My husband was diagnosed with IgG lambda myeloma almost six years ago. He had a stem cell transplant five years ago, went into complete response (CR) a year later, and has been on maintenance ever since with Revlimid 15 mg, Biaxin (clarithromycin), and dexamethasone, eventually lowering the dose of dex to 4 mg one week alternating with 8 mg the following week and had done well with that regimen.
He saw his specialist in March and at that time the doctor recommended going off of the dex altogether, which he did gradually.
He saw his local oncologist in April and his kappa light chain had increased, his lambda was still in the normal range, but his ratio was also high. For the past year or more, his kappa had been trending upward very slowly, but his doc wasn't overly concerned because his involved light chain (lambda) had been in the normal range.
He got new blood test results yesterday and his kappa again has shown a significant jump (from 4.18 in April to 7.88 now). His lambda was 2.97, also high with a ratio of 2.65. His IgG has always been in the normal range, and still is, but went from 819 in April to 1290 now. We are still waiting on the results on the test that would show his M-spike.
This all seems to be the result of his stopping dex and honestly he has felt pretty lousy since that time. He had pneumonia at the end of March, a cold that lasted two weeks in May, and has been having joint pain, fatigue, and general malaise. He was also diagnosed with adrenal insufficiency as a result of being on the dex for so long and was put on a therapeutic dose of hydrocortisone.
We are concerned about the jump in his lab values but particularly his kappa light chain value. Could this be a clone?
This is such a valuable forum, I'm hoping someone may have some input that would be helpful. Thanks.
Forums
3 posts
• Page 1 of 1
-
anitamaria - Name: Anitamaria
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 61
Re: Higher IgG and kappa free light chain levels - meaning?
I wish that I could provide some insight into your situation, but I am not sure that I can. I do have some questions the answer to which might start you down the road to answers.
Let me preface the questions with this: When you see a rise in the "uninvolved" protein, one possibility is secondary MGUS, a benign condition that can actually be an indication of a healthy reconstitution of the immune system. But secondary MGUS generally appears during induction therapy or shortly after transplant. Here, the rise in the uninvolved clone came many years later. I have not seen any literature which has discussed this late appearance of secondary MGUS.
What may be helpful at this stage is to know:
- Does your husband have an M-spike and, if so, is it different from the M-spike at diagnosis?
- Has your husband had a recent bone marrow biopsy and if so what does it show?
- Has your husband had a recent PET/CT scan and if so does it show active lesions?
- How are his kidney and calcium blood test results?
I see that his M-spike has been ordered, but the additional tests would I think be helpful in determining whether there is cause for concern.
Let me preface the questions with this: When you see a rise in the "uninvolved" protein, one possibility is secondary MGUS, a benign condition that can actually be an indication of a healthy reconstitution of the immune system. But secondary MGUS generally appears during induction therapy or shortly after transplant. Here, the rise in the uninvolved clone came many years later. I have not seen any literature which has discussed this late appearance of secondary MGUS.
What may be helpful at this stage is to know:
- Does your husband have an M-spike and, if so, is it different from the M-spike at diagnosis?
- Has your husband had a recent bone marrow biopsy and if so what does it show?
- Has your husband had a recent PET/CT scan and if so does it show active lesions?
- How are his kidney and calcium blood test results?
I see that his M-spike has been ordered, but the additional tests would I think be helpful in determining whether there is cause for concern.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Higher IgG and kappa free light chain levels - meaning?
Thanks for the reply!
I appreciate your comments about the possibility of secondary MGUS but am not sure it would apply in his case. Having said that, we're very hopeful. We just got the results of his SPEP and once again there is no M-spike. He has a call in to his local oncologist to look into getting a PET/CT scan ordered as well as a bone marrow biopsy. So far his kidney and calcium blood test results have been ok although his GFR was 59 and his sodium was 145, both not too far above or below the normal range.
He also put a call in to his myeloma specialist whose nurse called back and told him to re-test in one month and to maintain good kidney health. He has had quite a bit of swelling in his legs but, again, that started after he stopped taking his dex.
Not sure what to make of all this but am very concerned that we may be looking at light chain escape relapse (kappa - different from his original lambda diagnosis), which, from what I've read, doesn't have a very good prognosis. I also feel like we're just sitting around waiting for the numbers to go up. He continues to be on maintenance with Revlimid 15 mg without the dex.
Thoughts?
I appreciate your comments about the possibility of secondary MGUS but am not sure it would apply in his case. Having said that, we're very hopeful. We just got the results of his SPEP and once again there is no M-spike. He has a call in to his local oncologist to look into getting a PET/CT scan ordered as well as a bone marrow biopsy. So far his kidney and calcium blood test results have been ok although his GFR was 59 and his sodium was 145, both not too far above or below the normal range.
He also put a call in to his myeloma specialist whose nurse called back and told him to re-test in one month and to maintain good kidney health. He has had quite a bit of swelling in his legs but, again, that started after he stopped taking his dex.
Not sure what to make of all this but am very concerned that we may be looking at light chain escape relapse (kappa - different from his original lambda diagnosis), which, from what I've read, doesn't have a very good prognosis. I also feel like we're just sitting around waiting for the numbers to go up. He continues to be on maintenance with Revlimid 15 mg without the dex.
Thoughts?
-
anitamaria - Name: Anitamaria
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 61
3 posts
• Page 1 of 1