Hi all,
This is my first time posting. I am 57 years old. I was diagnosed with kappa light chain myeloma in October 2015. Since diagnosis, I have been hospitalized 4 times and had a kyphoplasty for vertebral fractures.
On December 29, one week before I started treatment with Revlimid and dex, my serum kappa free light chains (FLC) were 1300 mg/L, and the kappa-lambda ratio was 119.
On January 29, my kappa FLC level dropped to 340 mg/L with a kappa-lambda ratio of 24. We were encouraged.
Unfortunately, I was hospitalized with severe diarrhea and dehydration with hypoalbuminemia (abnormally low levels of albumin in the blood). Treatment was suspended until February 22 when I started my second round of Revlimid / dex.
On March 15, my kappa FLC level is up to 664 mg/L with a ratio of 48, basically doubled from my first round.
Has anyone experienced fluctuations in their free light chain readings during induction?
I don't want to be discouraged, but it is very hard to put up with multiple side effects when you do not see progress. I have a lot of back pain, lack of appetite, and a distended abdomen, which is very uncomfortable.
I appreciate your feedback.
Forums
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Cindi1031 - Name: Cindi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 56
Re: Free light chain fluctuations during treatment
Cindi,
Are you being seen by a myeloma specialist or a regular haematologist?
Are you being seen by a myeloma specialist or a regular haematologist?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Free light chain fluctuations during treatment
I also have had disappointments. Twice my numbers have increased; I am taking Revlimid, Velcade, and dexamethasone (RVD) since October 2015. I started at >2300 and now at only 545. Slow but sure 
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Carol L
Re: Free light chain fluctuations during treatment
Have you been prescribed anything to help with the diarrhea? Some patients have great relief from cholestyramine (Questran, Olestyr), a powder similar in texture to drywall dust. This is an off-label use for the drug which is intended to treat high cholesterol.
Good luck
Good luck
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Liz G
Re: Free light chain fluctuations during treatment
I am being seen at Moffitt Cancer Center. My doctor is a myeloma specialist. I am not having ongoing diarrhea. They suspect I had food poisoning from a lowered immune system.
I am just confused since my light chains went down and then up again. Just not sure if this is something to worry about during my initial treatment.
I am just confused since my light chains went down and then up again. Just not sure if this is something to worry about during my initial treatment.
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Cindi1031 - Name: Cindi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 56
Re: Free light chain fluctuations during treatment
Cindi,
It's difficult to say for certain, but it wouldn't surprise me if the increase in your kappa FLC level happened because of your "Revlimid holiday". I suspect the kappa level will be lower again when you get you next set of lab results.
You are in the hands of some great myeloma specialists at Moffitt. They will know what to do if there are any weird turns in your case.
Please keep us posted on how things work out for you.
It's difficult to say for certain, but it wouldn't surprise me if the increase in your kappa FLC level happened because of your "Revlimid holiday". I suspect the kappa level will be lower again when you get you next set of lab results.
You are in the hands of some great myeloma specialists at Moffitt. They will know what to do if there are any weird turns in your case.
Please keep us posted on how things work out for you.
Re: Free light chain fluctuations during treatment
Hello Cindi,
FLC kappa and lambda can be influenced by several factors.
In my indolent myeloma stage, I had a serum free kappa of 473mg/dl and kappa/lambda ratio of 40.91. Now, after eleven cycles of Revlimid, dex and once in three month Zometa, I have no M-spike, but immunoelectrophoresis shows "suggestive of monoclonal gammopathy - positive for IgG and kappa isotope.
My serum free kappa is 5.63 mg/dl and the ratio is 2.47. It keeps fluctuating in this lower range since last three months.
Today I read that fluctuations in FLC kappa and ratio could happen due to a person suffering from rheumatoid arthritis, auto immune disease and pulmonary disease. So please look in to other causes. I have not dropped the dose of Revlimid.
I hope my observation helps.
FLC kappa and lambda can be influenced by several factors.
In my indolent myeloma stage, I had a serum free kappa of 473mg/dl and kappa/lambda ratio of 40.91. Now, after eleven cycles of Revlimid, dex and once in three month Zometa, I have no M-spike, but immunoelectrophoresis shows "suggestive of monoclonal gammopathy - positive for IgG and kappa isotope.
My serum free kappa is 5.63 mg/dl and the ratio is 2.47. It keeps fluctuating in this lower range since last three months.
Today I read that fluctuations in FLC kappa and ratio could happen due to a person suffering from rheumatoid arthritis, auto immune disease and pulmonary disease. So please look in to other causes. I have not dropped the dose of Revlimid.
I hope my observation helps.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Free light chain fluctuations during treatment
I've been on maintenance therapy for about a year and a half (after 6 months of induction). During that time, my kappa free light chain level has fluctuated pretty much every month. In the beginning, it was very stressful, but now I don't worry. It creeps up some and creeps down some.
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Janet1520
Re: Free light chain fluctuations during treatment
Hello Cindi,
My experience and response to the RVD induction treatment was in line with what Janet and MMFeb16,15 have said.
I started with a kappa reading of 1,070 and K/L =186.09 in mid December 2014. These numbers came down to 24.8 and 2.54 after only three cycles of RVD (15 mg Revlimid, 21 days on and 7 days off, weekly Velcade shots and 20 mg dex once a week).
However, I had a flu or flu-like symptoms, the temperature shooting above 103, during the 4th cycle and my kappa shot up to 45 and the K/L to 3.85, mainly due to the flu AND because the 1-week stoppage of the treatment. I could find only one article about the effects of a flu on the myeloma patient's kappa and it said that just a flu vaccine with the dead virus (?) can cause a 25% spike in the kappa. It took 2 more cycles before my kappa and K/L were back to the pre-flu levels. If the flu affected cycles are ignored my kappa reading (repeated every 4 weeks) dropped, almost on a classic curve, from 1,070 to 127, 48.2, 24.8, (flu gap of 2 cycles), 20.9, 15.7, 13.2, 15.9, 12.5, 12.6; till the dex was dropped and Revlimid lowered. If I responded well to the induction RVD treatment, it makes me wonder that there is something wrong when my kappa goes up to the 30+/- levels and stays there; particularly since I have avoided any infection during the past year.
Unfortunately, you had to be hospitalized and your treatment was stopped for an extended period of time. Therefore, both your kappa and K/L doubling is in line with my own experience. I had a 3-day flu and just a week of suspension of the induction treatment and my kappa went from 24.8 to 45 and K/L jumped from 2.54 to 3.85. I am sure your April tests would show a major improvement compared to the January levels.
Wish you all the best.
Fluctuations during maintenance:
I am on the (life long?) maintenance therapy now and my kappa is fluctuating around 30, mainly after stopping the weekly dex and reducing the 15 mg Revlimid dose to every alternate day. This was unexpected since my kappa remained around 12.5 for three months and the K/L ratio dropped to near 1.00 even after stopping the Velcade shots. There were minor fluctuations between 12.5 and 15 for the kappa but nothing like the jump to 20 and 30 levels right after stopping the dex and reducing the Revlimid (mainly because I developed the Revlimid rash in the absence of the dex).
Now my oncologist has changed my Revlimid to 10 mg for 3 weeks on and 1 week off and I have been tolerating it well for the past 2+ weeks. My oncologist wants to change one thing at a time and is reluctant to add the weekly dex, even at 8 mg once a week. I am glad he is concerned about the long-term (10 Years?) side effects of the dex since it indicates his confidence that I'd have a 'long term' to worry about.
All in all I responded very well to the induction therapy. However, I was getting to the point of constant exhaustion after 9 cycles. Dropping the dex was most probably the best thing for feeling 'normal' for me. However, I certainly feel concerned about these kappa levels being at or around 30 for the past 4 blood test results, repeated every 4 weeks.
My experience and response to the RVD induction treatment was in line with what Janet and MMFeb16,15 have said.
I started with a kappa reading of 1,070 and K/L =186.09 in mid December 2014. These numbers came down to 24.8 and 2.54 after only three cycles of RVD (15 mg Revlimid, 21 days on and 7 days off, weekly Velcade shots and 20 mg dex once a week).
However, I had a flu or flu-like symptoms, the temperature shooting above 103, during the 4th cycle and my kappa shot up to 45 and the K/L to 3.85, mainly due to the flu AND because the 1-week stoppage of the treatment. I could find only one article about the effects of a flu on the myeloma patient's kappa and it said that just a flu vaccine with the dead virus (?) can cause a 25% spike in the kappa. It took 2 more cycles before my kappa and K/L were back to the pre-flu levels. If the flu affected cycles are ignored my kappa reading (repeated every 4 weeks) dropped, almost on a classic curve, from 1,070 to 127, 48.2, 24.8, (flu gap of 2 cycles), 20.9, 15.7, 13.2, 15.9, 12.5, 12.6; till the dex was dropped and Revlimid lowered. If I responded well to the induction RVD treatment, it makes me wonder that there is something wrong when my kappa goes up to the 30+/- levels and stays there; particularly since I have avoided any infection during the past year.
Unfortunately, you had to be hospitalized and your treatment was stopped for an extended period of time. Therefore, both your kappa and K/L doubling is in line with my own experience. I had a 3-day flu and just a week of suspension of the induction treatment and my kappa went from 24.8 to 45 and K/L jumped from 2.54 to 3.85. I am sure your April tests would show a major improvement compared to the January levels.
Wish you all the best.
Fluctuations during maintenance:
I am on the (life long?) maintenance therapy now and my kappa is fluctuating around 30, mainly after stopping the weekly dex and reducing the 15 mg Revlimid dose to every alternate day. This was unexpected since my kappa remained around 12.5 for three months and the K/L ratio dropped to near 1.00 even after stopping the Velcade shots. There were minor fluctuations between 12.5 and 15 for the kappa but nothing like the jump to 20 and 30 levels right after stopping the dex and reducing the Revlimid (mainly because I developed the Revlimid rash in the absence of the dex).
Now my oncologist has changed my Revlimid to 10 mg for 3 weeks on and 1 week off and I have been tolerating it well for the past 2+ weeks. My oncologist wants to change one thing at a time and is reluctant to add the weekly dex, even at 8 mg once a week. I am glad he is concerned about the long-term (10 Years?) side effects of the dex since it indicates his confidence that I'd have a 'long term' to worry about.
All in all I responded very well to the induction therapy. However, I was getting to the point of constant exhaustion after 9 cycles. Dropping the dex was most probably the best thing for feeling 'normal' for me. However, I certainly feel concerned about these kappa levels being at or around 30 for the past 4 blood test results, repeated every 4 weeks.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Free light chain fluctuations during treatment
Hi folks,
One other data point that may be of interest.
This past weekend I attended a talk given by a representative from The Binding Site, Inc., which is the company that makes the Freelite test that is used to test serum (blood) free light chain values. He said that kappa and lambda values can change as much as 20-30% due to "normal day-to-day biological variation." In addition, if the tests are run on different lab machines or sent to different labs, that can add even more variation.
I knew there was some day-to-day variation, but I didn't realize it was this much.
Mike
One other data point that may be of interest.
This past weekend I attended a talk given by a representative from The Binding Site, Inc., which is the company that makes the Freelite test that is used to test serum (blood) free light chain values. He said that kappa and lambda values can change as much as 20-30% due to "normal day-to-day biological variation." In addition, if the tests are run on different lab machines or sent to different labs, that can add even more variation.
I knew there was some day-to-day variation, but I didn't realize it was this much.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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