When I began this journey, my IgG was 4390, where the IgA and IgM were low. Understandable when your bone marrow is 85% myeloma cells.
Chemo and the transplant knocked everything into the normal range; I am in 'complete remission.' and on Revlimid maintenance (I'm high risk).
The last six months are showing a very slow, mild creep up of the IgG numbers, and down for the other two, all still well within 'normal.' lab values for all of 'em, but the trend is pretty obvious even to me: consistent and steady, if in relatively small increments.
My current numbers are:
IgG: 1120 mg/dl
IgA: 255 mg/dl
IgM/Plas: 46.
So: very normal, all three. But the IgG is going up consistently (and, as I mentioned, slowly), and the other two are going down, just as slowly.
The only numbers headed close to 'not normal' are the IgM/PLAS numbers. I''m really 'low normal' for that, but still 'normal.'
Now I'm tickled to still be 'normal' in everything after a year and a half post SCT. It's been pretty nice, all in all. But given that things are creeping in the wrong direction, when do I start getting nervous?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: IgG creeping up - when do I get worried?
Hi Diana!
I can understand why your numbers are worrying you. If it was just the IgG going up, it might not be as much a cause for concern (although "concern" may be too strong a word). But to have the other immunoglobulin numbers going down at the same time does suggest that something ... undesirable ... may be going on.
Before we jump to any conclusions, however, can you tell us a few more things? For example, you say you're still in complete remission. I assume that means that your M-spike is still 0, right?
Also, do you have your free light chain levels checked regularly and, if so, what is happening with them?
Finally, what about numbers like your creatinine, hemoglobin, and serum calcium? Are they changing at all?
I know it's always tempting to focus on just a few numbers, but my sense from reading the postings here in the forum from the different doctors who help out here is that they usually prefer to draw conclusions on as broad a set of data as possible.
I can understand why your numbers are worrying you. If it was just the IgG going up, it might not be as much a cause for concern (although "concern" may be too strong a word). But to have the other immunoglobulin numbers going down at the same time does suggest that something ... undesirable ... may be going on.
Before we jump to any conclusions, however, can you tell us a few more things? For example, you say you're still in complete remission. I assume that means that your M-spike is still 0, right?
Also, do you have your free light chain levels checked regularly and, if so, what is happening with them?
Finally, what about numbers like your creatinine, hemoglobin, and serum calcium? Are they changing at all?
I know it's always tempting to focus on just a few numbers, but my sense from reading the postings here in the forum from the different doctors who help out here is that they usually prefer to draw conclusions on as broad a set of data as possible.
Re: IgG creeping up - when do I get worried?
Thank you for the reply (and thank you to whoever changed the topic line; MUCH better!)
My light chains are also going up:
Kappa: 29
Lambda:26
Ratio: 1.1
this also reflects a trend upwards. Each month, both the light chains and the ratio sneak up just a wee bit.
Everything else is holding pretty steady / normal and, frankly, I'm pretty darned healthy, all in all. I have had a history, since I was in my twenties, of getting pneumonia every time I get bronchitis, and I get bronchitis every time I get a cold, and I get a cold once a year. Like clockwork.
It's just get a cold, get bronchitis, get pneumonia, get over it. I never got sick enough for hospitalization. Just six weeks of being miserable and getting on with things anyway.
Except for these last two years. I haven't had so much as a cold or an earache. No infections, no flu, nuttin. Not even hayfever. It's been rather nice, all things considered, in an "Other than that, Mrs. Lincoln, how was the play?" sort of way.
ANYway ... yeah. my numbers are worrying me. I need someone to explain to me when I should be yelling at my doctor to LOOK at these. Because he absolutely is the 'pat the patient on the head and send her off with a lollipop' sort of guy.
... and I am stuck with him. Don't get me wrong, I love Kaiser for many reasons. But 'choice of physicians' isn't one of 'em.
My light chains are also going up:
Kappa: 29
Lambda:26
Ratio: 1.1
this also reflects a trend upwards. Each month, both the light chains and the ratio sneak up just a wee bit.
Everything else is holding pretty steady / normal and, frankly, I'm pretty darned healthy, all in all. I have had a history, since I was in my twenties, of getting pneumonia every time I get bronchitis, and I get bronchitis every time I get a cold, and I get a cold once a year. Like clockwork.
It's just get a cold, get bronchitis, get pneumonia, get over it. I never got sick enough for hospitalization. Just six weeks of being miserable and getting on with things anyway.
Except for these last two years. I haven't had so much as a cold or an earache. No infections, no flu, nuttin. Not even hayfever. It's been rather nice, all things considered, in an "Other than that, Mrs. Lincoln, how was the play?" sort of way.
ANYway ... yeah. my numbers are worrying me. I need someone to explain to me when I should be yelling at my doctor to LOOK at these. Because he absolutely is the 'pat the patient on the head and send her off with a lollipop' sort of guy.
... and I am stuck with him. Don't get me wrong, I love Kaiser for many reasons. But 'choice of physicians' isn't one of 'em.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: IgG creeping up - when do I get worried?
Diana,
I have been wrestling with this same issue over the last year. As we all learn, sometimes we will have to be our own advocate with our health care, and when lab numbers start going the wrong direction, do I need to stand up and make some noise, or sit back, not panic, and let my medical team do their thing without me being a nuisance?
It was about two years ago that I came out of complete remission when I got my first positive immunofixation result after my stem cell transplant. Since then, like many of us, I have been anticipating and watching my lab results closely. I became much more of a numbers watcher. Like when I got the positive immunofixation I knew that with myeloma someday all good things come to an end, and I should expect that I would see some indication of myeloma returning in my other labs.
I am a test and evaluation engineer for my profession and l look for trends in numbers. Sure enough, I started to see small but consistent increases in my kappa light chains last summer and not the usual up and down variation in the trend line graph going back over the years. Though all my lab result numbers were still in the normal range, I was afraid the trend indicated kappa light chain at least would go above the normal soon, and it did.
So what to do? Time to panic and jump up and down? My oncologist looks at light chains as a leading indicator of disease status and progression, so he took notice of this right away. The answer was to add dexamethasone to my maintenance therapy and, in one cycle, my kappa light chain levels went to the bottom end of the normal range. That lasted for a while, but then I stopped dexamethasone because of blood pressure problems a few months back, and the numbers eventually started coming up again on just 25mg Revlimid alone. Then I had to stop Revlimid because of low WBC.
Now what to do again? I was looking at doing a Kyprolis (carfilzomib) trial, but did meet the screening requirements initially, and that has delayed things. As the trial is out for now, I will be meeting with my oncologist soon to decide what needs to be done at this time now.
I did a lot of labs as part of the screening process for the trial and the good news is though my kappa light chains are somewhere above the 1000 mark, the last IgG I saw was still in the normal range. The PET scan came out excellent and the bone marrow biopsy was less than <10% involved. Looking at the big picture, including all my lab results, I am not in jump up and down mode right now, but I am waiting to see how my next appointment goes.
It has been a recent topic of discussion on the Beacon if it makes sense as a treatment strategy to try and always have a treatment goal of driving the disease into remission or lab numbers into the normal range, or is this not best or a realistic approach to take – especially when considering impact to quality of life? Something I think about a lot, especially as I suspect there are those doctors who are going to want to always treat very aggressively and those who will not, so what is the right answer?
MY GF ran the New York marathon the year I got my SCT to raise money for myeloma research, and she met a man who had myeloma for a number of years and was running the marathon to raise money as well. I recall he was in some kind of maintenance therapy, had an M-spike, and other labs that indicated disease was present. He seemed to be in a status of maintaining some level of stable disease while still able to train for and run a marathon.
I look at his case and see that having an M-spike and out of normal range labs numbers is always a concern but not necessary a reason to panic and jump up and down about. Another consideration is being high risk or not. You are high risk, I am not, so I can see why the "lab numbers and what they mean for me" conundrum is more challenging for you.
My rambling probably did not help you much. But though I am not a doctor, I think at this time – like you say – your numbers are still very good and nothing drastic is going to happen in the near term. But, like you, I am thinking a lot more now about these lab numbers and what they mean for me, and I do not always feel I have a good grasp or understanding of that.
Best wishes to you and I hope all continues to go well for you,
Eric
I have been wrestling with this same issue over the last year. As we all learn, sometimes we will have to be our own advocate with our health care, and when lab numbers start going the wrong direction, do I need to stand up and make some noise, or sit back, not panic, and let my medical team do their thing without me being a nuisance?
It was about two years ago that I came out of complete remission when I got my first positive immunofixation result after my stem cell transplant. Since then, like many of us, I have been anticipating and watching my lab results closely. I became much more of a numbers watcher. Like when I got the positive immunofixation I knew that with myeloma someday all good things come to an end, and I should expect that I would see some indication of myeloma returning in my other labs.
I am a test and evaluation engineer for my profession and l look for trends in numbers. Sure enough, I started to see small but consistent increases in my kappa light chains last summer and not the usual up and down variation in the trend line graph going back over the years. Though all my lab result numbers were still in the normal range, I was afraid the trend indicated kappa light chain at least would go above the normal soon, and it did.
So what to do? Time to panic and jump up and down? My oncologist looks at light chains as a leading indicator of disease status and progression, so he took notice of this right away. The answer was to add dexamethasone to my maintenance therapy and, in one cycle, my kappa light chain levels went to the bottom end of the normal range. That lasted for a while, but then I stopped dexamethasone because of blood pressure problems a few months back, and the numbers eventually started coming up again on just 25mg Revlimid alone. Then I had to stop Revlimid because of low WBC.
Now what to do again? I was looking at doing a Kyprolis (carfilzomib) trial, but did meet the screening requirements initially, and that has delayed things. As the trial is out for now, I will be meeting with my oncologist soon to decide what needs to be done at this time now.
I did a lot of labs as part of the screening process for the trial and the good news is though my kappa light chains are somewhere above the 1000 mark, the last IgG I saw was still in the normal range. The PET scan came out excellent and the bone marrow biopsy was less than <10% involved. Looking at the big picture, including all my lab results, I am not in jump up and down mode right now, but I am waiting to see how my next appointment goes.
It has been a recent topic of discussion on the Beacon if it makes sense as a treatment strategy to try and always have a treatment goal of driving the disease into remission or lab numbers into the normal range, or is this not best or a realistic approach to take – especially when considering impact to quality of life? Something I think about a lot, especially as I suspect there are those doctors who are going to want to always treat very aggressively and those who will not, so what is the right answer?
MY GF ran the New York marathon the year I got my SCT to raise money for myeloma research, and she met a man who had myeloma for a number of years and was running the marathon to raise money as well. I recall he was in some kind of maintenance therapy, had an M-spike, and other labs that indicated disease was present. He seemed to be in a status of maintaining some level of stable disease while still able to train for and run a marathon.
I look at his case and see that having an M-spike and out of normal range labs numbers is always a concern but not necessary a reason to panic and jump up and down about. Another consideration is being high risk or not. You are high risk, I am not, so I can see why the "lab numbers and what they mean for me" conundrum is more challenging for you.
My rambling probably did not help you much. But though I am not a doctor, I think at this time – like you say – your numbers are still very good and nothing drastic is going to happen in the near term. But, like you, I am thinking a lot more now about these lab numbers and what they mean for me, and I do not always feel I have a good grasp or understanding of that.
Best wishes to you and I hope all continues to go well for you,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: IgG creeping up - when do I get worried?
My myeloma type is IgA kappa with a t(4:14), which puts me in intermediate / high risk category, depending on who you read. I know it's not the same as yours, but my experience may help you with another perspective.
Anyway, my IgA and kappa numbers had been in the normal ranges for about 3 years following a SCT (I was on Revlimid only maintenance), but started going up slowly when I developed an acute upper respiratory infection. My doctor thought the numbers advancement could be the result of the infection, but they continued to rise slowly beyond normal ranges even after the infection was gone.
I then went to a myeloma specialist who recommended we continue to watch and wait. He even gave me a benchmark as to when we should consider other treatment. His thinking was that it's a good idea to get as much mileage out of a drug before you dump it for something else, and the something else may produce more side effects, affecting quality of life. After all, there are only so many drugs available to us, and no cure, so what's the hurry in changing if the changes are slow and there are no CRAB symptoms and no other tests showing any real concerns.
I had to agree. So we continued with Revlimid for another six months before we decided it was time to switch to CyBorD (cyclophosphamide, Velcade, and dexamethasone). This knocked my numbers back down quickly, but the side effects (fatigue mainly) are a bit greater, and the quality of my life went down a degree or two but still isn't bad.
So that's my experience thus far. I never really worried much about the numbers going up because it was very slow, I had a good idea of the next treatment regimen and side effects, I sought a multiple myeloma specialist's opinion and I got a benchmark as to when to take action.
Good luck with your treatment decisions. Getting good information helps the worry factor.
Anyway, my IgA and kappa numbers had been in the normal ranges for about 3 years following a SCT (I was on Revlimid only maintenance), but started going up slowly when I developed an acute upper respiratory infection. My doctor thought the numbers advancement could be the result of the infection, but they continued to rise slowly beyond normal ranges even after the infection was gone.
I then went to a myeloma specialist who recommended we continue to watch and wait. He even gave me a benchmark as to when we should consider other treatment. His thinking was that it's a good idea to get as much mileage out of a drug before you dump it for something else, and the something else may produce more side effects, affecting quality of life. After all, there are only so many drugs available to us, and no cure, so what's the hurry in changing if the changes are slow and there are no CRAB symptoms and no other tests showing any real concerns.
I had to agree. So we continued with Revlimid for another six months before we decided it was time to switch to CyBorD (cyclophosphamide, Velcade, and dexamethasone). This knocked my numbers back down quickly, but the side effects (fatigue mainly) are a bit greater, and the quality of my life went down a degree or two but still isn't bad.
So that's my experience thus far. I never really worried much about the numbers going up because it was very slow, I had a good idea of the next treatment regimen and side effects, I sought a multiple myeloma specialist's opinion and I got a benchmark as to when to take action.
Good luck with your treatment decisions. Getting good information helps the worry factor.
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Norm - Name: Norm
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Aug-2010
- Age at diagnosis: 59
Re: IgG creeping up - when do I get worried?
Hi Diana,
It would appear that a number of us are having a similar experience.
So that we know we're on the same page, here's a brief overview of my numbers.
In January of 2013, all my numbers were about as bad as it gets (though, admittedly, I've seen some that were in fact worse!). My RBC, WBC, HGB, HCT, platelets, and neutrophils were all well below normal. I had 88% myeloma plasma cells [del(17p), so very high risk], don't know exactly what my M-spike was, but my oncologist has told me it was extremely high. I also don't know exactly what my IgG, kappa light chains, or kappa / lambda ratio were, but, again, very off.
I got an ASCT 2 years ago, did about 6 months of follow up with Velcade, and then discontinued all myeloma meds. Until 4 months ago, my IgG, IgA, and IgM were within normal ranges, my M-spike was not measurable, and, with the minor exception of my RBC, all counts were normal. Then I got my reports 3 months ago. The good news is that my CBC, again with the exception of my RBC, were all normal. The bad news is that my IGG had been steadily increasing and is now 1260. My IgA and IgM had been steadily decreasing, 50.1 and 28.2, respectively.
The Immunoglobulin counts have been a source of concern, but most disconcerting is that 4 months ago my M-spike became measurable. Yes, it was only 0.1 g/dL (1 g/L), but, given that it hadn't been measurable for so long, it was disappointing. My latest M-spike increased to 0.14 g/dL. By many standards, not a cause for concern. But when considered within the context of my well below normal IgA and IgM counts, and my increasing IgG – not to mention back pain that is very reminiscent of lesions, combined with severe lethargy – I am concerned.
On the positive side of the ledger, my kappa [I have IgG kappa light chain myeloma] is 7.3, my lambda is 7.4, and the ratio is 0.99 – all well within normal ranges! So, why am I so depleted, and why do I have such mid-back pain? Despite all of this, my oncologist is not inclined to resume treatment. I would agree except for how crappy I'm feeling.
Diane, like you, I have Kaiser, and I agree, there is much to recommend them. Fortunately, I originally got a newly graduated hematologist / oncologist who was fresh, excited, and truly caring. Unfortunately, the Kaiser system has slowly overwhelmed him to such an extent that he no longer can afford to spend much time on appointments, nor does he have much time for questions. Combine that with Kaiser's usual slower-than-molasses appointment wait-time for specialty clinics (I'm still waiting for an MRI for my back), and their hopelessly mired bureaucratic billing system, and, well, I'm sure you know where I'm headed ...
I'll be watching with great interest to see if you get a specific number for your IgG that would trigger concern.
Aloha
Daniel
It would appear that a number of us are having a similar experience.
So that we know we're on the same page, here's a brief overview of my numbers.
In January of 2013, all my numbers were about as bad as it gets (though, admittedly, I've seen some that were in fact worse!). My RBC, WBC, HGB, HCT, platelets, and neutrophils were all well below normal. I had 88% myeloma plasma cells [del(17p), so very high risk], don't know exactly what my M-spike was, but my oncologist has told me it was extremely high. I also don't know exactly what my IgG, kappa light chains, or kappa / lambda ratio were, but, again, very off.
I got an ASCT 2 years ago, did about 6 months of follow up with Velcade, and then discontinued all myeloma meds. Until 4 months ago, my IgG, IgA, and IgM were within normal ranges, my M-spike was not measurable, and, with the minor exception of my RBC, all counts were normal. Then I got my reports 3 months ago. The good news is that my CBC, again with the exception of my RBC, were all normal. The bad news is that my IGG had been steadily increasing and is now 1260. My IgA and IgM had been steadily decreasing, 50.1 and 28.2, respectively.
The Immunoglobulin counts have been a source of concern, but most disconcerting is that 4 months ago my M-spike became measurable. Yes, it was only 0.1 g/dL (1 g/L), but, given that it hadn't been measurable for so long, it was disappointing. My latest M-spike increased to 0.14 g/dL. By many standards, not a cause for concern. But when considered within the context of my well below normal IgA and IgM counts, and my increasing IgG – not to mention back pain that is very reminiscent of lesions, combined with severe lethargy – I am concerned.
On the positive side of the ledger, my kappa [I have IgG kappa light chain myeloma] is 7.3, my lambda is 7.4, and the ratio is 0.99 – all well within normal ranges! So, why am I so depleted, and why do I have such mid-back pain? Despite all of this, my oncologist is not inclined to resume treatment. I would agree except for how crappy I'm feeling.
Diane, like you, I have Kaiser, and I agree, there is much to recommend them. Fortunately, I originally got a newly graduated hematologist / oncologist who was fresh, excited, and truly caring. Unfortunately, the Kaiser system has slowly overwhelmed him to such an extent that he no longer can afford to spend much time on appointments, nor does he have much time for questions. Combine that with Kaiser's usual slower-than-molasses appointment wait-time for specialty clinics (I'm still waiting for an MRI for my back), and their hopelessly mired bureaucratic billing system, and, well, I'm sure you know where I'm headed ...
I'll be watching with great interest to see if you get a specific number for your IgG that would trigger concern.
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: IgG creeping up - when do I get worried?
Thank you. I have sent an e-mail to my oncologist (I did that on Friday, actually), and I'm waiting for a response.
I understand that my doctor is overwhelmed; I really do. I understand also that the treatment he has me on is, as far as I can tell, the right one.
But, I'm the one with multiple myeloma. I'm the one who has to deal with the consequences if something falls through the cracks, and if everybody else is too busy to deal with it, I'd better NOT be!
So if I have to act like that irritating woman in Luke 18:1-5, then, by cracky, I will.
(Never mind the religion; it's a fun little story.)
I understand that my doctor is overwhelmed; I really do. I understand also that the treatment he has me on is, as far as I can tell, the right one.
But, I'm the one with multiple myeloma. I'm the one who has to deal with the consequences if something falls through the cracks, and if everybody else is too busy to deal with it, I'd better NOT be!
So if I have to act like that irritating woman in Luke 18:1-5, then, by cracky, I will.
(Never mind the religion; it's a fun little story.)
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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