doc would do some additional tests such as a bone marrow biopsy and radiological imaging. I say this because your mom would be considered anemic by multiple myeloma standards if her hemoglobin is 2 g/dL below the lower limit of normal or <10 g/dL and the anemia can definitely be attributed to her monoclonal gammopathy. Anemia attributable to a monoclonal gammopathy, accompanied by a greater than 10% bone marrow plasma cell percentage (verified via a bone marrow biopsy) or the presence of a biopsy-proven plasmacytoma (initially detected via radiological imaging), is sufficient for a diagnosis of symptomatic multiple myeloma.
This thread might also be helpful to you:
"Counteracting anemia" (started July 22, 2014)
Let us know how things turn out and good luck!
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Waiting for diagnosis - MGUS, or myeloma?
Hi Heather,
I think you are right: your mom will probably have a bone marrow biopsy to see what’s up, especially if those nutritional supplements do not work.
In order to have multiple myeloma, your doctor needs to establish the existence of abnormal plasma cell clones. A bone marrow biopsy is probably essential for this determination.
I became anemic long before my myeloma arrived. I had a slow descent to full-blown anemia, taking three or four years to go from a hemoglobin level of 15.0 g/dL to below 9.0 g/dL. When my level fell to 8.5 g/dL, my hematologist advised that I start receiving transfusions of red blood cells. Nowadays, I get three units of transfused blood every three weeks. I am considered to be totally transfusion dependant. Suffering with fatigue is an understatement.
Besides having anemia for a long time, I also had MGUS. This slowly percolated for ten years before recently bursting forth, much to my surprise. A quick bone marrow biopsy showed that I had developed myeloma (50% of my marrow is abnormal plasma cells).
Another way to help anemic people is to give them erythropoietin. This is a naturally occurring hormone secreted by the kidneys that stimulates the production of more red blood cells. I mention this because there are are at least two ways to deal with anemia if your mom finds it necessary to have treatment.
Good luck,
Joe
I think you are right: your mom will probably have a bone marrow biopsy to see what’s up, especially if those nutritional supplements do not work.
In order to have multiple myeloma, your doctor needs to establish the existence of abnormal plasma cell clones. A bone marrow biopsy is probably essential for this determination.
I became anemic long before my myeloma arrived. I had a slow descent to full-blown anemia, taking three or four years to go from a hemoglobin level of 15.0 g/dL to below 9.0 g/dL. When my level fell to 8.5 g/dL, my hematologist advised that I start receiving transfusions of red blood cells. Nowadays, I get three units of transfused blood every three weeks. I am considered to be totally transfusion dependant. Suffering with fatigue is an understatement.
Besides having anemia for a long time, I also had MGUS. This slowly percolated for ten years before recently bursting forth, much to my surprise. A quick bone marrow biopsy showed that I had developed myeloma (50% of my marrow is abnormal plasma cells).
Another way to help anemic people is to give them erythropoietin. This is a naturally occurring hormone secreted by the kidneys that stimulates the production of more red blood cells. I mention this because there are are at least two ways to deal with anemia if your mom finds it necessary to have treatment.
Good luck,
Joe
-
Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Waiting for diagnosis - MGUS, or myeloma?
Thanks for all of the responses.
We will wait and see what transpires after repeat hemoglobin next week.
Thanks much,
Heather
We will wait and see what transpires after repeat hemoglobin next week.
Thanks much,
Heather
Re: Waiting for diagnosis - MGUS, or myeloma?
Heather-
My myeloma, smoldering at the time, also was picked up during pre-surgical testing for a shoulder replacement. I had an mMspike and anemia, plus other abnormal results, at the time. The pre-surgical physician had me go to my primary physician to repeat the testing because she felt that there was a mistake in the results. Alas, the new tests came back pretty much the same. My primary and the surgeon agreed that I would be ok in surgery because they would take extra precautions since they already knew that there were some problems. My primary made me promise to see a hematologist / oncologist after I recovered.
When I consulted the hematologist / oncologist, all of my tests again came back abnormal, so he ordered more specific tests, including 24-hour urine, serum protein electrophoresis (SPEP), bone marrow biopsy, and skeletal x-rays. It was at that point that I was diagnosed with smoldering myeloma and put on the "watch and wait" protocol. I then consulted a myeloma specialist. He ordered some injections to improve my red cell count and thus my anemia. A year later I progressed to active myeloma.
All this to say that it's good that your mother is going to have more testing and observation prior to her surgery. She likely will do fine with the knee surgery, but it is a rugged recovery when you are in the best of health. Take a deep breath and be thankful that her doctors are paying attention.
Nancy in Phila
My myeloma, smoldering at the time, also was picked up during pre-surgical testing for a shoulder replacement. I had an mMspike and anemia, plus other abnormal results, at the time. The pre-surgical physician had me go to my primary physician to repeat the testing because she felt that there was a mistake in the results. Alas, the new tests came back pretty much the same. My primary and the surgeon agreed that I would be ok in surgery because they would take extra precautions since they already knew that there were some problems. My primary made me promise to see a hematologist / oncologist after I recovered.
When I consulted the hematologist / oncologist, all of my tests again came back abnormal, so he ordered more specific tests, including 24-hour urine, serum protein electrophoresis (SPEP), bone marrow biopsy, and skeletal x-rays. It was at that point that I was diagnosed with smoldering myeloma and put on the "watch and wait" protocol. I then consulted a myeloma specialist. He ordered some injections to improve my red cell count and thus my anemia. A year later I progressed to active myeloma.
All this to say that it's good that your mother is going to have more testing and observation prior to her surgery. She likely will do fine with the knee surgery, but it is a rugged recovery when you are in the best of health. Take a deep breath and be thankful that her doctors are paying attention.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Waiting for diagnosis - MGUS, or myeloma?
Hi all,
We are still waiting for answers and I'm going insane. I can handle any answer, I just want to hear something. Did repeat blood work after 2 weeks of nutritional supplements and in fact the hemoglobin dropped from 9.6 to 8.6. It has been a week since those lab tests and no call or communication from anyone!
Frustrated and I know you guys get where I'm coming from.
Thanks,
Heather
We are still waiting for answers and I'm going insane. I can handle any answer, I just want to hear something. Did repeat blood work after 2 weeks of nutritional supplements and in fact the hemoglobin dropped from 9.6 to 8.6. It has been a week since those lab tests and no call or communication from anyone!
Frustrated and I know you guys get where I'm coming from.
Thanks,
Heather
8 posts
• Page 1 of 1