I am new to all this so please help. I heard there is a non cancerous benign form of myeloma if you have few or no symptoms. Can it always be harmless or will it eventually become cancer? Is there any med you can take to prevent it from getting to cancer?
My background is I am a kidney failure patient but it was due to IGA Nephropathy. I had a transplant that lasted 5 years but now I need another one. The transplanted kidney did NOT fail due to myeloma. 2 months ago my transplanted kidney totally shut down and stopped making urine. Also a couple weeks ago I got sharp pain coming from the dead kidney but now it's mostly gone.
About a week to 10 days ago I got pain near my tailbone especially when bending at the hips. I still have it although it's a little better. A few days ago I got extreme fatigue yet that has also improved. Today my blood pressure was 98/74 but then later it was 114/74. My labs are all normal except potassium and phosphorus are a little high since I'm a kidney failure patient. My calcium is 9.4 which is normal but that's the highest I've been in years. It's been slightly increasing every month.
Also at end of May I had 2 episodes where I collapsed and couldn't walk due to high potassium. I gave up orange juice and tomato juice and that went away. I should tell I am on BP medicine of 40 mg Coreg CR and 50 mg Losartan potassium because I had high BP for years being a kidney patient. I am thinking of tapering that down since my BP dropped so low.
What do you think? I REALLY APPRECIATE YOUR HELP!
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Re: What is the non cancerous or benign form of myeloma?
Monoclonal gammopathy of undetermined significance (MGUS) could be considered the non-cancerous/more benign form of myeloma, and it can be a precursor to myeloma.
A plasmacytoma is a single site plasma cell tumor. While it is not benign, it is much less destructive than myeloma, being limited to one site. Plasmacytomas can progress to multiple myeloma at some point in the future.
There is also smoldering myeloma, an early stage of the disease, where the defining symptoms of myeloma are not (yet) there.
A plasmacytoma is a single site plasma cell tumor. While it is not benign, it is much less destructive than myeloma, being limited to one site. Plasmacytomas can progress to multiple myeloma at some point in the future.
There is also smoldering myeloma, an early stage of the disease, where the defining symptoms of myeloma are not (yet) there.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: What is the non cancerous or benign form of myeloma?
Thanks Alex. So can you have MGUS that never progresses to myeloma? Also my kidney transplant center said I have a high level of something like light chain assay lamda proteins and the other protein that goes. It seems the ratio of the 2 is normal but they are both high.
What do you guys make of that?
What do you guys make of that?
Re: What is the non cancerous or benign form of myeloma?
Here is one paper from 2011 that might be worth reading. It's estimated that the progression from MGUS to multiple myeloma is 1% per year.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3040450/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3040450/
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: What is the non cancerous or benign form of myeloma?
So it is possible to have MGUS and never get multiple myeloma?
Also my blood pressure was as low as 98/74 then went back to 116/80. All readings I took when sitting down. What do you make of the low blood pressure?
Thanks again Alex!
Also my blood pressure was as low as 98/74 then went back to 116/80. All readings I took when sitting down. What do you make of the low blood pressure?
Thanks again Alex!
Re: What is the non cancerous or benign form of myeloma?
Hello,
My apologies, but I cannot give you a more specific or direct answer. It's possible that MGUS never progresses to SMM or active myeloma or another plasma cell malignancy, but I don't know the actual numbers involving this. There is a risk of progression, and this risk increases with each year.
As for your other questions, I cannot answer at all, but there are several doctors who answer questions on the board, as well as many knowledgeable people.
My apologies, but I cannot give you a more specific or direct answer. It's possible that MGUS never progresses to SMM or active myeloma or another plasma cell malignancy, but I don't know the actual numbers involving this. There is a risk of progression, and this risk increases with each year.
As for your other questions, I cannot answer at all, but there are several doctors who answer questions on the board, as well as many knowledgeable people.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: What is the non cancerous or benign form of myeloma?
Alex, can you please at least tell me what is this light chain assay lambda proteint or whatever and what does it mean when it's high? It seems that one and a corresponding protein are high but the ratio is normal.
Thanks to all!
Thanks to all!
Re: What is the non cancerous or benign form of myeloma?
Dear HelpNeeded Please,
Kappa and lambda light chain levels are affected by kidney failure. If your kidneys shut down, regardless of the reason for it, the baseline levels of kappa and lambda light chains in the serum increase. In addition, the kappa tends to be affected to a somewhat greater degree than the lambda level, skewing the ratio of kappa to lambda light chains towards kappa. In fact, a different reference range for the serum free light chain ratio has been proposed for patients in kidney failure. If the serum kappa and lambda light chain levels are both high and the ratio is 2, that does not indicate the presence of MGUS or myeloma. My guess is that you have nothing to worry about but it would be helpful if you provided us with more detail regarding your lab work-up.
Thanks!
Pete V.
Kappa and lambda light chain levels are affected by kidney failure. If your kidneys shut down, regardless of the reason for it, the baseline levels of kappa and lambda light chains in the serum increase. In addition, the kappa tends to be affected to a somewhat greater degree than the lambda level, skewing the ratio of kappa to lambda light chains towards kappa. In fact, a different reference range for the serum free light chain ratio has been proposed for patients in kidney failure. If the serum kappa and lambda light chain levels are both high and the ratio is 2, that does not indicate the presence of MGUS or myeloma. My guess is that you have nothing to worry about but it would be helpful if you provided us with more detail regarding your lab work-up.
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: What is the non cancerous or benign form of myeloma?
Thanks so much Dr.V! I am going to get tested this week and have an appointment with a hematologist. My transplant team said the same that it is likely my kidney failure causing this and not myeloma.
For them to check I don't need that painful bone marrow biopsy do I? Can't they do other tests? If I need the bone marrow biopsy how bad is it? And how do you explain my calcium of 9.4 which is higher than it's been in years yet my diet hasn't changed. Anything to worry about or should I do something about it?
MANY THANKS!
For them to check I don't need that painful bone marrow biopsy do I? Can't they do other tests? If I need the bone marrow biopsy how bad is it? And how do you explain my calcium of 9.4 which is higher than it's been in years yet my diet hasn't changed. Anything to worry about or should I do something about it?
MANY THANKS!
Re: What is the non cancerous or benign form of myeloma?
What is the treatment for light chain associated renal disorders? My back pain is a lot better so the only symptom I have is low blood pressure. Sometimes both numbers are below 100 but I'm not dizzy just tired sometimes. All blood tests are normal except calcium at 9.4 which is normal but high for me. Potassium is 6.2 and Phosphorous 5.9 due to kidney failure.
MANY THANKS!!
MANY THANKS!!
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