I am going in to see my oncologist on Monday and will be discussing the lab results below and what to do next in my treatment. I have some questions, though, that would be helpful to get some feedback on before my visit so I can prepare.
For some background, I have IgG kappa myeloma. I had been taking 25 mg Revlimid for maintenance therapy but have been off Revlimid since March 9, 2015 because of a low neutrophils count of 675/mcL. I have been retesting CBC every Monday the last three weeks and the last neutrophils was 1100/mcL on March 23.
I also had been on dexamethasone but stopped on January 5, 2015 because of side effect problems.
It will be interesting to see if I can restart Revlimid again, almost certainly with dexamethasone, or if I will need to switch to another drug for maintenance therapy, probably with dexamethasone too.
Another odd things that has developed is the increasing appearance of nucleated red blood cells in my CBC of levels up to 0.5.
I am a bit confused by the low IgG levels on December 2, 2014 and December 13, 2014 and why they may have started dropping then. I was on 25 mg Revlimid and 20 mg dexamethasone as this time. Could that drive IgG low?
When I stopped dexamethasone on January 5th, the IgG level came right back up and shows an increasing trend.
My light chain test clearly shows that since stopping dexamethasone on January 5th that 25 mg Revlimid has not been that effective by itself. I see that IgG has come up with kappa free light chains, but IgG is still in the normal range for now.
Is it possible that I may have developed a light chain myeloma clone, or is it just that kappa light chains will increase first before IgG goes out of range and these numbers are just indicating a normal typical relapse of IgG kappa myeloma?
Any feedback would be greatly appreciated and I realize that I need to work with my oncologist to decide what needs to be done next. I like to prepare myself for what to discuss, though, before my appointments and have some time to think things over.
Oct 20 Dec 02 Dec 13 Feb 06 Mar 16
2014 2014 2014 2015 2015
IgG 775 556 L 566 L 854 1170
IgA 179 141 143 133 121
IgM 18 L <17 L 31 L <18 L <18 L
Kappa 8 14 22 H 196 H 582 H
Lambda 10 8 13 21 9
Kappa/
Lambda 0.8 1.8 H 1.7 9.3 H 64.7 H
Forums
Re: Rising kappa FLCs & varying IgG levels - meaning?
What is your M spike doing? Trending up also?
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Rising kappa FLCs & varying IgG levels - meaning?
Hi Eric,
I might suggest a couple of things to help analyze this a bit more easily:
I might suggest a couple of things to help analyze this a bit more easily:
- Graph the results. It's easier to see what's going on that way. When I did this, the IgG and kappa free light chain level look like they are tracking pretty closely (see the graph below).
- Maybe go back in time with a few more lab results to see the longer-term trends.
- Also, as Blair has suggested, look at your M-spike during this period.
- EricIgGFLCs.png (15.78 KiB) Viewed 1763 times
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rising kappa FLCs & varying IgG levels - meaning?
Thanks MultiBilliy.
Looking at it that way, the correlation between kappa free light chains and IgG since I stopped dexamethasone (and then stopped Revlimid these last 3 weeks) is clear, and my myeloma is not going to be stable without treatment.
I am still curious why the IgG dipped to below normal levels shortly before I stopped the dexamethasone when it had been stable for two years on Revlimid and dexamethasone. Even though my IgG is in normal range now, the trajectory indicates it will be out of range if nothing is done soon.
If people wonder why dexamethasone is added to their treatment, this is a good example why.
Looking at it that way, the correlation between kappa free light chains and IgG since I stopped dexamethasone (and then stopped Revlimid these last 3 weeks) is clear, and my myeloma is not going to be stable without treatment.
I am still curious why the IgG dipped to below normal levels shortly before I stopped the dexamethasone when it had been stable for two years on Revlimid and dexamethasone. Even though my IgG is in normal range now, the trajectory indicates it will be out of range if nothing is done soon.
If people wonder why dexamethasone is added to their treatment, this is a good example why.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Rising kappa FLCs & varying IgG levels - meaning?
Eric,
That's why I think it would be good to also look at your m-spike during this same period. It could just be a normal fluctuation in the IgG. But I also believe that one can have paresis (i.e., reduced levels, suppression) of an involved immunoglobulin (in your case IgG), and not just paresis with one or more of the uninvolved immunoglobulins.
Your quantified IgG test results measures the sum of your normal and abnormal IgG, so you really don't know which of these two IgG components is dipping without first knowing your M-spike.
That's why I think it would be good to also look at your m-spike during this same period. It could just be a normal fluctuation in the IgG. But I also believe that one can have paresis (i.e., reduced levels, suppression) of an involved immunoglobulin (in your case IgG), and not just paresis with one or more of the uninvolved immunoglobulins.
Your quantified IgG test results measures the sum of your normal and abnormal IgG, so you really don't know which of these two IgG components is dipping without first knowing your M-spike.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rising kappa FLCs & varying IgG levels - meaning?
Eric,
As you mentioned, some patients progress with "light chain escape," where they previously had an intact M spike and now progression is only seen with the serum free light chain. That does not appear to be your case. As you have graphed out, it looks like the serum free light chain abnormality is a "leading indicator". This is one of the reasons that we recommend checking regularly (like you have been doing).
As to your question about why you had low IgG in December, it could possibly be explained as a side effect of dexamethasone. While I don't know the details, you stated that you stopped dex in January secondary to side effects. It's possible in December your immune system was having side effects related to dex, which Multibilly accurately described as paresis of normal immunoglobulins. The other possibility is that this paresis, or low normal immunoglobulins, was a very early sign of progressing myeloma even though we couldn't see it in your blood work otherwise.
One final point is that I like to get the quantitative immunoglobulins, the SPEP (M-spike) and serum free light chains as they all add data that can help us figure out what is going on in a patient where we are worried about progression.
I wish you the best,
Jlk
As you mentioned, some patients progress with "light chain escape," where they previously had an intact M spike and now progression is only seen with the serum free light chain. That does not appear to be your case. As you have graphed out, it looks like the serum free light chain abnormality is a "leading indicator". This is one of the reasons that we recommend checking regularly (like you have been doing).
As to your question about why you had low IgG in December, it could possibly be explained as a side effect of dexamethasone. While I don't know the details, you stated that you stopped dex in January secondary to side effects. It's possible in December your immune system was having side effects related to dex, which Multibilly accurately described as paresis of normal immunoglobulins. The other possibility is that this paresis, or low normal immunoglobulins, was a very early sign of progressing myeloma even though we couldn't see it in your blood work otherwise.
One final point is that I like to get the quantitative immunoglobulins, the SPEP (M-spike) and serum free light chains as they all add data that can help us figure out what is going on in a patient where we are worried about progression.
I wish you the best,
Jlk
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Rising kappa FLCs & varying IgG levels - meaning?
Thanks Dr. Kaufman,
I had my visit today with my oncologist. We discussed carfilzomib (Kyprolis) and the possibility of enrolling on the SWOG S1304 clinical trial. I am looking it over now. If I do not enroll in the trial, we are still looking at carfilzomib.
I had my visit today with my oncologist. We discussed carfilzomib (Kyprolis) and the possibility of enrolling on the SWOG S1304 clinical trial. I am looking it over now. If I do not enroll in the trial, we are still looking at carfilzomib.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Rising kappa FLCs & varying IgG levels - meaning?
Hi Eric,
Sorry to hear that the Revlimid doesn't seem to be working to control the myeloma now. I just wanted to ask about why you are switching to Kyprolis. Would that be because it is a different sort of drug than Revlimid? That is, since Revlimid is an immunomodulatory agent, and Kyprolis is a proteasome inhibitor (as is Velcade), would the reasoning be to try a different approach?
Sorry to hear that the Revlimid doesn't seem to be working to control the myeloma now. I just wanted to ask about why you are switching to Kyprolis. Would that be because it is a different sort of drug than Revlimid? That is, since Revlimid is an immunomodulatory agent, and Kyprolis is a proteasome inhibitor (as is Velcade), would the reasoning be to try a different approach?
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Rising kappa FLCs & varying IgG levels - meaning?
Nancy,
That is the idea. The last time I used a protease inhibitor was Velcade three years ago, and it was stopped not because it was no longer effective, but because of neuropathy side effects. It was administered through IV. Velcade worked really well, though, so the thinking is so will Kyprolis.
Revlimid was stopped because my WBCs were too low. After a three week break in Revlimid, my neutrophils count is back up high enough I could start again, but who is to say they will not go right back down again? My WBC levels have been struggling lately more than normal, and I have been starting to get regular nucleated RBCs. From my last cycles of Revlimid in January and February, it was becoming evident that 25 mg Revlimid without dexamethasone was not that effective. My kappa jumped up to 196 from below 19 in the first cycle of Revlimid that dexamethasone was removed and to 582 the next.
I could probably get some more mileage out of Revlimid by adding dexamethasone back in, but for how much longer? My kappa was already starting to come up slowly out of the normal range in December, when I was on both Revlimid and dexamethasone. After the dexamethasone was removed, my kappa levels increased rapidly.
After the Kryprolis is stopped at some time in the future, maybe I can try another immunomodulatory agent again or hopefully immunothearpy will be FDA approved by then. My main concern about Kyprolis is not messing up my heart such that it becomes a problem later with being able to do other trials and treatments, including a possible second SCT. Kyprolis seems to work pretty good in many people, though, and has good results with progression free survival for those using it. But the cardio problems associated with the drug are a concern and I would like to know more about them and the risk. If I use Kyprolis in a trial at higher doses than approved now, am I getting more than I really need and taking unnecessary cardio risk?
And if Kyprolis does not make sense now, what else is there for relapse treatment in my case?
That is the idea. The last time I used a protease inhibitor was Velcade three years ago, and it was stopped not because it was no longer effective, but because of neuropathy side effects. It was administered through IV. Velcade worked really well, though, so the thinking is so will Kyprolis.
Revlimid was stopped because my WBCs were too low. After a three week break in Revlimid, my neutrophils count is back up high enough I could start again, but who is to say they will not go right back down again? My WBC levels have been struggling lately more than normal, and I have been starting to get regular nucleated RBCs. From my last cycles of Revlimid in January and February, it was becoming evident that 25 mg Revlimid without dexamethasone was not that effective. My kappa jumped up to 196 from below 19 in the first cycle of Revlimid that dexamethasone was removed and to 582 the next.
I could probably get some more mileage out of Revlimid by adding dexamethasone back in, but for how much longer? My kappa was already starting to come up slowly out of the normal range in December, when I was on both Revlimid and dexamethasone. After the dexamethasone was removed, my kappa levels increased rapidly.
After the Kryprolis is stopped at some time in the future, maybe I can try another immunomodulatory agent again or hopefully immunothearpy will be FDA approved by then. My main concern about Kyprolis is not messing up my heart such that it becomes a problem later with being able to do other trials and treatments, including a possible second SCT. Kyprolis seems to work pretty good in many people, though, and has good results with progression free survival for those using it. But the cardio problems associated with the drug are a concern and I would like to know more about them and the risk. If I use Kyprolis in a trial at higher doses than approved now, am I getting more than I really need and taking unnecessary cardio risk?
And if Kyprolis does not make sense now, what else is there for relapse treatment in my case?
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Rising kappa FLCs & varying IgG levels - meaning?
Thanks for sharing your logic, Eric! I do read the Beacon every day, so I have also been following what you have been going through.
I suppose that, in a way, since you stopped taking dex, it revealed that the Revlimid was not working that well. Dex is also a drug which was one of the first ones used for myeloma, and is helpful in combination with other drugs. I am still on 20 mg. of dex weekly, along with the 25 mg Revlimid. The side effects of dex, in particular, are well known, and I tell others around me that I am not normal for about three days of the week!! So they do make allowances for that!!
Hope the new treatments work better for you. I also took only four cycles of Velcade, by IV, as induction chemo back in 2009, and still have some mild neuropathy. I have also wondered about taking Velcade sub-q if necessary. I have been informed that the sub-q does not always work as well as the IV treatments, however. If the sub-q does not work, then the IV infusions are what are prescribed here.
I suppose that the difference between taking a new drug such as Kyprolis as a treatment prescribed by your oncologist, as opposed to taking it as part of a clinical trial, is that you might have to quit a clinical trial if the doses were too high for you to tolerate. However, I think that would depend on the trial, as to whether or not you could have some leeway in doses.
Another problem I have heard about, and it may or may not apply to you, is that sometimes you need to have a period of time without myeloma drugs before starting a clinical trial, and in that time, the myeloma could creep up again.
I am in a local support group and do read daily here, so just trying to determine what the future holds for us patients! I hope that the monoclonal antibodies do prove to be good therapy.
I am sure that your myeloma specialist and you have discussed all of these factors in detail, and thanks for sharing the reasoning with us here.
I suppose that, in a way, since you stopped taking dex, it revealed that the Revlimid was not working that well. Dex is also a drug which was one of the first ones used for myeloma, and is helpful in combination with other drugs. I am still on 20 mg. of dex weekly, along with the 25 mg Revlimid. The side effects of dex, in particular, are well known, and I tell others around me that I am not normal for about three days of the week!! So they do make allowances for that!!
Hope the new treatments work better for you. I also took only four cycles of Velcade, by IV, as induction chemo back in 2009, and still have some mild neuropathy. I have also wondered about taking Velcade sub-q if necessary. I have been informed that the sub-q does not always work as well as the IV treatments, however. If the sub-q does not work, then the IV infusions are what are prescribed here.
I suppose that the difference between taking a new drug such as Kyprolis as a treatment prescribed by your oncologist, as opposed to taking it as part of a clinical trial, is that you might have to quit a clinical trial if the doses were too high for you to tolerate. However, I think that would depend on the trial, as to whether or not you could have some leeway in doses.
Another problem I have heard about, and it may or may not apply to you, is that sometimes you need to have a period of time without myeloma drugs before starting a clinical trial, and in that time, the myeloma could creep up again.
I am in a local support group and do read daily here, so just trying to determine what the future holds for us patients! I hope that the monoclonal antibodies do prove to be good therapy.
I am sure that your myeloma specialist and you have discussed all of these factors in detail, and thanks for sharing the reasoning with us here.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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