My grandfather was recently diagnosed with Multiple Myeloma. The problem is that he is adamant that the doctors are wrong and he is fine. I want to be sure that based on his results it is unlikely he doesn't have multiple myeloma.
He has multiple bone lesions on is lumbar and thoracic vertebrae.
He is bone lesions on at least two ribs
He is a bone lesions on the ilium.
His Serum Kappa LC levels were 16.74 mg/L while his Lambda LC levels were 917 mg/L giving him a ratio of 0.018.
His B2-MG levels are at 2.32 mg/L
However is Calcium levels were high normal, but still normal, despite the multiple lesions.
His SEP test was also normal, which we were told is unusual if someone has myeloma.
Could someone else cause this, or is myeloma really the only possibility?
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Re: Could it be something besides multiple myeloma?
Hi, the gold standard for diagnosing myeloma is the bone marrow biopsy. Has this been done? If not, it needs to be done. Obviously, the bone lesions and the very high light chains raise a big red flag.
The normal serum electropheresis is not that unusual in myeloma. In fact, about 20% of patients (including me) are light chain only and our SPEP's are generally normal.....serum and urine immunofixation and the FLC assay tell the fuller story.
The normal serum electropheresis is not that unusual in myeloma. In fact, about 20% of patients (including me) are light chain only and our SPEP's are generally normal.....serum and urine immunofixation and the FLC assay tell the fuller story.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Could it be something besides multiple myeloma?
He certainly has the indicators. "Feels Fine" isn't something that has any bearing on the disease, at least in my case it wasn't. I felt fine until I had some symptoms otherwise, but by then I was deep into the disease.
I agree with terry that there is one final answer, a marrow biopsy.
I agree with terry that there is one final answer, a marrow biopsy.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Could it be something besides multiple myeloma?
All the previous posts are right. A Lambda FLC value of 917 mg/L is very, very high (the upper normal limit is 26.3 mg/L). Terry is also right in that 20% of patients don't secrete the monoclonal protein into their blood, so you can have a clean SEP, but still have a very serious stage of multiple myeloma. You can also have multiple myeloma without having a high calcium level and/or being anemic.
Even if it isn't multiple myeloma, there is something very serious going on here, especially given that he already has confirmed bone lesions.
See a multiple myeloma specialist. Get a bone marrow biopsy that includes chromosome testing (FISH, etc)..
You will find many heartbreaking stories on this forum of folks that weren't diagnosed until very late in the game when they had a serious fracture and/or started to feel the symptoms from the damage the disease was causing. The earlier you catch this disease and come up with a plan to address it, the better.
There are many wonderful treatments that are available to those afflicted with multiple myeloma.
Wishing you the best and I hope that your grandfather will listen to reason.
Even if it isn't multiple myeloma, there is something very serious going on here, especially given that he already has confirmed bone lesions.
See a multiple myeloma specialist. Get a bone marrow biopsy that includes chromosome testing (FISH, etc)..
You will find many heartbreaking stories on this forum of folks that weren't diagnosed until very late in the game when they had a serious fracture and/or started to feel the symptoms from the damage the disease was causing. The earlier you catch this disease and come up with a plan to address it, the better.
There are many wonderful treatments that are available to those afflicted with multiple myeloma.
Wishing you the best and I hope that your grandfather will listen to reason.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could it be something besides multiple myeloma?
I am not sure if they plan to do treatment for my grandfather due to his age (90).
One odd thing, the reason the initial X-Rays and CTs were done was because he was complaining of pain in his back and side, but shortly after being diagnosed he says the pain gone. This was without any drugs or treatment. Does Myeloma pain go away on its own?
One odd thing, the reason the initial X-Rays and CTs were done was because he was complaining of pain in his back and side, but shortly after being diagnosed he says the pain gone. This was without any drugs or treatment. Does Myeloma pain go away on its own?
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DSMan
Re: Could it be something besides multiple myeloma?
Doubtful the pain would just evaporate. He may just be in a bit of understandable denial and downplaying the pain. We have all been there. The new novel therapies could chop away his myeloma quickly for quite a while, maybe years, without SCT and bisphosphonates can strengthen his bones and lessen the pain. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Could it be something besides multiple myeloma?
I noticed that most people seem to have high Kappa, but my grandfather has high Lambda, does that make much a difference in the disease progression and treatment? Is one worst than the other?
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DSMan
Re: Could it be something besides multiple myeloma?
I am personally light chain only kappa restricted....my involved light chain is kappa. At one point mine reached 16,000 mg/l....not a typo! I thankfully suffered no kidney damage prior to treatment and that number came down quickly. Only a doctor can answer your question about which could be worse on the kidneys but I think the treatments/outcomes are the same.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
8 posts
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