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Trying to understand my mother's diagnosis & prognosis

by abhijeethsinghthakur on Thu Oct 16, 2014 10:29 am

Dear forum members,

This is Abhijeeth from India. My mother age 50, had undergone the urine electrophoresis test and it was found that the kappa light chains were 97 and the lambda were 22 the ratio was 4.32, she had no presence of M-spike or monoclonal antibodies in the urine test, what does this suggest?

She is complaining of slight back pain and chest pain. Can you please throw me some light on this query?

The doctor said as there is no diagnostic evidence of the myeloma we will have to wait for 3 months and then on further diagnosis shall the treatment begin.

Can I also know what are the chances of the myeloma not progressing any further if we give her a good diet of rich antioxidants?

Thanking you

abhijeethsinghthakur

Re: Trying to understand my mother's diagnosis & prognosis

by mikeb on Fri Oct 17, 2014 12:07 pm

Hello Abhijeeth,

Welcome to the Beacon Forum. I'll try to answer your questions, but I'm not sure I completely understand your mother's situation.

Has your mother been diagnosed with multiple myeloma? Or perhaps with some precursor disease like monoclonal gammopathy of undetermined significance (MGUS) or smoldering / as symptomatic myeloma?

If your mother has not had imaging tests such as a skeletal survey or CT or MRI done on her back and ribs, it seems like that would provide important information about what is going on.

In most myeloma cases, there is a measurable m-spike. However, in some cases there is only an abnormal free light chain kappa/lambda ratio, which your mother appears to have.

For a symptomatic myeloma diagnosis, there needs to be signs of one or more of the following:

  • Calcium (abnormally high)
  • Renal insufficiency (usually detected by abnormally high Creatinin)
  • Anemia (usually shown by abnormally low Hemoglobin)
  • Bone disease (usually lytic lesions, which could be detected through one of the imaging tests I mentioned above)
Unfortunately, I do not think there is any scientific evidence that a diet high in antioxidants does much to slow or stop myeloma growth. However, there are chemotherapy treatments that are becoming more and more advanced and effective.

Good luck to you and to your mother. Keep us posted on how she is doing.

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Trying to understand my mother's diagnosis & prognosis

by NStewart on Fri Oct 17, 2014 2:33 pm

In addition to what MikeB asked, what other testing has your mother had? Is the urine electrophoresis the only test that she had? Hopefully they did extensive blood work including CBC, chem panel, immunoglobulin panel, serum freelite test, etc, and bone marrow biopsy if any of these tests were indicative of possible multiple myeloma. If she hasn't had these blood tests, I would suggest that you ask that they be done.

All the best to your mother,
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: Trying to understand my mother's diagnosis & prognosis

by abhijeethsinghthakur on Sat Oct 18, 2014 10:36 am

The doctor conducted a Dexa scan where the z score came out as -2.3. Tthe doctor has asked us to visit him after 3 months stating no diagnostic proof of the multiple myeloma are visible. We are confused. What do you have to say? Do we wait or get a second opinion?

abhijeethsinghthakur

Re: Trying to understand my mother's diagnosis & prognosis

by Multibilly on Sat Oct 18, 2014 5:25 pm

Hi Abhijeeth,

I would suggest not waiting and I would instead find another doctor that specializes in multiple myeloma.

One does not use just a 24-hour UPEP (urine protein electrophoresis) and a DEXA scan as a means of diagnosing multiple myeloma (I assume the UPEP sample was collected over 24 hours, right?).

See this thread on transplant centers in India (which should have doctors that would be very knowledgeable about multiple myeloma):

"Stem cell transplant centers in India"

Note that a Z-score of -2.3 means that your mom has what is known as "osteopenia". She isn't too far away from being classified as having osteoporosis (you need to have a score of less than -2.5 to be classified as having osteoporosis). This DEXA-scan result is something that you should discuss with the multiple myeloma specialist.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Trying to understand my mother's diagnosis & prognosis

by abhijeethsinghthakur on Fri Oct 24, 2014 4:36 am

Hello Everybody,

We visited a hematologist at the hospital in the city. To our relief, he informed us that the unusual ratio of K/L was due to some infection in the body but not due to multiple myeloma. He went through the other test reports of my mother and asked us not to worry . though he asked us to get a Complete Blood Picture of my mother to just check other parameters.

He though asked my mother to take the zoledronic acid inj once in 3 months, Now I am bit confused as to whether we can breathe easy or should we proceed with caution and get another IEF test done after some time. We still have to get her kidney function test done, which we shall do it this Monday.

Thanks you guys for sharing the information regarding my mother's situation and after reading so many posts on this forum I realised that there is life even after myeloma.

abhijeethsinghthakur


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