Hello MMFeb16,15 and Mike,
Thanks for the encouragement and thanks for sharing your experience/response details.
MMFeb16,15:
Yes, my oncologist/hematologist concurs with you and with your hematologist's comments. I am sure there is no cause for any immediate concern.
At first glance, I thought my kappa was too high compared to yours. Then I noticed and rechecked that my blood test kappa reading is reported in mg/L (3.30 to 19.40 normal range). Therefore, I assume your latest kappa FLC level is 49 on this scale, i.e. mg/L. And your K/L ratio is the same as mine! Both of these readings are very close for the two of us. I am assuming that your kappa and K/L ratio readings are from the blood tests. One of my wife's colleagues, an oncologist, recommended I start a whole induction therapy and switch to the newer drugs, etc. I wonder if he thought my readings were in mg/dL!
At the time of the discovery of my myeloma, my blood test (serum?) kappa was 853 and the K/L ratio was 127.5. The urine kappa FLC was 9.6 mg/dL at that time in late November 2014. My kappa and K/L ratio both rose rapidly to 1,070 and 186 in 3 weeks after that; just before my RVD induction began. Somehow I did not have any measurable 'M-Spike' but a note that there was a 'Spike in Gamma Region'.
I am a little sensitive to these test results because I decided against the ASCT and also because my kappa was down and stable in the 12.5 mg/L range and the K/L ratio around 1.1 for almost 3 months after stopping the Velcade shots. I have tabulated my blood test results after my dex was stopped and I went on a reduced dose of Revlimid in the mid cycle due to the Revlimid rash I developed on the 11th day after stopping the dex. My oncologist put me on the alternate day 15 mg Revlimid starting a few days after the rash was noticed and later tried the daily 10 mg for 3 weeks and 1 week off.
It seems that my kappa reading went up from 12.5 to 19.7 to 33 and now to 42.6, and the rise almost inversely proportional to the total amount of Revlimid taken over the 4 weeks before each blood test. For some reason, I have been feeling more tired with this daily 10 mg Revlimid for 3 weeks.
All things considered, I suggested to my oncologist and he agreed that I could go to a higher 20 mg Revlimid dose on an alternate day basis from this week. I had much less fatigue and shoulder joint pain when I was on the 15 mg alternate day dosing. I was hoping that this tiredness was an indication of better effectiveness of the 3 weeks on, 1 week off 10 mg dosing but the results were disappointing. Now my main concern is if I can tolerate the 20 mg alternate day dose without any rash. As mikeb had observed, our oncologists want us to find the highest level of Revlimid that we can tolerate.
Thanks again for the valuable insight from your own first-hand experience.
Forums
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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: Induction therapy to maintenance therapy - a transition
I don't understand taking the highest dose that you can tolerate. (I know that seems to be how trials work.) I would like to take the lowest dose that gets the job done. I take 2.5 mg of Revlimid every day and my side effects are manageable and so far it is "controlling" my myeloma.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Induction therapy to maintenance therapy - a transition
Unfortunately for me, I could not tolerate the 15 mg Revlimid dose (as evidenced by the Revlimid rash) without the weekly dex AND the 10 mg Revlimid did not keep my kappa levels under control. Therefore, the lowest level that can 'manage' my myeloma seems to be just a bit higher than what I can tolerate in these 10 mg and 15 mg levels and my oncologist is trying to see if the alternate day 20 mg Revlimid could strike a balance.
There are some reports of patients getting the rash only for a few months but the rash can be dangerous, too. It was a borderline case of Revlimid rash for me even with the dex because I had some spotty rash towards the end of the 15 mg x 21 days on cycle, a couple of times during the induction phase of the therapy.
As I recall, mikeb has had cardiovascular side effects and complications caused by Revlimid. Therefore, his oncologist is trying to find the highest Revlimid dose that he can tolerate, to the best of my recollection.
There are some reports of patients getting the rash only for a few months but the rash can be dangerous, too. It was a borderline case of Revlimid rash for me even with the dex because I had some spotty rash towards the end of the 15 mg x 21 days on cycle, a couple of times during the induction phase of the therapy.
As I recall, mikeb has had cardiovascular side effects and complications caused by Revlimid. Therefore, his oncologist is trying to find the highest Revlimid dose that he can tolerate, to the best of my recollection.
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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: Induction therapy to maintenance therapy - a transition
Thank you K_Shash.
My kappa reading and ratio is from blood. Kappa free light chain serum. My case and yours look very similar.
I like to be free from any chemo and medicine for a couple of months. I am maintaining a strict diet - no sugar, no alcohol, no salt, no meat and white carb.
Thank you again.
My kappa reading and ratio is from blood. Kappa free light chain serum. My case and yours look very similar.
I like to be free from any chemo and medicine for a couple of months. I am maintaining a strict diet - no sugar, no alcohol, no salt, no meat and white carb.
Thank you again.
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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: Induction therapy to maintenance therapy - a transition
My latest kappa reading (reported on 6.8.2016) was only slightly better, down to 38.2 from 42.6. The K/L ratio remained at 1.7. My kappa is reported in mg/L, the normal range: 3.3 - 19.4.
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 current 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 recent history of these blood tests indicates that my kappa level changes almost directly with the total amount of Revlimid I take during the 4-week cycles preceding my routine blood tests. 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 level during the last cycle.
My kappa had risen from 12.5 level to 19.7 when my Revlimid dose was changed in mid-cycle in November last year, due to the Revlimid rash (due to the stopping the dex). At that time I had a combined 255 mg over the 4 weeks before that test. The kappa readings rose to the 30 +/- levels, thereafter, when my dosing was a total of only 210 mg Revlimid every 4 weeks.
I am sure a portion of this increase in my kappa is caused by the abrupt dropping of my weekly dex. Certainly my kappa (and lambda) readings would fluctuate with allergic reactions and other minor factors. However all my other parameters, platelets, WBC, RBC, Hgb, Hct, Eos, lymphs, etc. have been very stable.
Has anyone gone through so many adjustments to the maintenance dosing?
I hope the next test after 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.
I have been able to tolerate this alternate day 20 mg Revlimid without any rash. I am continuing my routine with a weekly round of golf. However, I get breathless walking at my usual pace or while walking up a gentle slope and I get nasty cramps after my golf. Recently, I had some upper right leg muscle pains while just straightening up after bending down. I had a pretty nasty pain a couple of days ago in the muscle behind my right thigh, severe enough that I could not sleep till I took a whole gram of Tylenol and rubbed the muscle below the hip joint with Vicks Vaporub. I would appreciate it very much if anybody else can relate to that and if you have any advice.
I consider that I am still transitioning into the maintenance phase (and not a relapse) since my oncologist is adjusting my dosing. He has advised me that these kappa Levels (and near normal K/L ratio) are not dangerous and do not warrant adding the dex back to my regimen, even at the weekly 8 mg level. Any comments?
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 current 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 recent history of these blood tests indicates that my kappa level changes almost directly with the total amount of Revlimid I take during the 4-week cycles preceding my routine blood tests. 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 level during the last cycle.
My kappa had risen from 12.5 level to 19.7 when my Revlimid dose was changed in mid-cycle in November last year, due to the Revlimid rash (due to the stopping the dex). At that time I had a combined 255 mg over the 4 weeks before that test. The kappa readings rose to the 30 +/- levels, thereafter, when my dosing was a total of only 210 mg Revlimid every 4 weeks.
I am sure a portion of this increase in my kappa is caused by the abrupt dropping of my weekly dex. Certainly my kappa (and lambda) readings would fluctuate with allergic reactions and other minor factors. However all my other parameters, platelets, WBC, RBC, Hgb, Hct, Eos, lymphs, etc. have been very stable.
Has anyone gone through so many adjustments to the maintenance dosing?
I hope the next test after 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.
I have been able to tolerate this alternate day 20 mg Revlimid without any rash. I am continuing my routine with a weekly round of golf. However, I get breathless walking at my usual pace or while walking up a gentle slope and I get nasty cramps after my golf. Recently, I had some upper right leg muscle pains while just straightening up after bending down. I had a pretty nasty pain a couple of days ago in the muscle behind my right thigh, severe enough that I could not sleep till I took a whole gram of Tylenol and rubbed the muscle below the hip joint with Vicks Vaporub. I would appreciate it very much if anybody else can relate to that and if you have any advice.
I consider that I am still transitioning into the maintenance phase (and not a relapse) since my oncologist is adjusting my dosing. He has advised me that these kappa Levels (and near normal K/L ratio) are not dangerous and do not warrant adding the dex back to my regimen, even at the weekly 8 mg level. Any comments?
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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: Induction therapy to maintenance therapy - a transition
K_Shash,
Regarding Revlimid, I had a lot of problems with it after my transplant when it was used a part of my maintenance program. The myeloma specialist wanted me to be on a modified version of induction,(RVD), due to addition of chromosome 1 (high risk genetics, according to most multiple myeloma experts, although not Mayo). So, I started maintenance with 5 mg of Revlimid, (21/7), Velcade injection (subq) every other week, with 12 mg of IV dex. My induction was with 10 mg of Revlimid, which gave me side effects, but tolerable ones (mostly GI issues, although some muscle cramping, as well).
About 6 months into the maintenance phase, I began to develop really painful muscle cramps, mostly notably in my trunk, but also in my extremeties, as well. It was really more than muscle "cramps." My muscles became rather stiff and I had would have frequent muscle pain in addition to cramping. For example, one day, I bent down to pick something up and I developed a severe pain in my chest, which felt like a cramp, but never really went away. After a couple of days, I had to go to the emergency room, because I thought perhaps it was my heart. (Although in retrospect, if it had been my heart, I doubt very much I would have been walking around.) In any event, it was not my heart, but I did have muscle inflammation, as evidenced by an elevated CPK level. At this point, my oncologist took me off all the maintenance meds, even though I was pretty sure it was the Revlimid causing the problems, even at 5 mg.
Off all meds, CPK returned to normal. My oncologist suggested we just "watch and wait," and not use any maintenance meds at all. That made me pretty nervous, even though I was in CR. So, I elected to go back on the Velcade and dex, which I am still on. So far, no problems with my muscles, so I believe I was right that the culprit was the Revlimid. Oncologist not ready to admit I may have been right.
I have to say, K_Shash, if you are concerned about your light chain levels, maybe you could go back on the small dose of dex? 8 mg is pretty low, less than what I take. I know you are a small person (as am I), but 8 mg is a really minimal dose. What are your objections? Do you get really bad side effects from it? Also, it would help with the Revlimid rash you seem to be getting.
I find the Velcade / dex combo pretty tolerable. I did have a couple of dose interruptions because I had the flu in April, and a bout of asthmatic bronchitis in May, but otherwise, I have been able to handle it. Of course, I have 2 doctor appointments every month to get the Velcade injection / dex IV, but that's not so bad. I get to talk to the doctor with any concerns I may have.
I think I remember that you had problems tolerating Velcade. But could you do dex orally with the Revlimid, twice per month? I think it would bring down those light chains and maybe cause you less worry.
Good luck ... let us know what you decide.
Ellen Harris
Regarding Revlimid, I had a lot of problems with it after my transplant when it was used a part of my maintenance program. The myeloma specialist wanted me to be on a modified version of induction,(RVD), due to addition of chromosome 1 (high risk genetics, according to most multiple myeloma experts, although not Mayo). So, I started maintenance with 5 mg of Revlimid, (21/7), Velcade injection (subq) every other week, with 12 mg of IV dex. My induction was with 10 mg of Revlimid, which gave me side effects, but tolerable ones (mostly GI issues, although some muscle cramping, as well).
About 6 months into the maintenance phase, I began to develop really painful muscle cramps, mostly notably in my trunk, but also in my extremeties, as well. It was really more than muscle "cramps." My muscles became rather stiff and I had would have frequent muscle pain in addition to cramping. For example, one day, I bent down to pick something up and I developed a severe pain in my chest, which felt like a cramp, but never really went away. After a couple of days, I had to go to the emergency room, because I thought perhaps it was my heart. (Although in retrospect, if it had been my heart, I doubt very much I would have been walking around.) In any event, it was not my heart, but I did have muscle inflammation, as evidenced by an elevated CPK level. At this point, my oncologist took me off all the maintenance meds, even though I was pretty sure it was the Revlimid causing the problems, even at 5 mg.
Off all meds, CPK returned to normal. My oncologist suggested we just "watch and wait," and not use any maintenance meds at all. That made me pretty nervous, even though I was in CR. So, I elected to go back on the Velcade and dex, which I am still on. So far, no problems with my muscles, so I believe I was right that the culprit was the Revlimid. Oncologist not ready to admit I may have been right.
I have to say, K_Shash, if you are concerned about your light chain levels, maybe you could go back on the small dose of dex? 8 mg is pretty low, less than what I take. I know you are a small person (as am I), but 8 mg is a really minimal dose. What are your objections? Do you get really bad side effects from it? Also, it would help with the Revlimid rash you seem to be getting.
I find the Velcade / dex combo pretty tolerable. I did have a couple of dose interruptions because I had the flu in April, and a bout of asthmatic bronchitis in May, but otherwise, I have been able to handle it. Of course, I have 2 doctor appointments every month to get the Velcade injection / dex IV, but that's not so bad. I get to talk to the doctor with any concerns I may have.
I think I remember that you had problems tolerating Velcade. But could you do dex orally with the Revlimid, twice per month? I think it would bring down those light chains and maybe cause you less worry.
Good luck ... let us know what you decide.
Ellen Harris
Re: Induction therapy to maintenance therapy - a transition
Thank you so much Ellen, for taking the time to address a lot of my concerns.
I may be addressing some of your points in a reverse order:
No, I am not against taking at least 8 mg of dex (as was recommended by Beacon Medical Advisor Dr. Heather Landau, and also by another myeloma specialist who works with my wife). I have discussed that with my oncologist at least a couple of times, citing the Beacon post at least once. My oncologist is, however, pretty much against dex, so far. I personally think I would be able to tolerate the 8 mg weekly dose of dex, but I have to defer to my oncologist since he has been right about my overall chemo regimen all along. He wants to see a few more test results before changing anything else and he, too, believes that I am responding well to the Revlimid and tolerating this current dose of 20 mg every alternate day. These tests are repeated every 4 weeks and it would take a few months before any specific conclusions can be reached. Therefore, the feedback like yours is very helpful.
I did tolerate the RVD treatment quite well during the first 3 months. I had a nasty flu, my kappa and kappa / lambda ratio both reversed course and rose abruptly and it took two more months to be back on track; back in early 2015. I started getting pretty noticeable fatigue only after a total of 6 cycles of the Induction regimen.
Actually the Velcade (a total of 9 shots, 4 weeks apart) was dropped by my oncologist as a first step of the 'tapering down' from the Induction treatment to the maintenance. I think it took a few months before I felt a little stronger and started taking longer walks and also playing a weekly round of golf. I am not sure if that was due to the dropping off of the Velcade or the dex. I still ask my oncologist why we should not try a 8 or 12 mg dex with the original Revlimid because I had 3 months of low kappa (12.5) and low kappa / lambda ratio (1.04) AFTER stopping the Velcade. He is of the opinion that the lower kappa and the lower kappa / lambda ratio are not worth the long term effects of the dex, even at the reduced levels. Again, he is not as concerned about my kappa readings being around 30+/-. I believe that is because there is very low probability that such levels can cause any harm to the kidneys or to any other organs.
I think your earlier experience with the Revlimid side effects (after 6 months of maintenance) seem to be quite similar to mine during my Induction phase. I recently experienced the muscle pain in the outer part of my right thigh when I straighten up after bending down and in my shoulders (particularly when I raise my arms over my shoulders to put on or take off a shirt). Different muscles in my case, but the cause may still be the Revlimid! These muscle pains seem to coincide with the end of the first cycle of the higher Revlimid level (20 mg every alternate day). Then there is that concern about dangerous bone lesions that may result in a broken bone. I have had another 'whole body' x-ray analysis a few months ago and my oncologist advised me that there was no cause for concern and I could continue with my physical activities.
In general, though, I have tolerated Revlimid quite well and I would like to stay with it and avoid the weekly 70 mile round trip for the subQ Velcade shot, which I believe warrants the dex boost. I hope there is some supplement for the muscle strength and with that I can manage well with the current dose of Revlimid for a long time. After all, my kappa was quite stable around 30 when I was on the alternate day 15 mg Revlimid.
I am glad the latest lab results show a reversal of the trend (rising kappa) and I am hoping that my kappa levels come down to the 30 - or preferably 20 - levels soon. At 69, I am not sure how much the 'aging' factor' is to blame for the reduced stamina, either. The sudden exhaustion I feel while walking at a fast pace or while walking up a slight incline seem to be 'drug induced', though.
As to the kappa level, I am not sure what I should be comfortable with; during the maintenance. Therefore, the experience and feedback from other patients like yourself is so valuable to me. I was afraid that after the 3 months of kappa around 12.5, in the middle of the 3.3 - 19.4 mg/L range, the 30 +/- mg/L level was dangerous. Now I am not sure that that level is dangerous at all. Certainly, it may not be a "relapse".
Thanks again and I hope you continue to do well with your maintenance and tolerate it well, too.
I may be addressing some of your points in a reverse order:
No, I am not against taking at least 8 mg of dex (as was recommended by Beacon Medical Advisor Dr. Heather Landau, and also by another myeloma specialist who works with my wife). I have discussed that with my oncologist at least a couple of times, citing the Beacon post at least once. My oncologist is, however, pretty much against dex, so far. I personally think I would be able to tolerate the 8 mg weekly dose of dex, but I have to defer to my oncologist since he has been right about my overall chemo regimen all along. He wants to see a few more test results before changing anything else and he, too, believes that I am responding well to the Revlimid and tolerating this current dose of 20 mg every alternate day. These tests are repeated every 4 weeks and it would take a few months before any specific conclusions can be reached. Therefore, the feedback like yours is very helpful.
I did tolerate the RVD treatment quite well during the first 3 months. I had a nasty flu, my kappa and kappa / lambda ratio both reversed course and rose abruptly and it took two more months to be back on track; back in early 2015. I started getting pretty noticeable fatigue only after a total of 6 cycles of the Induction regimen.
Actually the Velcade (a total of 9 shots, 4 weeks apart) was dropped by my oncologist as a first step of the 'tapering down' from the Induction treatment to the maintenance. I think it took a few months before I felt a little stronger and started taking longer walks and also playing a weekly round of golf. I am not sure if that was due to the dropping off of the Velcade or the dex. I still ask my oncologist why we should not try a 8 or 12 mg dex with the original Revlimid because I had 3 months of low kappa (12.5) and low kappa / lambda ratio (1.04) AFTER stopping the Velcade. He is of the opinion that the lower kappa and the lower kappa / lambda ratio are not worth the long term effects of the dex, even at the reduced levels. Again, he is not as concerned about my kappa readings being around 30+/-. I believe that is because there is very low probability that such levels can cause any harm to the kidneys or to any other organs.
I think your earlier experience with the Revlimid side effects (after 6 months of maintenance) seem to be quite similar to mine during my Induction phase. I recently experienced the muscle pain in the outer part of my right thigh when I straighten up after bending down and in my shoulders (particularly when I raise my arms over my shoulders to put on or take off a shirt). Different muscles in my case, but the cause may still be the Revlimid! These muscle pains seem to coincide with the end of the first cycle of the higher Revlimid level (20 mg every alternate day). Then there is that concern about dangerous bone lesions that may result in a broken bone. I have had another 'whole body' x-ray analysis a few months ago and my oncologist advised me that there was no cause for concern and I could continue with my physical activities.
In general, though, I have tolerated Revlimid quite well and I would like to stay with it and avoid the weekly 70 mile round trip for the subQ Velcade shot, which I believe warrants the dex boost. I hope there is some supplement for the muscle strength and with that I can manage well with the current dose of Revlimid for a long time. After all, my kappa was quite stable around 30 when I was on the alternate day 15 mg Revlimid.
I am glad the latest lab results show a reversal of the trend (rising kappa) and I am hoping that my kappa levels come down to the 30 - or preferably 20 - levels soon. At 69, I am not sure how much the 'aging' factor' is to blame for the reduced stamina, either. The sudden exhaustion I feel while walking at a fast pace or while walking up a slight incline seem to be 'drug induced', though.
As to the kappa level, I am not sure what I should be comfortable with; during the maintenance. Therefore, the experience and feedback from other patients like yourself is so valuable to me. I was afraid that after the 3 months of kappa around 12.5, in the middle of the 3.3 - 19.4 mg/L range, the 30 +/- mg/L level was dangerous. Now I am not sure that that level is dangerous at all. Certainly, it may not be a "relapse".
Thanks again and I hope you continue to do well with your maintenance and tolerate it well, too.
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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: Induction therapy to maintenance therapy - a transition
Hi MMFeb16,15
You had written about a month ago that you were off all the chemo for a while and were going to stay off unless your kappa or kappa / lambda ratio started rising. I can certainly agree with that approach as our QOL is of the utmost concern to us all.
I hope you are doing very well and all your tests are showing that your kappa and kappa / lambda are still stable. All the best.
You had written about a month ago that you were off all the chemo for a while and were going to stay off unless your kappa or kappa / lambda ratio started rising. I can certainly agree with that approach as our QOL is of the utmost concern to us all.
I hope you are doing very well and all your tests are showing that your kappa and kappa / lambda are still stable. 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: Induction therapy to maintenance therapy - a transition
Hi K_Shash,
Good to hear from you, but sorry to hear you're having some issues.
I think my oncologist would tend to agree with your oncologist. I asked my oncologist awhile back about what he thought of me possibly adding low dex to the low Revlimid that I'm on, and he said he does not consider Revlimid and dex to be maintenance treatment. His thinking is that he doesn't want someone to be on dex long term. I don't know whether an 8 mg dose of dex (like you and Ellen have been discussing) would be low enough for him to change his mind.
Your case made me think about something I saw in Myeloma Morning a few weeks ago. The May 20 post had a short discussion near the bottom about a study from the University of Iowa that questions the use of free light chain results as part of the definition of stringent CR. They found that a slightly high kappa / lambda ratio caused by a high kappa is not always a predictor of relapse. Sounds like your situation.
Best wishes to you.
Mike
Good to hear from you, but sorry to hear you're having some issues.
I think my oncologist would tend to agree with your oncologist. I asked my oncologist awhile back about what he thought of me possibly adding low dex to the low Revlimid that I'm on, and he said he does not consider Revlimid and dex to be maintenance treatment. His thinking is that he doesn't want someone to be on dex long term. I don't know whether an 8 mg dose of dex (like you and Ellen have been discussing) would be low enough for him to change his mind.
Your case made me think about something I saw in Myeloma Morning a few weeks ago. The May 20 post had a short discussion near the bottom about a study from the University of Iowa that questions the use of free light chain results as part of the definition of stringent CR. They found that a slightly high kappa / lambda ratio caused by a high kappa is not always a predictor of relapse. Sounds like your situation.
Best wishes to you.
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
Re: Induction therapy to maintenance therapy - a transition
Thanks, Mike.
I just read the article you referred to, the last topic (glad you pointed out where to look in this long report) with the following section title:
Reliability Of The Serum Free Light Chain Ratio In Assessing Treatment Response
Fortunately my kappa / lambda ratio has been 1.7, just above the 0.26 - 1.65 currently accepted 'normal range'. I am not sure how this and the normal kappa range are calculated. At least in most cases, these reading are never measured until multiple myeloma is suspected. I am sure this 'normal range" was established after special studies of non-myeloma people.
I agree that just about half the oncologists recommend NOT using dex for maintenance. I vaguely remember the Beacon conducted a survey on this topic recently.
At least my oncologist thinks that even the 8 mg dex is not a good idea and I am assuming that your oncologist is of the same opinion. More and more, I am beginning to agree with this. It has been rather confusing because I have different advice coming in from oncologists (actively treating myeloma patients) who work with my wife, a couple of oncologists (recent grads) who are my son's friends, etc. Even my own oncologist's colleague who saw me during the early stage of my induction phase (because my oncologist was on a long vacation) differed with my oncologist about ASCT. As I have read here on the Beacon, there are different opinions on this topic, as expressed by the various oncologists treating the contributing members of the Beacon.
I have had one of the oncologists advise my wife that I should consider undergoing the induction chemo with a newer novel drug replacing the Revlimid! We think he may have misunderstood that my kappa is reported in mg/L, not mg/dL!
My concern was based on these kappa and kappa / lambda readings that continued to drop for 3 months after my Velcade shots were dropped. But these readings rose rapidly, almost immediately after the dex was stopped. My oncologist's plan was only to drop the dex and leave the Revlimid dose alone. However, I developed the Revlimid rash in the absence of the dex. Now, after 8 more 4-week cycles, I am convinced that the lower Revlimid doses caused my kappa and kappa / lambda to rise abruptly. These readings were pretty stable, kappa around 30 and kappa / lambda around 1.7 for 6 cycles and only rose to the 40 +/- level when I went back on the 21 days on and 7 days off Revlimid dosing with 10 mg from the alternate day dosing of 15 mg. Now that I am tolerating a Revlimid dosing (20 mg every alternate day) of almost the original 'overall level', I am pretty sure I will have 30- kappa readings again soon.
Thanks to your feedback, I feel more comfortable about this 30+/- kappa level. My oncologist had advised me a few months ago that I could 'live' with this level of kappa for a very, very long time! I was the one who urged him to try something different when my kappa readings went to 33 and now I think I should not have been concerned about it at all.
This discussion is very useful because now I will feel quite comfortable in settling into a maintenance phase (without worrying about relapse as long as the kappa and kappa / lambda are stable) at these levels, even if my alternate day Revlimid is reduced to 15 mg, IF I develop the rash or other side effects. Thanks again for citing that University of Iowa study buried in that article in your post.
I just read the article you referred to, the last topic (glad you pointed out where to look in this long report) with the following section title:
Reliability Of The Serum Free Light Chain Ratio In Assessing Treatment Response
Fortunately my kappa / lambda ratio has been 1.7, just above the 0.26 - 1.65 currently accepted 'normal range'. I am not sure how this and the normal kappa range are calculated. At least in most cases, these reading are never measured until multiple myeloma is suspected. I am sure this 'normal range" was established after special studies of non-myeloma people.
I agree that just about half the oncologists recommend NOT using dex for maintenance. I vaguely remember the Beacon conducted a survey on this topic recently.
At least my oncologist thinks that even the 8 mg dex is not a good idea and I am assuming that your oncologist is of the same opinion. More and more, I am beginning to agree with this. It has been rather confusing because I have different advice coming in from oncologists (actively treating myeloma patients) who work with my wife, a couple of oncologists (recent grads) who are my son's friends, etc. Even my own oncologist's colleague who saw me during the early stage of my induction phase (because my oncologist was on a long vacation) differed with my oncologist about ASCT. As I have read here on the Beacon, there are different opinions on this topic, as expressed by the various oncologists treating the contributing members of the Beacon.
I have had one of the oncologists advise my wife that I should consider undergoing the induction chemo with a newer novel drug replacing the Revlimid! We think he may have misunderstood that my kappa is reported in mg/L, not mg/dL!
My concern was based on these kappa and kappa / lambda readings that continued to drop for 3 months after my Velcade shots were dropped. But these readings rose rapidly, almost immediately after the dex was stopped. My oncologist's plan was only to drop the dex and leave the Revlimid dose alone. However, I developed the Revlimid rash in the absence of the dex. Now, after 8 more 4-week cycles, I am convinced that the lower Revlimid doses caused my kappa and kappa / lambda to rise abruptly. These readings were pretty stable, kappa around 30 and kappa / lambda around 1.7 for 6 cycles and only rose to the 40 +/- level when I went back on the 21 days on and 7 days off Revlimid dosing with 10 mg from the alternate day dosing of 15 mg. Now that I am tolerating a Revlimid dosing (20 mg every alternate day) of almost the original 'overall level', I am pretty sure I will have 30- kappa readings again soon.
Thanks to your feedback, I feel more comfortable about this 30+/- kappa level. My oncologist had advised me a few months ago that I could 'live' with this level of kappa for a very, very long time! I was the one who urged him to try something different when my kappa readings went to 33 and now I think I should not have been concerned about it at all.
This discussion is very useful because now I will feel quite comfortable in settling into a maintenance phase (without worrying about relapse as long as the kappa and kappa / lambda are stable) at these levels, even if my alternate day Revlimid is reduced to 15 mg, IF I develop the rash or other side effects. Thanks again for citing that University of Iowa study buried in that article in your post.
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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
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