I wanted to ask forum members about my kappa free light chain numbers.
I was diagnosed early this year, had induction therapy with Revlimid, Velcade, and dexamethasone, and then had a stem cell transplant in May. In August I started maintenance therapy with Revlimid, Velcade, and dex after a short while when I was only on dex.
In August, my kappa light chain number decreased to the low 20s when I was on only dex. My numbers stayed low during my first full cycle of maintenance therapy, but when I had my two weeks off in September between, the number jumped to 75.
During my second cycle of maintenance therapy in September and early October, my numbers again decreased from the 70s to the low 20s again. But when I had my two weeks off, it happened again where my numbers jumped back up to the 70s again.
I started my 3rd cycle last week, but the question is what is my prognosis where every time I have my off week, my numbers jump. During the off week I am not on Revlimid either.
I do not want to continue the cycles for a long period of time because of the effects I have during the cycle of the dex and Velcade. I would appreciate any comments.
(You can read about my stem cell transplant experience in this forum thread.)
Forums
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Kappa FLC level going up & down during RVD maintenance
Hi AC,
Interesting kappa numbers you've got there. Sorry they're being so complicated!
Do you mind if I ask some questions to firm up some background data related to what's going on?
Your myeloma is kappa light chain-only myeloma, right?
I saw in one of your postings that your kappa level was about 1000 mg/L at diagnosis. What about your kappa/lambda ratio, and do you remember what your bone marrow plasma cell percentage was at diagnosis?
Am I right that your bone marrow plasma cell percentage was about 20 percent right before your transplant in May?
What was your kappa level and kappa-lambda ratio right before the transplant?
I saw in one of your postings that your bone marrow plasma cell percentage was about 25 percent at Day 110 post transplant. Is that correct?
Finally, I believe your kappa and kappa-lambda ratio numbers around Day 100 post transplant are hard to pin down because you were on dex for a rash for a while. Is that correct?
I'm guessing your kappa level might have been about 125, and your kappa-lambda ratio maybe 80, if you hadn't been on dex. Does that seem like a good guess to you?
I'm just getting all this down because it could provide some insight into what's happening with your FLC results right now.
Interesting kappa numbers you've got there. Sorry they're being so complicated!
Do you mind if I ask some questions to firm up some background data related to what's going on?
Your myeloma is kappa light chain-only myeloma, right?
I saw in one of your postings that your kappa level was about 1000 mg/L at diagnosis. What about your kappa/lambda ratio, and do you remember what your bone marrow plasma cell percentage was at diagnosis?
Am I right that your bone marrow plasma cell percentage was about 20 percent right before your transplant in May?
What was your kappa level and kappa-lambda ratio right before the transplant?
I saw in one of your postings that your bone marrow plasma cell percentage was about 25 percent at Day 110 post transplant. Is that correct?
Finally, I believe your kappa and kappa-lambda ratio numbers around Day 100 post transplant are hard to pin down because you were on dex for a rash for a while. Is that correct?
I'm guessing your kappa level might have been about 125, and your kappa-lambda ratio maybe 80, if you hadn't been on dex. Does that seem like a good guess to you?
I'm just getting all this down because it could provide some insight into what's happening with your FLC results right now.
Re: Kappa FLC level going up & down during RVD maintenance
TerryH,
I appreciate you taking the time obtaining the background info. I was diagnosed with kappa light chain in December 2015 with a kappa light chain level over 1000 when they found a plasmacytoma that caused 90% compression of my L3. I was found to have involved plasma cell of 20%.
Here was my serum free light chain results.
First, from February before I started my induction therapy.
Kappa - 1009.0 mg/L
Lambda - 2.2 mg/L
Kappa / lambda ratio - 458.64
Before my transplant in May my readings were:
Kappa - 71.7 mg/L
Lambda - 3.4 mg/L
Kappa / lambda ratio - 21.09
After my transplant on June 21, 2016 my readings were (20% involved plasma still)
Kappa - 111.5 mg/L
Lambda - 1.9 mg/L
Kappa / lambda ratio - 58.68
Before I started my maintenance, my kappa numbers had decreased substantially to the following:
Kappa - 23.0 mg/L
Lambda - 3.2 mg/L
Kappa / lambda ratio - 7.19
The only therapy I was on from June to August with this reading was dex to help out with the rash I experienced.
For the two cycles after this reading, the numbers would drop again to the low 20’s and then during the off 2 weeks between cycles, the number would jump back to the 70’s with a 2.7 lambda and 26 ratio.
Here are my latest readings after going down to the 20's before my break and these subsequent readings:
Kappa - 72.0 mg/L
Lambda - 2.3 mg/L
Kappa / lambda ratio - 31.30
Here are my other lab results from this week (October 18, 2016)
WBC 4.44 k/uL
RBC 4.30 m/uL
Hemoglobin 13.6 g/dL
Hematocrit 41.3 %
MCV 96.0 fL
MCH 31.6 pG
MCHC 32.9 g/dL
RDW-CV 14.8 %
Platelet Count 235 k/uL
Abs Neut (ANC) 2.89 k/uL
Metabolic Panel:
Glucose 155 mg/dL
BUN 13 mg/dL
Creatinine 0.96 mg/dL
Sodium 138 mmol/L
Potassium 4.7 mmol/L
Chloride 102 mmol/L
CO2 28 mmol/L
Calcium 9.3 mg/dL
Protein 6.3 g/dL
Albumin 4.2 g/dL
Gamma Globulin 2.1 g/dL (calc)
Alb/Glob Ratio 2.0 (calc)
Bilirubin, Total 0.4 mg/dL
Alkaline Phosphatase 62 U/L
AST 18 U/L
ALT 43 U/L
Any analysis or comments would be appreciated to help make sense of the spikes.
I appreciate you taking the time obtaining the background info. I was diagnosed with kappa light chain in December 2015 with a kappa light chain level over 1000 when they found a plasmacytoma that caused 90% compression of my L3. I was found to have involved plasma cell of 20%.
Here was my serum free light chain results.
First, from February before I started my induction therapy.
Kappa - 1009.0 mg/L
Lambda - 2.2 mg/L
Kappa / lambda ratio - 458.64
Before my transplant in May my readings were:
Kappa - 71.7 mg/L
Lambda - 3.4 mg/L
Kappa / lambda ratio - 21.09
After my transplant on June 21, 2016 my readings were (20% involved plasma still)
Kappa - 111.5 mg/L
Lambda - 1.9 mg/L
Kappa / lambda ratio - 58.68
Before I started my maintenance, my kappa numbers had decreased substantially to the following:
Kappa - 23.0 mg/L
Lambda - 3.2 mg/L
Kappa / lambda ratio - 7.19
The only therapy I was on from June to August with this reading was dex to help out with the rash I experienced.
For the two cycles after this reading, the numbers would drop again to the low 20’s and then during the off 2 weeks between cycles, the number would jump back to the 70’s with a 2.7 lambda and 26 ratio.
Here are my latest readings after going down to the 20's before my break and these subsequent readings:
Kappa - 72.0 mg/L
Lambda - 2.3 mg/L
Kappa / lambda ratio - 31.30
Here are my other lab results from this week (October 18, 2016)
WBC 4.44 k/uL
RBC 4.30 m/uL
Hemoglobin 13.6 g/dL
Hematocrit 41.3 %
MCV 96.0 fL
MCH 31.6 pG
MCHC 32.9 g/dL
RDW-CV 14.8 %
Platelet Count 235 k/uL
Abs Neut (ANC) 2.89 k/uL
Metabolic Panel:
Glucose 155 mg/dL
BUN 13 mg/dL
Creatinine 0.96 mg/dL
Sodium 138 mmol/L
Potassium 4.7 mmol/L
Chloride 102 mmol/L
CO2 28 mmol/L
Calcium 9.3 mg/dL
Protein 6.3 g/dL
Albumin 4.2 g/dL
Gamma Globulin 2.1 g/dL (calc)
Alb/Glob Ratio 2.0 (calc)
Bilirubin, Total 0.4 mg/dL
Alkaline Phosphatase 62 U/L
AST 18 U/L
ALT 43 U/L
Any analysis or comments would be appreciated to help make sense of the spikes.
-
Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Kappa FLC level going up & down during RVD maintenance
Thanks for that additional information, AC. That's really helpful.
One of the main things I'm trying to figure out is what has happened with your bone marrow plasma cell percentage since your diagnosis. It looks like it has been measured 3 or 4 times since your diagnosis:
Bone Marrow Plasma Cell Percentage
At diagnosis - 20%
Right before your transplant - 20%
Right after your transplant - 20%
3 months post transplant - 25%
Are these numbers correct?
Sorry if I'm pushing hard on this point, but I think it's probably important.
One of the main things I'm trying to figure out is what has happened with your bone marrow plasma cell percentage since your diagnosis. It looks like it has been measured 3 or 4 times since your diagnosis:
Bone Marrow Plasma Cell Percentage
At diagnosis - 20%
Right before your transplant - 20%
Right after your transplant - 20%
3 months post transplant - 25%
Are these numbers correct?
Sorry if I'm pushing hard on this point, but I think it's probably important.
Re: Kappa FLC level going up & do: wn during RVD maintenance
TerryH,
All those numbers are correct, but the 25 percent 3 months post transplant I was told could have been 20 percent. I was told that the number was 25 percent, but because it has been at 20 percent, they do not see this as an increase because it could been at that location the numbers were 25 percent.
February: 20%
April: 20%
July: 25%
After one week on my 3rd cycle I was just told me kappa serum free light chain numbers again dropped from the 70's. Here are my numbers that was one week after I on the Revlimid, Velcade, and dex.
Kappa - 42.6 mg/L
Lambda - 2.7 mg/L
Kappa / lambda ratio - 5.78
Thank you for your help.
All those numbers are correct, but the 25 percent 3 months post transplant I was told could have been 20 percent. I was told that the number was 25 percent, but because it has been at 20 percent, they do not see this as an increase because it could been at that location the numbers were 25 percent.
February: 20%
April: 20%
July: 25%
After one week on my 3rd cycle I was just told me kappa serum free light chain numbers again dropped from the 70's. Here are my numbers that was one week after I on the Revlimid, Velcade, and dex.
Kappa - 42.6 mg/L
Lambda - 2.7 mg/L
Kappa / lambda ratio - 5.78
Thank you for your help.
-
Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Kappa FLC level going up & down during RVD maintenance
Hi AC,
Thanks for the additional results.
Here are the things about your results that stand out to me:
Sorry I can't give you a more conclusive answer right now. I hope this has been helpful anyway.
Thanks for the additional results.
Here are the things about your results that stand out to me:
- Your bone marrow plasma cell percentage hasn't really budged after 4-5 cycles of Revlimid, Velcade, and dexamethasone (RVD) induction therapy, a stem cell transplant, and 2-3 cycles of RVD consolidation / maintenance.
- Your induction therapy brought your kappa free light chain (FLC) levels down from very high levels, but neither it nor your transplant and consolidation therapy is bringing the level or your kappa / lambda ratio into the normal range.
- Dex by itself dropped the kappa FLC level quite a bit after your transplant. In fact, it did just as well as the RVD consolidation is doing.
- Your kappa FLC level goes up when you're not on treatment. We don't know for sure, however, if it would level off without treatment, or if it would keep climbing.
- Continue the RVD consolidation and see if it slowly brings down your FLC numbers (and also eventually your plasma cell percentage)
- Switch to a completely new regimen to see if you can pound the disease down with different treatments (e.g., Kyprolis, Pomalyst, and dex, or a Darzalex-based regimen, or something else)
- Test whether your numbers go up a bit, but then stabilize, with either no treatment, or limited treatment, such as dex- or prednisone-only therapy.
Sorry I can't give you a more conclusive answer right now. I hope this has been helpful anyway.
Re: Kappa FLC level going up & down during RVD maintenance
TerryH,
Thank you for the information. Those questions are the ones I have been thinking about since I started my therapy after the stem cell transplant. After my transplant, both the UM and Cleveland Clinic doctors talked about going on Darzelax and not VRD. The choice was made to use the VRD but I am wondering if its worthwhile to continue the VRD if it's proven that as soon as the VRD stopped my numbers increase. It does not make sense to add the toxicity if the numbers increase as soon as it stops.
I also talked with my doctor about the danger of just using the Revlimid even if my numbers stabilize at a higher number. This question is one that I have and have had that I do not fully understand the risk/reward ratio. What are the risks of allowing the kappa light number to stabilize at a higher number than normal? If the numbers stabilized in the 70's or the low 100's, does that create a risk for me going forward?
I have been really leaning towards choosing the path of just using Revlimid and see if my number will stabilize.
AC
Thank you for the information. Those questions are the ones I have been thinking about since I started my therapy after the stem cell transplant. After my transplant, both the UM and Cleveland Clinic doctors talked about going on Darzelax and not VRD. The choice was made to use the VRD but I am wondering if its worthwhile to continue the VRD if it's proven that as soon as the VRD stopped my numbers increase. It does not make sense to add the toxicity if the numbers increase as soon as it stops.
I also talked with my doctor about the danger of just using the Revlimid even if my numbers stabilize at a higher number. This question is one that I have and have had that I do not fully understand the risk/reward ratio. What are the risks of allowing the kappa light number to stabilize at a higher number than normal? If the numbers stabilized in the 70's or the low 100's, does that create a risk for me going forward?
I have been really leaning towards choosing the path of just using Revlimid and see if my number will stabilize.
AC
-
Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Kappa FLC level going up & down during RVD maintenance
Hello AC,
A couple of questions:
First, what are the genetics of your myeloma? And, second, what doses of Revlimid, Velcade, and dexamethasone are you currently taking ?
I generally agree with what TerryH has said. If the goal is a complete response (which it obviously is since you had a stem cell transplant), then at this point my approach would be to change therapy to improve your response.
A good option in my opinion would be to change the Velcade to Kyprolis (carfilzomib) and to change the Revlimid to Pomalyst (pomalidomide). Dexamethasone of course would be continued. There is quite a bit of experience combining Kyprolis with Pomalyst, although this combination is not yet approved and only Phase 2 studies have been performed so far.
Switching to Darzalex (daratumumab) would be reasonable, but it would need to be combined with other agents. Two major studies have recently been published that combined Darzalex with either Velcade or Revlimid. Both had promising results. We still have a lot to learn about Darzalex, though, and my tendency is to use it somewhat later in therapy. In addition, it will be hard / impossible to get insurance approval for Darzalex combinations from some insurance plans.
You clearly have some excellent institutions helping in your care and therefore are in good hands. I appreciate having the opportunity to share my thoughts about multiple myeloma management with you and the Beacon's readers!
A couple of questions:
First, what are the genetics of your myeloma? And, second, what doses of Revlimid, Velcade, and dexamethasone are you currently taking ?
I generally agree with what TerryH has said. If the goal is a complete response (which it obviously is since you had a stem cell transplant), then at this point my approach would be to change therapy to improve your response.
A good option in my opinion would be to change the Velcade to Kyprolis (carfilzomib) and to change the Revlimid to Pomalyst (pomalidomide). Dexamethasone of course would be continued. There is quite a bit of experience combining Kyprolis with Pomalyst, although this combination is not yet approved and only Phase 2 studies have been performed so far.
Switching to Darzalex (daratumumab) would be reasonable, but it would need to be combined with other agents. Two major studies have recently been published that combined Darzalex with either Velcade or Revlimid. Both had promising results. We still have a lot to learn about Darzalex, though, and my tendency is to use it somewhat later in therapy. In addition, it will be hard / impossible to get insurance approval for Darzalex combinations from some insurance plans.
You clearly have some excellent institutions helping in your care and therefore are in good hands. I appreciate having the opportunity to share my thoughts about multiple myeloma management with you and the Beacon's readers!
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Kappa FLC level going up & down during RVD maintenance
Thank you for your feedback and reading through my post, Dr. Libby.
Here is the genetics from my bone marrow biopsy in January 2016:
13q14 (RB1): Normal pattern;17p13 (TP53): Normal pattern 14q32 (IGH): Positive for IGH Translocation; (149/174)t(11;14)(q13;q32) (IGH/CCND1): Positive (94/118)t(4;14)(p16;q32)
(MMSET/IGH): Negative t(14;16)(q32;q23) (IGH/MAF): Negative
Interpretation: These findings demonstrate a plasma cell population with t(11;14),indicating a standard risk disease.
I receive subcutaneous injection of Velcade 1.5 mg/m2 time (4 injections per cycle); with 21 days of Revlimid @ 25 mg; along with 40 mg of dex.
I received my 3rd injection of Velcade today of my 3rd cycle after starting back up after my stem cell transplant. I am set to finish my 3rd cycle next week, which is the reason for asking the questions on the forum before I see my doctor, so I will have an idea of what I should do going forward.
I do feel I am in very competent hands with both the University of Miami as my stem cell transplant facility and Cleveland Clinic, where I receive my myeloma care. Both of my doctors are experts and I could not ask for any better medical care.
After the stem cell transplant there was a different view point with my University of Miami doctor and my Cleveland clinic doctor on how to proceed since my kappa light chain increased to 178 with 10 days after I was released from transplant facility. One doctor advised me to just start on the 25 mg of Revlimid and not on the full Velcade, Revlimid, and dexamethasone therapy; whereas the other doctor wanted to – in his words – "hammer" the kappa free light chain number because of my age (46) and good medical condition, to as low as possible. I decided to go with that recommendation.
What is interesting is that during June (after the high 178 Kappa light reading) and July I was placed on 4 mg per day of dexamethasone to counter a severe rash I had from the stem cell transplant. When I started the cycles again in the first of August, my kappa free light chain level, with no other therapies, had decreased from 178 to 23. I did not know if this was my body attacking the myeloma after the stem cell transplant OR if it was the dex that decreased my kappa level. With the yo-yo effect, I am now leaning towards the dex being the cause of the lower numbers.
One thing I am trying to understand is whether it might be worth just watching my kappa level and starting and stopping treatment to keep it from going above a certain level. Or, if the kappa level levels out at 50, perhaps I could just let it stay there without any treatment.
I guess I'm not clear on how important it is for me to reach a complete response to be able to survive the 10 to 15 years that we all hope to achieve by going through the myeloma therapies that we have to undergo.
Thank you for your time.
Here is the genetics from my bone marrow biopsy in January 2016:
13q14 (RB1): Normal pattern;17p13 (TP53): Normal pattern 14q32 (IGH): Positive for IGH Translocation; (149/174)t(11;14)(q13;q32) (IGH/CCND1): Positive (94/118)t(4;14)(p16;q32)
(MMSET/IGH): Negative t(14;16)(q32;q23) (IGH/MAF): Negative
Interpretation: These findings demonstrate a plasma cell population with t(11;14),indicating a standard risk disease.
I receive subcutaneous injection of Velcade 1.5 mg/m2 time (4 injections per cycle); with 21 days of Revlimid @ 25 mg; along with 40 mg of dex.
I received my 3rd injection of Velcade today of my 3rd cycle after starting back up after my stem cell transplant. I am set to finish my 3rd cycle next week, which is the reason for asking the questions on the forum before I see my doctor, so I will have an idea of what I should do going forward.
I do feel I am in very competent hands with both the University of Miami as my stem cell transplant facility and Cleveland Clinic, where I receive my myeloma care. Both of my doctors are experts and I could not ask for any better medical care.
After the stem cell transplant there was a different view point with my University of Miami doctor and my Cleveland clinic doctor on how to proceed since my kappa light chain increased to 178 with 10 days after I was released from transplant facility. One doctor advised me to just start on the 25 mg of Revlimid and not on the full Velcade, Revlimid, and dexamethasone therapy; whereas the other doctor wanted to – in his words – "hammer" the kappa free light chain number because of my age (46) and good medical condition, to as low as possible. I decided to go with that recommendation.
What is interesting is that during June (after the high 178 Kappa light reading) and July I was placed on 4 mg per day of dexamethasone to counter a severe rash I had from the stem cell transplant. When I started the cycles again in the first of August, my kappa free light chain level, with no other therapies, had decreased from 178 to 23. I did not know if this was my body attacking the myeloma after the stem cell transplant OR if it was the dex that decreased my kappa level. With the yo-yo effect, I am now leaning towards the dex being the cause of the lower numbers.
One thing I am trying to understand is whether it might be worth just watching my kappa level and starting and stopping treatment to keep it from going above a certain level. Or, if the kappa level levels out at 50, perhaps I could just let it stay there without any treatment.
I guess I'm not clear on how important it is for me to reach a complete response to be able to survive the 10 to 15 years that we all hope to achieve by going through the myeloma therapies that we have to undergo.
Thank you for your time.
-
Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Kappa FLC level going up & down during RVD maintenance
Just received my serum free light chain numbers from yesterday, when I received my Velcade and dexamethasone therapy. My kappa number decreased from 43 to 27 between my 2nd and 3rd week of this cycle. Now the question is how to keep it down when I finish this cycle Friday.
Kappa - 27.1 mg/L (3.3-19.4)
Lambda - 2.9 mg/L (5.7-26.3)
Kappa / lambda ratio - 9.34 (0.26-1.65)
Kappa - 27.1 mg/L (3.3-19.4)
Lambda - 2.9 mg/L (5.7-26.3)
Kappa / lambda ratio - 9.34 (0.26-1.65)
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
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