My brother was diagnosed with multiple myeloma this past Friday. He is single 54, living in NY. I live in treatment. After reading information on this forum, and other
Resources, i decided he need a second opinion by a multiple myeloma specialist. my concern is that he started medicine yesterday, sulfamethoxazole tmp three times a week, allopurilol 300mg 1a day, dexamethasolo 4mg 10 pills on sunday, and Revlimid 25 mg. This prescribed by a hematologist, but when i researched him he is not working with a specializec multiple myeloma clinic. I have all readings from his bone scan mult nm he was injected with a solution for this scan, no evidence of bony metastases, bone scan whole body same procedure with the injection, with no evidence of bonny metastases, a bone survey with no osseous lessins no fractures only degenerative changes of spine, also ct chest with contrast with no pathologically enlarged lymph nodes, lungs clear and no fracture of visible bones and the us urinary track kiddney urinary ct scan, with no hydronephrosis or renal calcifications, no post void residuals, so far this looks good.
His lab test however are different
Iron binding capacity, all within normal numbers, but his ferritin is high 314
Bence jones protein
Protein total 16 - shows normal between 5-25
Free kappa random, 2.83 - normal 1.35 - 24.19
Free lambda ramdon urine 0.06 low; Normal. 24 - 6.66
Free kappa lambda ratio 47.17 high; normal 2.04 - 10.37 ratio
Immunofixation screen urine: an abnormal band for IgG kappa is present
No free light chains are detected
Reference range: No Monoclonal Protein Detected (is this supposed to be good news)?
His cbc/diff/pl seem bad
White blood cells good at 6.1
Red blopd cels bad, low 3.10 normal shows 4.2 - 6.0
Hemoglobin low at 9.3 norm shows 12.5 - 17.5
Hematocrit low at 28.6 norm at 38 - 52
Mcv 92 good
Mch 29.9 good
Mchc 32.4 good
Neutrophils low at 32.8 norm 40-70
Lymphocytest high at 61.2 norm 15-45
Monocytest good 4.2
Eosinophils good 1.4
Basophils good. .4
Neutrophils abs good 2.0 DIFFERENT FROM THE ONE ABOVE WHY?
Limphosytest abc good at 3.7 DIFFERENT FROM THE ONE ABOVE! WHY?
Monocytest abc good at. .3
Eosinophils absolute good at .1
Basophils abc good at 0.0
RDW CV high at 18.2 norm 11.5-15
PLATELETS low at 104 norm 150-450
MPV good at 8
Now with all this said, no fracture, no metastases, all his imagings came good, kidnneys functioning good, no momoclonal protein detected, cant figure if having free light chain are detected is good or bad, why can the current doctor give him a more specific stage of his diagnose? i am still to see the results of his bone morrow biopsy, but still with all the info above the hematologist could had given a more clear diagnose is this morelikely to be smolding myeloma, or stage 1, it is clear he has anemia, and his iron levels are high, but to start on medication without having the bone marrow results, does this sound normal? we are lost....
I made him an appointment with Dr, Ruben Niesvisky at Weil Cornell Medical Center in NY, for Dec 2; for a second opinion, because we have not been given info anout test results and what do they mean.
If anybody can help me with some info before we see doctor, thar will be great.
Thanks
Wanda
Forums
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wsuarez - Name: Wanda
- Who do you know with myeloma?: My Brother
- When were you/they diagnosed?: November 14, 2013
- Age at diagnosis: 55
Re: Lab test question
Wanda:
So sorry to hear about your brother. You sound like a caring sister.
It's great you are going to see a multiple myeloma specialist. This is the best thing that you can be doing.
As you read about myeloma, you will come across the term "CRAB" as representing the four criteria that are used to determine whether one is symptomatic (and therefore whether to begin treatment). C is high Calcium. R is Renal (Kidney), A is anemia, B is bone. You should therefore also be looking at the calcium levels, BUN, and Creatinine levels to see if there are any C or R issues going on.
It's great that he apparently has no bone issues based on imaging results, so it appears he has no "B" issues.
The A in CRAB stands for anemia. Your brother does have a low hemaglobin level (below 10 is considered anemic for the purpose of determining if your meet the "A"). He also has low red blood cells and hematocrit, again pointing to anemia. So, something should be done about this.
While he has no monoclonal protein (measures the "heavy" immunoglobulin chains that are cancerous), he clearly has something going on with his freelite chains, which is also an indicator that something is going on multiple-myeloma-wise (look at the Freelite Chain Assay for the numbers where you see the Kappa/Lambda ratio...the Kappa number must be high given he has a high Kappa/Lambda ratio).
There are versions of multiple myeloma that are non-secretory (i.e. no monoclonal protein will show up in one's blood and it is only detected by the presence of free lite chains or via a bone marrow biopsy... again, he must have a high Kappa freelite chain level in his blood given the high Kappa/Lambda ratio).
The golden test for multiple myeloma is doing a bone marrow biopsy to look at the plasma cells inside your bones. This test is also used to look at any chromosomal abnormalities to help determine the right treatment plan and to help with an overall prognosis and staging. He should definitely be getting this test done given his lab results.
The Dexamehtosone and Revlimid are being used to treat multiple myeloma. This combo is a pretty common protocol (but there are many other combos and choices of drugs that can be investigated). I'm not a doc, but it sounds like the other drugs are for treating a urinary issue?
Hope this helps. Again, you are doing the right thing getting a second opinion and I wish you and your bro all the best.
So sorry to hear about your brother. You sound like a caring sister.
It's great you are going to see a multiple myeloma specialist. This is the best thing that you can be doing.
As you read about myeloma, you will come across the term "CRAB" as representing the four criteria that are used to determine whether one is symptomatic (and therefore whether to begin treatment). C is high Calcium. R is Renal (Kidney), A is anemia, B is bone. You should therefore also be looking at the calcium levels, BUN, and Creatinine levels to see if there are any C or R issues going on.
It's great that he apparently has no bone issues based on imaging results, so it appears he has no "B" issues.
The A in CRAB stands for anemia. Your brother does have a low hemaglobin level (below 10 is considered anemic for the purpose of determining if your meet the "A"). He also has low red blood cells and hematocrit, again pointing to anemia. So, something should be done about this.
While he has no monoclonal protein (measures the "heavy" immunoglobulin chains that are cancerous), he clearly has something going on with his freelite chains, which is also an indicator that something is going on multiple-myeloma-wise (look at the Freelite Chain Assay for the numbers where you see the Kappa/Lambda ratio...the Kappa number must be high given he has a high Kappa/Lambda ratio).
There are versions of multiple myeloma that are non-secretory (i.e. no monoclonal protein will show up in one's blood and it is only detected by the presence of free lite chains or via a bone marrow biopsy... again, he must have a high Kappa freelite chain level in his blood given the high Kappa/Lambda ratio).
The golden test for multiple myeloma is doing a bone marrow biopsy to look at the plasma cells inside your bones. This test is also used to look at any chromosomal abnormalities to help determine the right treatment plan and to help with an overall prognosis and staging. He should definitely be getting this test done given his lab results.
The Dexamehtosone and Revlimid are being used to treat multiple myeloma. This combo is a pretty common protocol (but there are many other combos and choices of drugs that can be investigated). I'm not a doc, but it sounds like the other drugs are for treating a urinary issue?
Hope this helps. Again, you are doing the right thing getting a second opinion and I wish you and your bro all the best.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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