I'm a 56 year old female with high risk, del(17p) kappa light chain multiple myeloma diagnosed in April 2014 (Stage 1).
Since May 2014 I have been on continuous treatment. First induction and then straight into maintenance without a stem cell transplant. I had a good response to treatment and was at a near complete response (nCR). Treatment was in a trial with Empliciti (elotuzumab) plus Revlimid, Velcade, and dexamethasone (RVD). It is a very tolerable treatment and my quality of life has been great. Very few side effects. I celebrated 2 years on this protocol last month - woohoo!
I see that my serum kappa free light chains have been creeping upwards in the last few months, but they would usually never go over 1.53 mg/dL and then would decrease. Now they are creeping past that and this month they were outside of normal range for the first time since remission.
Is this how relapse starts, or is it usually larger increases?
I guess I'm looking for a reason to think this is just a fluctuation that will go back to normal eventually. Or would I still be considered stable disease?
Of course I didn't see these last results until after doctor appointment.
Kappa sFLC
Mar 2016 1.53 mg/dL (0.33-1.94)
Apr 2016 1.53
May 2016 1.84
Jun 2016 2.11 (k/l ratio 2.43)
Thank you for any input.
Forums
Re: Is this the start of relapse?
Those are still very low numbers. So no, I don't think it is necessarily the beginning of a relapse. The numbers would have to be coming up quite a bit higher. However, it should be carefully monitored. It could be that the maintenance will be tweaked some but not yet.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Is this the start of relapse?
Thanks, Ron.
I guess I'm just paranoid these days and waiting for the relapse shoe to drop. I've been doing well for so long and I don't want the honeymoon to end.
I guess I'm just paranoid these days and waiting for the relapse shoe to drop. I've been doing well for so long and I don't want the honeymoon to end.
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Janet1520
Re: Is this the start of relapse?
Hi Janet1520,
I am in a similar situation, though I have not entered a true "maintenance phase" as my kappa free light chains started rising right after dropping the dex from my 'dosing'. I think, based on my discussions with my oncologist, that your kappa level is close the "normal" level and not 'alarming'. My kappa / lambda ratio is close to normal at 1.7, and you may want to discuss the rise in that ratio per your recent lab test with your oncologist.
My kappa readings went from 12.5 mg/L (3.3-19.4 range on this scale) and my kappa / lambda ratio has climbed from 1.05 to 1.7 (0.26 - 1.65 Normal Range). Your post did not mention what your kappa / lambda ratio was back in March.
I, too, went from induction to maintenance and decided against the stem cell transplant. And I have been able to manage most of my activities, particularly after stopping the Velcade and dex. I was feeling quite exhausted towards the end of my 9th Cycle of the RVD Induction phase.
The original plan in late October, 2015 was only to drop the weekly 20 mg dex. However, the 15 mg (3 weeks daily and one week off), without the dex, caused the Revlimid rash and my oncologist changed the Revlimid to an alternate day 15 mg dose. However, my kappa readings (taken every 4 weeks) rose to near 20 and then to 30. My oncologist changed the dosing to 10 mg daily for 3 weeks and 1-week off. That may have caused my kappa to rise to 42.6 per the lab test of the last month. My chart shows that I have had better (lower) kappa readings when I was taking higher Revlimid dose. Therefore, my oncologist changed my Revlimid dose to an alternate day 20 mg 3 weeks ago. It is too early to tell, but I am tolerating this Revlimid dose so far and my kappa came down to 38.2 mg/L, a slight improvement. My kappa / lambda ratio has been close to the normal at 1.7, however.
A couple of months ago, my oncologist advised me that a kappa level of 30 mg/L (or 3.0 mg/dL) is not dangerous and I could 'live' with that for a long time. I had a good 5 months of low kappa (12.5 - 16 mg/L) and kappa / lambda in the normal range after stopping the Velcade shots, just on the dex and Revlimid, and I am concerned that this 30+ kappa level is too high. My oncologist is reluctant to go back to the 20 mg weekly dex (or even a reduced level) because of the long term side effects of the dex. Therefore, he is raising my Revlimid dose to about the level I can tolerate and wants to get more lab results before changing anything else.
Thanks for sharing your experience on the Myeloma Beacon and I would appreciate it very much if you can let me know the Revlimid and or dex dose you have been taking during your maintenance therapy.
I am in a similar situation, though I have not entered a true "maintenance phase" as my kappa free light chains started rising right after dropping the dex from my 'dosing'. I think, based on my discussions with my oncologist, that your kappa level is close the "normal" level and not 'alarming'. My kappa / lambda ratio is close to normal at 1.7, and you may want to discuss the rise in that ratio per your recent lab test with your oncologist.
My kappa readings went from 12.5 mg/L (3.3-19.4 range on this scale) and my kappa / lambda ratio has climbed from 1.05 to 1.7 (0.26 - 1.65 Normal Range). Your post did not mention what your kappa / lambda ratio was back in March.
I, too, went from induction to maintenance and decided against the stem cell transplant. And I have been able to manage most of my activities, particularly after stopping the Velcade and dex. I was feeling quite exhausted towards the end of my 9th Cycle of the RVD Induction phase.
The original plan in late October, 2015 was only to drop the weekly 20 mg dex. However, the 15 mg (3 weeks daily and one week off), without the dex, caused the Revlimid rash and my oncologist changed the Revlimid to an alternate day 15 mg dose. However, my kappa readings (taken every 4 weeks) rose to near 20 and then to 30. My oncologist changed the dosing to 10 mg daily for 3 weeks and 1-week off. That may have caused my kappa to rise to 42.6 per the lab test of the last month. My chart shows that I have had better (lower) kappa readings when I was taking higher Revlimid dose. Therefore, my oncologist changed my Revlimid dose to an alternate day 20 mg 3 weeks ago. It is too early to tell, but I am tolerating this Revlimid dose so far and my kappa came down to 38.2 mg/L, a slight improvement. My kappa / lambda ratio has been close to the normal at 1.7, however.
A couple of months ago, my oncologist advised me that a kappa level of 30 mg/L (or 3.0 mg/dL) is not dangerous and I could 'live' with that for a long time. I had a good 5 months of low kappa (12.5 - 16 mg/L) and kappa / lambda in the normal range after stopping the Velcade shots, just on the dex and Revlimid, and I am concerned that this 30+ kappa level is too high. My oncologist is reluctant to go back to the 20 mg weekly dex (or even a reduced level) because of the long term side effects of the dex. Therefore, he is raising my Revlimid dose to about the level I can tolerate and wants to get more lab results before changing anything else.
Thanks for sharing your experience on the Myeloma Beacon and I would appreciate it very much if you can let me know the Revlimid and or dex dose you have been taking during your maintenance therapy.
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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: Is this the start of relapse?
Hi K_Shash,
Thank you for your post. Yes, it sure seems we have been going down the same road.
You said that you had dropped the dex from your dosing due to long-term side effects. Did you also drop the Velcade for the same reasons, or was it due to the exhaustion? I am finding out there are more people who do not have a stem cell transplant.
My maintenance is similar to yours but slightly different. I take 15 mg Revlimid every day for 21/28 days, along with 12 mg of dex once a week. The 12 mg of dex was such a relief after those 8 cycles of induction at 20 mg 4 times a week. It sounds like your current dose of 20 mg every other day could be the right plan.
I'm sure that was scary to see your kappa free light chain level start rising like that. What is more important: a normal kappa free light chain number or the ratio? My ratio has gone in and out of normal for the last two years. I didn't realize that one could have a kappa free light chain reading of 30 and be ok long term, but I understand your reluctance of having a reading higher than that. I think my doctor had said we could let the kappa free light chain level go as high as 20 before changing treatment.
I don't worry as much about the long term side effects of the dex as my dose is fairly low and having high-risk myeloma I gotta worry more about the "here and now" as I'm not sure how to quantify "long term".
Keep me posted on how you do with your dose changes.
Thank you for your post. Yes, it sure seems we have been going down the same road.
You said that you had dropped the dex from your dosing due to long-term side effects. Did you also drop the Velcade for the same reasons, or was it due to the exhaustion? I am finding out there are more people who do not have a stem cell transplant.
My maintenance is similar to yours but slightly different. I take 15 mg Revlimid every day for 21/28 days, along with 12 mg of dex once a week. The 12 mg of dex was such a relief after those 8 cycles of induction at 20 mg 4 times a week. It sounds like your current dose of 20 mg every other day could be the right plan.
I'm sure that was scary to see your kappa free light chain level start rising like that. What is more important: a normal kappa free light chain number or the ratio? My ratio has gone in and out of normal for the last two years. I didn't realize that one could have a kappa free light chain reading of 30 and be ok long term, but I understand your reluctance of having a reading higher than that. I think my doctor had said we could let the kappa free light chain level go as high as 20 before changing treatment.
I don't worry as much about the long term side effects of the dex as my dose is fairly low and having high-risk myeloma I gotta worry more about the "here and now" as I'm not sure how to quantify "long term".
Keep me posted on how you do with your dose changes.
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Janet1520
Re: Is this the start of relapse?
Thank you so much for sharing the details of your treatment.
At the beginning of my Revlimid, Velcade, and dexamethasone (RVD) treatment, my kappa was 1,070 mg/L and the kappa / lambda ratio was 186. My oncologist started "tapering down" the induction medication after the 8th cycle when my test results showed that my kappa and the kappa / lambda ratio both came down to the 'normal' levels and stabilized in the 'safe' range for about three cycles. Stopping the Velcade shots was the first step and a welcome one for me. No more 70-mile round trip to the chemo lab weekly and, even with the "bubble technique," experiencing some burn around the needle mark. The Revlimid (15 mg daily for 21 days and 7 days off) and dex (20 mg weekly) were left unchanged for the next three cycles during which my kappa level remained below 15 and actually dropped to 12.5! The kappa / lambda ratio also improved from 1.37 to 1.04! This ratio is an indicator of the monoclonal activity, as I understand.
Therefore, as a next logical step, my oncologist wanted to drop my dex and leave the Revlimid dose unchanged. He is in the camp of experts that feel the maintenance treatment should not include dex. I did discuss the opinions of experts like Dr. Heather Landau (of Sloan Kettering) that even a small 8 mg dex taken weekly helps. I was really for the reduced amount of the weekly dex dose but had to defer to my oncologist's recommendation.
I could not tolerate the 15 mg Revlimid 3 weeks on and 1 week off in the absence of the dex and either the reduced Revlimid or the absence of dex has caused my kappa and the kappa / lambda ratio to rise. I think, I hope, that this 20 mg Revlimid taken on alternate days would help bring down my kappa and my kappa / lambda ratio back down to the 'normal' levels. This dosing adds up to 280 mg over the 4 week cycle, compared to the 315 mg I was getting over the 4 weeks with the original dosing. My tabulation indicates that my kappa level changes almost directly to the total amount of Revlimid I take during the 4-week cycles.
As you noted, your oncologist is quite aggressive in considering that the kappa level of 20 may warrant change in your treatment. I have read some accounts on the Beacon of others being advised that they need not worry too much till the kappa goes over 100! I agree with your oncologist's opinion and I have been concerned ever since my kappa rose from 12.6 to 19.7. I transitioned into my new and higher Revlimid dose in the middle of my last cycle and went from a combined total of 210 mg Revlimid to a 250 mg during the last cycle. I hope the next test with the 280 mg over the entire cycle shows a major improvement and my kappa drops down to a 20 +/- level. I am still 'transitioning' from the induction phase to the maintenance phase of my treatment, according to my oncologist.
Out of curiosity, isn't your oncologist concerned that your last kappa reading was 2.11 mg / dL? That would be 21.1 mg/L on the scale on which my lab results are reported. Of course, 20 +/- mg/L level of kappa is nothing to worry about, per my oncologist. There are a lot of myeloma patients doing well on maintenance for over 10+ years and as much as 30+ years (Dan in Arizona) and I personally know of a couple of patients doing well for 15 - 20 years. Therefore, I am sure you can look forward to a very 'long term', too.
You wrote that you, too, opted against the autologous stem cell transplant. Did you have your stem cells harvested after the induction therapy? I did not. I was 68 at the time of that decision last year and with my standard risk myeloma I decided against a 3 to 6 month ordeal at this age. I had about three months of continuous fatigue towards the end of the RVD induction phase. I have been playing golf again though I have to ride a cart now and I can mange only a couple of rounds per week. I seem to have only half as much energy with this Revlimid but I can still manage better than many of my friends in my age group. No complaints, under the circumstances!
Wish you all the best!
At the beginning of my Revlimid, Velcade, and dexamethasone (RVD) treatment, my kappa was 1,070 mg/L and the kappa / lambda ratio was 186. My oncologist started "tapering down" the induction medication after the 8th cycle when my test results showed that my kappa and the kappa / lambda ratio both came down to the 'normal' levels and stabilized in the 'safe' range for about three cycles. Stopping the Velcade shots was the first step and a welcome one for me. No more 70-mile round trip to the chemo lab weekly and, even with the "bubble technique," experiencing some burn around the needle mark. The Revlimid (15 mg daily for 21 days and 7 days off) and dex (20 mg weekly) were left unchanged for the next three cycles during which my kappa level remained below 15 and actually dropped to 12.5! The kappa / lambda ratio also improved from 1.37 to 1.04! This ratio is an indicator of the monoclonal activity, as I understand.
Therefore, as a next logical step, my oncologist wanted to drop my dex and leave the Revlimid dose unchanged. He is in the camp of experts that feel the maintenance treatment should not include dex. I did discuss the opinions of experts like Dr. Heather Landau (of Sloan Kettering) that even a small 8 mg dex taken weekly helps. I was really for the reduced amount of the weekly dex dose but had to defer to my oncologist's recommendation.
I could not tolerate the 15 mg Revlimid 3 weeks on and 1 week off in the absence of the dex and either the reduced Revlimid or the absence of dex has caused my kappa and the kappa / lambda ratio to rise. I think, I hope, that this 20 mg Revlimid taken on alternate days would help bring down my kappa and my kappa / lambda ratio back down to the 'normal' levels. This dosing adds up to 280 mg over the 4 week cycle, compared to the 315 mg I was getting over the 4 weeks with the original dosing. My tabulation indicates that my kappa level changes almost directly to the total amount of Revlimid I take during the 4-week cycles.
As you noted, your oncologist is quite aggressive in considering that the kappa level of 20 may warrant change in your treatment. I have read some accounts on the Beacon of others being advised that they need not worry too much till the kappa goes over 100! I agree with your oncologist's opinion and I have been concerned ever since my kappa rose from 12.6 to 19.7. I transitioned into my new and higher Revlimid dose in the middle of my last cycle and went from a combined total of 210 mg Revlimid to a 250 mg during the last cycle. I hope the next test with the 280 mg over the entire cycle shows a major improvement and my kappa drops down to a 20 +/- level. I am still 'transitioning' from the induction phase to the maintenance phase of my treatment, according to my oncologist.
Out of curiosity, isn't your oncologist concerned that your last kappa reading was 2.11 mg / dL? That would be 21.1 mg/L on the scale on which my lab results are reported. Of course, 20 +/- mg/L level of kappa is nothing to worry about, per my oncologist. There are a lot of myeloma patients doing well on maintenance for over 10+ years and as much as 30+ years (Dan in Arizona) and I personally know of a couple of patients doing well for 15 - 20 years. Therefore, I am sure you can look forward to a very 'long term', too.
You wrote that you, too, opted against the autologous stem cell transplant. Did you have your stem cells harvested after the induction therapy? I did not. I was 68 at the time of that decision last year and with my standard risk myeloma I decided against a 3 to 6 month ordeal at this age. I had about three months of continuous fatigue towards the end of the RVD induction phase. I have been playing golf again though I have to ride a cart now and I can mange only a couple of rounds per week. I seem to have only half as much energy with this Revlimid but I can still manage better than many of my friends in my age group. No complaints, under the circumstances!
Wish you all the best!
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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: Is this the start of relapse?
I didn't realize any maintenance therapy wouldn't include dex. It really is the worst of the meds for most people. It is interesting how you have been able to track your myeloma in relation to the level of Revlimid that you take and that you see that your kappa levels change in direct relation to the Revlimid levels taken over a 4 week period. That analysis must give you comfort and confidence with the 20 mg every other day. I hope you have another month of dropping kappa light chains.
I think my oncologist feels he has to be aggressive and stay aggressive with my treatment due to my high risk status. My understanding is 17p deletion is the worst chromosomal mutation with the worst prognosis, so my doc isn't going to want to let it gain too much momentum. Since I'm in a clinical trial, he can't change dosage as much as would be possible outside of a trial. I have researched some current clinical trials and some say you have to have measurable kappa free light chains above 100, so maybe that's why some docs will wait until the level gets that high so that the patient can qualify for a certain clinical trial. Other trials say the level needs to be over 10 or 20.
At this point, I don't know if my oncologist is concerned with my current kappa free light chain level at 2.11. I didn't get those results until after I had my appointment with him. He wasn't concerned when they were at 1.84 the month before. I think he is so happy that, as a high risk patient, I have been on the same protocol for over 2 years without a stem cell transplant. He probably thinks every extra month I remain in the trial is icing on the cake, despite the increases.
I did have my stem cells collected after 4 months of induction therapy, but it was recommended that I not have a stem cell transplant as he believed that patients with 17p deletion don't generally have much benefit from a transplant (i.e., short remissions). I sure didn't want to go through all that for a short remission, especially since the newer therapies have worked so far. I don't blame you for not wanting a stem cell transplant. It sounds very toxic and some people take more than a year to feel back to normal. And you don't want to miss 3 or 4 months of golf with your friends!
I think my oncologist feels he has to be aggressive and stay aggressive with my treatment due to my high risk status. My understanding is 17p deletion is the worst chromosomal mutation with the worst prognosis, so my doc isn't going to want to let it gain too much momentum. Since I'm in a clinical trial, he can't change dosage as much as would be possible outside of a trial. I have researched some current clinical trials and some say you have to have measurable kappa free light chains above 100, so maybe that's why some docs will wait until the level gets that high so that the patient can qualify for a certain clinical trial. Other trials say the level needs to be over 10 or 20.
At this point, I don't know if my oncologist is concerned with my current kappa free light chain level at 2.11. I didn't get those results until after I had my appointment with him. He wasn't concerned when they were at 1.84 the month before. I think he is so happy that, as a high risk patient, I have been on the same protocol for over 2 years without a stem cell transplant. He probably thinks every extra month I remain in the trial is icing on the cake, despite the increases.
I did have my stem cells collected after 4 months of induction therapy, but it was recommended that I not have a stem cell transplant as he believed that patients with 17p deletion don't generally have much benefit from a transplant (i.e., short remissions). I sure didn't want to go through all that for a short remission, especially since the newer therapies have worked so far. I don't blame you for not wanting a stem cell transplant. It sounds very toxic and some people take more than a year to feel back to normal. And you don't want to miss 3 or 4 months of golf with your friends!
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Janet1520
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