I am just starting on this journey. I am scared. Just notified that I have Bence-Jones cells. So I am scared and confused. All started from decreased GFR rate.
I am scheduled to see an oncologist next week. What do I need to know and ask?
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Re: Just starting on this journey - I am scared
What symptoms brought you to the doctor in the first place?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Just starting on this journey - I am scared
Hi Gale,
Welcome to the forum, but sorry that you find yourself here. We've all been where you are now and can understand your angst.
The presence of Bence Jones protein ("free light chains" in one's urine) can suggest anything from MGUS to multiple myeloma to amyloidosis. But a positive test result can also sometimes be a false reading or it can show up in folks with chronic renal failure, connective tissue diseases, etc.
To narrow down the possibilities, there are some pretty key blood tests that your doctor may have already done. These include:
Serum protein electophoresis
Serum immunofixaiton
Serum free light chain assay
Quantified immunoglobulins (IgG, IgA, IgM)
Do you have these test results (they may be available online if you don't have the results in hand)?
I suspect you also already had a CBC and metabolic panel done if you know your GFR and had a 24 hour urine test. Do you know what your serum creatinine, calcium and hemoglobin levels are (including units of measure and normal ranges)? What was your GFR level?
Knowing the above information will help folks on the forum suggest additional questions to ask at your upcoming appointment. But if your doctor hasn't already ordered these tests, then the oncologist will likely run the above tests and schedule you for a follow-up appointment.
In any case, I would write down all your questions beforehand and then record the appointment on a smartphone or have a friend come along as a scribe. These initial appointments can sometimes be information-overload events and folks can often get flustered and forget to ask their questions or not remember exactly what they heard.
Welcome to the forum, but sorry that you find yourself here. We've all been where you are now and can understand your angst.
The presence of Bence Jones protein ("free light chains" in one's urine) can suggest anything from MGUS to multiple myeloma to amyloidosis. But a positive test result can also sometimes be a false reading or it can show up in folks with chronic renal failure, connective tissue diseases, etc.
To narrow down the possibilities, there are some pretty key blood tests that your doctor may have already done. These include:
Serum protein electophoresis
Serum immunofixaiton
Serum free light chain assay
Quantified immunoglobulins (IgG, IgA, IgM)
Do you have these test results (they may be available online if you don't have the results in hand)?
I suspect you also already had a CBC and metabolic panel done if you know your GFR and had a 24 hour urine test. Do you know what your serum creatinine, calcium and hemoglobin levels are (including units of measure and normal ranges)? What was your GFR level?
Knowing the above information will help folks on the forum suggest additional questions to ask at your upcoming appointment. But if your doctor hasn't already ordered these tests, then the oncologist will likely run the above tests and schedule you for a follow-up appointment.
In any case, I would write down all your questions beforehand and then record the appointment on a smartphone or have a friend come along as a scribe. These initial appointments can sometimes be information-overload events and folks can often get flustered and forget to ask their questions or not remember exactly what they heard.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just starting on this journey - I am scared
You have to stay positive that you are going to be healed.
I was diagnosed in 2008, went into remission a year later and the cancer came back. I used Velcade that did nothing but damage. I was put back on thalidomide and went into remission again after 2 years. It came back again last year and I am now using Revlimid.
I was diagnosed in 2008, went into remission a year later and the cancer came back. I used Velcade that did nothing but damage. I was put back on thalidomide and went into remission again after 2 years. It came back again last year and I am now using Revlimid.
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Danie - Name: Danie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2008
- Age at diagnosis: 64
Re: Just starting on this journey - I am scared
Dear Gale,
Sorry to read of your fear; you appear to fear that you are about to set out upon a seemingly dark and endless road, one not of your choosing; you would not be human if you did not feel fear. The word cancer is a chilling one. It strikes us as final and painful. If it helps I can offer you a little of my own journey on that road. I was diagnosed at age 52, a married father of two unmarried daughters in the midst of my busy life. Carried headlong down my own "river of life" without thought of mortality - until suddenly, the diagnosis. After 9 cycles of VAD and a stem cell transplant I had complete remission, then a plasmacytoma was found in my thorax. This was treated successfully by a month of radiation therapy. I am now again in complete remission. The first remission without any on-going treatment was for ten years, now the total is sixteen years.
I have since walked both my daughters down the aisle at their weddings and have four beautiful grand-children. I also re-trained as a Rogerian counsellor to work pro bono for a doctors' practice to help distressed clients. Apart from my wife, family, and friends, hope is my best friend now and, has proved herself a dear one. I wish you well on your journey, each year brings us closer to a complete cure.
Sorry to read of your fear; you appear to fear that you are about to set out upon a seemingly dark and endless road, one not of your choosing; you would not be human if you did not feel fear. The word cancer is a chilling one. It strikes us as final and painful. If it helps I can offer you a little of my own journey on that road. I was diagnosed at age 52, a married father of two unmarried daughters in the midst of my busy life. Carried headlong down my own "river of life" without thought of mortality - until suddenly, the diagnosis. After 9 cycles of VAD and a stem cell transplant I had complete remission, then a plasmacytoma was found in my thorax. This was treated successfully by a month of radiation therapy. I am now again in complete remission. The first remission without any on-going treatment was for ten years, now the total is sixteen years.
I have since walked both my daughters down the aisle at their weddings and have four beautiful grand-children. I also re-trained as a Rogerian counsellor to work pro bono for a doctors' practice to help distressed clients. Apart from my wife, family, and friends, hope is my best friend now and, has proved herself a dear one. I wish you well on your journey, each year brings us closer to a complete cure.
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