Thank you Dr. Shain,
All this information has really helped me understand this much better.
I am NOT IgG kappa multiple myeloma. I have only used (except this recently) M-protein to monitor my myeloma.
Unfortunately, we (my doctor and I) don't really know when this started to trend. Last summer, my kappa light chains were at 64, or in that range. It wasn't till my tests in January that the red flag went up when he ordered the free light chains.
That prompted him to re-stage me with x-rays, IgG, 24-hour urine, and of course another free light test, and a bone marrow biopsy. My bone marrow biopsy came back at 6.8 plasma cells with only mild excessive kappa. Minimal residual myeloma cells.
Everything else was normal (blood tests I mean). So he re-tested in February, and I haven't seen it but he said the results were the same. So, we will re-test again in March.
I do feel much clearer that this probably is a FLC escape, and Revlimid / dex is not working.
I think since it seems to be the same and is not rapidly rising, his approach is management. He is of the opinion less is more, especially since all my other markers are pretty good.
Thanks again. I think I'm going to go into San Francisco as this is about 3 hours from where I live. I'd love to see Dr. Libby in Seattle, but that would mean flying up there.
Forums
Re: Meaning of high kappa light chains?
Christina,
I'm confused. If you don't have a diagnosis of IgG kappa multiple myeloma, what then is your specific diagnosis?
I'm confused. If you don't have a diagnosis of IgG kappa multiple myeloma, what then is your specific diagnosis?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Meaning of high kappa light chains?
I was diagnosed in June 2005, Stage 3 myeloma. No IgG kappa light chains; all my light chains were normal. I had a singular plasmacytoma on T10.
Radiation for 17 rounds. Induction was Doxil, dex, and I can't remember what else (Revlimid was not even part of induction!). SCT in March 2006.
CR for 4 years.
Don't be confused. I was never kappa light chain. Myeloma has only been followed with m protein. This kappa light chain has only been recent.
Please, I think I know something about myeloma having lived this long with it.
Radiation for 17 rounds. Induction was Doxil, dex, and I can't remember what else (Revlimid was not even part of induction!). SCT in March 2006.
CR for 4 years.
Don't be confused. I was never kappa light chain. Myeloma has only been followed with m protein. This kappa light chain has only been recent.
Please, I think I know something about myeloma having lived this long with it.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Meaning of high kappa light chains?
Hi Christina,
I didn't mean to question your understanding in the least. I was just trying to understand the situation myself. Take care and good luck. UCSF has some great multiple myeloma docs.
I didn't mean to question your understanding in the least. I was just trying to understand the situation myself. Take care and good luck. UCSF has some great multiple myeloma docs.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Meaning of high kappa light chains?
Apology and update:
Well, I'm back from my doctor's visit, and he said I am IgG kappa. So I never knew this, so it's a bit of a surprise. But, I apologize for saying I'm not, I guess I never knew that way back 10 years ago.
But my kappa light chains are about the same and he says, again, no symptoms, so just keep taking Revlimid and we will test again in a month.
I feel pretty good about what's going on and certainly understand it better. My M-protein went up slightly, but he had lowered my dex, so that may have been why.
So onward with what were doing.
Well, I'm back from my doctor's visit, and he said I am IgG kappa. So I never knew this, so it's a bit of a surprise. But, I apologize for saying I'm not, I guess I never knew that way back 10 years ago.
But my kappa light chains are about the same and he says, again, no symptoms, so just keep taking Revlimid and we will test again in a month.
I feel pretty good about what's going on and certainly understand it better. My M-protein went up slightly, but he had lowered my dex, so that may have been why.
So onward with what were doing.
-
Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Meaning of high kappa light chains?
Christina,
I am wondering if you and I are in similar circumstances. I have IgG kappa myeloma and I am three years post stem cell transplant (SCT). I had been on Revlimid 10 mg maintenance therapy after the SCT until August last year, when it was raised to 25 mg and 40 mg dexamethasone added as my kappa light chains where increasing.
Since then, the dexamethasone has been reduced to 20 mg, then nothing since January this year. My last free light chains showed kappa jumped up to 196 from being about in the normal range two months earlier on the previous test. My immunoglobulins looked good. The IgG was actually towards the lower end of the normal range. My IgM was below 18, but has been this way for some time.
I plan to be retesting again next week and have an appointment with my oncologist at the end of the month. Please keep this thread updated on what you find and any more information on free light chain escape. I had not heard of it before.
I am also wondering if I have become resistant to Revlimid. It seems that way. I may have to add the dexamethasone back in. The jump in kappa corresponds with when I stopped using dexamethasone. But this discussion on the possibility of a subclone that only produces kappa light chain has got my interest now.
What I am uncertain about is if it make sense to increase treatment to drive my FLC numbers back into the normal range, or if there is some level of FLC that I can remain stable at with less treatment and what the risk is of doing that, if any.
This is kind of related to other discussions on the Beacon about if it makes sense to have a treatment goal to do whatever can be done to achieve complete remission, or just maintain stable disease with less treatment. At what point is it a lost cause to try to achieve CR or keep lab numbers in the normal range with less but more tolerable treatment?
I am wondering if you and I are in similar circumstances. I have IgG kappa myeloma and I am three years post stem cell transplant (SCT). I had been on Revlimid 10 mg maintenance therapy after the SCT until August last year, when it was raised to 25 mg and 40 mg dexamethasone added as my kappa light chains where increasing.
Since then, the dexamethasone has been reduced to 20 mg, then nothing since January this year. My last free light chains showed kappa jumped up to 196 from being about in the normal range two months earlier on the previous test. My immunoglobulins looked good. The IgG was actually towards the lower end of the normal range. My IgM was below 18, but has been this way for some time.
I plan to be retesting again next week and have an appointment with my oncologist at the end of the month. Please keep this thread updated on what you find and any more information on free light chain escape. I had not heard of it before.
I am also wondering if I have become resistant to Revlimid. It seems that way. I may have to add the dexamethasone back in. The jump in kappa corresponds with when I stopped using dexamethasone. But this discussion on the possibility of a subclone that only produces kappa light chain has got my interest now.
What I am uncertain about is if it make sense to increase treatment to drive my FLC numbers back into the normal range, or if there is some level of FLC that I can remain stable at with less treatment and what the risk is of doing that, if any.
This is kind of related to other discussions on the Beacon about if it makes sense to have a treatment goal to do whatever can be done to achieve complete remission, or just maintain stable disease with less treatment. At what point is it a lost cause to try to achieve CR or keep lab numbers in the normal range with less but more tolerable treatment?
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Meaning of high kappa light chains?
Hi Eric,
I do think the dex boosts the Revlimid. I've been on Revlimid / dex off and on (mostly on ) for 5 years. My doctor has reduced the dose to 12 mg and he thinks that the slight M protein increase is because of that. But his reasoning is its only a tenth, and it is better to be getting less dex. But, for you, it may be you need to add a small dose in to boost the Revlimid.
Since I was just restaged with tests and a bone marrow biopsy and everything looked ok, he's not worried or willing to change up treatment yet. My kappa have been about the same for 3 months.
Of course, he said if all of a sudden it changes, then we will do something.
I would wait and see what your next test is, ask your doctor about adding a small amount of dex just to see if it drops your light chains. Especially since your increase corresponds with when you went off.
I'm always amazed at what I learn from these posts and it helps me when I have my doctor appointments. Especially when I feel he's spot on with what he's doing with managing this until there is a change.
I do think the dex boosts the Revlimid. I've been on Revlimid / dex off and on (mostly on ) for 5 years. My doctor has reduced the dose to 12 mg and he thinks that the slight M protein increase is because of that. But his reasoning is its only a tenth, and it is better to be getting less dex. But, for you, it may be you need to add a small dose in to boost the Revlimid.
Since I was just restaged with tests and a bone marrow biopsy and everything looked ok, he's not worried or willing to change up treatment yet. My kappa have been about the same for 3 months.
Of course, he said if all of a sudden it changes, then we will do something.
I would wait and see what your next test is, ask your doctor about adding a small amount of dex just to see if it drops your light chains. Especially since your increase corresponds with when you went off.
I'm always amazed at what I learn from these posts and it helps me when I have my doctor appointments. Especially when I feel he's spot on with what he's doing with managing this until there is a change.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
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