Hi all
I'm wondering if anyone can share how long it takes for relapse to show in the more routine blood test results.
Two months ago, my SPEP showed IgA lambda by IFE. Light chains were normal. This was after 3 years in remission. My doctor said it could be a 'transient reading' and to retest in 8 weeks.
Well, I had my bloods yesterday and got my more routine results today. Pretty much everything was very normal and not too different from previously - albumin, ESR, LDH, WBC,RBC, HB, LFT, total protein - all normal. On diagnosis, my abnormal results were very low albumin, high ESR, high ALP and low total protein (due to huge urine protein loss), but these were all fine.
My light chain and paraprotein results won't come through until next week. I feel fine, but can't help feeling that my results next week will show otherwise.
Alice
Forums
Re: How long for relapse to show in routine blood tests?
Hi Alice,
Congrats on your response thus far.
You are kind of mixing up test names in your question: "my SPEP showed IgA lambda by IFE ... ".
An IFE is a "qualitative" test that tells you if you have any monoclonal proteins present and what type they are ... but it doesn't tell you the amount of the monoclonal protein . I am assuming this is the test you are referring to that you had 8 weeks ago. An SPEP is a separate "quantitative" test that measures the amount of monoclonal protein in your blood. It sounds like you are waiting on the SPEP test results
I'm assuming that all of your earlier IFEs up until 8 weeks ago showed that no monoclonal proteins were present, right?
Did they re-run a new IFE when you just got re-tested? If so, did the latest IFE test still show the presence of IgA lambda, or did it disappear? Or, are you also waiting on the results of that test?
Also, IgA type multiple myeloma can be a bit tricky to monitor with conventional test methods (other proteins can interfere with the measurement of the IgA itself). So, your doc may very well be right in that it could be a transient reading (remember, I'm not a doc ... so I'm just giving my layman's opinion here).
Congrats on your response thus far.
You are kind of mixing up test names in your question: "my SPEP showed IgA lambda by IFE ... ".
An IFE is a "qualitative" test that tells you if you have any monoclonal proteins present and what type they are ... but it doesn't tell you the amount of the monoclonal protein . I am assuming this is the test you are referring to that you had 8 weeks ago. An SPEP is a separate "quantitative" test that measures the amount of monoclonal protein in your blood. It sounds like you are waiting on the SPEP test results
I'm assuming that all of your earlier IFEs up until 8 weeks ago showed that no monoclonal proteins were present, right?
Did they re-run a new IFE when you just got re-tested? If so, did the latest IFE test still show the presence of IgA lambda, or did it disappear? Or, are you also waiting on the results of that test?
Also, IgA type multiple myeloma can be a bit tricky to monitor with conventional test methods (other proteins can interfere with the measurement of the IgA itself). So, your doc may very well be right in that it could be a transient reading (remember, I'm not a doc ... so I'm just giving my layman's opinion here).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How long for relapse to show in routine blood tests?
Hi Multibilly
Thanks so much for the response. Yes, I'm probably mixing up terminology. I have my bloods tested by two hospitals. My local hospital carries out a protein electrophoresis. From this, I received today my total protein figure (which was normal). It then takes a week to get the results of my immunoglobulins and paraproteins, if any. I very rarely see these results.
At the same time, a serum sample is sent off to my "overseeing" hospital which dictates my treatment regimen because of my amyloidosis. From this, I am emailed my light chain results, together with paraprotein results. Usually, the paraprotein column reads "none ", but 8 weeks ago, it read "IgA lambda" and "IFE" in the amount column.
I was under the impression that IgA molecules were large and easy to read, but I am very happy to be corrected on this point!
Thanks so much for the response. Yes, I'm probably mixing up terminology. I have my bloods tested by two hospitals. My local hospital carries out a protein electrophoresis. From this, I received today my total protein figure (which was normal). It then takes a week to get the results of my immunoglobulins and paraproteins, if any. I very rarely see these results.
At the same time, a serum sample is sent off to my "overseeing" hospital which dictates my treatment regimen because of my amyloidosis. From this, I am emailed my light chain results, together with paraprotein results. Usually, the paraprotein column reads "none ", but 8 weeks ago, it read "IgA lambda" and "IFE" in the amount column.
I was under the impression that IgA molecules were large and easy to read, but I am very happy to be corrected on this point!
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AliceNorth
Re: How long for relapse to show in routine blood tests?
As I understand it, it's not the size of the IgA molecule that is the challenge. It's the fact that other proteins can show up where one expects to find the IgA molecules in the lab test. This can then potentially mask the presence of the IgA molecules or make the IgA measurements inaccurate.If you really want to get into the nuts and bolts of why IgA can sometimes be difficult to measure accurately, I suggest you read the brochure I've attached, "Hevylite - A novel test for measurement of Hevylite Myeloma monoclonal immunoglobulins",
and then watch the first 4-5 minutes of this video:
HevyliteBrochure.pdf- (734.47 KiB) Downloaded 88 times
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How long for relapse to show in routine blood tests?
I realized we kind of went off on a tangent on the IgA measurement thing.
Getting back to your original concern ....
Rather than assume you are relapsing and speculate about it, I might suggest just holding tight till you get all your results in. You and I both know that is easier said than done, but it is a worthy thing to try to do
Getting back to your original concern ....
Rather than assume you are relapsing and speculate about it, I might suggest just holding tight till you get all your results in. You and I both know that is easier said than done, but it is a worthy thing to try to do
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How long for relapse to show in routine blood tests?
Purely anecdotal I realize, but I have had a'false' relapses twice, and both times they were about a year before the actual relapse started (2008, 2013). Counts appeared to be rising, only to return to normal for about 12 more months.
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: How long for relapse to show in routine blood tests?
Thanks so much Multibilly!
I haven't been able to access the video from my iPad so will do so soon from a PC. I did read the other two links - thanks.
I'm still a little confused. My take is that it's not so much that it's difficult to establish the IgA per se, but quantification is often the issue. In other words, a false positive in itself would be unusual?
Anyway, as you quite rightly say, speculating does no good, but I happen to be pretty much an expert these days
And thanks Allen - how strange that it happened twice!
I will keep you updated.
Alice
I haven't been able to access the video from my iPad so will do so soon from a PC. I did read the other two links - thanks.
I'm still a little confused. My take is that it's not so much that it's difficult to establish the IgA per se, but quantification is often the issue. In other words, a false positive in itself would be unusual?
Anyway, as you quite rightly say, speculating does no good, but I happen to be pretty much an expert these days
And thanks Allen - how strange that it happened twice!
I will keep you updated.
Alice
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AliceNorth
Re: How long for relapse to show in routine blood tests?
I'm in a low level relapse. Detectable m-spike since March, but it has been going up very slow. Appeared as a 1.7 g/L (0.17 g/dL) and was at 2.9 (0.29 g/dL) at my last follow up (I go every two months). So it has not even doubled yet, which my doctor tells me is good.
You are right -- I heard about the transient possibility. That is why doctors always look for a trend in you bloodwork before making any decisions (i.e. going up, staying the same, disappearing). I believe it is not even considered a full relapse until M-spike reaches 5 g/L (0.5 g/dL), so I'm still below that.
You are right -- I heard about the transient possibility. That is why doctors always look for a trend in you bloodwork before making any decisions (i.e. going up, staying the same, disappearing). I believe it is not even considered a full relapse until M-spike reaches 5 g/L (0.5 g/dL), so I'm still below that.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: How long for relapse to show in routine blood tests?
Just a quick clarification to Lys2012's posting ... Technically, relapse occurs when a patient's serum M-spike increases by 25 percent above its lowest value. However, the increase must be at least 0.5 g/dL (5 g/L).
So, for someone whose serum M-spike went to 0 as a result of treatment, relapse will (technically) take place when the M-spike goes above 0.5 g/dL (5 g/L).
Even though this is the technical definition of relapse, it is up to patients and their physicians to decide whether they want to start treatment again either before or after that point.
As you might expect, there are additional details to the definition of relapse for patients who are non-secretory (have no M-spike) or whose disease is tracked primarily using their free light chain levels.
For example, for patients whose disease is tracked using their free light chain levels, the 25 percent rule also applies, but the increase in the involved free light chain (kappa or lambda, depending on the type of myeloma a patient has) has to be at least 10 mg/L.
So, for someone whose serum M-spike went to 0 as a result of treatment, relapse will (technically) take place when the M-spike goes above 0.5 g/dL (5 g/L).
Even though this is the technical definition of relapse, it is up to patients and their physicians to decide whether they want to start treatment again either before or after that point.
As you might expect, there are additional details to the definition of relapse for patients who are non-secretory (have no M-spike) or whose disease is tracked primarily using their free light chain levels.
For example, for patients whose disease is tracked using their free light chain levels, the 25 percent rule also applies, but the increase in the involved free light chain (kappa or lambda, depending on the type of myeloma a patient has) has to be at least 10 mg/L.
Re: How long for relapse to show in routine blood tests?
Many thanks for this MB - very useful!
Well today, I was emailed my light chain results super early, which is unheard of. This is in respect of bloods taken on 8 September.
Kappa is 13.6 mg/l and lambda is 15.8 with a ratio of 0.86. Normal. My paraprotein [M-spike] results are not yet available and won't be until next week. This compares to:
July 10th - kappa 13.6 and lambda 13.0 - IgA lambda IFE (ie trace reading)
June 2nd - kappa 13.7 and lambda 15.9 - No PP detected
Talk about keeping an idiot in suspense!
Well today, I was emailed my light chain results super early, which is unheard of. This is in respect of bloods taken on 8 September.
Kappa is 13.6 mg/l and lambda is 15.8 with a ratio of 0.86. Normal. My paraprotein [M-spike] results are not yet available and won't be until next week. This compares to:
July 10th - kappa 13.6 and lambda 13.0 - IgA lambda IFE (ie trace reading)
June 2nd - kappa 13.7 and lambda 15.9 - No PP detected
Talk about keeping an idiot in suspense!
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AliceNorth
15 posts
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