Received a letter last week to say my GP didn't label the vials! So it's another few weeks before the results.
I was going to use an emoji to show surprise/rage, etc. But I now expect incompetence; I'll use one when I'm surprised by their competence!
Forums
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Trace of tiny IgA lambda monoclonal protein band
Ah, you're not serious Colm! You must be raging! Did you get any results back at this stage?
I didn't end up getting the bone marrow biopsy, as the paraprotein is a trace reading. Got all my tests done again and still waiting on the urine protein electrophoresis results and the free light serum assay. Haematologist said it could be another month before these come back, making two months in total since completed. Gotta love the HSE in Eire!
The results so far have been normal except the pesky trace IgA lambda paraprotein is still hanging around in the beta 2 region. Doctor said it might take a little more time to leave as it was only 15 weeks since initial test, or it might stay; have to wait and see. So I'm in limbo until November. Could be worse of course, but I'm a total impatient brat!
How have you been keeping?
I didn't end up getting the bone marrow biopsy, as the paraprotein is a trace reading. Got all my tests done again and still waiting on the urine protein electrophoresis results and the free light serum assay. Haematologist said it could be another month before these come back, making two months in total since completed. Gotta love the HSE in Eire!
The results so far have been normal except the pesky trace IgA lambda paraprotein is still hanging around in the beta 2 region. Doctor said it might take a little more time to leave as it was only 15 weeks since initial test, or it might stay; have to wait and see. So I'm in limbo until November. Could be worse of course, but I'm a total impatient brat!
How have you been keeping?
Re: Trace of tiny IgA lambda monoclonal protein band
Hi everyone,
Wanted to post an update.
I finally found out what happened with the original tests, I was very confused at the start. I put in a complaint to the hospital and the head of the immunology department replied to me by email. She explained that in January I had a thyroid antibody test completed and it displayed a low background activity reading on two separate occasions (does this mean my antibodies appeared low?) and basically 26% of people with this reading have hypogammaglobulinemia and potentially common variable immune deficiency (CVID). My blood sample was reflexed for quantitative immunoglobulins as a result and their policy is that SPEP is automatically performed on all samples after this. Thankfully, I don't have hypogammaglobulinemia. My GP was notified of this but, apparently didn't receive the message!
I'm really annoyed at my GP for not investigating this further, leaving it to me. The immunologist rang my haematologist to explain how tiny the band is and the chance that it may have disappeared upon repeat, especially if I had been sick at that time. I had a neck rash two weeks before and a slightly abnormal/low neutrophil count.
I had the following tests at the start of May: blood tests, skeletal survey and 24 hour urine collection (vile). I didn't have a bone marrow aspiration as the haematologist felt it was unnecessary as the paraprotein was a trace amount.
Skeletal survey: clear
24 hour urine collection, total urine protein: 0.068 g/24 HR (0.050-0.140 g/24 HR)
Urine SPEP and Immunofixation: results not in yet, could take another couple of months as lab is understaffed. It has been nearly 2 months already, so frustrating! Good old Ireland!
Blood tests:
SPEP: The trace of the very small IgA-lambda monoclonal protein band is present in the beta-2 fraction as previously. (Trace g/l)
It had been 15 weeks since the original test and the consultant felt that it might need longer to resolve or it may persist.
My protein and immunoglobulin results from 18th January were:
Total Protein: 67 g/l (60-80 g/l)
Albumin: 41 g/l (35-50 g/l)
IGG: 8.1 g/l (6.0-15.0 g/l)
IGA: 2.58 g/l (0.70-4.00 g/l)
IGM: 1.03 g/l (0.50-2.30 g/l)
Neutrophil count was 1.92 (2.00-7.50 10^9/l)
My protein and immunoglobulin results from 8th May were:
Total Protein: 69 g/l (60-80 g/l)
Albumin: 40 g/l (35-50 g/l)
IGG: 9.0 g/l (6.0-15.0 g/l)
IGA: 2.65 g/l (0.70-4.00 g/l)
IGM: 1.14 g/l (0.50-2.30 g/l)
Neutrophil count was 3.99 (2.00-7.50 10^9/l)
All other results are normal, including beta 2 microglobulin (1.2 mg/l, ref range 0.8-2.4 mg/l). The lab didn't complete a serum free light chain assay, even though they were requested to!
I've been referred back to my GP who will repeat the SPEP and complete the serum free light chain assay in November.
I know there's a chance the paraprotein could persist but could it still be transient? I know none of you have a crystal ball! I was really hoping that it would be gone after 4 months, but no such luck. Everything I read about IgA paraproteins seems to be negative, it gets a bit disheartening.
Thanks and best wishes,
Lucy
Wanted to post an update.
I finally found out what happened with the original tests, I was very confused at the start. I put in a complaint to the hospital and the head of the immunology department replied to me by email. She explained that in January I had a thyroid antibody test completed and it displayed a low background activity reading on two separate occasions (does this mean my antibodies appeared low?) and basically 26% of people with this reading have hypogammaglobulinemia and potentially common variable immune deficiency (CVID). My blood sample was reflexed for quantitative immunoglobulins as a result and their policy is that SPEP is automatically performed on all samples after this. Thankfully, I don't have hypogammaglobulinemia. My GP was notified of this but, apparently didn't receive the message!
I'm really annoyed at my GP for not investigating this further, leaving it to me. The immunologist rang my haematologist to explain how tiny the band is and the chance that it may have disappeared upon repeat, especially if I had been sick at that time. I had a neck rash two weeks before and a slightly abnormal/low neutrophil count.
I had the following tests at the start of May: blood tests, skeletal survey and 24 hour urine collection (vile). I didn't have a bone marrow aspiration as the haematologist felt it was unnecessary as the paraprotein was a trace amount.
Skeletal survey: clear
24 hour urine collection, total urine protein: 0.068 g/24 HR (0.050-0.140 g/24 HR)
Urine SPEP and Immunofixation: results not in yet, could take another couple of months as lab is understaffed. It has been nearly 2 months already, so frustrating! Good old Ireland!
Blood tests:
SPEP: The trace of the very small IgA-lambda monoclonal protein band is present in the beta-2 fraction as previously. (Trace g/l)
It had been 15 weeks since the original test and the consultant felt that it might need longer to resolve or it may persist.
My protein and immunoglobulin results from 18th January were:
Total Protein: 67 g/l (60-80 g/l)
Albumin: 41 g/l (35-50 g/l)
IGG: 8.1 g/l (6.0-15.0 g/l)
IGA: 2.58 g/l (0.70-4.00 g/l)
IGM: 1.03 g/l (0.50-2.30 g/l)
Neutrophil count was 1.92 (2.00-7.50 10^9/l)
My protein and immunoglobulin results from 8th May were:
Total Protein: 69 g/l (60-80 g/l)
Albumin: 40 g/l (35-50 g/l)
IGG: 9.0 g/l (6.0-15.0 g/l)
IGA: 2.65 g/l (0.70-4.00 g/l)
IGM: 1.14 g/l (0.50-2.30 g/l)
Neutrophil count was 3.99 (2.00-7.50 10^9/l)
All other results are normal, including beta 2 microglobulin (1.2 mg/l, ref range 0.8-2.4 mg/l). The lab didn't complete a serum free light chain assay, even though they were requested to!
I've been referred back to my GP who will repeat the SPEP and complete the serum free light chain assay in November.
I know there's a chance the paraprotein could persist but could it still be transient? I know none of you have a crystal ball!
I was really hoping that it would be gone after 4 months, but no such luck. Everything I read about IgA paraproteins seems to be negative, it gets a bit disheartening.Thanks and best wishes,
Lucy
Re: Trace of tiny IgA lambda monoclonal protein band
Hi Lucy,
I didn't see your last few posts until today, so apologies for not replying.
I'm no expert, but your results look fine. Hopefully the trace IgA is just a transient anomaly. Fingers crossed.
No, I'm not raging, maybe I should be. But I'm (now) aware that these people are human. They make mistakes. So I'm no longer complacent, assuming I don't have to get involved. It's made me much more proactive.
My recent bloods were stable, but I've never been offered a Hevylite assay test; from what I can gather, it's something I should be tested for because I'm IgA smoldering multiple myeloma.
Anywho, hope you're given a clean bill of health and receive a nice little surprise in the other department soon
x
I didn't see your last few posts until today, so apologies for not replying.
I'm no expert, but your results look fine. Hopefully the trace IgA is just a transient anomaly. Fingers crossed.
No, I'm not raging, maybe I should be. But I'm (now) aware that these people are human. They make mistakes. So I'm no longer complacent, assuming I don't have to get involved. It's made me much more proactive.
My recent bloods were stable, but I've never been offered a Hevylite assay test; from what I can gather, it's something I should be tested for because I'm IgA smoldering multiple myeloma.
Anywho, hope you're given a clean bill of health and receive a nice little surprise in the other department soon
x-
Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Trace of tiny IgA lambda monoclonal protein band
Hi Lucy and Colm,
This process can certainly make anyone anxious! I live in New York, but have relatives in Ireland, Dublin and Cork mainly.
I hope you are both doing well. Any updates?
Colm / Lucy - I definitely think you should push for more testing. I too am smoldering IgA and immediately started curcumin, I am now taking 8 grams daily.
Lucy - My local hematologist looked at my numbers and sent me for x-ray skeletal study, which showed nothing (I really wonder how effective they are) and that I was most definitely MGUS, so didn't feel I needed the bone marrow biopsy.
This made me anxious / nervous, so I switched to a myeloma specialist, who of course sent me for the bone marrow biopsy and discovered it was between 30-40%, squarely in the mid smoldering range. Be proactive, it does seem to matter.
This process can certainly make anyone anxious! I live in New York, but have relatives in Ireland, Dublin and Cork mainly.
I hope you are both doing well. Any updates?
Colm / Lucy - I definitely think you should push for more testing. I too am smoldering IgA and immediately started curcumin, I am now taking 8 grams daily.
Lucy - My local hematologist looked at my numbers and sent me for x-ray skeletal study, which showed nothing (I really wonder how effective they are) and that I was most definitely MGUS, so didn't feel I needed the bone marrow biopsy.
This made me anxious / nervous, so I switched to a myeloma specialist, who of course sent me for the bone marrow biopsy and discovered it was between 30-40%, squarely in the mid smoldering range. Be proactive, it does seem to matter.
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Trace of tiny IgA lambda monoclonal protein band
Hi Eileen,
Sorry to hear you've joined the smoldering club.
Did your new consultant suggest a CT or MRI scan, in addition to any x-rays you may have received?
My tests have remained stable, so I'm now tested every four months (instead of every three).
I've been taking curcumin since I was diagnosed with smoldering multiple myeloma a year and a half ago. The merits are debatable, but I'll keep taking it unless/until it produces some derogatory effect.
'Be proactive', yes indeed, and trust your instincts.
Long may we smoulder
Sorry to hear you've joined the smoldering club.
Did your new consultant suggest a CT or MRI scan, in addition to any x-rays you may have received?
My tests have remained stable, so I'm now tested every four months (instead of every three).
I've been taking curcumin since I was diagnosed with smoldering multiple myeloma a year and a half ago. The merits are debatable, but I'll keep taking it unless/until it produces some derogatory effect.
'Be proactive', yes indeed, and trust your instincts.
Long may we smoulder
-
Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
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