Does anyone have myeloma and light chain disease? I am looking for more information on light chain disease.
Thanks.
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Re: Light Chain Disease
Do you mean light chain deposition disease? Or do you mean light chain multiple myeloma?
I believe someone can have light chain multiple myeloma without necessarily having light chain deposition disease.
I believe someone can have light chain multiple myeloma without necessarily having light chain deposition disease.
Re: Light Chain Disease
I'm not sure if I have light chain "deposition" disease, but I definitely have light chain myeloma. The only way to measure the amount of myeloma I have is by measuring my lambda light chain counts. I have no m-spike that everyone talks about. I can only monitor the amount of myeloma by the light chain blood test and/or bone marrow biopsy.
I have been diagnosed since April 2011, and had kidney function at only 50% and my lambda light chains and bone marrow biopsy showing 85-90% myeloma in my bone marrow at that time. I had multiple lesions all over my body and even broke some bones coughing. I had a great response to Revlimid, dex, and Velcade -- had a stem cell transplant in september of 2011 and went into complete remission for 9 months. The lambda light chain count started to rise then and I have been dealing with keeping it down through chemo since then.
On the up side, I still work full time, have freelance work, am taking care of a granddaughter full time and an aging mother, and am responsible for more than I care to be responsible for. There are changes from the stem cell transplant and chemo, but I just deal, even though I sometimes get irritable.
I have been diagnosed since April 2011, and had kidney function at only 50% and my lambda light chains and bone marrow biopsy showing 85-90% myeloma in my bone marrow at that time. I had multiple lesions all over my body and even broke some bones coughing. I had a great response to Revlimid, dex, and Velcade -- had a stem cell transplant in september of 2011 and went into complete remission for 9 months. The lambda light chain count started to rise then and I have been dealing with keeping it down through chemo since then.
On the up side, I still work full time, have freelance work, am taking care of a granddaughter full time and an aging mother, and am responsible for more than I care to be responsible for. There are changes from the stem cell transplant and chemo, but I just deal, even though I sometimes get irritable.
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: Light Chain Disease
I was first diagnosed with light chain deposition disease by my nephrologist. While you can have this disease without myeloma, they generally go hand in hand. He referred me to my oncologist, who diagnosed me with kappa light chain myeloma.
Basically, with light chain deposition disease, the kidneys are trying to filter out the abundance of light chain proteins from the blood stream. The proteins tend to become deposited in the kidneys and build up over time. This causes your kidney function to deplete and, if left untreated, to eventually fail.
My problem was discovered by my PCP via a very high protein level in my urine (proteinuria). Since my stem cell transplant (SCT), my proteinuria problem is now very minor. I drink a lot of fluids (primarily water) in order to flush the build up of protein from my kidney (I only have one). Eventually, I hope, my kidney should be cleared of the excess protein and the proteinuria should go away.
Basically, with light chain deposition disease, the kidneys are trying to filter out the abundance of light chain proteins from the blood stream. The proteins tend to become deposited in the kidneys and build up over time. This causes your kidney function to deplete and, if left untreated, to eventually fail.
My problem was discovered by my PCP via a very high protein level in my urine (proteinuria). Since my stem cell transplant (SCT), my proteinuria problem is now very minor. I drink a lot of fluids (primarily water) in order to flush the build up of protein from my kidney (I only have one). Eventually, I hope, my kidney should be cleared of the excess protein and the proteinuria should go away.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
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