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MGUS and myelodysplastic syndrome (MDS)
I was diagnosed a year ago with myelodysplastic syndromes (MDS) and see a hematologist / oncologist for it. At the same time I was diagnosed with MGUS. I didn't know what that meant, since I was focused on my MDS. I'm now at end stage renal failure and am on dialysis. I'm severely anemic with a hemoglobin under 8 and white cells at a 3. Could MGUS be responsible for this? I also have elevated kappa and lambda light chains. Can someone please help?
Re: MGUS and myelodysplastic syndrome (MDS)
Dear Wendy,
Is one of your physicians a myeloma specialist?
What where the results before and what are they now?
Did they take blood to test for M-spike?
What levels are your kappa/lambda at?
Did you have a bone marrow biopsy and did it include the FISH analysis?
Did you have x-rays of your bones, maybe supplemented with other imaging methods, like a PET scan?
You should probably ask your hematologist about this. And whether he/she is a myeloma specialist.
Wishing you the best,
Lev
Is one of your physicians a myeloma specialist?
What where the results before and what are they now?
Did they take blood to test for M-spike?
What levels are your kappa/lambda at?
Did you have a bone marrow biopsy and did it include the FISH analysis?
Did you have x-rays of your bones, maybe supplemented with other imaging methods, like a PET scan?
You should probably ask your hematologist about this. And whether he/she is a myeloma specialist.
Wishing you the best,
Lev
-
Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: MGUS and myelodysplastic syndrome (MDS)
Hi Wendy,
MGUS is by definition a relatively benign condition. It shouldn't be causing anemia, lowered blood cell counts, or damage to your kidneys. If it is, it isn't MGUS -- it's something more serious.
While MGUS can cause elevated light chain levels, if both types of your light chains (kappa and lambda) are elevated, it could be the result of an inflammation.
Your MDS is most likely the cause of your severe anemia. Similarly, if you've been receiving transfusions regularly for your anemia, the excess iron that results from the transfusions could be putting a burden on your kidneys, causing the kidney problems you're having.
Do you have a history of kidney problems, predating the diagnosis with MGUS and MDS?
In any case, with your dual diagnosis, it's particularly important that you be under the care of physicians who specialize in these diseases. You'll generally find such physicians at major cancer centers, rather than a local oncology practice.
MGUS is by definition a relatively benign condition. It shouldn't be causing anemia, lowered blood cell counts, or damage to your kidneys. If it is, it isn't MGUS -- it's something more serious.
While MGUS can cause elevated light chain levels, if both types of your light chains (kappa and lambda) are elevated, it could be the result of an inflammation.
Your MDS is most likely the cause of your severe anemia. Similarly, if you've been receiving transfusions regularly for your anemia, the excess iron that results from the transfusions could be putting a burden on your kidneys, causing the kidney problems you're having.
Do you have a history of kidney problems, predating the diagnosis with MGUS and MDS?
In any case, with your dual diagnosis, it's particularly important that you be under the care of physicians who specialize in these diseases. You'll generally find such physicians at major cancer centers, rather than a local oncology practice.
-
JimNY
Re: MGUS and myelodysplastic syndrome (MDS)
Hi Wendy,
First let me say, I am sorry for your diagnosis. I was originally diagnosed similarly. I was anemic Hbg 8.5-9. During that analysis, I was diagnosed with MGUS and MDS. My M-spike was 0.8, 7% plasma cells in the bone marrow, abnormal FCL ratio.
I immediately left my local hospital and sought 2nd and 3rd opinions at national leading institutes.
The MDS specialists said the level of anemia did not match the level of dysplastic cells therefore it is probably the myeloma.
The myeloma specialists said the level of anemia did not match the level of myeloma cells therefore it is probably the MDS causing the anemia.
Initial treatment during the diagnosis stage included EPO injections that helped the anemia for a month and then it crashed, Hbg hovering around 6, requiring frequent blood transfusions (every 10-14 days). Blood marrow sample now showing pure red blood aplasia.The percentage of plasma cells in the marrow at this point was 30%.
The specialist in Boston at this pointed decided to treat the myeloma and see what happens. We started twice weekly injections of Velcade with dex. The anemia, dysplasia, and myeloma all improved. I was no longer anemic. A bone marrow biopsy at this point showed continual evidence of myeloma but no indication of MDS, leading the specialists at this point to believe the anemia and dysplasia were due to a dis-regulatory immune response to the myeloma.
Based on our similarities, hopefully you can use some of this information to help you and your doctors.
Best of luck to you!
BN
First let me say, I am sorry for your diagnosis. I was originally diagnosed similarly. I was anemic Hbg 8.5-9. During that analysis, I was diagnosed with MGUS and MDS. My M-spike was 0.8, 7% plasma cells in the bone marrow, abnormal FCL ratio.
I immediately left my local hospital and sought 2nd and 3rd opinions at national leading institutes.
The MDS specialists said the level of anemia did not match the level of dysplastic cells therefore it is probably the myeloma.
The myeloma specialists said the level of anemia did not match the level of myeloma cells therefore it is probably the MDS causing the anemia.
Initial treatment during the diagnosis stage included EPO injections that helped the anemia for a month and then it crashed, Hbg hovering around 6, requiring frequent blood transfusions (every 10-14 days). Blood marrow sample now showing pure red blood aplasia.The percentage of plasma cells in the marrow at this point was 30%.
The specialist in Boston at this pointed decided to treat the myeloma and see what happens. We started twice weekly injections of Velcade with dex. The anemia, dysplasia, and myeloma all improved. I was no longer anemic. A bone marrow biopsy at this point showed continual evidence of myeloma but no indication of MDS, leading the specialists at this point to believe the anemia and dysplasia were due to a dis-regulatory immune response to the myeloma.
Based on our similarities, hopefully you can use some of this information to help you and your doctors.
Best of luck to you!
BN
-
BeautyofNature - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2011
- Age at diagnosis: 45
Re: MGUS and myelodysplastic syndrome (MDS)
Thank you for your responses. They make me feel as if I'm not alone. The answers to some of your questions are not up to date. My MDS and MGUS diagnoses were confirmed with a bone marrow biopsy. Unfortunately, I did not get the report, nor did I think to ask for it. The only tests results I have are:
10/13/2013
Kappa: 152.2
Lambda: 88.37
Ratio: 1.72
2/18/2014
Kappa: 217.66
Lambda: 157.11
Ratio: 1.39
I will have to request my medical records for further information.
My doctor is concerned about my frequent transfusions. Apparently, if you have too many transfusions, it will make me ineligible for a future kidney transplant. In addition, getting any answers from my doctor is like pulling teeth. Each appointment will be under 5 minutes, and no answers to my questions. I am going to get a second opinion as well as a new doctor.
Again, I appreciate your responses and hope all is well for you.
10/13/2013
Kappa: 152.2
Lambda: 88.37
Ratio: 1.72
2/18/2014
Kappa: 217.66
Lambda: 157.11
Ratio: 1.39
I will have to request my medical records for further information.
My doctor is concerned about my frequent transfusions. Apparently, if you have too many transfusions, it will make me ineligible for a future kidney transplant. In addition, getting any answers from my doctor is like pulling teeth. Each appointment will be under 5 minutes, and no answers to my questions. I am going to get a second opinion as well as a new doctor.
Again, I appreciate your responses and hope all is well for you.
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